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!"


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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 :-)

Agoraphobia Oprah Show

Domestic Partnership

Next Wednesday morning Keith is going to FL. to visit his family. I am going to drop him off at the airport and he returns on Sunday afternoon. We have been together almost 5 years and this will be the first time we have spent more than 24 hours apart. Since I tend not to leave my house much I am sure I will be a bit lonely. Being a nervous person I am worried about other things as well like him cheating on me, his plane crashing or him seeing how good life is away from me and no longer wanting to be with me. I will just be glad when he is back home.

While he is gone I am going to try to stop smoking. I figure I might as well go through the withdrawal alone. I get so angry and pick fights with people every time I stop so this way there will be no one here to yell at. I think I will actually have a fair shot at stopping if I am left alone and nothing major comes up in my life. Since Keith smokes he said that if I quit smoking while he is gone he will start smoking outside.

I think I am actually hooked to my Xanax. It is a very low dose and I have no plans on stopping anytime soon so I am not stressing over it too much. The reason why I feel like I am hooked is because if it is time to take my pill my body will actually wake me up. Sometimes I even feel a bit ill around the time I have to take it. However as bad as this is to say I have much larger demons to worry about than a Xanax addiction right now.

I went to my student therapist last Tuesday and I think I finally got through to her. Each person I have ever seen talks about me being cured from medication, cognitive behavioral therapy (CBT) or whatever happens to be in fashion that year. I have done many programs all claiming a 70%-90% success rate. None have worked on me. She wanted to do CBT again and at first I was going to, but the more I thought about it it just seemed like a waste of time. I have already done CBT three times with no success.

A large part of treatment seems to be getting to a point where you are not scared of the feelings you are having. The problem is most of the time I am not scared of how I feel. I have lived with it for so long that I am pretty use to it. Now to be fair if I have a very strong panic attack, which happens rarely now, it might take me by surprise by being so intense and that would scare me. Not because of how I feel, but because I don't want to really be having a heart attack someday and instead of going to the Emergency Room sitting here at home doing deep breathing and drop dead. That is one thing no one can give me a straight answer on. How do I know when there really is something wrong?

Anyway, my therapist and I are actually going to be trying something new...acceptance. Acceptance of me always having anxiety and most the time feeling like crap. I actually like that idea and will see how it goes. There is a lot of anger inside of me because I keep being told I can be well and then never am. I look at it this way. If a person was in chronic pain they would have to learn to live in chronic pain. Well I am in chronic pain...just not that kind of pain, but pain nonetheless.

You guys, sometimes I get so tired of dealing with it and I am sure many of you can relate. Like I said before most of the time I am not even scared of the "feelings". However I am so tired of throwing up before I see a doctor, dentist or anything my brain deems too stressful. I am not scared of being lightheaded, but I am tired of being lightheaded. I am tired of being tired.

New York State does not allow gay marriage, but it does allow domestic partnerships. Keith and I have talked about it and it looks like I am getting "married" soon. We are going to see if prenuptial agreements are needed for domestic partnerships and how they work compared to marriage. We just want to make sure should we split what is mine is mine and what is his is his. Especially since our parents are getting on in years and if they should pass away we want to make sure the other can't get it in a messy "divorce" situation. I can't see him taking everything I have and I don't think I would act that way either, but better to have a prenuptial because as many people know love can turn to hurt and sometimes that leads to revenge on the person we once loved.

This is a sucky reason to get "married", but if we do I can have health insurance finally. I can go under his health plan and it will only be $176 a month. Maybe I can finally see a real therapist and get some tests run at the doctor that are long over due. As any reader of my blog knows every year or so I need to get a chest x-ray since I had lung surgery. Last year it cost me $600 for the x-ray. I just do not have that kind of money. Not to mention God forbid if I was to get cancer or was in a car crash. How would I ever pay that back?

Saturday, October 11, 2008

Dental Mercury Fillings

Finally the FDA has caught on (well starting to, they always issue the warning to pregnant women and children first) to what I have been saying about Mercury in the dental fillings. I never wanted the metal fillings in my mouth and told the dentist, yet I have two. I have been treated like I am crazy for not wanting them by therapists in the past because the "FDA says it's safe" and at the dentist office over not wanting a "fluoride treatment" which hopefully the FDA will come to terms with eventually.

I do not care what the current FDA recommendations are about "not removing the mercury containing fillings" when the rest of my teeth are done they are coming out. I am just so annoyed that I will have to end up in the dentist chair longer than I needed to be (esp. when I have a large issue with being at the dentist), had the dentist and medical professionals backed me up. Not to mention wasted money on two fillings.

It is very hard to go it alone, medical professionals keep repeating there is no danger and you start to doubt your own sanity after awhile. Besides, I told the dentist I did not want them, yet he pays little attention to what I have to say and did them anyway, since he never writes anything down (I should not have to remind the dentist every visit).

If he takes issue with me not getting them I am going to get another dentist period. If a metal has to be used it can be gold though in most causes that is not necessary and the price is not astronomical because such a little amount is used. Not to mention worth it for not having mercury vapors when I chew being inhaled into my lungs and entering my blood stream.

Mercury can only be dumped in two places. A toxic waste facility and the human mouth. (Even your energy saving light bulbs have to have special treatment when disposed of.) Mercury is considered one of the most toxic elements.

Even when the silver content is sold from the filling as scrap metal there is a warning from scrap metal dealers.

"Dental Amalgam Scrap: Dental Amalgam Scrap shall consist of dental filling materials that are a silver alloy.
CAUTION : common dental amalgam is a Silver/Mercury alloy and should be treated with the proper handling and packaging methods to ensure the containment of Mercury vapors and Mercury exposure.
This materials should be tested (assayed) and sold by the silver content. as agreed upon by the buy and seller."


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From the FDA site in June 2008

Questions and Answers on Dental Amalgam
1. What is dental amalgam?

Dental amalgam is the silver-colored material used to fill (restore) teeth that have cavities. Dental amalgam is made of two nearly equal parts: liquid mercury and a powder containing silver, tin, copper, zinc and other metals. Mercury concentration in dental amalgams is generally about 50% by weight, while the silver concentration ranges from 20-35%.

2. What is FDA’s role in dental amalgam?

Dental amalgams are medical devices and are regulated by FDA’s Center for Devices and Radiological Health (CDRH). CDRH is responsible for ensuring that medical devices are reasonably safe and effective and that the labeling has adequate directions for use and any appropriate warnings.
3. What are the safety concerns about dental amalgam?

Dental amalgams contain mercury, which may have neurotoxic effects on the nervous systems of developing children and fetuses. When amalgam fillings are placed in teeth or removed from teeth, they release mercury vapor. Mercury vapor is also released during chewing. FDA’s rulemaking (described in question 7) will examine evidence concerning whether release of mercury vapor can cause health problems, including neurological disorders, in children and fetuses.

Since the 1990s, FDA and other government agencies (CDC, NIH) have reviewed the scientific literature looking for links between dental amalgams and health problems. In September 2006, an advisory panel to the FDA reviewed FDA’s research and heard presentations from the public about the benefits and risks of mercury and amalgam.

You can read the summary of the panel meeting at: http://www.fda.gov/cdrh/meetings/090606-summary.html

In addition, a complete transcript is available at: http://www.fda.gov/ohrms/dockets/ac/cdrh06.html#dentalproductspanel

4. Are there other dental filling materials that can be used instead of amalgam?

Yes, there are several other types of dental fillings.

Resin composites are tooth-colored materials made from powdered glass and resin compounds. When composites were initially introduced, they were not very strong and were used primarily in the front teeth. Newer composites are stronger, although they still tend to wear more than metal-based materials and generally need earlier replacement.

Glass ionomer cement is also a tooth-colored material. It is not usually used for long-term fillings because it breaks easily.

Porcelain, gold, and other metals are also used as filling materials. Gold and porcelain are used for inlays, veneers, crowns, and bridges. These fillings are made outside the mouth and cemented into place after they are formed.

5. Should I have my amalgam fillings removed and replaced with these other materials? If I have a cavity, should I choose to get amalgam fillings?

FDA does not recommend that you have your amalgam fillings removed. FDA is engaged in a rulemaking that may lead to revised labeling. It is also reviewing evidence about safe use, particularly in sensitive subpopulations.

If you are concerned about the possible health effects of amalgam fillings, you should talk with your qualified health care practitioner.

Dental amalgam fillings are very strong and durable, they last longer than most other types of fillings, and they are relatively inexpensive. You may want to weigh these advantages against the possibility that dental amalgam could pose a health risk, until further information is conveyed through the rulemaking (see question 7) or otherwise.

6. Should pregnant women and young children use or avoid amalgam fillings?

The recent advisory panel believed that there was not enough information to answer this question.

Some other countries follow a “precautionary principle” and avoid the use of dental amalgam in pregnant women. Advice about dental amalgams from regulatory agencies in other countries is available below.

Canada: http://www.hc-sc.gc.ca/ahc-asc/media/nr-cp/1996/1996_63_e.html
France: http://afssaps.sante.fr/ang/pdf/amalgam.pdf
Sweden: http://www.kemi.se/templates/Page.aspx?id=5233

Pregnant women and persons who may have a health condition that makes them more sensitive to mercury exposure, including individuals with existing high levels of mercury bioburden, should not avoid seeking dental care, but should discuss options with their health practitioner.

7. What is the next step for FDA?

In 2002, FDA published a proposed rule to classify dental amalgam as a class II device with special controls. On April 28, 2008, FDA reopened the comment period for that proposed rule. The comment period will be open until July 28, 2008. After reviewing all comments, FDA intends to issue a final rule classifying dental amalgam.

By July 28, 2008, FDA is requesting comments supported by empirical data and scientific evidence concerning this classification and special controls for dental amalgam. In addition, if class II (special controls) is the appropriate classification for these devices, FDA requests comment on whether the two types of special controls proposed by FDA in 2002 (materials and labeling) provide reasonable assurance of the safety and effectiveness of these devices and on whether the special controls FDA described in 2002 should be revised in light of the recommendations and with respect to the discussions by the 2006 joint committee.

Controls on the Materials. For example, should the material controls proposed by FDA address conformance to recognized consensus standards that make recommendations for testing, compressive strength, and identifying the mercury vapor released by the device?

Labeling Controls. For example, how should labeling controls, if any, address the disclosure of composition, including mercury content, and precautions regarding use of the device in sensitive subpopulations composed of individuals who respond biologically at lower levels of exposure to mercury than the general population? If so, which subpopulations should be included (e.g., children under age 6, pregnant and lactating women, hypersensitive or immunocompromised individuals)? Should the labeling controls require more specific patient labeling (e.g., informing patients of identified sensitive subpopulations of the mercury content, the alternatives to the device and their relative costs, and health risks associated with the failure to obtain dental care)?

For the agency’s future analysis of benefits and costs of the regulatory options for dental amalgams, FDA also requests comments, including available data, on the following questions:

(1) How many annual procedures use mercury amalgams? What are the trends?
(2) What are the differences in cost between amalgams and alternative materials (e.g., composite, other metals, ceramics, etc.)? Are there differences in replacement lives?
(3) What are reimbursement rates for dental amalgam and the alternative materials?
(4) How would labeling describing the risks of amalgam for certain subpopulations (e.g., children under age 6, pregnant and lactating women, hypersensitive or immunocompromised individuals) affect the demand for, and use of, mercury amalgam? How would the risks included in the labeling be communicated to those subpopulations?
(5) What is the current exposure to mercury for patients? For professionals? What would be the reduction in exposure associated with the use of alternative materials?
Updated June 3, 2008

Monday, October 6, 2008

Convenient Health Food

In many of my videos and writings I have brought up eating healthy to help combat anxiety and depression. However in a modern day world this is not always easy or convenient. By no means am I able to stick to a healthy diet 100% of the time. Not to long ago I ate an entire medium pizza just because I did not feel like having to make any food and because I was not in the mood for any of my "convenient healthy food". So when you try to eat better don't feel bad if a few days here and there you go crazy and eat a box of Twinkies.

Eating healthier gets easier with time. One of the first things you have to do is get most of the things you have read about out of your head. There are so many conflicting diets. Vegan, Vegetarian, Raw Diet, Raw Vegan, Paleolithic Diet, the list goes on and on. There is nothing wrong with most of the diets. But as I have found one size does not fit all. There is no perfect diet. There is only "your" perfect diet. One diet may do wonders for other people and make you a complete mess.

After much research it is my opinion that the "natural" human diet is fruit, vegetables and insects with a very small amount of wild animal such as rabbit, snake, frog, and squirrel. That being said, short of a nuclear war or total economic meltdown I am not about to go harvesting the ants and mealworms just yet.

OK so how can you make super easy choices in a complicated world. These are not "perfect" choices. These are just "better" choices. They like anything else come with their downside.

Canned Food: Low sodium is best but if the store does not have low sodium its ok. White Potato, Carrots, Beans (not pork and beans just plain beans), spinach and beets. Canned chicken and canned sardines. All you have to do is open the can, drain and eat it right out of the can with a fork. Canned food does not have to be heated it is precooked. Sometimes what you can do when you are very hungry and about to eat, lets say half a cake, is open a can of carrots and eat that first. Then eat the cake.

Boil in bag white rice: Just boil water, throw the bag in and about 10 minutes later you have rice. Add your favorite herbs and spices and a little salt if you like or just eat it plain. Tomato sauces mix well with rice. (Brown Rice is better but not always in the convenient boil in bag).

Olive Oil: Extra Virgin Olive Oil is the best choice. Buy a good brand it will taste better and be smoother. Pour the olive oil on to a tablespoon put it in your mouth and swallow. Take two tablespoons then drink a glass of water.

Baby Food: Go and buy stage 3 baby food. Beach-Nut and Gerber are the least expensive, but you could also buy the more expensive organic baby food if you wish. Be sure to buy it in jars only and not the plastic containers. Some of the best choices are carrot, sweet potato, banana, and pear. Open the jar and pour the contents into a cup. Add some cold water to the jar and replace the lid. Shake the jar up and then pour that into your cup. Then add a tiny amount of water to the jar again and shake. Then pour that into the cup. Take a spoon, stir and then drink. You will be surprised how good it actually will taste. When it comes to baby food do not be scared to try the ones with meat. I was for awhile assuming it would taste awful and be gross. It isn't. The ones I have tried are both by Beach-Nut and are Country Vegetable & Chicken and Turkey with Rice. They do contain whole peas and whole bits of rice so be sure when you drink you know that some chewing will be involved.

Applesauce: Get the kind that is 100% natural with no sugar or corn syrup added. Eat it plain or do a 50/50 mix. Add applesauce into a cup and then add some warm water, stir and drink.

Rice Milk: Try this in place of milk but make sure you get the fortified kind that contains Calcium and Vitamin D. Make sure it says Dairy Free.

Multi-Vitamin: Make sure it contains 100% of your Iodine. If you are a man or if you are a woman who no longer gets her menstrual cycle the vitamin should be Iron Free.

There are no hard set rules but things I like to avoid when possible are: Microwaves, Corn, Corn Syrup (basically anything corn), Soy, artificial colors and flavors, artificial sweeteners.

Things to experiment with: Gluten Free and Dairy Free Diets. Maybe try a Grain Free Diet. See how that works for you.

If you are not like me and do not mind having blood work then three great test to have run are an allergy test to foods, celiac disease and hemochromotisis. Also have your Vitamin D levels checked.

Other than that make your own healthy choices. Eat a well balanced diet. Try to get enough sleep. If you are able too try to be sure you are asleep between 10pm and 2am. That is easier said than done if you are like me and can't sleep sometimes. I end up going to bed at 7am and waking up at 3pm.

Don't underestimate the sun. Get some when you can. Do not sit and burn in it, but be sure you get unprotected sun light on your skin.

Try meditation or chanting if you are open to it. One great mediation that walks you through it step by step (which I find helpful otherwise my brain is talking to me too much) is called "Living Soul Meditation" by Mitchell Gibson. If you get the CD the first few time you listen... you will just go through it till you understand it. After that you will have memorized it and you can flow through the CD much easier. (Just so you know I am not going to get any money if you order the CD. I Just really have found it helpful at times.) Here is the link to the CD. http://www.tybro.com/html/audio_cd_s.html