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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Diamox Side Effects?? I am so loopy!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Diamox Side Effects?? I am so loopy! › Reply To: Diamox Side Effects?? I am so loopy!

April 7, 2012 at 12:02 pm #1966
ourfullhouse
Participant

Try this link instead and let me know if it works: http://www.amazon.com/Bicarbonate-tablets-relieve-heartburn-antacid/dp/B002CPDF9E/ref=sr_1_1?ie=UTF8&qid=1333816857&sr=8-1

I’m not a doctor, but I would think your reaction to the toothpaste brought on the headache you experienced/are experiencing. Just because Diamox takes care of CSF headaches doesn’t mean you can’t get a headache for a different reason. So, don’t be too quick to judge the Diamox or drop it is what I am thinking. You need to do what you need to do, of course.

Do you have an epi pen? Sounds like you NEED one!

Pain meds don’t do much for migraines, it is the nature of the beast. For me, the best I can hope for is that pain meds help me not care as much or help me relax a bit/sleep, etc. Have you ever tried a high dose of caffeine when having a migraine to see if that helps? I have caffeine pills on hand as that seems to the the thing in Excedrin that really helps me with a true migraine (when/if I get one, which I don’t very often anymore).

I have been reading up this morning on hypoadrenergic POTS, since it is mentioned here on the forum a lot. My POTS has never been classified one way or another, but I’m now thinking mine is also the hypo form, or the combo version of PD and Hypo. I found a great website and am learning a lot about how my body does/doesn’t cope and how even when we think things are working/stable, one can wake up one day and those things no longer work, so it is a constant figuring out (the author calls it decoding) of how to get back to more stable again. Let’s hope this link will work: https://sites.google.com/site/hyperadrenergicpots/Home

Now, I have been thinking/hoping that the Diamox is the “cure” for my POTS, but I am now seeing that several symptoms are still there, even though several are gone/better. I can definitely see the effects of the excess adrenalin still happening, and then the crash that follows the next day. I would guess there is still a matter of time and healing even while taking Diamox. And, then the next pieces of the puzzle with the cytokines that Dr. Diana has explained in Part 2 of her theory, that will hopefully help too.

I would be curious to know what all other people are here are taking to treat their POTS, besides Diamox? Is anyone taking an anti-depressant to control the re-uptake of norepinephrine, and if so, which one?

It means a lot to me to have somewhere to “go” with other people who share this same crazy combination of illness/syndromes/genetic defects/whatever you want to call it, lol. Family and friends, as much as they want to listen and be helpful, just don’t understand.

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