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Hi There,
I was able to get a hold of Diamox and was very excited to try it as I have had a headache since age 11 and am now 28. I took my first dose last night (125 mg), one this morning (62.5) and one this afternoon (62.5). I am sad to say nothing happened! I don’t feel worse, just same old.Some details – I have Classical EDS & Hyper POTS, Dural ectasia, slightly enlarged aortic root, platelet dysfunction, Raynauds, and did have Lymes 3 years ago. MRI’s come back normal, however no one other than a random Neuro has looked at them.
I am so sure my headache is from high pressure: it is worse with positional changes, worst lying down, worse with vasalva maneuvers and turning my head to the side, I can often feel my pulse pounding in my head and ears. It is however all over my head and can be worst anywhere, not always at the base of head/neck but I do have pain there.
I have not had blood panels done yet but since I only started it yesterday can’t imagine I’m too acidic. I am currently on no other meds except birth control. Do you think I should try a lower dose, baking soda tabs, or both? Thank you,
Liz
This reminds me of one of the patients in one of our clinical trials. We suspected high intracranial pressure (and she had a lumbar puncture that confirmed it). Her doctor gave her Diamox and she said it “didn’t work” and made her “sicker”. Yikes. When I asked her how she felt when she was on it, her symptoms were those of severe acidosis. We encouraged her to check her CO2 levels, and indeed, it was 15 (severely acidic) — this was without Diamox! I explain all of this in the “Diamox Pearls” section of the book. I wonder if it would help you? I also experienced very high pressure once (after an infection) and Diamox didn’t seem to touch it for a while. As the inflammation went down, my pressure went down, and Diamox was effective again. Eventually, I didn’t need Diamox any more (thank goodness I didn’t get a shunt). :)_
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