Dysautonomia archives

Slow improvement from dysautonomia

Posted by Tony on December 06, 1998 at 08:12:24:

I just finished looking up dysautonomia in the archives. I was amazed to see how many syptoms people had they seemed a lot like mine. It was looking at your recommendations to them that prompted me to write you again.

I'm sure you don't remember, but I wrote you with a myriad of symptoms about 8 months ago, and it was you who got me on the right track that I've been following since then. Without rehashing my whole case, I'll give you brief reminder.

At age 27, I came home from work, had a loose bowel movement, and passed out. Since then I have had massive, constant digestive problems, from my throat to my rectum. I have severe bouts of brain fog all the time. I have days of difficulty breathing, weird pains on the top of my head, swollen lymph nodes, fatigue, blood pressure problems (especially when rising or on exertion), etc.

After extensive medical testing, they said I was fine, and that I had sever CFIDS and IBS, but they weren't really sure. After that, I ran to alternative medicine and never looked back. I have seen 2 chiropractors, 2 homeopaths, 3 naturopaths, an accupunturist, an amma therapist, a psychologist, and I'm sure others that I'm forgetting. All of these practitioners assured me that they could help resolve all of my problems.

Well, it's been over a year and a half, and I haven't improved that much. I've been on a gluten free, dairy free, organic whole foods diet for over 6 months. I've also been meditating at least twice a day for that time. And of course, I've spent thousands of dollars on alternative treatments and supplements. Nothing seems to be helping. Yes, I've had what I would call minimal improvement, but I believe it's only due to the fact that I'm accepting my condition, and not living with the stress of the constant fear that I have some terrible disease. But this is not a state I'm comfortable with. I want heal. I want my life back, and nothing I do seems to help.

So I guess the point of this letter is just a plea to you to ask if you have any ideas on what I could do. Some kind of treatment I haven't tried, or a specific doctor you could recommend, etc. I am really starting to lose hope. I don't want to accept my state of health as it is, but I also don't know what else to do. I have not been able to work, have wiped myself out financially, and I just don't know what else to try. I hope you have some ideas. You are about the only doctor I know that really seems to care about people. That is priceless in an of itself, even without all the free help you give everyone on the BB.

Thanks again, and sorry this was so long.


Follow Ups:

Re: Slow improvement from dysautonomia

Posted by Walt Stoll on December 07, 1998 at 10:30:08:

In Reply to: Slow improvement from dysautonomia posted by Tony on December 06, 1998 at 08:12:24:

Dear Tony,

I wish I could have been with you when you started" following any of my advice". When It became obvious that you were not getting the results you should have been getting, in the time frame everyone else gets them, the direction of your efforts could have been adjusted.

My first question is: EXACTLY how you learned an effective skilled relaxation technique and how you certified that it was indeed producing the alpha/theta brain rhythm needed for expected results AND how often you did it AND under what circumstances.

You have worked much too long at this without dramatic results.

Talk at me.


Follow Ups:


Posted by Tony A on December 07, 1998 at 21:42:58:

In Reply to: Re: Slow improvement from dysautonomia posted by Walt Stoll on December 07, 1998 at 10:30:08:

Dr. Stoll,

I wish you were here too. The relaxation I've been doing has been meditation, at least twice a day. I learned how from a psychologist and a yogini. I was also doing progressive relaxation, but I stopped.

I'll be the first to admit that I don't think I'm deriving much benefit from the meditation. When I'm
meditating, my mind is never clear, I am always aware of my surroundings, and I am usually just waiting to be done with it. That is not how I set out for each session, but that's how they usually end up. The only time I seem to be getting any benefit's, is when I'm very tired and I meditate. Then I seem to lose myself and track of time, but I think it's because I fall asleep, which I know I'm not supposed to do.

My biggest concern is that since nothing I have done has helped me at all, maybe it isn't something like dysautonomia, but something else organic and much more serious. Not that what I have doesn't feel serious to me, but noone around me seems to agree with that.

Hope I answered what you wanted to know. Thanks again.


Follow Ups:

Re: Dysautonomia? (How to do SR!)

Posted by Walt Stoll on December 08, 1998 at 11:53:15:

In Reply to: Dysautonomia? posted by Tony A on December 07, 1998 at 21:42:58:

Thanks, Tony.

Yes, indeed, you answered what I wanted to know. You have not yet "meditated" and you have no idea if that is even the best approach for you. Since this one thing is the only long term answer to your condition you MUST do this right.

If you go to anything I have ever said about this You will see that the minimum is to get a copy of the "Relaxation Workbook" (earliest editions are best and are available in any library network). Then try one way, that makes sense to you, and be sure to check out your results with a biofeedback session after about 2 weeks. If you are reaching the "relaxation response" the machine will corroborate that and then all you need to do is to discipline yourself to do it. If you are not, the machine will show that and the instructor should be able to tell you which approach (likely also in the book) would be the best for you to try next. Once you find what actually works, do it as I have described in the archives & on the home page of this 'site.

Many times (I would hope stored in the archives.) I have described how to resolve the "falling asleep" problem we all face. Here it is again: Sit up to do it (semirecliner OK). Hold a wooden spoon, or large serving spoon (even a paperback book will do), in your hand. If you slip past alpha/theta into delta (the point where we are all asleep--except for some highly trained Zen masters), muscle control is lost and whatever you are holding in your hand will fall & wake you up. Pick it back up & go on with whatever you were doing.

The time will come when you have better control but in the beginning this always works and costs nothing.

Here, you have put all this effort into something that wasn't working and haven't done the very simple things everyone recommends to accomplish this.

I am not yelling at you personally since this is an unbelievably common thing to happen. It still amazes me how many people will work so hard to not follow the simplest directions. There are reasons for each word I use to describe something like this.

If you have any idea how I could make it any plainer, I would really appreciate the help. I have tried for more than 20 years and this is the best I can do.

You are not well because you have not done the most important thing you need to do to BE well.

Talk at me! Walt

Follow Ups:

Re: Dysautonomia? (How to do SR!)

Posted by Tony A on December 08, 1998 at 18:37:03:

In Reply to: Re: Dysautonomia? (How to do SR!) posted by Walt Stoll on December 08, 1998 at 11:53:15:

Thanks for setting me straight, Dr. Stoll. I didn't take it as you yelling at me, I took it as you trying to help. What I've been doing I was told was the right thing by various practitioners that I spent a lot of money on, but obviously it wasn't working and I'm right back with you where I started. Guess I had to find out for myslf.

So I think what you're saying to me now is that I have to find something, using biofeedback, that will put me in the state I need to be at, and then to practice that diligently. I guess it is pretty stupid that I've been doing something for so long that wasn't working, but I kept being told to stick with it and the results would come. I guess I was just ignorant. I feel like I've let you down.

By the way, even though I had the dermatographia years before I got 'sick', do you think this is all related?

Thanks for the help, and I always appreciate any help you can give me. I really need it.


Follow Ups:

Re: Dysautonomia? (How to do SR!)

Posted by Walt Stoll on December 08, 1998 at 19:12:23:

In Reply to: Re: Dysautonomia? (How to do SR!) posted by Tony A on December 08, 1998 at 18:37:03:

Dear Tony,

You have not let ME down! It is the system that has let YOU down. How could you have known? I am just a keyboard on the end of an information highway.

Your dermatographia was just one milepost on the road that got you here. That is why I responded so firmly to whoever it was that mentioned that her doc said it was nothing to worry about. EASY FOR HIM TO SAY!!!!!!!!!


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