Diamox can be used to lower intracranial pressure in folks with IIH and hydrocephalus allowing many to avoid brain shunts (and many patients with EDS can avoid neck fusions and Chiari surgery! The use of Diamox can be tricky — let’s chat about that!
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.
Diamox can be used to lower intracranial pressure in folks with IIH and hydrocephalus allowing many to avoid brain shunts (and many patients with EDS can avoid neck fusions and Chiari surgery! The use of Diamox can be tricky — let’s chat about that!
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โDr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.โ
-- Chris Gross
Dear Dr. Diana, I just posted and forgot to say that I got a horrendous pressure headache the day a vaccuum cleaner fell on my head from two steps above me on the stairway. The headache has never gone away. The MRI was normal and the headache did not stop until that night when I laid down and it was awful. I have always had EDS and POTS and MCAD….this bash on the head made my MCAD so much worse. They say that my C1 and C2 are off now. When I am “worked on” they are just looking for… Read more »
Could you please give a range of doses that are typically effective? I know from the book a probably lower range (the sensitive beginning dose) but how high have some people had to go to find their dose? Is there an upper range in your experience?
Hi Emily, Although everyone truly is different, an average can range from about 125mg to 1,000mg per day. ๐
Also, during an eye exam, is there an easy way for the doctor to assess for high ICP?
It would seem that if excess sodium is irritating and contributes to autoimmune disease and potassium is necessary anyway due to wasting as a result of Diamox, it would make sense to use the potassium form of bicarbonate. Could you please explain the rationale for recommending sodium bicarbonate instead of potassium bicarbonate to raise alkalinity? Thanks!
Hi Emily, Yes! We find clinically that potassium bicarbonate is rough on the GI tract, and our patients have done better with sodium bicarbonate. We even tried a combination of both, but keep returning to potassium bicarbonate. I know everyone is different, but we see this over and over again in the clinic! ๐
You wrote “We even tried a combination of both, but keep returning to potassium bicarbonate.” Just want to double check that you meant sodium bicarb, not potassium? Thanks!
Yes! ๐