Sak

Why did I eliminate wheat and sugar and dairy? Desperation. It was suggested to me, and I tried it; I had no other options left. Refined carbs, when metabolized, act just like sugar on your body; so if you have sugar sensitivity, but still eat breads and bread products, you're only doing half of what you should. Carbs and sugar are energy foods, but they upset the delicate balance of the nervous system in even normal people when eaten to excess; and esp. so in the case of dysautonomics. And don't just eliminate wheat--eliminate all foods containing gluten. It's in everything, so you have to watch. I eat a lot of red meat, chicken, fish, fruits and some vegetables; but I won't touch breads of any kind--not even cornbread, because cornbread mixes invariably contain wheat or gluten. Supplements that you find at GNC or hippiemarts can also help; I take shark liver oil, vitamins C & E, selenium and deodorized garlic daily. But watch out and check labels--there's hidden gluten in a lot of that stuff; but GNC is very good about this; many of their products expressly say NO GLUTEN NO WHEAT and NO SUGAR. (I also take sublingual B-12 on occasion.)

Before you go getting your heart butchered, listen to my story. Dysautonomia began for me about your age--at 19. It started in the summer of 1996, during my first vacation from college. It started subtely; I'd drink too much espresso, stay out in the sun too long or go without eating, and my chest would start to pound. I didn't think much of it. Then I started peeing a lot--twice an hour sometimes; I was scared to death that it was diabetes, which runs in my family, but it wasn't. My doctor told me to cut down on caffeine and salt; that summer, I eliminated salt from my diet. That was my first big mistake. Over the next couple months, I began to notice that I'd get palpiatations after eating, esp. at breakfast--and my breakfasts were typical American: loaded with fried foods and carbs. Before long, I found myself having to lay down and sleep after every big meal. Dizziness on standing first appeared about this time as well. I endured this for a couple of years; my heart would race after eating, and I'd sleep; but the palpitations would usually be gone when I woke up. In 1998, I started taking Adderall. For two years I lived on it, espresso and candy bars--and all that made the symptoms worse when they wore off. I moved back home after graduating from college, and in January 2001, the panic started; panic attacks would hit me out of nowhere. The next three years were ****--I could barely do anything; my heart raced constantly, I was exhausted no matter how much I slept, and my brain was in a fog. It wasn't until late last year that I made a personal effort to end all this; I stopped listening to doctors and started eating better. I ate more salt and drank more water (lots of it); I cut out wheat, gluten and all refined sugars, as well as cheese and all dairy products; and I started taking an army of vitamins and supplements. The effect has been enormous. I rarely get dizzy on standing now, and haven't had a panic attack in quite some time. I don't get anxious. The only symptoms that really remain are the fatigue and the fog, and I plan on dealing with those soon by trying Adderall again. Now that the panic is under control, I may be able to resume it. (I still pee a lot, but that's such a minor symptom that I can deal with it and live my life). I strongly suspect that my dysautonomia was made worse by lack of salt, lack of water, and by wheat and sugar; when those were eliminated, the worst of the illness abated. I had no idea I was intolerant to wheat and sugar until I stopped eating them; the symptoms of the intolerance blended with and made worse the autonomic symptoms; I couldn't discern one from the other. Dysautonomia doesn't necessarily hit you all at once--my symptoms progressed over a number of years; your racing heart may just be the first sign of it. Before you go having surgery, which will chain you to a pacemaker for the rest of your life, try some dietary and other changes and see if they help. Give them a month or two.

My doctor didn't give me Adderall for POTS, but he now knows about it. Stimulants flood your system with adrenaline. There are two ways to look at it: (1) The extra adrenaline could aggravate the dysautonomia; excess of adrenaline is what causes a lot of the symptoms. (2) The extra adrenaline raises and stabilizes your blood pressure, which makes it unnecessary for your brain to flood your system with adrenaline to compensate for low blood pressure. If your adrenaline response is under control via diet and hydration, (2) seems more likely than (1). I'm just afraid of Adderall triggering panic attacks if I take it; maybe I should keep some Xanax on hand in case that happens. I'm not going to get anywhere being afraid; I have to try it. (But one class of drugs I am very sensitive to is opiates. About 40-60 minutes after taking Vicodin, I get very panicky. They're vasodiolators, so probably what's happening is that they're lowering my blood pressure, my brain senses it, and shoots in massive amounts of adrenaline to compensate. Opiates do not, of themselves, have any adrenaline-promoting actions.)

For the last three years, one of my biggest symptoms has been panic attacks. Those, however, are now under control; I've come to learn what foods, substances and states trigger them, and I carefully avoid all triggers. Before the panic, I took the ADD medication Adderall. It was wonderful for clearing away the mental fog and combatting the fatigue; and now I see that stimulants are also used to raise blood pressure and prevent blood pooling. My question: are stimulants dangerous at all to dysautonomics? I mean, more dangerous than to the general population? Panic was the reason I went off Adderall; but now that it's under control, I wonder if I'll be able to tolerate it again?