Caffeine

[misstraci]

I guess we are all so different. Our diagnosis, treatments, and all the things that help and hurt us. I am so glad that caffeine is helpful to a lot of you!!! Thanks again everyone for sharing your answers and stories with me.

[Troy]

When I first damaged my Autonomic Nervous System following a recreational drug overdose, I hadn't fully developed POTS yet but I had all these other weird symtoms consisting of severe chemical sensitivity and ongoing fevers so I substituted the recreational drugs like methamphetamine and ectacy which I used to take in rave clubs and began to drink up to 5 cans of Red Bull per night instead and continuing to go to clubs at which point I suddenly developed full blown POTS and worsened my other Dysautonomia symtoms so ever since then I have been put off by the idea of caffeine as it was contained in the Red Bulls cans I drank following up to my full onset of POTS.

[Dizzysillyak]

I'm not sure if this has been said here or not .. This is how caffeine works on everyone.

http://science.howstuffworks.com/caffeine.htm

I gave it up a few months ago and noticed an improvement right away in my energy level. It's funny, here I was using caffeine to boost my energy when in fact all it did was boost it for a few minutes and lead to an even bigger crash later ... duh ... lol ...

Caffeine also causes certain cells to lose calcium. Googling caffeine and calcium will get you articles on this. FWIW. I read that it's not the quantity it's where it's lost that's important ...

It's poison, I tell you, it's poison ... lol ... hth ... dizzy

[ramakentesh]

It helps me BIG time. My specialist told me there is recent research to show it helps with POTS and told me to take 500mg a day. I don't take quite as much as that but since taking around 300mg a day, I have had more energy and been able to do more, it has stopped the heavy dragging feeling from my chest downwards and even helped my breathing when I do anything physically

These are the kinds of blanket statements that concern me. There are no published studies on the use of caffeine to treat POTS. POTS is a group of disorders, not just one, some with pathophysiology that are opposites - so to say that caffeine helps all POTS patients is ridiculous to be honest.

If a patient had pooling in their extremities then sure it may help either through improving peripheral vasoconstriction or improving A1 activity, but others have excessive vasoconstriction and reduced blood flow, sympathetic excess and or parasympathetic withdrawal and for these patients it would be like putting gasoline on a fire LOL.

[MomtoGiuliana]

Thanks Ramakentesh. Great point. And in fact my POTS dr has told me to eliminate caffeine since I reported that I seem to get extra palpatations with it.

[kayjay]

Coffee is too much for me these days. I drink small amounts of green tea sometimes. It has less caffeine but can give me a little boost without palpitations. Funny I used to drink coffe every morning when I was teaching but after my last big flare up I lost interest in it.

[futurehope]

I use chocolate, in moderate doses, as my caffeine source. FWIW, I'm noticing that the garbagy chocolate candies, icings, and cake mixes, dessert toppings, with the hydrogenated oils, (and who knows what else), do not agree with me, but if I eat a chocolate Clif "Builder's Bar" (organic, natural, no hydrogenated stuff), I'm fine. So, the source of the chocolate makes a difference.

Once in a while, I'll down a coke, but not as a regular habit. I could never handle the caffeine in a cup of coffee. I tend to avoid teas.

For me, the source of the caffeine makes all the difference. And who would have thought that the chocolate in a Clif Builder's Bar is okay for me, yet chocolate in candy, or dessert topping, or pudding mix, is not?