- This topic has 1 reply, 1 voice, and was last updated 6 years, 11 months ago by .
- You must be logged in to reply to this topic.
I have been on Diamox for 2.5 years and have settled into taking 250 mg twice a day. I take a lot of bicarb tablets each day to keep my blood from getting too acidic. This dose keeps the horrendous feeling of my brain being skewered by my spine and keeps all but 2-3 migraines away each month (without Diamox I would have 20+ migraines per month). Things in this dept are stable and liveable.
My kidneys are suffering. I just had extensive kidney stone surgery 2 weeks ago. My kidneys were just full out stones. My left kidney had two 6+ CM size stones. My stones were not the kind that could be broken up by sound waves, so they had to all be lasered into smaller pieces and dragged out. It has been a very painful and slow recovery. At my 10 day post op appt. my urologist explained that both my kidneys have LOTS more stones in the mucosa just about to come through and that my stones are calcium phosphate. She says it is the diamox that is the biggest reason for the amount and size of stones and that I have got to stsop taking it or I am going to be having this surgery again and again and again.
Is there an alternative to Diamox that works similarly?
Hi ourfullhouse, You know that my kids and I have been needing to work with a urologist fairly closely, too, but we’re still in the clear. Did yours discuss going to the citrate forms of all of your supplements? HUGE help. It was almost as if going to potassium citrate eliminated my need for baking soda! We also put ‘ion drops’ in our beverages, and as silly as this sounds, the best thing we’ve done is put (fresh) lemon juice in our water every day. Will you see what your doctor thinks? I have not needed baking soda for weeks now that I’ve done that (knock on wood!). 🙂 Oh, some of the intracranial pressure folks may be good ones to ask, as most of them deal with the same things (discussed on their facebook groups).
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. 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.”
-- Chris Gross