appleby

I find this part so confusing, I don't think my swings are as great as some of the rest of you. My resting pulse is 100 and resting bp is 80/50. If I am sitting in a chair my pulse and bp are fairly consistent. I black out a lot (standing, after eating, etc), but have never fainted. If I go for a short walk my pulse will go up to 150, and any kind of cardio workout makes my pulse go too fast to count. I have had my Norepineprin and Epenephrin measured and they both tend to be high, however my Norepeniphrine is a lot higher. I have had an exaggerated ACTH response to stimulation, and Cortisol values that were sometimes low and at other times just fine. I don't understand why the medical community has so little to say about this syndrome, isn't there enough going on for them to see some patterns in all of us. It seems to me that a lot of us are reporting very similar symptoms and profiles. Is there anyone out there that has any contact with or knowledge of some good fundamental research?

God, reading all of these posts and hearing all of the pain and hut, it breaks my heart. I have had hyperadrenal POTS for some 30+ years, and I have been down there with all of you. After all of these years trying to get help I learned that you have to read the literature yourself, decide what tests you want done, find out as much as you can about which of your autonomic systems are out of whack; and then find a doctor who will let you try the various medications you think might help. Because the wizard of OZ doesn't have anything in his bag for us, we have to find it ourselves. Personally, I am a lot better then I was 30 years ago (I do not have the progressive form), however I had to wait 30 years, and a lot of it is the medications I now take. Good luck everyone and keep fighting, and searching for better treatments.

You could ask your doctor aobut using Prozac instead of Celexa. Celexa is not the best choice for someone with POTS. Prozac is activating and can help with fatigue, Celexa on the other hand will put you to sleep. I have had hyperadrenal POTS for a long time, and have had good results with a combination of Beta-blockers, Prozac (1/4 to 1/2 of a pill), and Provigil. Provigil is better then the stimulants for fatigue as it dose not effect Norepinephrine as much (like we need any more of that). However, I think you really have to experiment, since we each have slightly different underlying causes and degrees of dysfunction. What ever you take start at a low dose and work your way up, we tend to be over sensitive to many medications. Don't give up on the search for the right medications, trying to control Pots with life style changes is like trying to fly without any wings, you are just bound to fall. As an aside I just did a squat and stand without blacking out, or even getting dizzy. In the past when I went to the library and realized that the book I wanted was on the bottom shelf, I would just go find something else. It was almost an unconscious decision.