So I went and had the echo of my heart. The tech asked why I was having it done and I told her about my fast heart rate. Soon after she started the echo she kept going back to one spot and said "Sometimes the heart can beat fast when there is heart valve damage."
Now does that mean I have heart valve damage? Who knows, I wish she didn't say it though because that is what I am thinking about now. After I asked if I could just call for the results and she was frigidity and said "Well I think the cardiologist will want to see you, so be sure to call him today and make an appointment. Again this makes me think something is wrong. I didn't call today because by the time I got home it was 3:30pm and figured they would be closing at 4pm. So I will call in the morning and make an appointment that I can actually get too since I have to have my father take me and my mom only has certain days off and has her pre-op and surgery coming up. Hopefully I can get in and hopefully nothing is wrong with my heart.
Then after the echo I had them place the 24 hour monitor on me which I am wearing right now. I had one of these when I was 16 years old and I have to say the monitor use to be the size of a giant Walkman, now it is the size of a pager from 1995. It is so much lighter. I checked to see what my heart rate was a little while ago and it was 104, which isn't that bad compared to what it usually is.
When I first got there I was having such bad anxiety I had to go pee three times, threw cold water on my face once and kept pacing around like some mental patient. I started to cry once, but managed to hold it in.
After, my mom came over for an hour and a half and we talked and watched some TV. She told me that she is scared they will want her organs so she is not donating them for the surgery, but if something really happens my father has a form from her to let them take them. I told her that this is a lifetime movie in the making. My heart is failing and I will end up with her heart. She said "Oh God...now I don't want to have surgery." and laughed some.
Tomorrow at 3pm this monitor will be over and my father will come and pick it up and bring it back to the hospital for me.
I am going to try to find something solid to eat. I have no idea what I want, but I do feel like I can eat right now so I better do it while I can. I think I will have soup.
Showing posts with label paxil. Show all posts
Showing posts with label paxil. Show all posts
Thursday, April 9, 2009
Wednesday, April 8, 2009
How I Feel
Since late January I have been so ill. (read post below to catch up). I have been reduced to living on mainly liquid foods. I have thrown up more times than I can count. I am very thankful when I am able to have a can of soup, banana, or if I am lucky a microwave breakfast. (I have been unable to eat healthy at all)
The heart issue did not start till a single dose of paxil. Fainting scared the hell out of me and that is a major phobia of mine. Outside of all my illness my anxiety has me on compele lockdown right now because I fainted. Even if I felt well I don't think I would drive my car (which I have not driven since Feb 22nd anyway). I am scared I am going to just faint again while driving or in the supermarket. I don't even feel safe being alone now.
I wish I could completely say that it was paxil that made me faint that day, but I can't and there is where the problem lies. Right before I fainted I had a gross thought then I started to faint. Now I always get gross thoughts and now if my own mind can make me faint I am in trouble. I mean after all I could have a gross thought while driving and pass out.
I am sure to many people fainting is not a big deal, but for me it is giant. I don't like anything about it, it is the closest thing to dying for me. Your whole body winds down and you feel so ill. You can't see and you turn pure white as your pupils dialate out.
I have now fainted 3 times in my life. March 4th my most recent faint, Nov 2007 when I drank way too much alcohol and fainted and hit my head in the bathroom (which gave me a phobia of drinking alcohol because it caused me to faint. I needed to stop drinking anyway) and in June 1994 after my blood was taken (that is where my blood phobia comes from).
Two of those events I can blame something, blood test and alcohol. This time what do I blame? What is the chances that my gross thought came right before I fainted? Did paxil and my gross thought together trigger me to faint? Was it just the paxil (even though I took it years before and never fainted) and it just happen to happen at the same time? This is my problem, nothing to blame but my mind? Then I am in trouble because like I said I think horrible things a lot to begin with. I am unable to stop those thoughts from coming at me for the past 15 years medicated or not. The only thing I can do is try to block them out which is what I usually do. Gross thought comes in and I picture flowers blooming in my head to try to get away from the thought.
However since the day I took paxil my heart rate has stayed very high 100-150 something. My old heart rate was 70-80. Even when I am relaxed my heart races fast so it again makes me question the paxil.
Since Jan. I feel poisoned the only way to even put it into prospective for someone is to say it feels like I have a constant IV drip of chemo going into me. It takes me 20 mins sometimes to get off the couch to get a glass of water. My body aches, my heart races and I am so weak. I have a hard time focusing at all. I was always reading books and now I just can't...I can't even focus on TV shows. I am very zoned out.
The second visit to the ER was because I got close to fainting two more times that day. I am scared of my treadmill now because I walked on it and shortly after I broke into a cold sweat. I assume that is because I had not been eating and my heart rate was already high to start with. Thoughts enter in my head though that I have heart disease and that is why it happened. I worry that my heart is clogged or damaged and that is why it is beating so fast. Plus I read online about people with anxiety disorders having more heart attacks than non anxious people and how people with mental illness in general die on average at 57 years old.
Many times when I sleep I am jolted awake covered in sweat. Not just a little sweat, but sweat running down my face and soaking through my t-shirt. I have been sleeping on the couch so at least when I wake up like that the TV is on and that feels much safer.
Many times I feel so sick I cry my eyes out for hours sitting on my couch or calling my mother on the phone. I start to get these intense anxiety attacks unlike anything I ever experienced in the 15 years I have had anxiety. It is more anxiety than I even knew a human could experience.
Just picking up my apartment a little shoots my blood pressure to 150/101 and my heart climbs to 158. I checked after cleaning a little because I felt this pressure in my head and my knees felt shaky. That is another thing when I walk know my legs go weird on me and shake at times, other times I lose feeling in my wrists or my face. All these feelings and things happening is not good for a nervous person to deal with.
I tried to stop smoking cold turkey and my blood pressure feel so low that I started to black out so I am forced to smoke and trying as hard as I can to reduce the amount each day so my body can take it. Oddly usually when someone quits smoking the heart rate will drop, but mine stays high.
I called a Gastro doctor today because I have stomach issues and H. Pylori bacteria. They are booked till June, but can get me in with the nurse May 8th. So that is when I will be going there. I started taking pepcid last night in case I do have an ulcer because sometimes I have thrown up some small brown specks when I ate nothing brown and sometimes small amounts of blood.
I guess it is good that I have the energy to start writing again. Part of it is because I am scared I will die and I feel this need to connect and tell my story.
I will write more if I can soon. Because there is so much to this story I can't write it all out at once.
Tomorrow I go in for my echo of my heart and wear the 24 hour heart monitor.
The heart issue did not start till a single dose of paxil. Fainting scared the hell out of me and that is a major phobia of mine. Outside of all my illness my anxiety has me on compele lockdown right now because I fainted. Even if I felt well I don't think I would drive my car (which I have not driven since Feb 22nd anyway). I am scared I am going to just faint again while driving or in the supermarket. I don't even feel safe being alone now.
I wish I could completely say that it was paxil that made me faint that day, but I can't and there is where the problem lies. Right before I fainted I had a gross thought then I started to faint. Now I always get gross thoughts and now if my own mind can make me faint I am in trouble. I mean after all I could have a gross thought while driving and pass out.
I am sure to many people fainting is not a big deal, but for me it is giant. I don't like anything about it, it is the closest thing to dying for me. Your whole body winds down and you feel so ill. You can't see and you turn pure white as your pupils dialate out.
I have now fainted 3 times in my life. March 4th my most recent faint, Nov 2007 when I drank way too much alcohol and fainted and hit my head in the bathroom (which gave me a phobia of drinking alcohol because it caused me to faint. I needed to stop drinking anyway) and in June 1994 after my blood was taken (that is where my blood phobia comes from).
Two of those events I can blame something, blood test and alcohol. This time what do I blame? What is the chances that my gross thought came right before I fainted? Did paxil and my gross thought together trigger me to faint? Was it just the paxil (even though I took it years before and never fainted) and it just happen to happen at the same time? This is my problem, nothing to blame but my mind? Then I am in trouble because like I said I think horrible things a lot to begin with. I am unable to stop those thoughts from coming at me for the past 15 years medicated or not. The only thing I can do is try to block them out which is what I usually do. Gross thought comes in and I picture flowers blooming in my head to try to get away from the thought.
However since the day I took paxil my heart rate has stayed very high 100-150 something. My old heart rate was 70-80. Even when I am relaxed my heart races fast so it again makes me question the paxil.
Since Jan. I feel poisoned the only way to even put it into prospective for someone is to say it feels like I have a constant IV drip of chemo going into me. It takes me 20 mins sometimes to get off the couch to get a glass of water. My body aches, my heart races and I am so weak. I have a hard time focusing at all. I was always reading books and now I just can't...I can't even focus on TV shows. I am very zoned out.
The second visit to the ER was because I got close to fainting two more times that day. I am scared of my treadmill now because I walked on it and shortly after I broke into a cold sweat. I assume that is because I had not been eating and my heart rate was already high to start with. Thoughts enter in my head though that I have heart disease and that is why it happened. I worry that my heart is clogged or damaged and that is why it is beating so fast. Plus I read online about people with anxiety disorders having more heart attacks than non anxious people and how people with mental illness in general die on average at 57 years old.
Many times when I sleep I am jolted awake covered in sweat. Not just a little sweat, but sweat running down my face and soaking through my t-shirt. I have been sleeping on the couch so at least when I wake up like that the TV is on and that feels much safer.
Many times I feel so sick I cry my eyes out for hours sitting on my couch or calling my mother on the phone. I start to get these intense anxiety attacks unlike anything I ever experienced in the 15 years I have had anxiety. It is more anxiety than I even knew a human could experience.
Just picking up my apartment a little shoots my blood pressure to 150/101 and my heart climbs to 158. I checked after cleaning a little because I felt this pressure in my head and my knees felt shaky. That is another thing when I walk know my legs go weird on me and shake at times, other times I lose feeling in my wrists or my face. All these feelings and things happening is not good for a nervous person to deal with.
I tried to stop smoking cold turkey and my blood pressure feel so low that I started to black out so I am forced to smoke and trying as hard as I can to reduce the amount each day so my body can take it. Oddly usually when someone quits smoking the heart rate will drop, but mine stays high.
I called a Gastro doctor today because I have stomach issues and H. Pylori bacteria. They are booked till June, but can get me in with the nurse May 8th. So that is when I will be going there. I started taking pepcid last night in case I do have an ulcer because sometimes I have thrown up some small brown specks when I ate nothing brown and sometimes small amounts of blood.
I guess it is good that I have the energy to start writing again. Part of it is because I am scared I will die and I feel this need to connect and tell my story.
I will write more if I can soon. Because there is so much to this story I can't write it all out at once.
Tomorrow I go in for my echo of my heart and wear the 24 hour heart monitor.
Monday, April 6, 2009
My mom has cancer and I am sick
I am going to keep this as short as possible, but there is a lot of information of what has been going on. I will just summarize as best I can.
Jan 21st-Feb 14th I tapered off xanax. My throat issue went away once the drug was stopped. However from the time of the tapper till now I have been unable to eat very much food. I throw up a lot and have dropped 17 lbs. This is from some sort of benzo withdrawal that the doctors refuse to recognize.
March 4th I was so ill and wanted relief I decided to try going on an anti-depressant. So I took 10 mg of paxil and several hours later fainted on the floor. I called my primary doctor and made and appointment for the next day. Later that night my heart rate started to climb and was at 140 beats a min so at 4:30am I had my parents take me to the ER. They did an EKG and told me to see my primary care doctor. I never took paxil after that day.
At 11:30am March 5th I saw my primary care doctor and he refused to listen to my heart and yelled about me being off xanax and said "so what you fainted who cares!" and yelled some more and this went on and on to long for me to type out maybe someday I will. He refuses to treat me so no primary care doctor.
Since March 4th My heart rate has been between 100-150 at rest (very rate will it go to normal), I have vomited, been jolted out of my sleep with anxiety attacks, I have major panic attacks and in a depression.
March 9th my mom had a colon scope done and was told she has colon cancer. She has surgery on April 22nd to remove the cancer and then they will stage the cancer to see if she needs chemo.
March 29th my heart rate was so high I went to a different ER where they did a ton of blood work, gave me an IV, chest xray and did an EKG. The blood work that came back quick was normal and I had a few tests that take longer so they said they would call me.
April 1st. I got close to fainting 2 times and my blood pressure went from high to low. I was so sick and shaky that I emailed Keith (my xbf) to tell him goodbye in case I died. Went back to the ER that night and they just did an EKG and said to follow up with my heart tests.
This Thursday April 9th I go in to have an Echo of my heart and a 24 hour monitor placed on it.
Today the hospital ER called me to tell me one of my tests came back positive for H. pylori the bacteria that causes peptic ulcers and now I have to see a doctor to get treatment for that. Most of the pills they use to treat that I can't even take. H. pylori also can lead to stomach cancer many years down the line if not treated. I might have to have a scope done of my stomach as well. I decided to put this off till after my moms surgery. So I assume I will try to make an appointment with a new primary care doctor around May 1st.
I have no health insurance so I am applying yet again for medicaid which I am always denied for.
In 4 months I have lost my 5 year relationship, Become very ill and my mother has cancer. I cry all the time and have so much anxiety (part of which was caused by that stupid pill)
I went emotionally numb for a few mins today. I couldn't feel anything..I felt dead. This is all really too much to handle. So this is why I have not been writing and there is so much more detail to all of this, but I just wanted to do a short update.
If you happen to be having your own problems with benzo withdrawal please see the following sites for information.
http://www.benzo.org.uk
http://www.benzowithdrawal.com
Jan 21st-Feb 14th I tapered off xanax. My throat issue went away once the drug was stopped. However from the time of the tapper till now I have been unable to eat very much food. I throw up a lot and have dropped 17 lbs. This is from some sort of benzo withdrawal that the doctors refuse to recognize.
March 4th I was so ill and wanted relief I decided to try going on an anti-depressant. So I took 10 mg of paxil and several hours later fainted on the floor. I called my primary doctor and made and appointment for the next day. Later that night my heart rate started to climb and was at 140 beats a min so at 4:30am I had my parents take me to the ER. They did an EKG and told me to see my primary care doctor. I never took paxil after that day.
At 11:30am March 5th I saw my primary care doctor and he refused to listen to my heart and yelled about me being off xanax and said "so what you fainted who cares!" and yelled some more and this went on and on to long for me to type out maybe someday I will. He refuses to treat me so no primary care doctor.
Since March 4th My heart rate has been between 100-150 at rest (very rate will it go to normal), I have vomited, been jolted out of my sleep with anxiety attacks, I have major panic attacks and in a depression.
March 9th my mom had a colon scope done and was told she has colon cancer. She has surgery on April 22nd to remove the cancer and then they will stage the cancer to see if she needs chemo.
March 29th my heart rate was so high I went to a different ER where they did a ton of blood work, gave me an IV, chest xray and did an EKG. The blood work that came back quick was normal and I had a few tests that take longer so they said they would call me.
April 1st. I got close to fainting 2 times and my blood pressure went from high to low. I was so sick and shaky that I emailed Keith (my xbf) to tell him goodbye in case I died. Went back to the ER that night and they just did an EKG and said to follow up with my heart tests.
This Thursday April 9th I go in to have an Echo of my heart and a 24 hour monitor placed on it.
Today the hospital ER called me to tell me one of my tests came back positive for H. pylori the bacteria that causes peptic ulcers and now I have to see a doctor to get treatment for that. Most of the pills they use to treat that I can't even take. H. pylori also can lead to stomach cancer many years down the line if not treated. I might have to have a scope done of my stomach as well. I decided to put this off till after my moms surgery. So I assume I will try to make an appointment with a new primary care doctor around May 1st.
I have no health insurance so I am applying yet again for medicaid which I am always denied for.
In 4 months I have lost my 5 year relationship, Become very ill and my mother has cancer. I cry all the time and have so much anxiety (part of which was caused by that stupid pill)
I went emotionally numb for a few mins today. I couldn't feel anything..I felt dead. This is all really too much to handle. So this is why I have not been writing and there is so much more detail to all of this, but I just wanted to do a short update.
If you happen to be having your own problems with benzo withdrawal please see the following sites for information.
http://www.benzo.org.uk
http://www.benzowithdrawal.com
Sunday, October 19, 2008
My Nine Points Of Interest
A letter I received on youtube. My reply is under the letter.
"Agoraphobia is a real illness but it's also important to know that you can overcome it. For everyone, the recovery time is different. Persistence is the key. Avoidance only makes anxiety worse. Years ago Oprah had a show (before Dr. Phil was famous) where they worked with phobias, including agoraphobia.
You must not give up or see this illness as a "permanent" one. It's about retraining your brain to see things properly and it takes a lot of hard work and determination.
One of the programs I did, said that it takes at least 1000 times of telling yourself something before you finally believe it. This helped me to see that I had A LOT of work ahead of me with positive, truthful self-talk.
One of the books that helped me the most about agoraphobia was a book called "Hope and Help for My Nerves" by Claire Weekes. She also did another book based on panic/anxiety attacks called "Peace from nervous suffering". They are both very good however "Hope and Help" specifically speaks about agoraphobia ( avoidance behaviors).
Repetition is very important for people who are suffering from agoraphobia. For me, I had to visit the grocery store every day, stand in line, allow myself to panic and practice telling myself the truth - it was hard to do. Very uncomfortable. However, there was one truth that got me through that line everyday - it was the fact that I knew I could not live like that and I was willing to do whatever it took to get better. I learned that it takes your body a long time before it "feels" the affects of your new thoughts/behaviors.
So even when you think your practice sessions are not working....they are.
It's hard to believe what others have said about recovery. To trust what others have said to you about how to get better is very difficult. Because in the back of your mind you think that it worked for them...but what if it doesn't work for you. That's the famous lie that anxiety likes to tell. It's been telling it for decades and decades.
Feelings are not facts. Feelings indeed are the end result of what we tell ourselves.
You might also check out http://www.recovery-inc.org It's free and chances are good that you have one nearby. They also now offer meetings over the phone. This program is cognitive/behavioral "hands on" ( meaning that you learn the cognitive/behavioral approach in these meetings first-hand). For some, this is the best way since they have a hard time keeping their thoughts in line with truth, especially when severely anxious.
http://paniccure.com/Overcoming_Agoraphobia/Overcoming_Agoraphobia.htm
This website offers you a step-by-step plan. It helped me great many years ago and made a huge difference in my recovery.
If you ever have any questions about my experience or just want to vent, feel free to email anytime!
Don't give up! There is freedom- I know because I am finally free of that torment!"
-----------------------------------------------------------------------
My Reply:
I am glad you are doing better. I do have and read the book "Hope and Help for My Nerves" by Claire Weekes it is a very good book.
I just want to be more clear on what I am talking about in my videos. Fear of the way you feel is a trap that I understand. The more you are scared of lets say a dizzy spell, then you might have the thought "I hope I don't faint" this will set in motion your heart pounding because you took a simple dizzy spell and scared yourself more. And as you know it will spiral out of control.
I agree CBT and/or medications really can help this illness. However many times people throw around the word "cure". This all depends on what you think a "cure" is.
At one time I was completely in my house and now I am not. That part I can fix and have my ups and downs. I have had panic attacks for 17 years and agoraphobia mostly for the past 5 years due to the panic attacks. However here is the thing. I am not scared of having a panic attack or even the general anxiety that goes along with having the disorder.
Here is where my real interests fall:
1) The lack of understanding by the public and many medical professionals on the subject. I can not tell you how many times I have been treated badly by medical professionals or have had to explain to them what agoraphobia was. I feel they should be informed of the illness so they can help the person get through it and show compassion. Not treat people in away that will make them feel worse or more scared of a situation especially for people who have not yet learned to control their panic.
2) Responsible information given to the patient about the dangers of medications especially. SSRI drugs and the newer classes of SSNRI's. Only a well informed patient can make a well informed choice. There to date has been no long term studies on SSRI drugs used over the long term. Also many studies show that the SSRI drugs did a little better and sometimes worse in placebo trials.
3) After medication and CBT there are tools we all learn to deal with stressful situations such as deep breathing ect ect. At this point we are still left worrying more than the average person and just keeping it under control. I am more interested in why we are hyper-sensitive in the first place. An answer to that question could be very useful to people in the future who develop this problem.
4) People need to understand there is a range of panic attacks. Not all people with panic attacks fit in the same box. The easiest way to explain this is with seizures. Anyone can have a seizure be it from overdose, a hit to the head etc. Once the issue is removed, in this case being the medication we would not have a seizure again because the offending problem was removed. Now there are people with epilepsy. They have seizures for a completely different reason.
Keeping it in that context I would like people to understand that some people may develop panic disorder because of a very stressful time in their life once that problem is removed the panic attacks can be dealt with. Other people started having panic attacks for no reason. In many cases people can be helped. Especially to deal with the feelings of panic attacks and helped to stop the escalation once one starts. However there are some people where no matter how much CBT you do and no matter how many medications you take the high anxiety level remains. This is what is of great interest to me.
I have had people contact me who have done CBT and are currently on 7 different medications and they are still suffering. I have also had people who stopped medication and force themselves to go to work or live their life in general, but are still suffering.
For example I would get a job and go everyday, every month I would go and get my hair cut, I would go shopping when I needed food. At no point did I become "cured". Did I learn to deal with the feelings and not be scared of them? Sure. For that I am grateful. However what never went away and what indeed does not go away for a large part of people is they still experience having unrealistic body responses in normal everyday situations.
5) Truthful information given to people with panic attacks. Usually they are told no matter how bad the panic attack is it impossible to faint. This is not the case and many people with panic attacks have fainted during one. I feel it is best to inform them that though it usually doesn't happen it could. This way if that should happen to a person having a panic attack they do not completely flip out thinking they are worse off than someone else and becoming more frightened.
People are also told. You won't throw up during a panic attack you will just feel like you will. This is not true and I know that first hand. I throw up during most of my panic attack as well as when I am nervous in general. Throwing up does not scare me however I think you would agree it would be inconvenient to throw up while a dentist is working in my mouth or in isle 4 in the supermarket.
That phobias or feelings have never killed anyone. Well that also is not the truth. Though rare there has been 23 documented deaths due to blood/needle phobia. They died from cardiovascular collapse. This however is rare like I said. However when medical professionals are dealing with a blood/needle phobic (which is considered currently as genetic) they should have a crash cart and also a place for the person to lay down when blood is drawn.
Personally I have this phobia and I can not tell you how many places I have called that have no place for you to lay down. They all just have chairs to sit in.
6) Medicaid for people suffering with panic attacks and/or agoraphobia if they do not have health insurance. Without that getting the help they need to help control the panic attacks can become a challenge. For example I do not have health insurance and have been denied medicaid as well as other programs New York State offers. So every week I see a student in training. That is all I can afford. Calling around to doctors that treat this condition might have a sliding fee. If there normal fee is $120 for an hour they are willing to sometimes go to $70. That still comes out to $280 a month. Many people just do not have that kind of money.
7) The lack of knowledge in addiction recovery centers for people who became addicted to drugs or alcohol because that is the only way they knew how to control the anxiety at that point in time in their life. Many recovery centers place everyone is the same box, an "addict". Just like there are different people with levels of panic disorder there are different kinds of addicts.
From personal experience in an alcohol rehab program I was told all my anxiety was from drinking. However they never understood that the anxiety was there in high levels before I ever drank. I was self-medicating. This was not understood in the least and I was just told I could take paxil or zoloft. This of course right after they said "A drug is a drug is a drug." Rehab staff as well and many people involved in government think it can all be fixed with a pill. This is not the case in many peoples lives. Also because of side effects some people can not tolerate the drug itself and feel worse than they did having the panic attacks.
I was also told I would never be able to stop drinking without "them" or without A.A. Try getting an agoraphobic to an A.A. meeting where they have to talk and share. Especially as the anxiety is now climbing because for years you dulled it down with alcohol.
Again it was a lie. A.A. is a good program and has helped countless people. It was not for me and I was made to feel I could never stop drinking on my own. I did stop on my own and I am very thankful and proud of that. Especially since I was told it was impossible.
8) Diet can and does play a role in peoples lives. Not only for physical health, but in some people their mental health. I feel that should be looked into more.
9) That men who have this disorder are treated with respect and not considered weak or as other men put it to each other "stop acting like a girl." This behavior is unacceptable especially coming from a doctor, nurse or any medical professional. Our medical system needs a major overhaul and the professionals need more classes or refresher courses in compassion. In all disease the person is not a number and not their health insurance plan, but a person who has real feelings, a real life and real people who love them.
Brian :-)
"Agoraphobia is a real illness but it's also important to know that you can overcome it. For everyone, the recovery time is different. Persistence is the key. Avoidance only makes anxiety worse. Years ago Oprah had a show (before Dr. Phil was famous) where they worked with phobias, including agoraphobia.
You must not give up or see this illness as a "permanent" one. It's about retraining your brain to see things properly and it takes a lot of hard work and determination.
One of the programs I did, said that it takes at least 1000 times of telling yourself something before you finally believe it. This helped me to see that I had A LOT of work ahead of me with positive, truthful self-talk.
One of the books that helped me the most about agoraphobia was a book called "Hope and Help for My Nerves" by Claire Weekes. She also did another book based on panic/anxiety attacks called "Peace from nervous suffering". They are both very good however "Hope and Help" specifically speaks about agoraphobia ( avoidance behaviors).
Repetition is very important for people who are suffering from agoraphobia. For me, I had to visit the grocery store every day, stand in line, allow myself to panic and practice telling myself the truth - it was hard to do. Very uncomfortable. However, there was one truth that got me through that line everyday - it was the fact that I knew I could not live like that and I was willing to do whatever it took to get better. I learned that it takes your body a long time before it "feels" the affects of your new thoughts/behaviors.
So even when you think your practice sessions are not working....they are.
It's hard to believe what others have said about recovery. To trust what others have said to you about how to get better is very difficult. Because in the back of your mind you think that it worked for them...but what if it doesn't work for you. That's the famous lie that anxiety likes to tell. It's been telling it for decades and decades.
Feelings are not facts. Feelings indeed are the end result of what we tell ourselves.
You might also check out http://www.recovery-inc.org It's free and chances are good that you have one nearby. They also now offer meetings over the phone. This program is cognitive/behavioral "hands on" ( meaning that you learn the cognitive/behavioral approach in these meetings first-hand). For some, this is the best way since they have a hard time keeping their thoughts in line with truth, especially when severely anxious.
http://paniccure.com/Overcoming_Agoraphobia/Overcoming_Agoraphobia.htm
This website offers you a step-by-step plan. It helped me great many years ago and made a huge difference in my recovery.
If you ever have any questions about my experience or just want to vent, feel free to email anytime!
Don't give up! There is freedom- I know because I am finally free of that torment!"
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My Reply:
I am glad you are doing better. I do have and read the book "Hope and Help for My Nerves" by Claire Weekes it is a very good book.
I just want to be more clear on what I am talking about in my videos. Fear of the way you feel is a trap that I understand. The more you are scared of lets say a dizzy spell, then you might have the thought "I hope I don't faint" this will set in motion your heart pounding because you took a simple dizzy spell and scared yourself more. And as you know it will spiral out of control.
I agree CBT and/or medications really can help this illness. However many times people throw around the word "cure". This all depends on what you think a "cure" is.
At one time I was completely in my house and now I am not. That part I can fix and have my ups and downs. I have had panic attacks for 17 years and agoraphobia mostly for the past 5 years due to the panic attacks. However here is the thing. I am not scared of having a panic attack or even the general anxiety that goes along with having the disorder.
Here is where my real interests fall:
1) The lack of understanding by the public and many medical professionals on the subject. I can not tell you how many times I have been treated badly by medical professionals or have had to explain to them what agoraphobia was. I feel they should be informed of the illness so they can help the person get through it and show compassion. Not treat people in away that will make them feel worse or more scared of a situation especially for people who have not yet learned to control their panic.
2) Responsible information given to the patient about the dangers of medications especially. SSRI drugs and the newer classes of SSNRI's. Only a well informed patient can make a well informed choice. There to date has been no long term studies on SSRI drugs used over the long term. Also many studies show that the SSRI drugs did a little better and sometimes worse in placebo trials.
3) After medication and CBT there are tools we all learn to deal with stressful situations such as deep breathing ect ect. At this point we are still left worrying more than the average person and just keeping it under control. I am more interested in why we are hyper-sensitive in the first place. An answer to that question could be very useful to people in the future who develop this problem.
4) People need to understand there is a range of panic attacks. Not all people with panic attacks fit in the same box. The easiest way to explain this is with seizures. Anyone can have a seizure be it from overdose, a hit to the head etc. Once the issue is removed, in this case being the medication we would not have a seizure again because the offending problem was removed. Now there are people with epilepsy. They have seizures for a completely different reason.
Keeping it in that context I would like people to understand that some people may develop panic disorder because of a very stressful time in their life once that problem is removed the panic attacks can be dealt with. Other people started having panic attacks for no reason. In many cases people can be helped. Especially to deal with the feelings of panic attacks and helped to stop the escalation once one starts. However there are some people where no matter how much CBT you do and no matter how many medications you take the high anxiety level remains. This is what is of great interest to me.
I have had people contact me who have done CBT and are currently on 7 different medications and they are still suffering. I have also had people who stopped medication and force themselves to go to work or live their life in general, but are still suffering.
For example I would get a job and go everyday, every month I would go and get my hair cut, I would go shopping when I needed food. At no point did I become "cured". Did I learn to deal with the feelings and not be scared of them? Sure. For that I am grateful. However what never went away and what indeed does not go away for a large part of people is they still experience having unrealistic body responses in normal everyday situations.
5) Truthful information given to people with panic attacks. Usually they are told no matter how bad the panic attack is it impossible to faint. This is not the case and many people with panic attacks have fainted during one. I feel it is best to inform them that though it usually doesn't happen it could. This way if that should happen to a person having a panic attack they do not completely flip out thinking they are worse off than someone else and becoming more frightened.
People are also told. You won't throw up during a panic attack you will just feel like you will. This is not true and I know that first hand. I throw up during most of my panic attack as well as when I am nervous in general. Throwing up does not scare me however I think you would agree it would be inconvenient to throw up while a dentist is working in my mouth or in isle 4 in the supermarket.
That phobias or feelings have never killed anyone. Well that also is not the truth. Though rare there has been 23 documented deaths due to blood/needle phobia. They died from cardiovascular collapse. This however is rare like I said. However when medical professionals are dealing with a blood/needle phobic (which is considered currently as genetic) they should have a crash cart and also a place for the person to lay down when blood is drawn.
Personally I have this phobia and I can not tell you how many places I have called that have no place for you to lay down. They all just have chairs to sit in.
6) Medicaid for people suffering with panic attacks and/or agoraphobia if they do not have health insurance. Without that getting the help they need to help control the panic attacks can become a challenge. For example I do not have health insurance and have been denied medicaid as well as other programs New York State offers. So every week I see a student in training. That is all I can afford. Calling around to doctors that treat this condition might have a sliding fee. If there normal fee is $120 for an hour they are willing to sometimes go to $70. That still comes out to $280 a month. Many people just do not have that kind of money.
7) The lack of knowledge in addiction recovery centers for people who became addicted to drugs or alcohol because that is the only way they knew how to control the anxiety at that point in time in their life. Many recovery centers place everyone is the same box, an "addict". Just like there are different people with levels of panic disorder there are different kinds of addicts.
From personal experience in an alcohol rehab program I was told all my anxiety was from drinking. However they never understood that the anxiety was there in high levels before I ever drank. I was self-medicating. This was not understood in the least and I was just told I could take paxil or zoloft. This of course right after they said "A drug is a drug is a drug." Rehab staff as well and many people involved in government think it can all be fixed with a pill. This is not the case in many peoples lives. Also because of side effects some people can not tolerate the drug itself and feel worse than they did having the panic attacks.
I was also told I would never be able to stop drinking without "them" or without A.A. Try getting an agoraphobic to an A.A. meeting where they have to talk and share. Especially as the anxiety is now climbing because for years you dulled it down with alcohol.
Again it was a lie. A.A. is a good program and has helped countless people. It was not for me and I was made to feel I could never stop drinking on my own. I did stop on my own and I am very thankful and proud of that. Especially since I was told it was impossible.
8) Diet can and does play a role in peoples lives. Not only for physical health, but in some people their mental health. I feel that should be looked into more.
9) That men who have this disorder are treated with respect and not considered weak or as other men put it to each other "stop acting like a girl." This behavior is unacceptable especially coming from a doctor, nurse or any medical professional. Our medical system needs a major overhaul and the professionals need more classes or refresher courses in compassion. In all disease the person is not a number and not their health insurance plan, but a person who has real feelings, a real life and real people who love them.
Brian :-)
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