I am going to post an email I recently received (With the permission of the person who emailed me). This is the kind of email I get almost daily, sometimes several times a day from people. I want others to see that I am not the only one.
"Dear Brian
It's 1:22 a.m. and I just finished listening to your complete video set on You Tube. I have been taking Xanax now for 3 years and realizing I am addicted, went to my doctor to go off this medication. I have recently moved to a small town and my new doctor here is upset that the psychiatrist who prescribed Xanax for three years did so for that long. My new doctor said it was meant only for a few weeks and only when necessary. Up until January 26 of this year, I have been taking "only" .5mg twice daily for three years. On January 27th he has reduced that to .5mg once a day until February 3-9 when I will take .5 every second day, then off. These are my doctor's instructions. So in 3 weeks, I will not be taking Xanax at all. I'm really afraid about this, as it seems too fast for me.
I suffer from anxiety, panic attacks, depression and PTSD, so I relate to you very much in what you have been going through. I too live alone and do not have much support from family or the medical community. I did have an experience that made me realize just how bad I had gotten. My sister and her son, who I had not seen in seven years, told me I wasn't the same person anymore - that I am very slow moving and talking and don't have much expression on my face. The word I use to described myself is numb. I can't cry or feel emotion when anything serious happened. That is until today when I cried for the first time in years because of my withdrawal. Normally, I am a very caring woman and and sensitive to other people. But that has been dimmed by medication.
This is my 4th day of decreasing Xanax and today was my worst day yet. On the second day, I felt really good, like my old self but with time everything hit me with severity. I have to stop and rest every few minutes from typing because my arms are very painful and heavy. My arms, head and face start to tremor, I feel my lips quivering, I have electrical shocks through my body that throw my arms and head up off the pillow whether I am awake or sleeping. I have nausea and diarrhea, along with no appetite. I don't have the strength to cook so I will eat whatever is handy like a piece of pie, banana, milk. I have bad muscle pains everywhere especially on my left side, which makes me think I am having a heart attack. So then the panic comes in. Especially when I am lying down, my jaw tightens to the point that I can't move it or talk. This morning I was walking up the hall and my legs kept steering to the very left of the hall towards the wall. I had no control. So I did it again. I realized my legs were doing the opposite of my brain. Lying in bed today my body had tremors so bad, I thought I was having a seizure. Not sure what that was but my eyes rolled and I felt I was losing it while my head and body went crazy. My feet are badly swollen and my eyes have a rash-like redness to them. Sometimes when I wake up, my eyes are completely swollen and sensitive to light.
The worst part now is during the day up until I take my .5 at bedtime. I formerly took one after breakfast and one before bedtime. I chose to stop the pill in the morning rather than night as I thought this would help me sleep better to continue with Xanax before bed. This is why I am able to write this letter now because of my night "relief". Today in between withdrawals, I slept from sheer exhaustion throughout the day - sleeping is no problem at all so far.
I have never written anyone before that I don't know, but felt you are the only one who could understand me and what I am going through. Could you please tell me what you think of the schedule of reducing Xanax? I am very fearful that this is too fast and that something bad is going to happen to me. I realize that you are not a professional, but I have no faith in doctors as it was a doctor who got me in this mess in the first place. So I welcome your opinion on this, please.
One thing I haven't mentioned is that I also take 100 mg Wellabutrin and 20 mg Paroxetine, which I believe is Paxil. I have been taking these pills like a robot and I am at times not even sure if I am taking the right dosage because of my state of mind. Because of anxiety, I also developed high blood pressure and take medication for that too.
All day I have been looking for someone to talk to but no one was home. I even called the pharmacy and they were closed. I really felt like I am going crazy, so I went online and searched and found you. Thank you for telling your experience. It helps me keep in my mind that things will change for the better and to hold on tight to my precious life. Yes, I have had thoughts today of not living but I know that there are better days ahead and try to be strong.
Thank you again, Brian. I hope I have made sense, because to me I don't make sense at all :o)"
My reply:
"In my opinion yes that is too fast of a taper, especially since you have been taking this drug for so long. To make this easier many people have switched over to valium because it has a longer half life than Xanax, then they taper down off that drug.
Everything that you are feeling right now is normal. The good news is not everyone has the withdrawal effect last as long as I and others have had. You might just have a bad few weeks or a month.
The blood pressure may not be from your anxiety, but could have been caused by the antidepressants you are taking, but that is for another time, as for now focus on coming off the Xanax.
I would however get in touch with your doctor and try to switch over to Valium. If that doctor will not do it try and call another and see if s/he would be willing too. I did not know about being able to switch over, which made my withdrawal so much worse for me.
Also please go to http://www.benzowithdrawal.com and tell them what you told me. So many people are there that have gone through or are going through what you are right now, so you do not have to feel alone. That site saved my life. They can also tell you how much Valium would be equal to the dose of Xanax you are taking, off the top of my head I can not remember the equivalency chart for benzos.
Almost everything you are experiencing right now I have experienced myself and the ones that you list that I haven't.. I have read about other people on that site and other sites have had that happen, so you are not losing your mind. :)
I am very thankful you found my video and I hope that site can help you. Also feel free to email me with questions should you need too. I will do my best to point you in the right direction.
Brian"
Sunday, January 31, 2010
Benzodiazepine Class Action
OK, I am going to try this route first. It is free and if a lawyer is interested they will contact me. The more people that sign on, the more likely a law firm will take interest and take it on as a class action. The site SueEasy has been up for several years and was featured on CNN. If this doesn't work I will personally try to find a local lawyer who does Class Actions. Lets see how many people sign on. Feel free to tell others about it who maybe interested. I am trying to find an edit button on that site because I wrote "What" instead of "Watch" and it is driving me crazy.
Anyway, your private information when you sign up for the site is not displayed.
"My name is Brian Baxter and I live in Albany, NY. I have been injuried by taking generic Xanax (Alprazolam) a benzodiazepine.
Benzodiazepines are drugs such as Xanax (Alprazolam), Librium (Chlordiazepoxide), Klonopin (Clonazepam), Valium (Diazepam), and Ativan (Lorazepam) among others.
Over the past year of being sick after coming off Alprazolam I have seen countless doctors and have received no help except the denial that these medications can injury people in the way that I have been. Turning to the internet I have found 1000's of other people that have taken a benzodiazepine and have been injured in the same fashion that I have.
To hear my full story up till August 2009 please watch my story http://blip.tv/file/2507763/
Everyday I continue to get emails from others who have been injured by this class of drugs and the forums I have become a part of have new members all the time looking for help. People stay sick on average for 6 to 18 months and indeed longer.
If you have been injured or damaged by a benzodiazepine please sign up for this class action.
To date if I stand I get very high heart rates 120+ beats per minute. Taking a shower my pulse is 140+ beats per minute. I have severe fatigue and severe gastric disturbances along with a list of other medical issues that were not present before being on Alprazolam.
My hope is to go after the companies who make these benzodiazepines and bring public awareness to this problem. People have suffered alone in silence too long."
If you have been injured by a benzo please click here to sign up. http://www.sueeasy.com/class_action_detail.php?case_id=389
Anyway, your private information when you sign up for the site is not displayed.
"My name is Brian Baxter and I live in Albany, NY. I have been injuried by taking generic Xanax (Alprazolam) a benzodiazepine.
Benzodiazepines are drugs such as Xanax (Alprazolam), Librium (Chlordiazepoxide), Klonopin (Clonazepam), Valium (Diazepam), and Ativan (Lorazepam) among others.
Over the past year of being sick after coming off Alprazolam I have seen countless doctors and have received no help except the denial that these medications can injury people in the way that I have been. Turning to the internet I have found 1000's of other people that have taken a benzodiazepine and have been injured in the same fashion that I have.
To hear my full story up till August 2009 please watch my story http://blip.tv/file/2507763/
Everyday I continue to get emails from others who have been injured by this class of drugs and the forums I have become a part of have new members all the time looking for help. People stay sick on average for 6 to 18 months and indeed longer.
If you have been injured or damaged by a benzodiazepine please sign up for this class action.
To date if I stand I get very high heart rates 120+ beats per minute. Taking a shower my pulse is 140+ beats per minute. I have severe fatigue and severe gastric disturbances along with a list of other medical issues that were not present before being on Alprazolam.
My hope is to go after the companies who make these benzodiazepines and bring public awareness to this problem. People have suffered alone in silence too long."
If you have been injured by a benzo please click here to sign up. http://www.sueeasy.com/class_action_detail.php?case_id=389
Saturday, January 30, 2010
Tuesday, January 26, 2010
One Of My Favorite Teachers
In 9th grade (1990), I had a great Math teacher named Mrs. Kippen. She is one of those teachers that sticks out because she was kind and very helpful. Some teaches and in my experience, Math teaches, could be impatient when someone (me) didn't understand a Math problem. I have had my share of bad Math teachers. However she was different..in fact she is the reason why I understand Math at all I think. She really took time to explain it to me and when I didn't get it, she would say "Well, think of it this way...". She is the solo reason why I understand the pythagorean theorem.
There was this girl in my 9th grade class, who was pregnant and Mrs. Kippen helped her by talking to her and if I remember correctly, got her to talk to the school therapist, so she could tell her mother.
Mrs. Kippen was truly one of these best teachers I had. You know the good ones, because they are the ones who you remember and the ones who never knew how much they affected your life.
Mrs Kippen committed suicide recently. My thoughts are with her family.
Taken from the Times Union:
Albany teacher remembered as 'a very special person'
By PAUL GRONDAHL, Staff writer
Last updated: 3:24 p.m., Tuesday, January 26, 2010
ALBANY-- Students, teachers and staff are mourning the sudden death of longtime Albany High School math teacher Dierdre Kippen, who apparently jumped off a highway bridge into the Hudson River and died Monday.
Family members confirmed today that the body of a 48-year-old woman pulled by authorities from the water beneath the bridge that carries the Thruway's Berkshire Spur over the river was Kippen's.
She lived in Troy, was married and the mother of two children, one in high school and the other college-aged.
"We didn't have any idea at all. She showed no outward signs," said Paul Sherman, a brother-in-law, who last saw Kippen at a large family Christmas celebration.
Today, grief counselors and additional staff were at the school, where students are taking Regents exams.
Kippen was called "an excellent teacher who cared deeply about her students" by interim superintendent Raymond Colucciello. "She was always willing to give extra time and effort to help them be successful," he said.
Colucciello and principal David McCalla informed staff of Kippen's death at the start of school today.
Kippen started with the district in 1984. "She will be sorely missed by the Albany school district family," Colucciello said. "Our thoughts and prayers are with her family at this difficult time."
"She was loved by all she touched," Sherman said. "She was a very special person and we're having a hard time."
http://www.timesunion.com/AspStories/story.asp?storyID=893502
There was this girl in my 9th grade class, who was pregnant and Mrs. Kippen helped her by talking to her and if I remember correctly, got her to talk to the school therapist, so she could tell her mother.
Mrs. Kippen was truly one of these best teachers I had. You know the good ones, because they are the ones who you remember and the ones who never knew how much they affected your life.
Mrs Kippen committed suicide recently. My thoughts are with her family.
Taken from the Times Union:
Albany teacher remembered as 'a very special person'
By PAUL GRONDAHL, Staff writer
Last updated: 3:24 p.m., Tuesday, January 26, 2010
ALBANY-- Students, teachers and staff are mourning the sudden death of longtime Albany High School math teacher Dierdre Kippen, who apparently jumped off a highway bridge into the Hudson River and died Monday.
Family members confirmed today that the body of a 48-year-old woman pulled by authorities from the water beneath the bridge that carries the Thruway's Berkshire Spur over the river was Kippen's.
She lived in Troy, was married and the mother of two children, one in high school and the other college-aged.
"We didn't have any idea at all. She showed no outward signs," said Paul Sherman, a brother-in-law, who last saw Kippen at a large family Christmas celebration.
Today, grief counselors and additional staff were at the school, where students are taking Regents exams.
Kippen was called "an excellent teacher who cared deeply about her students" by interim superintendent Raymond Colucciello. "She was always willing to give extra time and effort to help them be successful," he said.
Colucciello and principal David McCalla informed staff of Kippen's death at the start of school today.
Kippen started with the district in 1984. "She will be sorely missed by the Albany school district family," Colucciello said. "Our thoughts and prayers are with her family at this difficult time."
"She was loved by all she touched," Sherman said. "She was a very special person and we're having a hard time."
http://www.timesunion.com/AspStories/story.asp?storyID=893502
Gastroenterologist
I saw the gastroenterologist on Monday. I don't really like her, she came off cold to me and at times it seemed like she was having a hard time following what I was saying and she would put words in my mouth and I would have to keep correcting her. I also don't know what it is about doctors not being able to read a small amount of text that you write for them. For example I wrote in reference to my lung function test. "I had a lung function test, 80-120 is considered normal with 80 being the lower end of normal. I was 72." She says to me as she is reading "OK, so you lung test was normal." to which I had to correct her. Symptoms are breezed over and my constipation issue in her mind became my "chronic diarrhea issue". Then my 30 lbs weight loss last year was asked "Was that because of all the diarrhea?" No, I told her because I couldn't keep food down nor hardly any liquid. Again that was listed on a short list of symptoms. My burning throat became "So, you feel like something is stuck in your throat, like a lump?" No it burns. I was prescribed Prevacid because of "severe nausea" which I do not have and "so I can eat" which I already can. This of course was explained to her already, but people can't seem to follow. I think people hear what they want to hear. Sometimes I want to just says "Hey! WTF snap out of it, sit down, shut up and listen! and for god sakes read shit!" People are always told on TV to bring a list for the doctor, so it is clear and so you do not forget yourself some details. What is the point? It is not like they actually read it.
Anyway, what I did like about her is she seems like a perfectionist. So, I guess if I was going to have a procedure done I would want it done by a perfectionist. I don't know. I just typed that and somehow I am just not feeling comfortable about it now. I was emailing this girl on facebook earlier about my appointment and how I was going to stick with her, but the more I replay the events of this visit, I am starting to wonder what the right choice is now. Well, I don't have to decide right this second anyway and the stuff she wants tested I agree with anyway. So I will continue telling you more..
She wants to do a colonscopy and endoscopy under general anesthesia. Usually these tests are done under sedation. I am unsure why, because she didn't make it clear as to why she wants to do general anesthesia. My guess is because of the problems I had caused by benzos or because she could be concerned about my breathing, which I believe during general anesthesia your breathing is monitored...or because she thinks I am bat shit crazy and just wants me completely knocked out.
I have read that many people have the colonscopy and endoscopy at the same time. She does not want to do it that way. She wants them each done on different days, which means I will be put under general anesthesia twice. General anesthesia carries more risk than sedation and I am not so sure I am comfortable doing it twice. When I asked her why she wanted to do it two different times she said "Because most people can't take the amount of air pumped in for both procedures."
Regardless she will not run either of these tests till I have a full work up with cardiology, including a stress test and a tilt table test (I told her I had the EKG, Echo and 24 hour monitor in April, but I think she wants that repeated). These I want done anyway, even if often I feel to weak to do a stress test and the tilt table scares me because you can faint during it, which of course I have a major phobia of. She also wants me to see a neurologist and endocrinologist. I am not completely sure why, except I know to have my hormones tested by the endocrinologist. After all this she wants me to come back in two months to see her. Only thing is when I checked out they said she had nothing open for four months, but would have her personal secretary call me to schedule my appointment to see if she could get me in within two months.
She also has ordered blood work, which is a nightmare for me, blood, needles, fainting. I have a lab tech come to the apartment to draw it. That will be Feb 5th in the morning if everything was faxed correctly. To make it worse I have to fast for it because she wants to check my fasting blood sugar. Both her and my primary care doctor are concerned that my blood sugar at St. Peters Hospital back in March 2009 was 136. However I have explained to both of them I drank orange juice within 15 minutes of them running that test. From everything I have read after eating or drinking juice 136 is not out of the ordinary, but whatever. She is also going to do a liver panel, which was normal in March 2009, normal in Dec 2007 and normal in Feb 2006, so why I am doing this again, esp. since the bowel color change was there in 2007 and 2009 is beyond me. Also she is running a celiac disease test..thank God finally. I have been asking for that test for years. Other blood tests will be needed that she can not order, so I assume my primary care doctor. I honestly do not know how I will get through all this or if I even can without actually cracking. Sometimes I think people who talk to me online think I am stronger than I actually am.
I was giving a bowel sample test which I will have to do in a few days and return to the Albany Medical Centers lab. That test is to see if I still have H. Pylori or if the Prevpac I took back in July 2009 actually killed it.
I discovered a lump on my back a few days ago which I pointed out to her and she could feel it and said it was a fat tumor or a swollen lymph gland. If it was a fat tumor it would keep growing and I would have to get that removed.....great.
Something that left a bad taste was when she asked my sexual preference (it wasn't random is was in context), which was fine, but then after I told her she asked if I have tested for HIV. I guess it only bothers me because it was a quick jump...gay...HIV. I don't know.
I had mentioned that I didn't want to take Prevacid for rest of my life and she said "Why not?" I said "because all medications long term effect the body in a negative way, there is no long term studies on these drugs and the FDA never approved them for long term use." She said "Well if you have acid reflux its the easiest thing to do and they may have side effects, but you will have to make a trade." Ok I don't want to make a trade and who ever said I wanted to take the easy route of swallowing pills for the rest of my life. For those of you who don't know Prevacid and drugs in its class are called PPI's and they are now slowly being linked to heart attack (link vioxx was) and it is strongly suspected that long term use leads to baldness. Not to mention when you stop your stomach acid you can not take in the nutrients of food correctly, which is why anemia is linked to these drugs as well.
I will talk more about her later I am sure. Topic change:
My mother was very dizzy the other morning and was taken to the ER. The doctors did a CAT scan and found nothing, said she was dizzy from low potassium, however it was no lower that it normally is. Thankfully they admitted her and the next day did an MRI and discovered that she had a few mini strokes. I gather all in the same location of the brain and they happened over the past few weeks, with the last I gather causing the dizzy spells. However this explains her agitated behavior recently. Now I understand why she was maybe being so mean to me on the phone and not being as nice as she use to be towards me. That was taking a toll on me and I had been crying over that, because being this sick and for the most part very alone in all this....well it just made it harder. Thankfully it did not effect her memory or speak, she also has no weakness.
Her Iron is also way to low. She has been taking Iron since before she started chemo (she stopped chemo in Sept 2009) and continues too take Iron. However, it is not helping and so she is going to be having a blood transfusion to get Iron back in her system. This is a concern because getting blood in a weakened state like my mother is in is not easy on the body. They have to give benadryl with it and keep checking her for a fever.
Also they did an ultrasound of the arteries in her neck, which she will get the results to tomorrow. If they are clogged they will have to open them and clean them out. That of course has a risk of death and major stroke.
I was talking to her on the phone tonight and she seems ok over all. I think she is tired of everything, as I know by now I would be too. To be honest I don't think I could do that as gracefully as she has. I mean it must be very demeaning for her. She has been in diapers since July. She just had another colonscopy (same gastro doc I am now seeing is her doctor as well) they took biopsies, but I don't think the results from that are back yet. They removed the second polyp that they were not able to remove when they found the cancer the first time.
One last thing about the gastro doc I saw today. She thought POTs was tuberculosis of the bones. So anyone who reads my blog often by now knows what POTs is and that actually makes you know more than most doctors know about it.
Anyway, what I did like about her is she seems like a perfectionist. So, I guess if I was going to have a procedure done I would want it done by a perfectionist. I don't know. I just typed that and somehow I am just not feeling comfortable about it now. I was emailing this girl on facebook earlier about my appointment and how I was going to stick with her, but the more I replay the events of this visit, I am starting to wonder what the right choice is now. Well, I don't have to decide right this second anyway and the stuff she wants tested I agree with anyway. So I will continue telling you more..
She wants to do a colonscopy and endoscopy under general anesthesia. Usually these tests are done under sedation. I am unsure why, because she didn't make it clear as to why she wants to do general anesthesia. My guess is because of the problems I had caused by benzos or because she could be concerned about my breathing, which I believe during general anesthesia your breathing is monitored...or because she thinks I am bat shit crazy and just wants me completely knocked out.
I have read that many people have the colonscopy and endoscopy at the same time. She does not want to do it that way. She wants them each done on different days, which means I will be put under general anesthesia twice. General anesthesia carries more risk than sedation and I am not so sure I am comfortable doing it twice. When I asked her why she wanted to do it two different times she said "Because most people can't take the amount of air pumped in for both procedures."
Regardless she will not run either of these tests till I have a full work up with cardiology, including a stress test and a tilt table test (I told her I had the EKG, Echo and 24 hour monitor in April, but I think she wants that repeated). These I want done anyway, even if often I feel to weak to do a stress test and the tilt table scares me because you can faint during it, which of course I have a major phobia of. She also wants me to see a neurologist and endocrinologist. I am not completely sure why, except I know to have my hormones tested by the endocrinologist. After all this she wants me to come back in two months to see her. Only thing is when I checked out they said she had nothing open for four months, but would have her personal secretary call me to schedule my appointment to see if she could get me in within two months.
She also has ordered blood work, which is a nightmare for me, blood, needles, fainting. I have a lab tech come to the apartment to draw it. That will be Feb 5th in the morning if everything was faxed correctly. To make it worse I have to fast for it because she wants to check my fasting blood sugar. Both her and my primary care doctor are concerned that my blood sugar at St. Peters Hospital back in March 2009 was 136. However I have explained to both of them I drank orange juice within 15 minutes of them running that test. From everything I have read after eating or drinking juice 136 is not out of the ordinary, but whatever. She is also going to do a liver panel, which was normal in March 2009, normal in Dec 2007 and normal in Feb 2006, so why I am doing this again, esp. since the bowel color change was there in 2007 and 2009 is beyond me. Also she is running a celiac disease test..thank God finally. I have been asking for that test for years. Other blood tests will be needed that she can not order, so I assume my primary care doctor. I honestly do not know how I will get through all this or if I even can without actually cracking. Sometimes I think people who talk to me online think I am stronger than I actually am.
I was giving a bowel sample test which I will have to do in a few days and return to the Albany Medical Centers lab. That test is to see if I still have H. Pylori or if the Prevpac I took back in July 2009 actually killed it.
I discovered a lump on my back a few days ago which I pointed out to her and she could feel it and said it was a fat tumor or a swollen lymph gland. If it was a fat tumor it would keep growing and I would have to get that removed.....great.
Something that left a bad taste was when she asked my sexual preference (it wasn't random is was in context), which was fine, but then after I told her she asked if I have tested for HIV. I guess it only bothers me because it was a quick jump...gay...HIV. I don't know.
I had mentioned that I didn't want to take Prevacid for rest of my life and she said "Why not?" I said "because all medications long term effect the body in a negative way, there is no long term studies on these drugs and the FDA never approved them for long term use." She said "Well if you have acid reflux its the easiest thing to do and they may have side effects, but you will have to make a trade." Ok I don't want to make a trade and who ever said I wanted to take the easy route of swallowing pills for the rest of my life. For those of you who don't know Prevacid and drugs in its class are called PPI's and they are now slowly being linked to heart attack (link vioxx was) and it is strongly suspected that long term use leads to baldness. Not to mention when you stop your stomach acid you can not take in the nutrients of food correctly, which is why anemia is linked to these drugs as well.
I will talk more about her later I am sure. Topic change:
My mother was very dizzy the other morning and was taken to the ER. The doctors did a CAT scan and found nothing, said she was dizzy from low potassium, however it was no lower that it normally is. Thankfully they admitted her and the next day did an MRI and discovered that she had a few mini strokes. I gather all in the same location of the brain and they happened over the past few weeks, with the last I gather causing the dizzy spells. However this explains her agitated behavior recently. Now I understand why she was maybe being so mean to me on the phone and not being as nice as she use to be towards me. That was taking a toll on me and I had been crying over that, because being this sick and for the most part very alone in all this....well it just made it harder. Thankfully it did not effect her memory or speak, she also has no weakness.
Her Iron is also way to low. She has been taking Iron since before she started chemo (she stopped chemo in Sept 2009) and continues too take Iron. However, it is not helping and so she is going to be having a blood transfusion to get Iron back in her system. This is a concern because getting blood in a weakened state like my mother is in is not easy on the body. They have to give benadryl with it and keep checking her for a fever.
Also they did an ultrasound of the arteries in her neck, which she will get the results to tomorrow. If they are clogged they will have to open them and clean them out. That of course has a risk of death and major stroke.
I was talking to her on the phone tonight and she seems ok over all. I think she is tired of everything, as I know by now I would be too. To be honest I don't think I could do that as gracefully as she has. I mean it must be very demeaning for her. She has been in diapers since July. She just had another colonscopy (same gastro doc I am now seeing is her doctor as well) they took biopsies, but I don't think the results from that are back yet. They removed the second polyp that they were not able to remove when they found the cancer the first time.
One last thing about the gastro doc I saw today. She thought POTs was tuberculosis of the bones. So anyone who reads my blog often by now knows what POTs is and that actually makes you know more than most doctors know about it.
Friday, January 22, 2010
Third Times The Charm Maybe
I went to see my therapist again today. I was going to give it three sessions with her before I decided if I was going to try to stick with her or find a new one. I actually thought that today was going to be my last session with her, but she surprised me and I actually felt like maybe she is understanding what I am saying. I guess she just seemed more open to me this time. I told her about the visit with the lung doctor and the test results. I told her about how he had told me I should have just stopped the xanax cold turkey because the withdrawal only lasts three days to which she looked horrified.
She gave me some reading material on "mindfulness", which I was a little bit familiar with anyway, but by no means well read on the subject. I have not read what she gave me yet, however, I was on youtube tonight watching videos about it.
She looked surprised the doctor I just saw didn't feel the need to do a stress test and asked how I was going to go about getting one now. I told her I guess I will just go back to my primary care and just ask for him to refer me for one. She has offered to give me a note, should I need one, telling my doctor that she thinks all organic causes should be ruled out before it is just labeled anxiety.
We talked about my heart rate and how it is rapid during standing and when I am in the shower because I have become very heat intolerant. She thinks I should start calling around to the doctors in NYC and Boston to see if I can get in to be checked for POTs. We talked about how I would get there. I told her I would just drive and take Keith with me. I also told her I am trying to get as many tests run here in Albany as possible before I finally go to NYC or even another state. Plus we talked about how my insurance may not cover this esp. if it was out of state.
I think what I liked the most about today is I feel I finally got across to her, that I have a fast heart rate when I am nervous, yes I agree, but I have it for other reasons as well now and I can actually tell the difference. I also explained to her how having the label of anxiety is not very helpful in this situation. I said to her "It is sort of like if you felt unwell and maybe a little feverish, so you took your temperature and had a fever. Then, a few days later you still had the fever, so you saw your doctor and told him about your fever and feeling unwell. Only your doctor says to you "Why are you taking your temperature? Maybe you just think you feel unwell, because you are scaring yourself by checking your temperature....is everything OK at home?...Why don't you try an antidepressant?" and then you say "But I have a fever." and the Doctor says "I think you are worried you have a fever and so, then you do and are causing a self-fulfilling prophecy." Mean while you actually have the flu." and I told her basically that is what is happening to me.
Anyway, so for now I am keeping her. I would rather not have to change again anyway. I mean statistically I eventually have to randomly hit some good people. I know all medical professionals can't be idiots (God, I hope not). I think I have just been very unlucky so far.
She gave me some reading material on "mindfulness", which I was a little bit familiar with anyway, but by no means well read on the subject. I have not read what she gave me yet, however, I was on youtube tonight watching videos about it.
She looked surprised the doctor I just saw didn't feel the need to do a stress test and asked how I was going to go about getting one now. I told her I guess I will just go back to my primary care and just ask for him to refer me for one. She has offered to give me a note, should I need one, telling my doctor that she thinks all organic causes should be ruled out before it is just labeled anxiety.
We talked about my heart rate and how it is rapid during standing and when I am in the shower because I have become very heat intolerant. She thinks I should start calling around to the doctors in NYC and Boston to see if I can get in to be checked for POTs. We talked about how I would get there. I told her I would just drive and take Keith with me. I also told her I am trying to get as many tests run here in Albany as possible before I finally go to NYC or even another state. Plus we talked about how my insurance may not cover this esp. if it was out of state.
I think what I liked the most about today is I feel I finally got across to her, that I have a fast heart rate when I am nervous, yes I agree, but I have it for other reasons as well now and I can actually tell the difference. I also explained to her how having the label of anxiety is not very helpful in this situation. I said to her "It is sort of like if you felt unwell and maybe a little feverish, so you took your temperature and had a fever. Then, a few days later you still had the fever, so you saw your doctor and told him about your fever and feeling unwell. Only your doctor says to you "Why are you taking your temperature? Maybe you just think you feel unwell, because you are scaring yourself by checking your temperature....is everything OK at home?...Why don't you try an antidepressant?" and then you say "But I have a fever." and the Doctor says "I think you are worried you have a fever and so, then you do and are causing a self-fulfilling prophecy." Mean while you actually have the flu." and I told her basically that is what is happening to me.
Anyway, so for now I am keeping her. I would rather not have to change again anyway. I mean statistically I eventually have to randomly hit some good people. I know all medical professionals can't be idiots (God, I hope not). I think I have just been very unlucky so far.
Thursday, January 21, 2010
Pulmonologist visit
I went to the pulmonologist yesterday and had my Spirometery test to test my breathing. There are many different values it measures and to be honest I am not well read in this area, so I can only go by what he told me. The FVC and FEV1 values I gather are the main values. Normal range for these values are 80-120. 80 being the lower end of normal. My FVC value was 72 and my FEV1 value was 70. The pulmonologist said it was most likely because I had a bullectomy in Aug. 2000 and because I have a straighter spine than normal and because the distance from my chest to my back is small, so my lungs are compressed. He did not think it was caused by any damage from smoking and if so very little. Thankfully I quit smoking in Sept. 2009.
I gave him a list of all my other issues I am having which of course was down played to "me being very in-tuned with my body", "anxiety being the cause of my heart rate being high", saying I should take a beta blocker. I explained that I was not like this till after I came off xanax. He explained to me how benzo withdrawal only last 3 days (Which is just plain stupid, even ER doctors who mistreated me in the past admitted it was 4 weeks). He didn't think I should have tapered off the benzo and should have just stopped cold turkey. I told him if I had done that I think I would have had a seizure and he said "I see". As if I am making this up. No one ever should cold turkey stop a benzo.
I asked him if he had ever heard of POTs and he asked me what it stood for and I said "postural orthostatic tachycardia syndrome" and he said "oh yea, but you are not passing out, so you don't have that.". I said "Yea, but only 30% of people with POTs pass out, the other 70% have no change in the blood pressure or it spikes more than normal." and he said "Yea, but since you are not passing out you don't have that." (OK did he just hear what I said?) he continues "besides there is nothing we can do for that anyway." Which is not true. I figure if I have to tell him what POTs stands for he know very little about it. If he thinks benzo withdrawal lasts only 3 days then he is grossly misinformed and ignorant to this, which I can not understand since he claims he work with these drugs. His poor patients.
He told me he has been taking a beta blocker for years because his blood pressure is normal, but at work when he works in the ICU and people don't do something he asked them to do for his patients his blood pressure would be 180/120 and his pulse would race....now on the beta blocker which he takes daily and has no side effects from he is steady. My first though was that is not "high blood pressure" as much as it is a rage problem. He told me that when he forgets to take his beta blocker that within 24 hours his heart is racing faster than normal and he starts snapping at people because of the rebound effect, that how today he forgot to take his beta blocker and in 3 hours he knows he will be on edge and snapping at people. I told him "Have someone bring you your pill." Why would I want to be on a drug that does that? I do not want my body to require crap like that.
We went on talking about how I had to stop smoking because a cigarette was increasing my heart rate by 50 beats..he explained to me that cigarettes increase heart rates and I said yeah by 5 to 15 beats for 20 minutes on average not 50 beats for 2 hours. He said "50, wow...you have a very sensitive nervous system." Hello? What part of this was not happening until March 4th 2009 are you or any doctor not getting?? Do you think I would have sat there smoking for 11 years with my heart rate increasing to that speed and vomiting from it as it caused chest pain? So, instead of beating the shit out of him and throwing myself out a window I sat there and teared up several times as I listed to him. He also said "I think maybe you have a sensitive sinus node in your heart." Again I didn't till March 4th 2009, I do not understand why no doctor will even consider that a medication messed me up.
When he told me I was "too in tuned to my body" is the only time I defended myself immediately..I said "No. If I had a fork and kept poking you over and over, day in and day out on your hand with the fork, you would feel it. You would not be too tuned into the fork." I hate that whole "you are tuned in crap" it blames the person for feeling something and it is a cop-out.
Since he has a poor lack of knowledge on over half of what we talked about, why should I trust him on why my lung function is lower than normal? Eventually, I might take my results and get a second opinion just to make sure.
Oh I also told him about how when I stand my heart rate keeps climbing. So he clipped this thing on my finger and I laid down, then stood up. He had me stand for about a minute and said "Yea, its up to 110 now." (It would had went higher if he let me stand there longer.). He said "Let me guess..you aren't an athlete?" I said "No, but I do do the treadmill often since I quit smoking." and he said "Oh you do?". I told him how I can only go 2mph and with that my heart goes to 140 and if I go faster it goes to 170+ at 3 to 4 mph..and when that happens my face is pale after. I also told him how my heart will race for an hour after that before it will almost be back to where it was before I exercised. Also, that I am wore out for the rest of the day after I exercise. I got that look like "Why do you know your pulse?" The whole athlete question, which I have got more than once is annoying and I will tell you why. Do you have any idea how many overweight people are in that office? How many people who I know damn well are not very athletic and many probably have desk jobs...where is there high standing heart rate?
Anyway, that is all I can think of for now expect to say that my test was suppose to be at 8am, I checked in at 7:45am, at 8:20am they said they were looking for me and didn't know I was there. The receptionist didn't put my chart where it should be. Then I was suppose to see the pulmonologist at 8:40am. I was taken in, then he told me there was a scheduling error and he was sorry and he had to give a lecture. He asked if I could return at 9:50am when he returned. I said "yeah that is ok." and I sat in my car till it was time to go back in.
I gave him a list of all my other issues I am having which of course was down played to "me being very in-tuned with my body", "anxiety being the cause of my heart rate being high", saying I should take a beta blocker. I explained that I was not like this till after I came off xanax. He explained to me how benzo withdrawal only last 3 days (Which is just plain stupid, even ER doctors who mistreated me in the past admitted it was 4 weeks). He didn't think I should have tapered off the benzo and should have just stopped cold turkey. I told him if I had done that I think I would have had a seizure and he said "I see". As if I am making this up. No one ever should cold turkey stop a benzo.
I asked him if he had ever heard of POTs and he asked me what it stood for and I said "postural orthostatic tachycardia syndrome" and he said "oh yea, but you are not passing out, so you don't have that.". I said "Yea, but only 30% of people with POTs pass out, the other 70% have no change in the blood pressure or it spikes more than normal." and he said "Yea, but since you are not passing out you don't have that." (OK did he just hear what I said?) he continues "besides there is nothing we can do for that anyway." Which is not true. I figure if I have to tell him what POTs stands for he know very little about it. If he thinks benzo withdrawal lasts only 3 days then he is grossly misinformed and ignorant to this, which I can not understand since he claims he work with these drugs. His poor patients.
He told me he has been taking a beta blocker for years because his blood pressure is normal, but at work when he works in the ICU and people don't do something he asked them to do for his patients his blood pressure would be 180/120 and his pulse would race....now on the beta blocker which he takes daily and has no side effects from he is steady. My first though was that is not "high blood pressure" as much as it is a rage problem. He told me that when he forgets to take his beta blocker that within 24 hours his heart is racing faster than normal and he starts snapping at people because of the rebound effect, that how today he forgot to take his beta blocker and in 3 hours he knows he will be on edge and snapping at people. I told him "Have someone bring you your pill." Why would I want to be on a drug that does that? I do not want my body to require crap like that.
We went on talking about how I had to stop smoking because a cigarette was increasing my heart rate by 50 beats..he explained to me that cigarettes increase heart rates and I said yeah by 5 to 15 beats for 20 minutes on average not 50 beats for 2 hours. He said "50, wow...you have a very sensitive nervous system." Hello? What part of this was not happening until March 4th 2009 are you or any doctor not getting?? Do you think I would have sat there smoking for 11 years with my heart rate increasing to that speed and vomiting from it as it caused chest pain? So, instead of beating the shit out of him and throwing myself out a window I sat there and teared up several times as I listed to him. He also said "I think maybe you have a sensitive sinus node in your heart." Again I didn't till March 4th 2009, I do not understand why no doctor will even consider that a medication messed me up.
When he told me I was "too in tuned to my body" is the only time I defended myself immediately..I said "No. If I had a fork and kept poking you over and over, day in and day out on your hand with the fork, you would feel it. You would not be too tuned into the fork." I hate that whole "you are tuned in crap" it blames the person for feeling something and it is a cop-out.
Since he has a poor lack of knowledge on over half of what we talked about, why should I trust him on why my lung function is lower than normal? Eventually, I might take my results and get a second opinion just to make sure.
Oh I also told him about how when I stand my heart rate keeps climbing. So he clipped this thing on my finger and I laid down, then stood up. He had me stand for about a minute and said "Yea, its up to 110 now." (It would had went higher if he let me stand there longer.). He said "Let me guess..you aren't an athlete?" I said "No, but I do do the treadmill often since I quit smoking." and he said "Oh you do?". I told him how I can only go 2mph and with that my heart goes to 140 and if I go faster it goes to 170+ at 3 to 4 mph..and when that happens my face is pale after. I also told him how my heart will race for an hour after that before it will almost be back to where it was before I exercised. Also, that I am wore out for the rest of the day after I exercise. I got that look like "Why do you know your pulse?" The whole athlete question, which I have got more than once is annoying and I will tell you why. Do you have any idea how many overweight people are in that office? How many people who I know damn well are not very athletic and many probably have desk jobs...where is there high standing heart rate?
Anyway, that is all I can think of for now expect to say that my test was suppose to be at 8am, I checked in at 7:45am, at 8:20am they said they were looking for me and didn't know I was there. The receptionist didn't put my chart where it should be. Then I was suppose to see the pulmonologist at 8:40am. I was taken in, then he told me there was a scheduling error and he was sorry and he had to give a lecture. He asked if I could return at 9:50am when he returned. I said "yeah that is ok." and I sat in my car till it was time to go back in.
Fathers Reply
I am going to address the email I got back from my father and I will break it down line by line. I hate even doing this because as I pointed out in a comment to someone else on here, that unless you have lived my life and understand the inner workings of my family I just sound like a spoiled brat. However this blog is also for myself, so I just like to keep track of things. I did not reply to the email and I have no intention of replying to it. I also have no intention of keeping my parents involved in my health matters anymore, there is no point, it does me no good at all. I do have a feeling that they and by "they" I mean my father reads my blog. I am not sure, personally I don't care if it has been discovered by my parents. This is me and it doesn't get anymore real than this.
"Mom had spent almost a whole day Monday at the hospital - between the CT Scan and the Doc appointment - Mom was tired when we got home from the test etc - and wanted me to email you with the news - before we forgot."
OK, what stopped my father from picking the phone up and dialing seven digits to tell me himself (Even if mom was tired.)? That is a lot easier and faster than booting up his computer and signing into his email account. However, I know that my mother, with that news did make phone calls and would have told my sister or her friend Janet. I know damn well my sister did not get an email.
"We both believe that the pills is what caused a majority of what happened to you - and we saw it first hand when you were living with us the few months. That's why we thought we were doing a good thing by going to see Dr. P**** cause we heard that we was compassionate - but he turned out to be a big flop."
If my parents really believed that the pills were indeed doing what they did to me why didn't either of them have my back? Where was my father saying to a doctor "I know my son and this is not how he was." Why was I told by my father "I don't know what the fuck is wrong with you." and "You don't eat because you don't want to eat." Where was the compassion during any of that from him? I don't fully believe I was taken only because they heard he was "compassionate", it is called he had a sliding fee scale. When it comes to my health and money I can pretty much guarantee I will be taken to someone who treats the lowest common denominator. Also after two visits and my parents knew what a "flop" he was with his praying therapist, where was the help getting me another doctor, as I laid in bed too sick to doctor shop for myself. I would like to point out to people at this time I was vomiting, dizzy, very rapid heart, living only on liquids....just plain bed bound often..it was like having the worst flu ever that never ended.
"Email or call these doctors & ask them if they take your insurance - and if they are in NJ or out of NYS your Medicaid will not cover them."
This I already know and a lot of these doctors are in MA and NJ.
"Ask them if they have any kind of program that can help you since you have been suffering so long."
This might come as a surprise, but doctors do not care how long I have been suffering. It is a business, a job, that is why the cardiologist was still $540 dollars and there was no sliding fee. A specialist in NYC, NJ or MA is not going to just hand out freebies because I am sick.
"We don't know what we are coming up against with your mom being so sick."
While this is true, mom does have insurance and one medical test is hardly going to bankrupt the family. The truth is my suffering simply is not worth the help. It is also meant to make me feel guilt and I will not.
"Hopefully these docs have program or something they can come up with for you."
They don't, this is what families are for and by no means is our family poor like so many families out there.
"Mom & I love you very much - please don't think we don't."
I never thought they didn't love me..in their own way. I do think they are both seriously warped. After all when they though health insurance through Keith was going to be $180 a month that could be paid for. They are willing to pay for a therapist when my medicaid goes. So why is it so hard to pay for a test that could be $1500 dollars? They are the ones who blew this test up to $10,000-$25,000 dollars in their minds.
"Dad"
Final comments. Is my mom still tired from the CT scan, because it has been 48 hours and still my phone has not rang. In fact my phone has not rang since the 8th of January. I am the one who called on Jan. 13th. My father could have also called me to tell me what was said in that most recent email. I also know that email was wrote not by my father, but by my mother and father together because "Mom & I love you very much - please don't think we don't." is something my father would never write. I am also starting to suspect (though I could be completely wrong) that my parents actually have seen a therapist once or twice and told to do "tough love" bullshit. I only suspect that because that crap was pulled on me in high school.
"Mom had spent almost a whole day Monday at the hospital - between the CT Scan and the Doc appointment - Mom was tired when we got home from the test etc - and wanted me to email you with the news - before we forgot."
OK, what stopped my father from picking the phone up and dialing seven digits to tell me himself (Even if mom was tired.)? That is a lot easier and faster than booting up his computer and signing into his email account. However, I know that my mother, with that news did make phone calls and would have told my sister or her friend Janet. I know damn well my sister did not get an email.
"We both believe that the pills is what caused a majority of what happened to you - and we saw it first hand when you were living with us the few months. That's why we thought we were doing a good thing by going to see Dr. P**** cause we heard that we was compassionate - but he turned out to be a big flop."
If my parents really believed that the pills were indeed doing what they did to me why didn't either of them have my back? Where was my father saying to a doctor "I know my son and this is not how he was." Why was I told by my father "I don't know what the fuck is wrong with you." and "You don't eat because you don't want to eat." Where was the compassion during any of that from him? I don't fully believe I was taken only because they heard he was "compassionate", it is called he had a sliding fee scale. When it comes to my health and money I can pretty much guarantee I will be taken to someone who treats the lowest common denominator. Also after two visits and my parents knew what a "flop" he was with his praying therapist, where was the help getting me another doctor, as I laid in bed too sick to doctor shop for myself. I would like to point out to people at this time I was vomiting, dizzy, very rapid heart, living only on liquids....just plain bed bound often..it was like having the worst flu ever that never ended.
"Email or call these doctors & ask them if they take your insurance - and if they are in NJ or out of NYS your Medicaid will not cover them."
This I already know and a lot of these doctors are in MA and NJ.
"Ask them if they have any kind of program that can help you since you have been suffering so long."
This might come as a surprise, but doctors do not care how long I have been suffering. It is a business, a job, that is why the cardiologist was still $540 dollars and there was no sliding fee. A specialist in NYC, NJ or MA is not going to just hand out freebies because I am sick.
"We don't know what we are coming up against with your mom being so sick."
While this is true, mom does have insurance and one medical test is hardly going to bankrupt the family. The truth is my suffering simply is not worth the help. It is also meant to make me feel guilt and I will not.
"Hopefully these docs have program or something they can come up with for you."
They don't, this is what families are for and by no means is our family poor like so many families out there.
"Mom & I love you very much - please don't think we don't."
I never thought they didn't love me..in their own way. I do think they are both seriously warped. After all when they though health insurance through Keith was going to be $180 a month that could be paid for. They are willing to pay for a therapist when my medicaid goes. So why is it so hard to pay for a test that could be $1500 dollars? They are the ones who blew this test up to $10,000-$25,000 dollars in their minds.
"Dad"
Final comments. Is my mom still tired from the CT scan, because it has been 48 hours and still my phone has not rang. In fact my phone has not rang since the 8th of January. I am the one who called on Jan. 13th. My father could have also called me to tell me what was said in that most recent email. I also know that email was wrote not by my father, but by my mother and father together because "Mom & I love you very much - please don't think we don't." is something my father would never write. I am also starting to suspect (though I could be completely wrong) that my parents actually have seen a therapist once or twice and told to do "tough love" bullshit. I only suspect that because that crap was pulled on me in high school.
Tuesday, January 19, 2010
The Letter
My mother, yet again is not talking to me since the 13th of January. There is no way for me to type all the reasons why, it would become a novel. To sum it up though, in the most simplest terms, it is because I am still sick. I might have to see a doctor who is not in Albany, because there is not a doctor in the Albany area that specializes in what could be wrong with me. My parents have made if very clear they have no intention on helping me with that. Yet, they would continue to pay for a therapist if my insurance ran out, which makes no sense. It would be cheaper in the end to just see the other doctor and be tested for POTs. When I said it made no sense that they have no money to help me see a doctor outside of Albany, but have money to throw at a therapist, which in the end will do nothing to help this issue, my mother started screaming about how it is "different" and how she is "not going to go there". It is not different if I have something going on that is not mental. So, the argument continued back and forth till she hung up on me. Anyway, so I get this email from my father this morning and then I replied. Sometimes I just was to unleash 20 years of rage, but I can't and try to keep myself under control. Here is the email:
"Hi
Mom had a cat scan yesterday - good news - it showed nothing -
We met with Dr.Lee her surgeon yesterday afternoon - that's why we have the results so quickly. Dr. Lee told us he would like to go ahead and do an exploratory of the liver surface - He says the cat scan looks inside the liver in layers - how ever it doesn't detect something that might be on the surface - he will look at the surface to see if there is any growths - if there is - he will slice it out-.
Mom's next appointment with the surgeon is 6 weeks out - March 1st - when we will set the date for the exploratory.
Got your bills this morning - they will go out later
All the news for now
Dad"
My Reply:
"There is no reason why Mom, nor you did not call me to tell me this. I am sorry, but regardless of what either of you think about me at this point, I am still sick and some days still quite sick. My entire life is nothing compared to what it use to be. Many days I am unable to do the most simplest things I use to do.
While neither of you, I am sure care about postural orthostatic tachycardia syndrome, it is the closest thing that could be causing everything happening to me. Neither of you, I am sure, as with anything that has happened to me in my life bothered to even look it up. The "anxiety" I had all these years was never read about either, nor that withdrawal from xanax, which was nothing short of horrific, which by the way could very well be the cause of the postural orthostatic tachycardia syndrome, if that syndrome is indeed what is wrong.
Try not being able to stand for a long period of time without your heart being 120 and then take a shower and have it be 140+, because you are so heat intolerant. I live in a constant state of discomfort, just at varying degrees.
This whole event has shown me a lot about my life and the people in my life. Money is not love, it never was and all these years of paying bills and keeping me at the same level, never listening, never reading anything has left me alone to fight with no one having my back. If my son was sick, not only would I have moved heaven and Earth to help him, not only when he was suffering last year, but I would continue to help till he was well or had answers.
Neither of you have any clue how it is to keep walking into doctors offices and getting the smiles, that all this is "just anxiety" and offered the very pills that caused all this or how it is to sit there, looking healthy and even younger than my age and tell these people I am sick, that I have fatigue so severe that I can't take my trash out on time or keep up with my apartment, as they look at me and I can tell they don't believe me, nor understand what I am saying. After all they have already jumped to "it is anxiety", "it is depression". Try proving you aren't crazy.
I have explained that there is no one who specializes in postural orthostatic tachycardia syndrome in Albany at all. This is not some woo-who make believe shit. It is a syndrome of the autonomic nervous system, a dysautonomia. Because there are no specialists in Albany, if I do have that syndrome, when I get sedated for a scope or anything they might need to do for me I could actually die. My blood pressure could crash and they would have no idea why.
Postural orthostatic tachycardia syndrome would explain the fatigue, since people get wore out because the heart is "running in place" often burning a lot of energy. It causes, vomiting, GERD, other various gastro issues, high standing heart rates, heat intolerance, anxiety, depression, pale face, pupils to dilate out, among a list of other things. Only 30% of people have a drop in blood pressure or faint with it, the other 70% have a rise in blood pressure while standing and a heart rate that increases 30+ beats. There is no cure for it only treatment options. Sometimes it can go away in 2 to 5 years and other times it never does.
Mom tells me there would be no help to see a doctor for that, that you guys are "putting your foot down." It is not like I am asking for designer clothes or a new car. Nor at this point would I even want your help with this now. I shouldn't have to beg and be on deaths door to get my parents help. Keith's family can't even understand what the hell is wrong with either one of you.
Looking back over my life though to be honest it doesn't surprise me at all. Now mom is sick and while I listened about her illness, read all about colon cancer, offered up help to her, worry about her and offered up different ideas to stop the diarrhea ... I do not get the same. I even had told her to have a simple blood test checking for celiac disease, which could also be causing all these issues and does indeed often pop up after surgeries like the kind she had and after chemo. I honestly think you guys think I am an idiot and that I have no clue what I am talking about. First thing I did for you when you found out you had high cholesterol was make different diet plans for you. Neither of you would even attempt to do that for me. I know this because neither of you read anything about anything happening to me over the past 20 years.
Driving me to an appointment and sitting there is not compassion, it is a taxi ride, because I indeed know, that should I have ever fainted in your car and requested to be taken to an ER I would have had to fight for that too. The idea and indeed the full knowledge now, that no matter how sick I get I will sit in that back bedroom suffering alone, while you sigh because I am out of food yet again or when scared reach out to you and you close your eyes, as your face turns that angry red, as you stutter out to me "I don't know what the fuck is wrong with you." is too much to handle and I only pray I never get that sick again. I have no clue when my health insurance is going to end and even if I get a domestic partnership with Keith, to be added on his health insurance it would be $320 a month.
What pisses me off more than anything and just puts it all into prospective is me telling mom "I just want my life back." and her reply "Well you didn't go anywhere before anyway." as if it is ok that I am suffering??
I am so sick of hearing "Well I wasn't raised that way." or "Your father was raised that way." Well, you both had years to change and your childhood does not give you free license to act anyway you want. While I could not deal with that therapist down on Clinton Ave. and all her praying, I will say this, she commented "What surprised me the most is how little your father knows about you." It didn't surprise me at all.
I have told Keith this and I am hopefully going to be putting some form of cheap Will together soon, but should I just drop dead, I do not want to be buried in that plot that you guys have.
I am glad moms scan came back fine, hopefully the scope of the liver will show nothing and thank you for letting me know you got the bills.
Brian"
"Hi
Mom had a cat scan yesterday - good news - it showed nothing -
We met with Dr.Lee her surgeon yesterday afternoon - that's why we have the results so quickly. Dr. Lee told us he would like to go ahead and do an exploratory of the liver surface - He says the cat scan looks inside the liver in layers - how ever it doesn't detect something that might be on the surface - he will look at the surface to see if there is any growths - if there is - he will slice it out-.
Mom's next appointment with the surgeon is 6 weeks out - March 1st - when we will set the date for the exploratory.
Got your bills this morning - they will go out later
All the news for now
Dad"
My Reply:
"There is no reason why Mom, nor you did not call me to tell me this. I am sorry, but regardless of what either of you think about me at this point, I am still sick and some days still quite sick. My entire life is nothing compared to what it use to be. Many days I am unable to do the most simplest things I use to do.
While neither of you, I am sure care about postural orthostatic tachycardia syndrome, it is the closest thing that could be causing everything happening to me. Neither of you, I am sure, as with anything that has happened to me in my life bothered to even look it up. The "anxiety" I had all these years was never read about either, nor that withdrawal from xanax, which was nothing short of horrific, which by the way could very well be the cause of the postural orthostatic tachycardia syndrome, if that syndrome is indeed what is wrong.
Try not being able to stand for a long period of time without your heart being 120 and then take a shower and have it be 140+, because you are so heat intolerant. I live in a constant state of discomfort, just at varying degrees.
This whole event has shown me a lot about my life and the people in my life. Money is not love, it never was and all these years of paying bills and keeping me at the same level, never listening, never reading anything has left me alone to fight with no one having my back. If my son was sick, not only would I have moved heaven and Earth to help him, not only when he was suffering last year, but I would continue to help till he was well or had answers.
Neither of you have any clue how it is to keep walking into doctors offices and getting the smiles, that all this is "just anxiety" and offered the very pills that caused all this or how it is to sit there, looking healthy and even younger than my age and tell these people I am sick, that I have fatigue so severe that I can't take my trash out on time or keep up with my apartment, as they look at me and I can tell they don't believe me, nor understand what I am saying. After all they have already jumped to "it is anxiety", "it is depression". Try proving you aren't crazy.
I have explained that there is no one who specializes in postural orthostatic tachycardia syndrome in Albany at all. This is not some woo-who make believe shit. It is a syndrome of the autonomic nervous system, a dysautonomia. Because there are no specialists in Albany, if I do have that syndrome, when I get sedated for a scope or anything they might need to do for me I could actually die. My blood pressure could crash and they would have no idea why.
Postural orthostatic tachycardia syndrome would explain the fatigue, since people get wore out because the heart is "running in place" often burning a lot of energy. It causes, vomiting, GERD, other various gastro issues, high standing heart rates, heat intolerance, anxiety, depression, pale face, pupils to dilate out, among a list of other things. Only 30% of people have a drop in blood pressure or faint with it, the other 70% have a rise in blood pressure while standing and a heart rate that increases 30+ beats. There is no cure for it only treatment options. Sometimes it can go away in 2 to 5 years and other times it never does.
Mom tells me there would be no help to see a doctor for that, that you guys are "putting your foot down." It is not like I am asking for designer clothes or a new car. Nor at this point would I even want your help with this now. I shouldn't have to beg and be on deaths door to get my parents help. Keith's family can't even understand what the hell is wrong with either one of you.
Looking back over my life though to be honest it doesn't surprise me at all. Now mom is sick and while I listened about her illness, read all about colon cancer, offered up help to her, worry about her and offered up different ideas to stop the diarrhea ... I do not get the same. I even had told her to have a simple blood test checking for celiac disease, which could also be causing all these issues and does indeed often pop up after surgeries like the kind she had and after chemo. I honestly think you guys think I am an idiot and that I have no clue what I am talking about. First thing I did for you when you found out you had high cholesterol was make different diet plans for you. Neither of you would even attempt to do that for me. I know this because neither of you read anything about anything happening to me over the past 20 years.
Driving me to an appointment and sitting there is not compassion, it is a taxi ride, because I indeed know, that should I have ever fainted in your car and requested to be taken to an ER I would have had to fight for that too. The idea and indeed the full knowledge now, that no matter how sick I get I will sit in that back bedroom suffering alone, while you sigh because I am out of food yet again or when scared reach out to you and you close your eyes, as your face turns that angry red, as you stutter out to me "I don't know what the fuck is wrong with you." is too much to handle and I only pray I never get that sick again. I have no clue when my health insurance is going to end and even if I get a domestic partnership with Keith, to be added on his health insurance it would be $320 a month.
What pisses me off more than anything and just puts it all into prospective is me telling mom "I just want my life back." and her reply "Well you didn't go anywhere before anyway." as if it is ok that I am suffering??
I am so sick of hearing "Well I wasn't raised that way." or "Your father was raised that way." Well, you both had years to change and your childhood does not give you free license to act anyway you want. While I could not deal with that therapist down on Clinton Ave. and all her praying, I will say this, she commented "What surprised me the most is how little your father knows about you." It didn't surprise me at all.
I have told Keith this and I am hopefully going to be putting some form of cheap Will together soon, but should I just drop dead, I do not want to be buried in that plot that you guys have.
I am glad moms scan came back fine, hopefully the scope of the liver will show nothing and thank you for letting me know you got the bills.
Brian"
Sunday, January 10, 2010
Crying Spells
I dislike having crying spells. I know I am not having them because I have some "chemical imbalance", but because I am under extreme stress right now in my life.
Imagine losing a five year relationship and being alone night and day for months on end. Going through a very bad drug withdrawal [from prescribed xanax that I never abused] that doctors and family did not believe, but made you sick enough that you had to move home for four months and even though you are not alone, because you are at your parents, you are still very much alone and suffering from being so ill. Then having your mother diagnosed with cancer. Losing your cat because he got use to living at your parents during that four months and you know even when you move back to your apartment you are not well enough to care for him. Getting your old relationship back with the agreement that it will be an open relationship. Back sitting at your apartment most days alone, night and day again..to sick to be going around the town trying to find new friends.
Try being sick and having no one. I can cry on my couch and my bf can be right there. There is no "it will be OK", no hugs, no "we will get through this together." or "I will take care of you". The other morning I picked him up from work to take him back to his apartment because it is so cold out. He did thank me, but just got out of the car. No hug, no kiss on the cheek. He has depression issues and I understand that, but it still hurts...I still feel alone.
Imagine calling your mother and because she has not ever heard of some illness or some symptom you are having you just hear "Well I have never heard that before.", "That doesn't make sense." and sadly it is nothing different than what you hear from doctors, but yet you know something is wrong with your body. However because you hold your ground, because you damn well do know your body you are told "Well it sounds like anxiety.", "You are obsessed.", "You have a chemical imbalance.". I am not allowed to know my own body and stand my ground. If I do that I am neurotic. Also trying having crippling anxiety over blood work and medical procedures and doing them anyway, alone, because you do know something is wrong.
My parents hardly call me, well I should say mother because she is the only one that did anyway, not like my father ever calls me. I get food money once a week from my parents. No call saying "Hey, dad is going to drop your food money off." Just me sitting here at my computer and I hear the mail slot open as it falls through to the floor. Sometimes I feel like a trapped caged pet.
Doctors just want to know if I am under psychiatric care and if not, why not, and if so what medications I am taking to "treat my anxiety". I have lived in this body my whole life. Most of my life I have indeed had anxiety and still do. What is happening now is not my anxiety. I know my body..the world tells me I don't. I have asked before..how does one prove they are not crazy?
The stress from all of this has lead to crying spells. It comes out of pure hopelessness. I don't know where to turn and there is no one in my life to help me through. So the other morning I was sitting in my car at 6am warming it up to bring my bf back to this apartment. I suddenly noticed I was crying and doing so loudly. I was sort of shocked that I was crying for awhile and had not even realized it. Sometimes now in my head I picture a doctor coming into a room after a test and saying "You have _______.", whatever disease or illness and I really cry my eyes out over this thought, not because I am scared of said disease, but because I would feel so vindicated that it was proof it was not all in my head and not "my anxiety.".
Imagine losing a five year relationship and being alone night and day for months on end. Going through a very bad drug withdrawal [from prescribed xanax that I never abused] that doctors and family did not believe, but made you sick enough that you had to move home for four months and even though you are not alone, because you are at your parents, you are still very much alone and suffering from being so ill. Then having your mother diagnosed with cancer. Losing your cat because he got use to living at your parents during that four months and you know even when you move back to your apartment you are not well enough to care for him. Getting your old relationship back with the agreement that it will be an open relationship. Back sitting at your apartment most days alone, night and day again..to sick to be going around the town trying to find new friends.
Try being sick and having no one. I can cry on my couch and my bf can be right there. There is no "it will be OK", no hugs, no "we will get through this together." or "I will take care of you". The other morning I picked him up from work to take him back to his apartment because it is so cold out. He did thank me, but just got out of the car. No hug, no kiss on the cheek. He has depression issues and I understand that, but it still hurts...I still feel alone.
Imagine calling your mother and because she has not ever heard of some illness or some symptom you are having you just hear "Well I have never heard that before.", "That doesn't make sense." and sadly it is nothing different than what you hear from doctors, but yet you know something is wrong with your body. However because you hold your ground, because you damn well do know your body you are told "Well it sounds like anxiety.", "You are obsessed.", "You have a chemical imbalance.". I am not allowed to know my own body and stand my ground. If I do that I am neurotic. Also trying having crippling anxiety over blood work and medical procedures and doing them anyway, alone, because you do know something is wrong.
My parents hardly call me, well I should say mother because she is the only one that did anyway, not like my father ever calls me. I get food money once a week from my parents. No call saying "Hey, dad is going to drop your food money off." Just me sitting here at my computer and I hear the mail slot open as it falls through to the floor. Sometimes I feel like a trapped caged pet.
Doctors just want to know if I am under psychiatric care and if not, why not, and if so what medications I am taking to "treat my anxiety". I have lived in this body my whole life. Most of my life I have indeed had anxiety and still do. What is happening now is not my anxiety. I know my body..the world tells me I don't. I have asked before..how does one prove they are not crazy?
The stress from all of this has lead to crying spells. It comes out of pure hopelessness. I don't know where to turn and there is no one in my life to help me through. So the other morning I was sitting in my car at 6am warming it up to bring my bf back to this apartment. I suddenly noticed I was crying and doing so loudly. I was sort of shocked that I was crying for awhile and had not even realized it. Sometimes now in my head I picture a doctor coming into a room after a test and saying "You have _______.", whatever disease or illness and I really cry my eyes out over this thought, not because I am scared of said disease, but because I would feel so vindicated that it was proof it was not all in my head and not "my anxiety.".
Saturday, January 9, 2010
Saw the therapist
I went to the new therapist the other day. It is hard for me to tell at this point if she is someone I will stick with or if I will find someone else to work with. Anyone who has seen a therapist knows that the first session is mainly a lot of questions and you sitting there trying to get out as much as you can, as fast as you can to get the therapist up to speed.
The thing that left a bad taste in my mouth about her, was after explaining what had just happened to me with the xanax and also my experience with paxil her first recommendation was to put me on medication. To which I said absolutely not. I mean what take more pills that made me this sick already? Then if and when something does occur I will only be told the side effects are all in my mind and how I am only sick because I was worried I would be sick? No thank you. The last thing I want is to be forced to live back in that bedroom at my parents house as they threaten to have me put away and doctors tell me it is all "anxiety" as my body goes through some horrific experience trying to repair what the drugs damaged.
I wonder. How does one convince someone they aren't crazy? Hell even people who read this blog think half this stuff is in my head.
Yesterday, when I went to the bathroom there was some blood, so I will have to update that on my sheet for the gastro that said "no blood". My bowel color is back to a pale yellow as well. I am sure the blood is also from "my anxiety and my depression". I must have a very powerful mind. I can change my bowel color pale yellow, bleed, have high heart rates when I stand because I certainly must have a major phobia of standing now, My face goes pale out of no where ...yes indeed very powerful mind. These people are idiots and I might die at the hands of them. The scary thing is I am starting not to care if I do..I am tired.
I didn't have a xmas this year, so I bought myself two books off amazon.com I only use one of my credit cards because while there is a automatic payment that gets charged for my internet every month to my capital one card, the rest is paid off. I told my mom that I would only be using the one credit card (She however thinks she is the one who told me, but that is neither here nor there.) Anyway when I ordered the two books from amazon the card that amazon had stored I thought was my card that I use (rarely unless for food or gas), but it turned out to be the capital one card. I got a voice mail about that from my mother.
There was another time I was most likely sleeping when my mom returned my call. If you listen closely at the end you can here the "God!" as she hangs up. I don't know guys I feel sick, scared of what is happening with my health and alone a lot.
The thing that left a bad taste in my mouth about her, was after explaining what had just happened to me with the xanax and also my experience with paxil her first recommendation was to put me on medication. To which I said absolutely not. I mean what take more pills that made me this sick already? Then if and when something does occur I will only be told the side effects are all in my mind and how I am only sick because I was worried I would be sick? No thank you. The last thing I want is to be forced to live back in that bedroom at my parents house as they threaten to have me put away and doctors tell me it is all "anxiety" as my body goes through some horrific experience trying to repair what the drugs damaged.
I wonder. How does one convince someone they aren't crazy? Hell even people who read this blog think half this stuff is in my head.
Yesterday, when I went to the bathroom there was some blood, so I will have to update that on my sheet for the gastro that said "no blood". My bowel color is back to a pale yellow as well. I am sure the blood is also from "my anxiety and my depression". I must have a very powerful mind. I can change my bowel color pale yellow, bleed, have high heart rates when I stand because I certainly must have a major phobia of standing now, My face goes pale out of no where ...yes indeed very powerful mind. These people are idiots and I might die at the hands of them. The scary thing is I am starting not to care if I do..I am tired.
I didn't have a xmas this year, so I bought myself two books off amazon.com I only use one of my credit cards because while there is a automatic payment that gets charged for my internet every month to my capital one card, the rest is paid off. I told my mom that I would only be using the one credit card (She however thinks she is the one who told me, but that is neither here nor there.) Anyway when I ordered the two books from amazon the card that amazon had stored I thought was my card that I use (rarely unless for food or gas), but it turned out to be the capital one card. I got a voice mail about that from my mother.
There was another time I was most likely sleeping when my mom returned my call. If you listen closely at the end you can here the "God!" as she hangs up. I don't know guys I feel sick, scared of what is happening with my health and alone a lot.
Wednesday, January 6, 2010
Going to see a therapist tomorrow
Yesterday, I made an appointment with a Licensed Clinical Social Worker, also in the building they are staffed with psychiatrists. I have an appointment tomorrow at 12:15pm.
My goal is to get someone to believe what has happened to me and what is still happening to me because, then, I could maybe get a letter to a doctor that could state something like "We believe that this is not psychological, but a physiological problem.". Then, a "professional" would have stated that it is not being caused by anxiety and then maybe they would treat me better and more aggressivly look into what I have been telling them.
Also, I have a lot of issues outside some anxiety disorder that has been blown larger than life by doctors. I would like to discuss my relationship issues that I have with my boyfriend, my family issues, how it is to live as sick as I am, how to come to terms with the reality of my life, how to cope with going through all these medical tests and how to cope when and if something is found depending on what it is. Also, how to set up a support system.
I also fear my medicaid will be canceled soon and I think maybe they could give me a note stating I am unable to work at this time.
If this place is not for me I might try some place else.
I made a list this morning that I plan of taking with me to the Gastro appointment on the 25th of Jan. because even I won't remember it all or be able to get everything out in the 10 minutes I will be given. I tried to keep it as short as possible. Below is what I have:
-------------------------------
Pale bowel color on and off since 2007 (Dec. 2007 had an ultrasound of my gallbladder and liver area, that test came back normal as did my liver enzyme test) [The pale bowel color happens a lot less now that I am off Xanax and never happened before I took Xanax.]
During taper from Xanax and for 5 Months after (Jan 21st - July 2009) I vomited often, could not hold down food. Lost 30 lbs. During the same time I had bad cramps in my lower left colon and diarrhea. {Had been on xanax for a little over a year and have had anxiety for 18 years, this was NOT anxiety nor "rebound anxiety" coming off that pill made me sicker than I have EVER felt before.
Treated with Prevpac July 20th - Aug 3rd. to treat H. Pylori positive blood test done on March 28th 2009
Diarrhea became worse after Prevpac treatment Aug 3rd-Sept 20th 2009
Quit smoking Sept 18th 2009 shortly after quitting became constipated with pencil thin stool. Lower left side colon pain that comes and goes lasting a few days here and there.
Started taking Metamucil in Oct 2009- current. When I stopped I become constipated again. So I returned to taking it.
I have not seen blood and have seen no black stool.
--------------------------------------
In Sept. 1994 I had a sigmoidoscopy by my primary care doctor. He said "looks like you have a little colitis" in my medical chart it stated "Colitis vs. Chrohn's" because he wasn't sure. Six months later for unknown reasons he decided on Ulcertive colitis. After the sigmoidoscopy I was put on azulfidine and metamucil for a year. Any time I had cramping or bowel complains after that I was told I had IBS and it was all from anxiety.
Aug 2000 had Lung surgery for congenital lobar emphysema.
-------------
Current Symptoms:
I feel like my stomach is irritated and my throat burns often. This became worse after taking the prevpac.
Lower left colon pain/irritation.
I have a high standing pulse rate 110-120 standing, up from a sitting rate of 75 this happens often, but not all the time. I have a very high heart rate {140+} in the shower. After showers I often get gurgling in my stomach and sometimes loose stool. Takes an hour for my heart to come back down. This does not scare me I just know it is not normal.
After I eat my heart races and when my stomach is aggravated or my throat is burning my heart rate also races at times to 95-105bpm. Sometimes after eating I am getting an anxiety like reaction that passes an hour or so after I eat.
When I first stand up or sit down at times I get a very hard slow pounding heart beat and feel breathless for 15 seconds then it stops.
My goal is to get someone to believe what has happened to me and what is still happening to me because, then, I could maybe get a letter to a doctor that could state something like "We believe that this is not psychological, but a physiological problem.". Then, a "professional" would have stated that it is not being caused by anxiety and then maybe they would treat me better and more aggressivly look into what I have been telling them.
Also, I have a lot of issues outside some anxiety disorder that has been blown larger than life by doctors. I would like to discuss my relationship issues that I have with my boyfriend, my family issues, how it is to live as sick as I am, how to come to terms with the reality of my life, how to cope with going through all these medical tests and how to cope when and if something is found depending on what it is. Also, how to set up a support system.
I also fear my medicaid will be canceled soon and I think maybe they could give me a note stating I am unable to work at this time.
If this place is not for me I might try some place else.
I made a list this morning that I plan of taking with me to the Gastro appointment on the 25th of Jan. because even I won't remember it all or be able to get everything out in the 10 minutes I will be given. I tried to keep it as short as possible. Below is what I have:
-------------------------------
Pale bowel color on and off since 2007 (Dec. 2007 had an ultrasound of my gallbladder and liver area, that test came back normal as did my liver enzyme test) [The pale bowel color happens a lot less now that I am off Xanax and never happened before I took Xanax.]
During taper from Xanax and for 5 Months after (Jan 21st - July 2009) I vomited often, could not hold down food. Lost 30 lbs. During the same time I had bad cramps in my lower left colon and diarrhea. {Had been on xanax for a little over a year and have had anxiety for 18 years, this was NOT anxiety nor "rebound anxiety" coming off that pill made me sicker than I have EVER felt before.
Treated with Prevpac July 20th - Aug 3rd. to treat H. Pylori positive blood test done on March 28th 2009
Diarrhea became worse after Prevpac treatment Aug 3rd-Sept 20th 2009
Quit smoking Sept 18th 2009 shortly after quitting became constipated with pencil thin stool. Lower left side colon pain that comes and goes lasting a few days here and there.
Started taking Metamucil in Oct 2009- current. When I stopped I become constipated again. So I returned to taking it.
I have not seen blood and have seen no black stool.
--------------------------------------
In Sept. 1994 I had a sigmoidoscopy by my primary care doctor. He said "looks like you have a little colitis" in my medical chart it stated "Colitis vs. Chrohn's" because he wasn't sure. Six months later for unknown reasons he decided on Ulcertive colitis. After the sigmoidoscopy I was put on azulfidine and metamucil for a year. Any time I had cramping or bowel complains after that I was told I had IBS and it was all from anxiety.
Aug 2000 had Lung surgery for congenital lobar emphysema.
-------------
Current Symptoms:
I feel like my stomach is irritated and my throat burns often. This became worse after taking the prevpac.
Lower left colon pain/irritation.
I have a high standing pulse rate 110-120 standing, up from a sitting rate of 75 this happens often, but not all the time. I have a very high heart rate {140+} in the shower. After showers I often get gurgling in my stomach and sometimes loose stool. Takes an hour for my heart to come back down. This does not scare me I just know it is not normal.
After I eat my heart races and when my stomach is aggravated or my throat is burning my heart rate also races at times to 95-105bpm. Sometimes after eating I am getting an anxiety like reaction that passes an hour or so after I eat.
When I first stand up or sit down at times I get a very hard slow pounding heart beat and feel breathless for 15 seconds then it stops.
If you are suffering
If you are suffering from coming off a benzo or an antidepressant here are two lifesaving sites. Benzowithdrawal.com is the reason I am still here.
Click this link to visit Paxil Progress http://www.paxilprogress.org/forums
Click here to visit Benzowithdrawal.com http://benzowithdrawal.com
Click this link to visit Paxil Progress http://www.paxilprogress.org/forums
Click here to visit Benzowithdrawal.com http://benzowithdrawal.com
Tuesday, January 5, 2010
Sleep Clinic
I went to the sleep clinic yesterday for my consultation. The people there were actually really nice.
So, they have me keeping track of my sleep on a chart for a few weeks and then I go back to see them on the 28th of January. I guess from that point they will tell me when the sleep study will be. They said they want to get me sleeping better first. They don't use medication, so that is good.
They tried to look down my throat with a mirror, but couldn't and was going to put a tube up my nose and down my throat instead, but I declined because I was worried if I fainted or had a reaction to the numbing spray no one was there. She said it wasn't a big deal anyway and they would maybe just do it another time. I think I would have been fine, but since I get freaked out by stuff like that, I just didn't want to faint since no one was with me that could drive after.
When I do the sleep study it will take 30 minutes to wire me up. They will be measuring my heart, breathing and brain waves, also the level of sleep I am in and how long I am in REM.
Over all so far they were nice, the 28th I see the "sleep psychologist", so I don't know how that will be. They do think I have a circadian rhythm and there is a decent chance I have sleep apnea.
I never updated about the pulmonologist I saw. I went and I was explaining everything that is going on, both with my heart and with my breathing issues. At first it was going good. He was listening, writing everything down and asking questions. I though OK good. I didn't dare mention the xanax because I know right away that will end any help I will get. Then he turns his computer on to look at my chart and sure enough he pulls up my March 5th 2009 ER report [That was the first ER I went too, the one that told me to "eat pizza" when I had been throwing up for weeks]. I saw things like "history of agoraphobia", "claims paxil gave him a panic attack [which by the way I never said to them at all], "took himself off xanax [it was worded like I just decided to stop and never discussed it with a doctor, which I had and I tapered.]. Anyway from that point on I might as well just had left. He informed me that benzo withdrawal lasts four days and I am thinking "Are you fucking kidding me? Even all the fools I have dealt with even admit it lasts a month.". Four days?? Yeah OK. I really don't know who tells them this and where they get these ideas, esp. since their own studies show differently.
So to "ease my mind" I am going to have a breathing test done on Jan. 20th. I told him how when I mildly exercise how fast my heart goes and how it takes a long time to recover. He said "Well, I could do a stress test, but I don't think I would find anything, so I am not inclined too." Seriously?
Anyway, so I have the breathing test the 20th. I see the gastro doctor on the 25th and then the sleep psychologist on the 28th.
I have a lot of concerns about the gastro doctor because their are tests I might need that I do not feel safe having at this time, yet I also do not feel safe not having them. For example I have a constant sick feeling in my stomach...inside it feels aggravated and raw. Also the colon issues I am having with the left side pain. I am not very comfortable having these scopes because 1) Stuff like that does cause me anxiety and worry. 2) I don't like the risks involved. 3) They would sedate me for these tests and that could cause the benzo problem to flare back up in me because it has not been 2 years yet..that would be a nightmare, back at square one with everyone telling me "Its not the benzo". I mean I just gained back all the weight I dropped and I have enough problems without something like that happening again. At the same time these problems are getting pretty bad and my mother's father did get stomach cancer around my age and was dead at 40. I think if my digestive system felt better I would feel so much better as well. I don't know what to do when it comes to that.
On a different note my mother finally called me yesterday to see how the sleep clinic went. I have decided though that I will mainly let her just call me when she wants to talk because I know when I call her half the time she is in some mood or acts like I am bothering her.
So, they have me keeping track of my sleep on a chart for a few weeks and then I go back to see them on the 28th of January. I guess from that point they will tell me when the sleep study will be. They said they want to get me sleeping better first. They don't use medication, so that is good.
They tried to look down my throat with a mirror, but couldn't and was going to put a tube up my nose and down my throat instead, but I declined because I was worried if I fainted or had a reaction to the numbing spray no one was there. She said it wasn't a big deal anyway and they would maybe just do it another time. I think I would have been fine, but since I get freaked out by stuff like that, I just didn't want to faint since no one was with me that could drive after.
When I do the sleep study it will take 30 minutes to wire me up. They will be measuring my heart, breathing and brain waves, also the level of sleep I am in and how long I am in REM.
Over all so far they were nice, the 28th I see the "sleep psychologist", so I don't know how that will be. They do think I have a circadian rhythm and there is a decent chance I have sleep apnea.
I never updated about the pulmonologist I saw. I went and I was explaining everything that is going on, both with my heart and with my breathing issues. At first it was going good. He was listening, writing everything down and asking questions. I though OK good. I didn't dare mention the xanax because I know right away that will end any help I will get. Then he turns his computer on to look at my chart and sure enough he pulls up my March 5th 2009 ER report [That was the first ER I went too, the one that told me to "eat pizza" when I had been throwing up for weeks]. I saw things like "history of agoraphobia", "claims paxil gave him a panic attack [which by the way I never said to them at all], "took himself off xanax [it was worded like I just decided to stop and never discussed it with a doctor, which I had and I tapered.]. Anyway from that point on I might as well just had left. He informed me that benzo withdrawal lasts four days and I am thinking "Are you fucking kidding me? Even all the fools I have dealt with even admit it lasts a month.". Four days?? Yeah OK. I really don't know who tells them this and where they get these ideas, esp. since their own studies show differently.
So to "ease my mind" I am going to have a breathing test done on Jan. 20th. I told him how when I mildly exercise how fast my heart goes and how it takes a long time to recover. He said "Well, I could do a stress test, but I don't think I would find anything, so I am not inclined too." Seriously?
Anyway, so I have the breathing test the 20th. I see the gastro doctor on the 25th and then the sleep psychologist on the 28th.
I have a lot of concerns about the gastro doctor because their are tests I might need that I do not feel safe having at this time, yet I also do not feel safe not having them. For example I have a constant sick feeling in my stomach...inside it feels aggravated and raw. Also the colon issues I am having with the left side pain. I am not very comfortable having these scopes because 1) Stuff like that does cause me anxiety and worry. 2) I don't like the risks involved. 3) They would sedate me for these tests and that could cause the benzo problem to flare back up in me because it has not been 2 years yet..that would be a nightmare, back at square one with everyone telling me "Its not the benzo". I mean I just gained back all the weight I dropped and I have enough problems without something like that happening again. At the same time these problems are getting pretty bad and my mother's father did get stomach cancer around my age and was dead at 40. I think if my digestive system felt better I would feel so much better as well. I don't know what to do when it comes to that.
On a different note my mother finally called me yesterday to see how the sleep clinic went. I have decided though that I will mainly let her just call me when she wants to talk because I know when I call her half the time she is in some mood or acts like I am bothering her.
Monday, January 4, 2010
Well I am not paying
On the 31st of December I called my mom to talk. Her and I talk often, which over all if you knew everything about my life, you would understand that talking to my mom (or either parent for that matter) daily would not be the best for me emotionally. Either way I called like normal. I was telling her about what I have been reading the past few weeks about Postural orthostatic tachycardia syndrome. I also discussed (as I often do to anyone who will listen because I feel so desperate at this point) how sick I still feel. I told her about how unfortunately there are no doctors in Albany that specialize in POTs or the diagnosis of it, that dysautonomias in general were not widely understood in this area.
This of course (like many things my whole life when it comes to my parents) took a turn
"Well how are you going to get to New York City to see one of those doctors?".
"I would drive." I said
"Well you better check him out 100% and make sure he will actually diagnosis you with this!"
"How can I make 100% sure the doctor will diagnosis me with it. That is why I would be going to rule it out." I said
"Well if he tells you, you don't have it then what?"
"Well then I would have to keep looking." I said
"Looking for what...whats next?!"
I said "I don't know, but I am not just going to say oh well and sit here sick. I know my body and I know something is wrong."
"Well don't expect up to pay for it...we don't have $5000 dollars for a test."
"I didn't ask you to pay for it and I have no idea how much it costs." I said
"No way...we are retired now and I am putting my foot down. We don't have $5,000 to $20,000 dollars for some test...and you better find out how often you would have to see him, cause he could have you running down there several times...it would cost a fortune!"
"I never asked you for a dime for it, but I sure as hell am not going to sit here sick as hell just because you or anyone else thinks I should." I said
"Well fine, you figure out how to pay for all this then!"
I said "You know what I think is sad. I didn't ask you for any money for this, but I think it is sick that you would actually let me sit here sick and not pay for a medical test, when I know if your car broke tomorrow you guys would run right out and just buy a new one." (my parents just buy cars out right they don't get loans.) I said.
"It is no ones Goddamn business if I get a new car." (completely missing my point).
"I am just saying its sad you would let me stay sick." I said
"Well look it....what I have is real." (referring to her cancer..this pissed me off because I am so tired of pity cards being thrown at me. Everyone can suffer and be ill, but not me.)
I said "Like what I have isn't real? I am sorry mom, but for years of me being sick it was always something with you. I can't talk about this right now because my arm hurts, my high blood pressure, my stress and now its my cancer. If you didn't have cancer you would be treating me the exact same way as you always do and the word cancer would just be filled in with something else."
A lot more was said back and forth..at some point she told me how I am "selfish". If being sick, talking about it and trying to find out what is wrong is selfish, then I guess I am. In the past I have been told that I am lazy and that is why I don't work.
When I was very sick and had to stay at my parents house for a few months last year, my mom was scared of taking a lot of the pain medication they gave her. So I sat with her and she told me how she was thankful that I was there with her because she was scared of taking all those pills alone. The next day she was feeling better and I was having a very hard day. I had thrown up in the backyard that morning and unable to keep any food down. When I cried in the kitchen because I was so weak and scared about what was happening to me she told me "Look I don't have time for this right now. I have to get the ironing done, so go lay down if you don't feel well." Again I know because of the cancer thing it makes it all seem ok maybe, but this is the same treatment that I have gotten my whole life. One minute she is there for me and the next she gets annoyed and yells about it.
So she has not called me again since that phone call. I called yesterday the 3rd of Jan. I figure its stupid to not speak and a waste of time. My father answered, he hardly ever does. He talked to me for a few minutes. I asked him what mom was doing and he said "She is cooking. Yea she is frying stuff up." There was no "I will call him back." I know my mother, she just does not want to talk to me, just like when she doesn't want to talk to my sister, she makes a face and waves her hand like "No I don't want too."
Well I called, so when she calls me she does. I am tired of all the games. I am also not going to keep putting up with mistreatment from anyone (thought I have to to a point). All those years I drank, smoked and was on a medication here or there... I was just simply sedated or chemically changed my personality to cope with mistreatment I received from others. Mainly my parents. I will not hold back on things anymore.
This of course (like many things my whole life when it comes to my parents) took a turn
"Well how are you going to get to New York City to see one of those doctors?".
"I would drive." I said
"Well you better check him out 100% and make sure he will actually diagnosis you with this!"
"How can I make 100% sure the doctor will diagnosis me with it. That is why I would be going to rule it out." I said
"Well if he tells you, you don't have it then what?"
"Well then I would have to keep looking." I said
"Looking for what...whats next?!"
I said "I don't know, but I am not just going to say oh well and sit here sick. I know my body and I know something is wrong."
"Well don't expect up to pay for it...we don't have $5000 dollars for a test."
"I didn't ask you to pay for it and I have no idea how much it costs." I said
"No way...we are retired now and I am putting my foot down. We don't have $5,000 to $20,000 dollars for some test...and you better find out how often you would have to see him, cause he could have you running down there several times...it would cost a fortune!"
"I never asked you for a dime for it, but I sure as hell am not going to sit here sick as hell just because you or anyone else thinks I should." I said
"Well fine, you figure out how to pay for all this then!"
I said "You know what I think is sad. I didn't ask you for any money for this, but I think it is sick that you would actually let me sit here sick and not pay for a medical test, when I know if your car broke tomorrow you guys would run right out and just buy a new one." (my parents just buy cars out right they don't get loans.) I said.
"It is no ones Goddamn business if I get a new car." (completely missing my point).
"I am just saying its sad you would let me stay sick." I said
"Well look it....what I have is real." (referring to her cancer..this pissed me off because I am so tired of pity cards being thrown at me. Everyone can suffer and be ill, but not me.)
I said "Like what I have isn't real? I am sorry mom, but for years of me being sick it was always something with you. I can't talk about this right now because my arm hurts, my high blood pressure, my stress and now its my cancer. If you didn't have cancer you would be treating me the exact same way as you always do and the word cancer would just be filled in with something else."
A lot more was said back and forth..at some point she told me how I am "selfish". If being sick, talking about it and trying to find out what is wrong is selfish, then I guess I am. In the past I have been told that I am lazy and that is why I don't work.
When I was very sick and had to stay at my parents house for a few months last year, my mom was scared of taking a lot of the pain medication they gave her. So I sat with her and she told me how she was thankful that I was there with her because she was scared of taking all those pills alone. The next day she was feeling better and I was having a very hard day. I had thrown up in the backyard that morning and unable to keep any food down. When I cried in the kitchen because I was so weak and scared about what was happening to me she told me "Look I don't have time for this right now. I have to get the ironing done, so go lay down if you don't feel well." Again I know because of the cancer thing it makes it all seem ok maybe, but this is the same treatment that I have gotten my whole life. One minute she is there for me and the next she gets annoyed and yells about it.
So she has not called me again since that phone call. I called yesterday the 3rd of Jan. I figure its stupid to not speak and a waste of time. My father answered, he hardly ever does. He talked to me for a few minutes. I asked him what mom was doing and he said "She is cooking. Yea she is frying stuff up." There was no "I will call him back." I know my mother, she just does not want to talk to me, just like when she doesn't want to talk to my sister, she makes a face and waves her hand like "No I don't want too."
Well I called, so when she calls me she does. I am tired of all the games. I am also not going to keep putting up with mistreatment from anyone (thought I have to to a point). All those years I drank, smoked and was on a medication here or there... I was just simply sedated or chemically changed my personality to cope with mistreatment I received from others. Mainly my parents. I will not hold back on things anymore.
Saturday, January 2, 2010
It was never "just anxiety"
In my last blog I had posted some information about postural orthostatic tachycardia syndrome. It is something I have looked at on and off, esp. while in benzo withdrawal. Anyone who reads this blog knows that back then my heart rate usually was 100 beats sitting and 130-140 standing. I seriously started to read about postural orthostatic tachycardia syndrome over the past few weeks. It would explain the last 20 years of my life. 99% of what I have experienced and my avoidance behaviors would match this disorder. First I need to clear up a few things. I am not saying I am not prone to having anxiety, because I know I am. I was a nervous child and I think it is just something I have to live with. However I never believed the reason why I was so sick was from "anxiety". I think a lot of people are told they have anxiety and in fact don't. To me the label is broad and a cop-out.
I spent years in and out of therapy to treat "my anxiety". I was always told I was so insightful by the therapists and no matter what they said I would answer with the real reason, not what they were trying to get me to say. Truth is I do not believe in self fulfilling prophecies. My reason is this. When I would have mild stress many times in my life I would throw up. It was claimed that it was "because you are worried you will throw up, so you do..it is a self fulfilling prophecy." Really? Then what about the first time it happened as a teen? I certainly was not worried about it then, after all it had never happened before from stress. What of all the times and there were many that I worried I would throw up and never did, where was my self fulfilling prophecy then? I have come to believe that in many ways psychiatry is nothing more than a pseudo science. I also think it can cause horrible damage to a person. I know from personal experience the hardship those pills have caused me. This is the point where someone says "I feel great and I have no side effects." No side effects that you know of. You have no idea if your DNA is slowly being mutated. Let me put it this way. I can snort cocaine and have a heart attack. You might be able to snort coke for 20 years and be fine. It doesn't make cocaine safe. "But that is not the same thing??!!". Really? Cause Cocaine was a psych drug at one time. Don't forget psychiatry is also what brought you the lobotomy.
I do not believe that in most causes the labeling of a psych disorder is even correct. So many illnesses are known to cause depression. The difference is in many cases the persons doctor never runs all the tests to make sure their is no "organic" health problem or there is no test to run yet because the illness causing the depression has not been discovered by science yet. (Of course I am not talking of depression caused by life, such as a loss of a loved one. That is depression plain and simple.)
OK I got off track. The point is I never believed this was an "anxiety disorder". The word agoraphobia was pounded into me and truth is I don't not go outside because I am "scared to", I don't go outside because often times I do not feel well enough to go outside. I do not travel far away because I often don't feel well enough in my own apartment and the last thing I want is to be on some highway driving or on vacation where in all honestly I am not able to rest the way I can in my own private apartment.
I will list just some of what I go through and have for a long time. Some symptoms have become worse over the years and others have stayed the same. Many have become exacerbated from whatever the xanax and the single dose of paxil did to me back in 2009.
1) Every morning I wake up and feel zoned out and sick. It takes me sometimes 5 to 6 hours to wake up and feel alive.
2) I have fatigue so bad that I am unable many times to keep my apartment clean, take out the trash or shower as often as I would like.
3) When I shower my heart rate in the shower is 130-140 beats a minute. When I get out of the shower it can take over an hour for my heart rate to return to normal. Often times after a shower my intestines start to gurgle and I can have diarrhea. The shower can leave me wore out and tired and not refreshed at all.
4) I am heat intolerant. Even mild discomfort in the heat causes a high heart rate, skipped beats and anxiety feelings.
5) When I stand up if my sitting heart rate was 70, it might go to 90 which is not bad, sometimes I am lucky and it stays there, often a few minutes later it will be 110-120 that is a 40-50 beat, increase just standing in the absence of dehydration.
6) I am thirsty often and I urinate often even at night sometimes I have to get up a few times. My blood sugar is normal.
7) I have a hard time standing in lines. Yes it causes me anxiety, but I have just as much discomfort standing for the same about of time in front of my couch alone. It is not some anxiety about being in the store, other than the fact I don't like feeling like that alone, let alone in public.
8) Low exercise tolerance. Just walking on my treadmill at 2mph brings my heart rate to 140. I am left tired for many hours after and with an elevated heart rate for over an hour as well.
9) When I stand up often my heart pounds very hard for about 10 secs. It also often pounds very hard when I sit down fast. These are slow, hard pounds.
10) I lose my appetite and can hardly eat for days, not because of some stressful event (granted that could cause that in me or many people), but just because I am no longer hungry.
11) Cramps in my colon, like IBS, that at times in the past have been so painful on the left side that I could pass out from the pain.
12) Insomnia. I can't fall asleep often. Sometimes I get 4 hours of sleep in 48 hours. I am not manic during it. There is no hyper mood, just a sick feeling because I am unable to sleep as I zone out looking at the computer screen waiting till I can sleep.
13) Sometimes I have events that wake me up out of my sleep. Like I am choking or being suffocated. I roll over and go back to sleep. There is a weird burning in my bronchial tubes at times during it.
14) Sometimes when I first wake up in the morning. The very second I am awake and my eyes are still closed, my heart starts to pound and race for about 10 seconds and then I no longer can feel my heart beating and it is back to normal. It is uncomfortable when it happens.
15) Acid reflux. I feel full and bloated at times as well. I can wake up and my belly is flat and by the time I go to bed it looks like I am 6 months pregnant. Sometimes even though I have no heartburn I can feel my throat burning.
16) My pupils get weird. I have been asked in the past by people my age "Hey Bri, what you on?" Because they think I have some good drugs for them because they at times dilate out. Also when I take tylenol (and I am sure many other drugs would effect this as well) an hour later if I look at my pupils they are going in and out in a shaky fashion. It is hard to explain, but tylenol changes the way my pupils act.
17) My hands turn purples when they are at my sides. My feet can turn purple as well and become cold.
18) Sometimes my feet feel ice cold to me and when I touch them they are not cold at all or only mildly cold. The parts of my socks where my toes are are wet because my toes sweat all the time now.
19) Small movements cause my heart to temperately race. I can reach for the tv remote and my heart takes off racing, maybe about a 20 beat increase, then back down.
There are so many more issues I have, but I would say those are the ones that pop in my head right away. I was going to discuss something in this blog post that happened on the 31st of Dec., but I will update that in the next blog since this one has become long enough.
I spent years in and out of therapy to treat "my anxiety". I was always told I was so insightful by the therapists and no matter what they said I would answer with the real reason, not what they were trying to get me to say. Truth is I do not believe in self fulfilling prophecies. My reason is this. When I would have mild stress many times in my life I would throw up. It was claimed that it was "because you are worried you will throw up, so you do..it is a self fulfilling prophecy." Really? Then what about the first time it happened as a teen? I certainly was not worried about it then, after all it had never happened before from stress. What of all the times and there were many that I worried I would throw up and never did, where was my self fulfilling prophecy then? I have come to believe that in many ways psychiatry is nothing more than a pseudo science. I also think it can cause horrible damage to a person. I know from personal experience the hardship those pills have caused me. This is the point where someone says "I feel great and I have no side effects." No side effects that you know of. You have no idea if your DNA is slowly being mutated. Let me put it this way. I can snort cocaine and have a heart attack. You might be able to snort coke for 20 years and be fine. It doesn't make cocaine safe. "But that is not the same thing??!!". Really? Cause Cocaine was a psych drug at one time. Don't forget psychiatry is also what brought you the lobotomy.
I do not believe that in most causes the labeling of a psych disorder is even correct. So many illnesses are known to cause depression. The difference is in many cases the persons doctor never runs all the tests to make sure their is no "organic" health problem or there is no test to run yet because the illness causing the depression has not been discovered by science yet. (Of course I am not talking of depression caused by life, such as a loss of a loved one. That is depression plain and simple.)
OK I got off track. The point is I never believed this was an "anxiety disorder". The word agoraphobia was pounded into me and truth is I don't not go outside because I am "scared to", I don't go outside because often times I do not feel well enough to go outside. I do not travel far away because I often don't feel well enough in my own apartment and the last thing I want is to be on some highway driving or on vacation where in all honestly I am not able to rest the way I can in my own private apartment.
I will list just some of what I go through and have for a long time. Some symptoms have become worse over the years and others have stayed the same. Many have become exacerbated from whatever the xanax and the single dose of paxil did to me back in 2009.
1) Every morning I wake up and feel zoned out and sick. It takes me sometimes 5 to 6 hours to wake up and feel alive.
2) I have fatigue so bad that I am unable many times to keep my apartment clean, take out the trash or shower as often as I would like.
3) When I shower my heart rate in the shower is 130-140 beats a minute. When I get out of the shower it can take over an hour for my heart rate to return to normal. Often times after a shower my intestines start to gurgle and I can have diarrhea. The shower can leave me wore out and tired and not refreshed at all.
4) I am heat intolerant. Even mild discomfort in the heat causes a high heart rate, skipped beats and anxiety feelings.
5) When I stand up if my sitting heart rate was 70, it might go to 90 which is not bad, sometimes I am lucky and it stays there, often a few minutes later it will be 110-120 that is a 40-50 beat, increase just standing in the absence of dehydration.
6) I am thirsty often and I urinate often even at night sometimes I have to get up a few times. My blood sugar is normal.
7) I have a hard time standing in lines. Yes it causes me anxiety, but I have just as much discomfort standing for the same about of time in front of my couch alone. It is not some anxiety about being in the store, other than the fact I don't like feeling like that alone, let alone in public.
8) Low exercise tolerance. Just walking on my treadmill at 2mph brings my heart rate to 140. I am left tired for many hours after and with an elevated heart rate for over an hour as well.
9) When I stand up often my heart pounds very hard for about 10 secs. It also often pounds very hard when I sit down fast. These are slow, hard pounds.
10) I lose my appetite and can hardly eat for days, not because of some stressful event (granted that could cause that in me or many people), but just because I am no longer hungry.
11) Cramps in my colon, like IBS, that at times in the past have been so painful on the left side that I could pass out from the pain.
12) Insomnia. I can't fall asleep often. Sometimes I get 4 hours of sleep in 48 hours. I am not manic during it. There is no hyper mood, just a sick feeling because I am unable to sleep as I zone out looking at the computer screen waiting till I can sleep.
13) Sometimes I have events that wake me up out of my sleep. Like I am choking or being suffocated. I roll over and go back to sleep. There is a weird burning in my bronchial tubes at times during it.
14) Sometimes when I first wake up in the morning. The very second I am awake and my eyes are still closed, my heart starts to pound and race for about 10 seconds and then I no longer can feel my heart beating and it is back to normal. It is uncomfortable when it happens.
15) Acid reflux. I feel full and bloated at times as well. I can wake up and my belly is flat and by the time I go to bed it looks like I am 6 months pregnant. Sometimes even though I have no heartburn I can feel my throat burning.
16) My pupils get weird. I have been asked in the past by people my age "Hey Bri, what you on?" Because they think I have some good drugs for them because they at times dilate out. Also when I take tylenol (and I am sure many other drugs would effect this as well) an hour later if I look at my pupils they are going in and out in a shaky fashion. It is hard to explain, but tylenol changes the way my pupils act.
17) My hands turn purples when they are at my sides. My feet can turn purple as well and become cold.
18) Sometimes my feet feel ice cold to me and when I touch them they are not cold at all or only mildly cold. The parts of my socks where my toes are are wet because my toes sweat all the time now.
19) Small movements cause my heart to temperately race. I can reach for the tv remote and my heart takes off racing, maybe about a 20 beat increase, then back down.
There are so many more issues I have, but I would say those are the ones that pop in my head right away. I was going to discuss something in this blog post that happened on the 31st of Dec., but I will update that in the next blog since this one has become long enough.
Friday, January 1, 2010
Postural Orthostatic Tachycardia Syndrome
I have so much I need to say to get everyone caught up with my life. However for tonight I will just post this.
I think I know what is finally wrong with me and I think the xanax withdrawal made if worse for awhile which could be a blessing as much as it was hell to go through...I have 100's of health issues that doctors blow off as "just stress", "just anxiety", "I have never heard that before [weird look]", "you're silly" and I have had them all for over a decade...and I finally found something that explains them all because every last thing that I feel and experience is found in this disorder "Postural Orthostatic Tachycardia Syndrome".
There is so much to read about it, but here is a good bit of information to help you understand what it is. I don't know if this is what I have and unfortunately there is no doctor in Albany, NY. who specializes in this. The closest to me is in New York City, which is about 158 miles away.
I will copy and paste the information below with a link to the page it came from.
"Tachycardia means an extremely rapid heart rate, usually described as a pulse rate of over 100 beats per minute (bpm). Postural Orthostatic Tachycardia Syndrome (POTS) is usually clinically defined as a heart rate increase of 30 bpm or more from the supine (laying down) to the standing position within 10 minutes or less. Patients with florid POTS develop tachycardia over 120 bpm within 5 minutes or less. Some doctors use a strict 5 minute standard for defining POTS, while others use a 20 minute standard. Some patients have heart rates that go all the way up to 150 bpm and beyond. During tilt table testing, some POTS patients have large drops in blood pressure and pass out (syncope), while other patients have only relatively shallow drops in blood pressure. A small percentage of POTS patients have no drop in blood pressure at all. Studies show that about 75% of POTS patients are women and that a genetic tendency to develop POTS is often transferred from mother to daughter.
For a correct diagnosis of POTS there must be an absence of any other known cause of tachycardia, such as a specific heart condition. POTS is usually accompanied by frequent spells of neurally mediated hypotension (NMH), but this is not always the case. NMH means low blood pressure while standing, caused by a defect in the function of the autonomic nervous system. A minority of patients exhibit no measurable lowering of blood pressure during tilt table testing. Some patients may experience an increase in standing blood pressure due to an abnormal overcompensation of the autonomic nervous system to the orthostatic stress of the upright position.
The brain is the most metabolically active organ in the body and requires a steady supply of oxygen and glucose to maintain healthy function. Although the brain represents only 1-2% of the body's mass, it utilizes 20% of the body's oxygen consumption and 15% of cardiac output. Our brains are thus highly dependent on adequate blood circulation to maintain our sense of health and well being. The thought process, regulation of body temperature, hormone release, and many autonomic systems can be impaired by loss of proper blood pressure control. Our survival is as dependent on adequate blood pressure regulation as on the fundamental process of breathing.
A UCLA medical study found that women tolerate stress better than men, thus the claim by some uninformed doctors that POTS is caused by "stress" rather than an underlying physical disease process is not based on the scientific evidence. If stress caused POTS, then men would develop POTS more often than women, the exact opposite of what accepted statistics indicates is the case. Men have a stronger adrenaline fight or flight reaction to stress than women and are less prone to work out problems with friends and family. Researchers found that women have higher levels of a hormone called oxytocin. "Animals and people with high levels of oxytocin are calmer, more relaxed, more social and less anxious. In several animal species, oxytocin leads to maternal behavior and to affiliation."
Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system's regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.
Causes What causes POTS? The answer to that question can be answered with a pie chart showing multiple causes, not by any one line statement. Postural intolerance has been likened to a fever in that it is a symptom which can have many diverse root causes, both central and peripheral. It is extraordinarily easy to induce orthostatic intolerance in human beings, and that is why most mammals have four legs, not just two. Even our close genetic relatives, monkeys, chimpanzees, and apes, do not usually stand erect as humans do. Just becoming dehydrated or overly heated can cause temporary orthostatic intolerance, so it should be no surprise that there are many proven and suspected causes. Although gaps in our medical knowledge remain, most of the main root causes for the development of POTS have been identified and are listed below as general categories.
Please remember that very little is ever 100% proven in the field of science. Eternal doubt is an intrinsic part of the scientific method. This page passes on the latest theories and accepted "facts," but does not guarantee that better facts and theories will not make some items on this list obsolete in the future.
1) Viral and bacterial infections that damage the autonomic nervous system are a common cause. Patients who develop POTS due to an infection, with no deeper underlying genetic cause, have the best chance for a spontaneous recovery over time.
2) The development of POTS in women after childbearing is very common and may be due to changes in blood volume during pregnancy.
3) Exposure to toxic chemicals which damage the autonomic nervous system can cause POTS. This group includes adverse reactions to prescription drugs. Some Gulf War veterans have developed POTS like symptoms after being exposed to small amounts of nerve gas, insecticides, and inadequately tested experimental drugs.
4) POTS can be caused by genetically inherited neurotransmitter disorders, including disorders of catecholamine production and release, such as Norepinephrine-Transporter Deficiency.
5) POTS can be caused by peripheral nerve damage due to rapid weight loss, diabetes, and alcoholism. Doctors at the Mayo Clinic have identified autoantibodies specific for nicotinic acetylcholine receptors in the autonomic ganglia, which are believed to cause of approximately 10% of all POTS cases. Doctors at Vanderbilt University believe that some POTS cases are caused by a partial sympathetic denervation, especially in the legs.
6) POTS can be a phase in the gradual onset of Shy-Drager Syndrome.
7) Damage to the vagus nerve can be a cause and there have been documented cases of patients developing neurally mediated hypotension and POTS after undergoing radiation treatment to the neck.
8) There is a mixed bag of less common potential causes, both genetic and acquired. Ehlers-Danlos syndrome, a connective tissue disorder which permits veins to dilate excessively, is now an accepted cause of POTS. Essentially anything that can damage the brain stem and important autonomic nervous system structures can cause POTS.
Symptoms
POTS is diagnosed on the basis of heart rate increase and heart waveform signature revealed by electrocardiogram, not on the basis of a drop in blood pressure, as is the case with orthostatic hypotension and neurally mediated hypotension (NMH). Neurally mediated hypotension is commonly associated with POTS, but having NMH is not a prerequisite for a diagnosis of POTS. The secondary symptoms of POTS vary significantly from case to case. The most commonly reported symptoms are listed below.
The length of time POTS patients can comfortably stand varies widely from case to case. Patients may become dizzy, lightheaded, and develop chest and heart pain from standing beyond their limit. Blood pooling in the legs and splanchnic bed (abdomen) may occur, which is felt in the same way you feel water fills your mouth when you get a drink. Shortness of breath, blurry vision, tingling in the legs, sweating, and feelings of heat from increased adrenaline production are common symptoms of orthostatic stress. Some patients pass out frequently, which is dangerous as well as uncomfortable. Many patients experience spells of supine or standing vertigo, but this symptom is dependent on the root cause of the POTS. Remember that POTS itself in not a specific disease like polio, but rather a symptom and a syndrome (a collection of symptoms).
The current prevailing theory is that the heart pain associated with POTS is predominately non-ischemic, but further research may alter this perception. It is believed the left sided heart pain so common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. It is not related to common angina which is usually caused by blocked arteries cutting off the supply of blood to the heart. While uncomfortable and debilitating, this left sided heart pain is not believed to be immediately life threatening.
With POTS and NMH you become lightheaded and weak even before you get a measured crash in blood pressure because the small blood vessels in the brain paradoxically constrict when you are under orthostatic stress. This cerebral vasoconstriction cuts off the blood supply to brain cells while veins in the legs and splanchnic bed are dilated and pooling blood away from your heart. With inadequate filling of the heart's left ventricle and abnormal function of the alpha and beta adrenergic systems, it is no wonder that strange and irregular heart beats (palpitations) are a universal symptom of POTS. These are often referred to as ectopic heartbeats, with frequent premature heartbeats the most common aberration reported.
POTS often generates a temporary rise in blood pressure immediately upon standing due to the rapid acceleration of heart rate. Tachycardia is the body’s defense mechanism against a lack of sufficient venous blood returned to the heart. Blood vessels, particularly veins, can become unnaturally dilated, causing blood pooling in the legs and splanchnic bed. Thus the heart must beat more times in a minute to make up for the reduced blood volume transferred by each beat. If a POTS patient stands up too suddenly, there may be so little blood in the heart that it may collapse upon itself, causing very painful heartbeats. Patients often have measurably low standing pulse pressure, which can be an indicator of venous pooling.
Frequent urination is a common symptom of POTS, NMH, and severe cases of CFS. This problem is sometimes misdiagnosed as diabetes insipidus, which is a disease caused by reduced production of a pituitary hormone called vasopressin. Some POTS patients develop a diabetes insipidus like syndrome which is believed to be caused by somewhat reduced vasopressin output, low blood volume, and disruption of the alpha adrenergic system, which helps the kidneys retain water and sodium.
Reactive hypoglycemia is a common problem for both POTS and CFS patients, and occurs through a complex series of neural and hormonal interactions which are not yet fully understood. The traditional definition of hypoglycemia is an abnormal lowering of blood sugar levels after the body overreacts to carbohydrates with excessive insulin production. Researchers now understand that this lowering of blood sugar levels is not the only cause of symptoms. Recent studies show that when patients with reactive hypoglycemia eat carbohydrates, which cause a sudden increase in blood glucose levels, their bodies abnormally produce excessive amounts of adrenaline and other stress hormones. These stress hormones themselves cause many negative symptoms of their own in addition to the eventual crash in blood glucose levels due to excessive reactive insulin production.
Most patients with POTS have difficulty sleeping, which may result from a number of factors, including abnormally high adrenaline levels caused by increased orthostatic stress (the stress of standing). Central sleep apnea is a problem for some people with POTS, which in some cases may be due to damage to the medulla, which controls important cardiac and respiratory functions. Central sleep apnea causes breathing to temporarily stop while sleeping.
Low grade fevers, mild chills, and general flu like symptoms are common with POTS. This may be explained by a neurologically based loss of control of basic autonomic regulatory systems, an overactive immune system, or abnormally high adrenaline levels effecting body heat production. Many patients have positive anti-nuclear antibody tests (ANA test), which some doctors say is due to high adrenaline levels activating the immune system. Other doctors suggest positive ANA tests may be due to an autoimmune disorder damaging nerve cells. Patients are left in confusion as to which theory to believe.
Chronic fatigue and weakness are common problems for POTS sufferers. Those who have pure POTS, without CFS or significant immune system involvement, generally feel better and have greater postural tolerance despite tachycardia. Many POTS patients have common allergies, uncommon food allergies, and are highly drug and chemical sensitive. Many POTS and CFS patients experience severe night sweats.
Nausea, bloating, and sore intestines are a frequent complaint. The nausea can usually be eliminated by not stressing yourself beyond your capabilities. Bloating is caused by low motility in the intestines. Patients often develop irritable bowel syndrome, which leaves the intestines feeling raw and tender. Difficulty swallowing (dysphagia - pronounced dis-FAY-jee-uh) is also a frequently reported problem.
Numbness in palms and soles is a common symptom of POTS. Legs, arms, and hands are often totally numb upon awakening from sleep. Upper extremity somatosensory evoked potential studies are usually normal in POTS and CFS patients, but this is not always the case. Unusual coldness of the hands is also common and is referred to as acral coldness. Patients frequently experience sporadic itchiness, burning and tingling sensations all over the body, especially at night. Some patients may also have dramatically reduced sweating, which can be tested for through a thermoregulatory sweat test.
Most POTS patients have poor balance, which may be caused by decreased blood flow to the brain and other disturbances in the vestibular system. The patient's root neurological damage may also cause balance problems directly as well as causing the debilitating symptom of orthostatic intolerance. Patients are often unable to pass a drunk test by walking with one foot placed directly in front of the other. An abnormal gait is common. Patients may walk with legs wide apart and feet flared out to the sides as an instinctive adaptive response to increase their stability.
Eye pain is another common problem, as is a feeling of pressure behind the eyes. Patients can become so weak that their eye muscles are easily strained and focusing is difficult. Many POTS and CFS patients see tiny little black dots floating in front of their eyes. This is a problem of the fluid in the eyes which occurs naturally with age, but which can be made dramatically worse by the onset of CFS or POTS.
Supine blood pressure readings are usually normal or below normal in POTS patients. This is in sharp contrast to multiple system atrophy (Shy-Drager syndrome), idiopathic orthostatic hypotension (Bradbury-Eggleston syndrome), and other forms of central autonomic failure typified by low standing blood pressure and high supine blood pressure. Lack of supine hypertension (high blood pressure when lying down) is usually a sign you do not suffer from the classic forms of central autonomic failure.
Most POTS patients will only have a few of the symptoms listed here, while others will have unique symptoms all their own. A poor memory is a major symptom of POTS, and many patients will have a difficult time just remembering their own symptoms while conversing with doctors. The total damage to the autonomic nervous system POTS sufferers experience, called dysautonomia, causes what Dr. David Robertson of Vanderbilt University refers to as “mild autonomic abnormalities.” These symptoms, such as frequent urination and reactive hypoglycemia, are not life threatening, but they are quality of life destroying.
People who do not have problems with low blood pressure have a difficult time understanding the concept of orthostatic stress. They fail to realize that blood pressure is as basic and essential a bodily function as breathing. How would you feel if your breathing were constricted for even one minute? Low blood pressure can cause an enormous amount of symptoms and suffering, but those who don’t have it often miss that fundamental point. Some patients with POTS have such a damaged regulatory system that they may get paradoxical wild swings in blood pressure from below 50 to over 200. Complexly, POTS can be a low and high blood pressure problem combined.
Treatment Treating patients with POTS and neurally mediated hypotension is often very difficult. When you stand up your body should automatically constrict blood vessels to help maintain blood pressure in the face of increased orthostatic stress. In the standing position, gravity wants to pull your blood down to your feet. When you lie down, your body should automatically dilate blood vessels as gravity is no longer a force to fight against. With POTS this automatic regulatory system breaks down and blood begins to pool in places where it should be flowing rapidly. The heart is then stressed with the added work of trying to pull all that blood uphill without help from the much needed alpha adrenergic constriction process.
Non-drug treatments have low risk and high rewards
Adding lots of extra salt to the diet can increase both blood volume and blood pressure by increasing fluid retention. One must increase fluid intake for salt to effectively expand blood volume. The use of a large, stainless steel chef's style salt shaker can be helpful. A high salt diet should only be tried under the recommendation and supervision of your doctor.
Pouring lots on ordinary table salt on food works better for most people than the use of salt tablets. Salt tablets can irritate the stomach, cause vomiting, and tends to centralize body fluids in the digestive tract, which is not good for either blood volume or blood pressure. For most people salt goes into the human body more smoothly and easily when mixed with food.
Patients with POTS and/or neurally mediated hypotension should avoid garlic and nitrates in food, which lower blood pressure. Most patients also need to give up alcohol, coffee, tea, and adrenaline stimulating herbs like ginseng. Try to avoid eating heavy meals as overloading the stomach decreases orthostatic tolerance by drawing blood to the digestive tract and away from main arteries which feed the brain.
Make sure you exercise every day when you are able. Try to keep your muscles alive, as they produce the natural vasoconstricting hormone norepinephrine. Good muscle tone, especially in the legs, helps limit abnormal blood vessel dilation and blood pooling. Severely affected patients may find any amount of exercise difficult, but one can slowly increase activity over time as you improve. Even just ten, two minute walks a day adds up to twenty minutes of walking, which can help maintain vital muscle mass and thus increase your orthostatic tolerance.
During the day it is better to rest in a recliner chair rather than lying in bed, as constant bed rest decreases orthostatic tolerance dramatically. Astronauts often develop a temporary form of orthostatic tachycardia upon returning to earth due to the deconditioning effects of weightlessness, which are quite similar to prolonged bed rest. When muscle mass is lost it is difficult to regain, therefore it is very important to avoid becoming deconditioned through inactivity.
Activities that can aggravate POTS symptoms include working with your arms over your head, lifting heavy objects, and climbing stairs. Warm temperatures have an especially negative effect on the exercise tolerance of POTS patients, as heat dilates blood vessels and diverts blood to the skin, thus reducing blood flow in key arteries that feed the brain. Air conditioning during hot weather is essential for most POTS patients. A few patients claim benefit from wearing medical support hose, which can be obtained from medical supply stores on the advice of a qualified physician. These support garments look like long underwear and can reduce vasodilation in the legs by applying mild pressure. Many patients, however, find them ineffective and/or uncomfortable to wear.
Meditation may help some patients reduce stress, feel more rested and alert, and often has a mild analgesic effect, reducing the perception of bodily aches and pains. Meditation will not cure POTS or increase your comfortable standing time. Meditation is a possible alternative to the use of sleep aids and sedatives, which often increase vasodilation and reduce orthostatic tolerance. This Recliner Chair Meditation Technique may help patients who have the time and temperament for long periods of quiet sitting.
It is impossible to replace the body’s dynamic, constantly changing system for controlling blood pressure with something as static as a simple dose of chemicals. Drug therapy for POTS and neurally mediated hypotension often works much better in theory than in practice. Patients who have neurally mediated hypotension or POTS due to Chronic Fatigue Syndrome are rarely helped by drug therapy, and often have bad drug reactions, ranging from mild to very serious. Patients with a history of bad drug reactions should be extremely cautious when considering drug therapy for POTS.
Note - Below are brief descriptions of some commonly used drugs for the treatment of POTS. This partial list is not a recommendation for any treatment, just the factual reporting of some of the drugs doctors most commonly prescribe. I strongly urge all POTS patients to see specialists in the field and not ask ordinary doctors for treatment with these drugs.
Beta blockers are used by many doctors to treat POTS and neurally mediated hypotension (NMH). I have heard of more bad drug reactions to beta blockers than any other drugs used for the treatment of POTS and NMH, especially for those patients who have NMH secondary to Chronic Fatigue Syndrome. In these patients beta blockers can actually cause POTS. Some patients have found beta blockers to be helpful, however, especially those patients who develop POTS because of an overly sensitive beta adrenergic system. For these sensitive patients only very low doses of beta blockers are usually required.
Florinef is a common drug for the treatment of POTS and NMH. It is used to stimulate the body’s retention of salt and water and it also has a very small alpha agonist effect (vasoconstricting effect). The list of Florinef’s known potential side effects is hair raising, but at the small doses prescribed Florinef is not unusually dangerous. Some patients have had bad reactions to Florinef, but that is true of all drugs. Florinef makes you expel potassium so you must take potassium supplements to keep in balance.
Midodrine is a useful drug for many patients and is probably the most effective alpha agonist currently available. Alpha agonists work by constricting blood vessels, thus reducing blood pooling in the lower part of the body. Sold in the United States as ProAmitine, Midodrine has the advantages of being long lasting and is most like the body’s own natural vasoconstricting hormones in effect. Midodrine is a large molecule that does not pass through the blood brain barrier, which is helpful for patients who are drug sensitive. Because you do not want your blood vessels constricted when you are supine, it is essential that alpha agonists should not be used before bedtime. Supine hypertension is not only uncomfortable, it is dangerous. Alpha agonists are usually only prescribed for those patients who are not seriously overweight, who have consistently low blood pressure, and whose main problem is vasodilation. Florinef is usually tried first and Midodrine introduced for those who do not respond sufficiently to expansion of blood volume.
Some patients have an abnormal supersensitivity to alpha agonists which can present serious problems during treatment. Supersensitivity to alpha agonists can be caused by impaired amine uptake in the nerve endings of alpha receptors (denervation supersensitivity). Abnormal sensitivity can also be produced by a prolonged lack of norepinephrine release from sympathetic nerve endings, which leads to enhanced receptor responsivity (decentralization supersensitivity). These conditions usually produce a two to five times increase in sensitivity level, but there is a small subset of patients who are hundreds of times more sensitive than normal. For these patients vasoconstricting alpha agonist drugs are dangerous to use because of their sheer potency. If your physician prescribes any alpha agonist drug, consult with him about taking a very small test dose first in order to gauge your sensitivity level.
Celexa (citalopram hydrobromide) is a selective serotonin reuptake inhibitor similar to Paxil, Zoloft, and Prozac, but with the claim of fewer side effects and less potential for negative drug interactions. Serotonin reuptake inhibitors have been used for many years to treat neurally mediated hypotension and syncope (passing out). The mechanism through which central serotonin levels effect blood pressure and heart rate has not been fully mapped out. The net effect of Celexa appears to be to increase nerve communication and stimulation of the standing vasoconstriction reflex. This limits venous blood pooling and increases orthostatic tolerance. Celexa and the other serotonin reuptake inhibitors are known to increase norepinephrine release to varying degrees.
Celexa has been used with some success in treating patients who have been unable to tolerate the other drugs used for treating POTS and NMH. Celexa is reported to have the potential for reducing the effects of central sleep apnea, which sometimes accompanies the onset of POTS. Treatment is started at a very low dose level of 5 mg a day or less, and gradually increased over time. Taking a full dose immediately is reported to make some patients even more ill while a gradual increase in dosage is often well tolerated.
Please note - I have never taken Celexa and do not personally recommend any specific drug or other medical treatment. This page simply passes on general information which is received from dozens of doctors and hundreds of patients. For recommendations of treatment you must see a specialist. I myself do not take any drugs for my chronic orthostatic intolerance, just salt and short walks as exercise.
Beware the teddy bear effect
Much has been made of the "placebo effect" in medicine, where a patient derives benefit from a pill, not through any chemical action of the medication, but through the purely mental belief that the pill is doing the patient some good. It is my experience that this placebo effect has little affect on POTS patients, but many patients do fall victim to what I call the teddy bear effect. The drugs used to treat POTS are not like antibiotics or anti-cancer agents. They do not "cure" anything. At best they can help your body cope with symptoms of a dysfunctional circulatory system, thus making you feel and function better. If the drugs do not make you feel and function better, then consult with your doctor about stop taking the pills.
All drugs have side effects, some of which are obvious, while others may build up slowly over time. If you have chronic high blood pressure and your doctor tells you to stick with a drug, he is trying to save your life. With POTS the situation is usually quite different. If the drug works, you usually feel the benefit fairly quickly, have more energy, have longer comfortable standing time, and generally feel better.
You would be surprised how many letters I receive from patients who keep taking drugs that they claim only makes them feel worse. They continue to take the pills because they want to do something, anything, to fight this devastating illness. For them, taking a medication may be comforting like a teddy bear, even if that pill has no discernible benefit, not even a positive placebo effect. Generally speaking, patients should take a minimum number of drugs and only those drugs which have proven benefit. I hear of some patients taking four or more drugs a day, but ask yourself this. If any one of them really worked, or any reasonable combination of two drugs taken for synergistic effect really worked, then why would they need to take all the rest? Over-medication is a serious potential problem, not just for POTS, but for any serious illness that has no swift or easy cure.
It has also come to my attention that some doctors continue to advise POTS and NMH patients that sleeping with the heads of their beds slightly elevated at night will improve their orthostatic tolerance. This method was originally developed to help patients with classic orthostatic hypotension diseases, such as Shy-Drager syndrome (multiple system atrophy) and Bradbury-Eggleston syndrome (idiopathic orthostatic hypotension). Those diseases usually cause supine hypertension (high blood pressure while lying down). It was simply assumed, without clinical studies, that elevating the head of the bed would help those with other orthostatic intolerance conditions as well.
There is now documented evidence to suggest that some percentage of POTS and NMH patients experience supine hypotension (low blood pressure while lying down), which often manifests itself after the patient falls asleep. If your blood pressure drops to below normal levels while sleeping, the last thing you want to do is to sleep with the head of your bed raised, thus draining even more blood and vital oxygen from your brain while you are unconscious. It is therefore advisable that patients only elevate the head of their bed at night if they have proven supine hypertension.
Finding Help It is vital that you obtain proper professional medical help and do not try to diagnose or treat yourself. The National Dysautonomia Research Foundation (a wonderful organization which I am not affiliated with) has a list of doctors who are educated in the diagnosis and treatment of POTS at: http://www.ndrf.org/physicia.htm. Anyone interested in POTS can also read the following medical papers and books. Some of the medical papers are from common medical journals, which can be obtained from local public, hospital, or college libraries. Please do not ask me for copies.
"The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management" - Satish R Raj MD MSCI, Indian Pacing Electrophysiol. J. 2006;6(2):84-99
"Orthostatic Intolerance and Orthostatic Tachycardia," guest editor of special symposium issue on orthostatic intolerance David Robertson, M.D., The American Journal of Medical Sciences February 1999;317:#2: 75-124
"The Fainting Phenomenon: Understanding Why People Faint and What Can Be Done About It," by Blair P. Grubb, MD, and Mary McMann, MPH. This book is available on-line through the NDRF Reference Page or through amazon.com.
Editorial
If you read the above mentioned articles, you will know more about POTS and low blood pressure than your average cardiologist or neurologist. Most doctors know about high blood pressure, not low blood pressure, and the first thing uninformed doctors will usually do is blame the patient for the symptoms. I strongly suggest you consult an expert in the field instead of trying to educate your local doctor. The drugs used to treat POTS can be dangerous and an experienced physician is needed to determine which drug or treatment is best for the patient.
POTS is recognized as a physical, usually neurological based disorder by every major medical university in America. Chronic Fatigue Syndrome is currently more difficult to diagnose and thus skepticism in the medical community remains. Research by Dr. Jonathan Kerr, Dr. Arnold Peckerman, and the Center for Disease Control has found credible evidence of serious measurable physical abnormalities in patients with Chronic Fatigue Syndrome. These abnormalities include abnormalities in heart function and blood circulation, and abnormalities in gene expression in white blood cells and in brain cells that regulate metabolic and immune system response to stress, infection, and chemical exposure. Doctors ridiculed people with MS, diabetes, and even polio for decades before a critical mass of evidence proved they were real diseases. The same psychological torture (See Mind Experiment for Doctors.) is now being inflicted on patients with Chronic Fatigue Syndrome. It is essential that medical schools teach students humanity and humility instead of just teaching them how to prescribe drugs and mend bones."
For more information please visit his page http://home.att.net/~potsweb/POTS.html
I think I know what is finally wrong with me and I think the xanax withdrawal made if worse for awhile which could be a blessing as much as it was hell to go through...I have 100's of health issues that doctors blow off as "just stress", "just anxiety", "I have never heard that before [weird look]", "you're silly" and I have had them all for over a decade...and I finally found something that explains them all because every last thing that I feel and experience is found in this disorder "Postural Orthostatic Tachycardia Syndrome".
There is so much to read about it, but here is a good bit of information to help you understand what it is. I don't know if this is what I have and unfortunately there is no doctor in Albany, NY. who specializes in this. The closest to me is in New York City, which is about 158 miles away.
I will copy and paste the information below with a link to the page it came from.
"Tachycardia means an extremely rapid heart rate, usually described as a pulse rate of over 100 beats per minute (bpm). Postural Orthostatic Tachycardia Syndrome (POTS) is usually clinically defined as a heart rate increase of 30 bpm or more from the supine (laying down) to the standing position within 10 minutes or less. Patients with florid POTS develop tachycardia over 120 bpm within 5 minutes or less. Some doctors use a strict 5 minute standard for defining POTS, while others use a 20 minute standard. Some patients have heart rates that go all the way up to 150 bpm and beyond. During tilt table testing, some POTS patients have large drops in blood pressure and pass out (syncope), while other patients have only relatively shallow drops in blood pressure. A small percentage of POTS patients have no drop in blood pressure at all. Studies show that about 75% of POTS patients are women and that a genetic tendency to develop POTS is often transferred from mother to daughter.
For a correct diagnosis of POTS there must be an absence of any other known cause of tachycardia, such as a specific heart condition. POTS is usually accompanied by frequent spells of neurally mediated hypotension (NMH), but this is not always the case. NMH means low blood pressure while standing, caused by a defect in the function of the autonomic nervous system. A minority of patients exhibit no measurable lowering of blood pressure during tilt table testing. Some patients may experience an increase in standing blood pressure due to an abnormal overcompensation of the autonomic nervous system to the orthostatic stress of the upright position.
The brain is the most metabolically active organ in the body and requires a steady supply of oxygen and glucose to maintain healthy function. Although the brain represents only 1-2% of the body's mass, it utilizes 20% of the body's oxygen consumption and 15% of cardiac output. Our brains are thus highly dependent on adequate blood circulation to maintain our sense of health and well being. The thought process, regulation of body temperature, hormone release, and many autonomic systems can be impaired by loss of proper blood pressure control. Our survival is as dependent on adequate blood pressure regulation as on the fundamental process of breathing.
A UCLA medical study found that women tolerate stress better than men, thus the claim by some uninformed doctors that POTS is caused by "stress" rather than an underlying physical disease process is not based on the scientific evidence. If stress caused POTS, then men would develop POTS more often than women, the exact opposite of what accepted statistics indicates is the case. Men have a stronger adrenaline fight or flight reaction to stress than women and are less prone to work out problems with friends and family. Researchers found that women have higher levels of a hormone called oxytocin. "Animals and people with high levels of oxytocin are calmer, more relaxed, more social and less anxious. In several animal species, oxytocin leads to maternal behavior and to affiliation."
Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system's regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.
Causes What causes POTS? The answer to that question can be answered with a pie chart showing multiple causes, not by any one line statement. Postural intolerance has been likened to a fever in that it is a symptom which can have many diverse root causes, both central and peripheral. It is extraordinarily easy to induce orthostatic intolerance in human beings, and that is why most mammals have four legs, not just two. Even our close genetic relatives, monkeys, chimpanzees, and apes, do not usually stand erect as humans do. Just becoming dehydrated or overly heated can cause temporary orthostatic intolerance, so it should be no surprise that there are many proven and suspected causes. Although gaps in our medical knowledge remain, most of the main root causes for the development of POTS have been identified and are listed below as general categories.
Please remember that very little is ever 100% proven in the field of science. Eternal doubt is an intrinsic part of the scientific method. This page passes on the latest theories and accepted "facts," but does not guarantee that better facts and theories will not make some items on this list obsolete in the future.
1) Viral and bacterial infections that damage the autonomic nervous system are a common cause. Patients who develop POTS due to an infection, with no deeper underlying genetic cause, have the best chance for a spontaneous recovery over time.
2) The development of POTS in women after childbearing is very common and may be due to changes in blood volume during pregnancy.
3) Exposure to toxic chemicals which damage the autonomic nervous system can cause POTS. This group includes adverse reactions to prescription drugs. Some Gulf War veterans have developed POTS like symptoms after being exposed to small amounts of nerve gas, insecticides, and inadequately tested experimental drugs.
4) POTS can be caused by genetically inherited neurotransmitter disorders, including disorders of catecholamine production and release, such as Norepinephrine-Transporter Deficiency.
5) POTS can be caused by peripheral nerve damage due to rapid weight loss, diabetes, and alcoholism. Doctors at the Mayo Clinic have identified autoantibodies specific for nicotinic acetylcholine receptors in the autonomic ganglia, which are believed to cause of approximately 10% of all POTS cases. Doctors at Vanderbilt University believe that some POTS cases are caused by a partial sympathetic denervation, especially in the legs.
6) POTS can be a phase in the gradual onset of Shy-Drager Syndrome.
7) Damage to the vagus nerve can be a cause and there have been documented cases of patients developing neurally mediated hypotension and POTS after undergoing radiation treatment to the neck.
8) There is a mixed bag of less common potential causes, both genetic and acquired. Ehlers-Danlos syndrome, a connective tissue disorder which permits veins to dilate excessively, is now an accepted cause of POTS. Essentially anything that can damage the brain stem and important autonomic nervous system structures can cause POTS.
Symptoms
POTS is diagnosed on the basis of heart rate increase and heart waveform signature revealed by electrocardiogram, not on the basis of a drop in blood pressure, as is the case with orthostatic hypotension and neurally mediated hypotension (NMH). Neurally mediated hypotension is commonly associated with POTS, but having NMH is not a prerequisite for a diagnosis of POTS. The secondary symptoms of POTS vary significantly from case to case. The most commonly reported symptoms are listed below.
The length of time POTS patients can comfortably stand varies widely from case to case. Patients may become dizzy, lightheaded, and develop chest and heart pain from standing beyond their limit. Blood pooling in the legs and splanchnic bed (abdomen) may occur, which is felt in the same way you feel water fills your mouth when you get a drink. Shortness of breath, blurry vision, tingling in the legs, sweating, and feelings of heat from increased adrenaline production are common symptoms of orthostatic stress. Some patients pass out frequently, which is dangerous as well as uncomfortable. Many patients experience spells of supine or standing vertigo, but this symptom is dependent on the root cause of the POTS. Remember that POTS itself in not a specific disease like polio, but rather a symptom and a syndrome (a collection of symptoms).
The current prevailing theory is that the heart pain associated with POTS is predominately non-ischemic, but further research may alter this perception. It is believed the left sided heart pain so common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. It is not related to common angina which is usually caused by blocked arteries cutting off the supply of blood to the heart. While uncomfortable and debilitating, this left sided heart pain is not believed to be immediately life threatening.
With POTS and NMH you become lightheaded and weak even before you get a measured crash in blood pressure because the small blood vessels in the brain paradoxically constrict when you are under orthostatic stress. This cerebral vasoconstriction cuts off the blood supply to brain cells while veins in the legs and splanchnic bed are dilated and pooling blood away from your heart. With inadequate filling of the heart's left ventricle and abnormal function of the alpha and beta adrenergic systems, it is no wonder that strange and irregular heart beats (palpitations) are a universal symptom of POTS. These are often referred to as ectopic heartbeats, with frequent premature heartbeats the most common aberration reported.
POTS often generates a temporary rise in blood pressure immediately upon standing due to the rapid acceleration of heart rate. Tachycardia is the body’s defense mechanism against a lack of sufficient venous blood returned to the heart. Blood vessels, particularly veins, can become unnaturally dilated, causing blood pooling in the legs and splanchnic bed. Thus the heart must beat more times in a minute to make up for the reduced blood volume transferred by each beat. If a POTS patient stands up too suddenly, there may be so little blood in the heart that it may collapse upon itself, causing very painful heartbeats. Patients often have measurably low standing pulse pressure, which can be an indicator of venous pooling.
Frequent urination is a common symptom of POTS, NMH, and severe cases of CFS. This problem is sometimes misdiagnosed as diabetes insipidus, which is a disease caused by reduced production of a pituitary hormone called vasopressin. Some POTS patients develop a diabetes insipidus like syndrome which is believed to be caused by somewhat reduced vasopressin output, low blood volume, and disruption of the alpha adrenergic system, which helps the kidneys retain water and sodium.
Reactive hypoglycemia is a common problem for both POTS and CFS patients, and occurs through a complex series of neural and hormonal interactions which are not yet fully understood. The traditional definition of hypoglycemia is an abnormal lowering of blood sugar levels after the body overreacts to carbohydrates with excessive insulin production. Researchers now understand that this lowering of blood sugar levels is not the only cause of symptoms. Recent studies show that when patients with reactive hypoglycemia eat carbohydrates, which cause a sudden increase in blood glucose levels, their bodies abnormally produce excessive amounts of adrenaline and other stress hormones. These stress hormones themselves cause many negative symptoms of their own in addition to the eventual crash in blood glucose levels due to excessive reactive insulin production.
Most patients with POTS have difficulty sleeping, which may result from a number of factors, including abnormally high adrenaline levels caused by increased orthostatic stress (the stress of standing). Central sleep apnea is a problem for some people with POTS, which in some cases may be due to damage to the medulla, which controls important cardiac and respiratory functions. Central sleep apnea causes breathing to temporarily stop while sleeping.
Low grade fevers, mild chills, and general flu like symptoms are common with POTS. This may be explained by a neurologically based loss of control of basic autonomic regulatory systems, an overactive immune system, or abnormally high adrenaline levels effecting body heat production. Many patients have positive anti-nuclear antibody tests (ANA test), which some doctors say is due to high adrenaline levels activating the immune system. Other doctors suggest positive ANA tests may be due to an autoimmune disorder damaging nerve cells. Patients are left in confusion as to which theory to believe.
Chronic fatigue and weakness are common problems for POTS sufferers. Those who have pure POTS, without CFS or significant immune system involvement, generally feel better and have greater postural tolerance despite tachycardia. Many POTS patients have common allergies, uncommon food allergies, and are highly drug and chemical sensitive. Many POTS and CFS patients experience severe night sweats.
Nausea, bloating, and sore intestines are a frequent complaint. The nausea can usually be eliminated by not stressing yourself beyond your capabilities. Bloating is caused by low motility in the intestines. Patients often develop irritable bowel syndrome, which leaves the intestines feeling raw and tender. Difficulty swallowing (dysphagia - pronounced dis-FAY-jee-uh) is also a frequently reported problem.
Numbness in palms and soles is a common symptom of POTS. Legs, arms, and hands are often totally numb upon awakening from sleep. Upper extremity somatosensory evoked potential studies are usually normal in POTS and CFS patients, but this is not always the case. Unusual coldness of the hands is also common and is referred to as acral coldness. Patients frequently experience sporadic itchiness, burning and tingling sensations all over the body, especially at night. Some patients may also have dramatically reduced sweating, which can be tested for through a thermoregulatory sweat test.
Most POTS patients have poor balance, which may be caused by decreased blood flow to the brain and other disturbances in the vestibular system. The patient's root neurological damage may also cause balance problems directly as well as causing the debilitating symptom of orthostatic intolerance. Patients are often unable to pass a drunk test by walking with one foot placed directly in front of the other. An abnormal gait is common. Patients may walk with legs wide apart and feet flared out to the sides as an instinctive adaptive response to increase their stability.
Eye pain is another common problem, as is a feeling of pressure behind the eyes. Patients can become so weak that their eye muscles are easily strained and focusing is difficult. Many POTS and CFS patients see tiny little black dots floating in front of their eyes. This is a problem of the fluid in the eyes which occurs naturally with age, but which can be made dramatically worse by the onset of CFS or POTS.
Supine blood pressure readings are usually normal or below normal in POTS patients. This is in sharp contrast to multiple system atrophy (Shy-Drager syndrome), idiopathic orthostatic hypotension (Bradbury-Eggleston syndrome), and other forms of central autonomic failure typified by low standing blood pressure and high supine blood pressure. Lack of supine hypertension (high blood pressure when lying down) is usually a sign you do not suffer from the classic forms of central autonomic failure.
Most POTS patients will only have a few of the symptoms listed here, while others will have unique symptoms all their own. A poor memory is a major symptom of POTS, and many patients will have a difficult time just remembering their own symptoms while conversing with doctors. The total damage to the autonomic nervous system POTS sufferers experience, called dysautonomia, causes what Dr. David Robertson of Vanderbilt University refers to as “mild autonomic abnormalities.” These symptoms, such as frequent urination and reactive hypoglycemia, are not life threatening, but they are quality of life destroying.
People who do not have problems with low blood pressure have a difficult time understanding the concept of orthostatic stress. They fail to realize that blood pressure is as basic and essential a bodily function as breathing. How would you feel if your breathing were constricted for even one minute? Low blood pressure can cause an enormous amount of symptoms and suffering, but those who don’t have it often miss that fundamental point. Some patients with POTS have such a damaged regulatory system that they may get paradoxical wild swings in blood pressure from below 50 to over 200. Complexly, POTS can be a low and high blood pressure problem combined.
Treatment Treating patients with POTS and neurally mediated hypotension is often very difficult. When you stand up your body should automatically constrict blood vessels to help maintain blood pressure in the face of increased orthostatic stress. In the standing position, gravity wants to pull your blood down to your feet. When you lie down, your body should automatically dilate blood vessels as gravity is no longer a force to fight against. With POTS this automatic regulatory system breaks down and blood begins to pool in places where it should be flowing rapidly. The heart is then stressed with the added work of trying to pull all that blood uphill without help from the much needed alpha adrenergic constriction process.
Non-drug treatments have low risk and high rewards
Adding lots of extra salt to the diet can increase both blood volume and blood pressure by increasing fluid retention. One must increase fluid intake for salt to effectively expand blood volume. The use of a large, stainless steel chef's style salt shaker can be helpful. A high salt diet should only be tried under the recommendation and supervision of your doctor.
Pouring lots on ordinary table salt on food works better for most people than the use of salt tablets. Salt tablets can irritate the stomach, cause vomiting, and tends to centralize body fluids in the digestive tract, which is not good for either blood volume or blood pressure. For most people salt goes into the human body more smoothly and easily when mixed with food.
Patients with POTS and/or neurally mediated hypotension should avoid garlic and nitrates in food, which lower blood pressure. Most patients also need to give up alcohol, coffee, tea, and adrenaline stimulating herbs like ginseng. Try to avoid eating heavy meals as overloading the stomach decreases orthostatic tolerance by drawing blood to the digestive tract and away from main arteries which feed the brain.
Make sure you exercise every day when you are able. Try to keep your muscles alive, as they produce the natural vasoconstricting hormone norepinephrine. Good muscle tone, especially in the legs, helps limit abnormal blood vessel dilation and blood pooling. Severely affected patients may find any amount of exercise difficult, but one can slowly increase activity over time as you improve. Even just ten, two minute walks a day adds up to twenty minutes of walking, which can help maintain vital muscle mass and thus increase your orthostatic tolerance.
During the day it is better to rest in a recliner chair rather than lying in bed, as constant bed rest decreases orthostatic tolerance dramatically. Astronauts often develop a temporary form of orthostatic tachycardia upon returning to earth due to the deconditioning effects of weightlessness, which are quite similar to prolonged bed rest. When muscle mass is lost it is difficult to regain, therefore it is very important to avoid becoming deconditioned through inactivity.
Activities that can aggravate POTS symptoms include working with your arms over your head, lifting heavy objects, and climbing stairs. Warm temperatures have an especially negative effect on the exercise tolerance of POTS patients, as heat dilates blood vessels and diverts blood to the skin, thus reducing blood flow in key arteries that feed the brain. Air conditioning during hot weather is essential for most POTS patients. A few patients claim benefit from wearing medical support hose, which can be obtained from medical supply stores on the advice of a qualified physician. These support garments look like long underwear and can reduce vasodilation in the legs by applying mild pressure. Many patients, however, find them ineffective and/or uncomfortable to wear.
Meditation may help some patients reduce stress, feel more rested and alert, and often has a mild analgesic effect, reducing the perception of bodily aches and pains. Meditation will not cure POTS or increase your comfortable standing time. Meditation is a possible alternative to the use of sleep aids and sedatives, which often increase vasodilation and reduce orthostatic tolerance. This Recliner Chair Meditation Technique may help patients who have the time and temperament for long periods of quiet sitting.
It is impossible to replace the body’s dynamic, constantly changing system for controlling blood pressure with something as static as a simple dose of chemicals. Drug therapy for POTS and neurally mediated hypotension often works much better in theory than in practice. Patients who have neurally mediated hypotension or POTS due to Chronic Fatigue Syndrome are rarely helped by drug therapy, and often have bad drug reactions, ranging from mild to very serious. Patients with a history of bad drug reactions should be extremely cautious when considering drug therapy for POTS.
Note - Below are brief descriptions of some commonly used drugs for the treatment of POTS. This partial list is not a recommendation for any treatment, just the factual reporting of some of the drugs doctors most commonly prescribe. I strongly urge all POTS patients to see specialists in the field and not ask ordinary doctors for treatment with these drugs.
Beta blockers are used by many doctors to treat POTS and neurally mediated hypotension (NMH). I have heard of more bad drug reactions to beta blockers than any other drugs used for the treatment of POTS and NMH, especially for those patients who have NMH secondary to Chronic Fatigue Syndrome. In these patients beta blockers can actually cause POTS. Some patients have found beta blockers to be helpful, however, especially those patients who develop POTS because of an overly sensitive beta adrenergic system. For these sensitive patients only very low doses of beta blockers are usually required.
Florinef is a common drug for the treatment of POTS and NMH. It is used to stimulate the body’s retention of salt and water and it also has a very small alpha agonist effect (vasoconstricting effect). The list of Florinef’s known potential side effects is hair raising, but at the small doses prescribed Florinef is not unusually dangerous. Some patients have had bad reactions to Florinef, but that is true of all drugs. Florinef makes you expel potassium so you must take potassium supplements to keep in balance.
Midodrine is a useful drug for many patients and is probably the most effective alpha agonist currently available. Alpha agonists work by constricting blood vessels, thus reducing blood pooling in the lower part of the body. Sold in the United States as ProAmitine, Midodrine has the advantages of being long lasting and is most like the body’s own natural vasoconstricting hormones in effect. Midodrine is a large molecule that does not pass through the blood brain barrier, which is helpful for patients who are drug sensitive. Because you do not want your blood vessels constricted when you are supine, it is essential that alpha agonists should not be used before bedtime. Supine hypertension is not only uncomfortable, it is dangerous. Alpha agonists are usually only prescribed for those patients who are not seriously overweight, who have consistently low blood pressure, and whose main problem is vasodilation. Florinef is usually tried first and Midodrine introduced for those who do not respond sufficiently to expansion of blood volume.
Some patients have an abnormal supersensitivity to alpha agonists which can present serious problems during treatment. Supersensitivity to alpha agonists can be caused by impaired amine uptake in the nerve endings of alpha receptors (denervation supersensitivity). Abnormal sensitivity can also be produced by a prolonged lack of norepinephrine release from sympathetic nerve endings, which leads to enhanced receptor responsivity (decentralization supersensitivity). These conditions usually produce a two to five times increase in sensitivity level, but there is a small subset of patients who are hundreds of times more sensitive than normal. For these patients vasoconstricting alpha agonist drugs are dangerous to use because of their sheer potency. If your physician prescribes any alpha agonist drug, consult with him about taking a very small test dose first in order to gauge your sensitivity level.
Celexa (citalopram hydrobromide) is a selective serotonin reuptake inhibitor similar to Paxil, Zoloft, and Prozac, but with the claim of fewer side effects and less potential for negative drug interactions. Serotonin reuptake inhibitors have been used for many years to treat neurally mediated hypotension and syncope (passing out). The mechanism through which central serotonin levels effect blood pressure and heart rate has not been fully mapped out. The net effect of Celexa appears to be to increase nerve communication and stimulation of the standing vasoconstriction reflex. This limits venous blood pooling and increases orthostatic tolerance. Celexa and the other serotonin reuptake inhibitors are known to increase norepinephrine release to varying degrees.
Celexa has been used with some success in treating patients who have been unable to tolerate the other drugs used for treating POTS and NMH. Celexa is reported to have the potential for reducing the effects of central sleep apnea, which sometimes accompanies the onset of POTS. Treatment is started at a very low dose level of 5 mg a day or less, and gradually increased over time. Taking a full dose immediately is reported to make some patients even more ill while a gradual increase in dosage is often well tolerated.
Please note - I have never taken Celexa and do not personally recommend any specific drug or other medical treatment. This page simply passes on general information which is received from dozens of doctors and hundreds of patients. For recommendations of treatment you must see a specialist. I myself do not take any drugs for my chronic orthostatic intolerance, just salt and short walks as exercise.
Beware the teddy bear effect
Much has been made of the "placebo effect" in medicine, where a patient derives benefit from a pill, not through any chemical action of the medication, but through the purely mental belief that the pill is doing the patient some good. It is my experience that this placebo effect has little affect on POTS patients, but many patients do fall victim to what I call the teddy bear effect. The drugs used to treat POTS are not like antibiotics or anti-cancer agents. They do not "cure" anything. At best they can help your body cope with symptoms of a dysfunctional circulatory system, thus making you feel and function better. If the drugs do not make you feel and function better, then consult with your doctor about stop taking the pills.
All drugs have side effects, some of which are obvious, while others may build up slowly over time. If you have chronic high blood pressure and your doctor tells you to stick with a drug, he is trying to save your life. With POTS the situation is usually quite different. If the drug works, you usually feel the benefit fairly quickly, have more energy, have longer comfortable standing time, and generally feel better.
You would be surprised how many letters I receive from patients who keep taking drugs that they claim only makes them feel worse. They continue to take the pills because they want to do something, anything, to fight this devastating illness. For them, taking a medication may be comforting like a teddy bear, even if that pill has no discernible benefit, not even a positive placebo effect. Generally speaking, patients should take a minimum number of drugs and only those drugs which have proven benefit. I hear of some patients taking four or more drugs a day, but ask yourself this. If any one of them really worked, or any reasonable combination of two drugs taken for synergistic effect really worked, then why would they need to take all the rest? Over-medication is a serious potential problem, not just for POTS, but for any serious illness that has no swift or easy cure.
It has also come to my attention that some doctors continue to advise POTS and NMH patients that sleeping with the heads of their beds slightly elevated at night will improve their orthostatic tolerance. This method was originally developed to help patients with classic orthostatic hypotension diseases, such as Shy-Drager syndrome (multiple system atrophy) and Bradbury-Eggleston syndrome (idiopathic orthostatic hypotension). Those diseases usually cause supine hypertension (high blood pressure while lying down). It was simply assumed, without clinical studies, that elevating the head of the bed would help those with other orthostatic intolerance conditions as well.
There is now documented evidence to suggest that some percentage of POTS and NMH patients experience supine hypotension (low blood pressure while lying down), which often manifests itself after the patient falls asleep. If your blood pressure drops to below normal levels while sleeping, the last thing you want to do is to sleep with the head of your bed raised, thus draining even more blood and vital oxygen from your brain while you are unconscious. It is therefore advisable that patients only elevate the head of their bed at night if they have proven supine hypertension.
Finding Help It is vital that you obtain proper professional medical help and do not try to diagnose or treat yourself. The National Dysautonomia Research Foundation (a wonderful organization which I am not affiliated with) has a list of doctors who are educated in the diagnosis and treatment of POTS at: http://www.ndrf.org/physicia.htm. Anyone interested in POTS can also read the following medical papers and books. Some of the medical papers are from common medical journals, which can be obtained from local public, hospital, or college libraries. Please do not ask me for copies.
"The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management" - Satish R Raj MD MSCI, Indian Pacing Electrophysiol. J. 2006;6(2):84-99
"Orthostatic Intolerance and Orthostatic Tachycardia," guest editor of special symposium issue on orthostatic intolerance David Robertson, M.D., The American Journal of Medical Sciences February 1999;317:#2: 75-124
"The Fainting Phenomenon: Understanding Why People Faint and What Can Be Done About It," by Blair P. Grubb, MD, and Mary McMann, MPH. This book is available on-line through the NDRF Reference Page or through amazon.com.
Editorial
If you read the above mentioned articles, you will know more about POTS and low blood pressure than your average cardiologist or neurologist. Most doctors know about high blood pressure, not low blood pressure, and the first thing uninformed doctors will usually do is blame the patient for the symptoms. I strongly suggest you consult an expert in the field instead of trying to educate your local doctor. The drugs used to treat POTS can be dangerous and an experienced physician is needed to determine which drug or treatment is best for the patient.
POTS is recognized as a physical, usually neurological based disorder by every major medical university in America. Chronic Fatigue Syndrome is currently more difficult to diagnose and thus skepticism in the medical community remains. Research by Dr. Jonathan Kerr, Dr. Arnold Peckerman, and the Center for Disease Control has found credible evidence of serious measurable physical abnormalities in patients with Chronic Fatigue Syndrome. These abnormalities include abnormalities in heart function and blood circulation, and abnormalities in gene expression in white blood cells and in brain cells that regulate metabolic and immune system response to stress, infection, and chemical exposure. Doctors ridiculed people with MS, diabetes, and even polio for decades before a critical mass of evidence proved they were real diseases. The same psychological torture (See Mind Experiment for Doctors.) is now being inflicted on patients with Chronic Fatigue Syndrome. It is essential that medical schools teach students humanity and humility instead of just teaching them how to prescribe drugs and mend bones."
For more information please visit his page http://home.att.net/~potsweb/POTS.html
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