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 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.
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 :-)

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