Hello,
I am new here, but I was hoping y'all might be able to share your wisdom with me. I started diamox at 1000mgs. After about a month and a half, I was moved up to 2000mgs. Another month and a half goes by and they want me to move up to 3000mgs a day. While I am willing to do almost anything to make the pain stop, I am worried over the side affects. I have the tingling... everywhere, along with muscle cramps, severe depression and back pain that I am pretty sure is kidney related. I understand why they are moving me up, I got some relief for a little while when I moved up to 2000mgs, but the 3000mgs just seems like a lot. She even mentioned that she could even move me to 4000mgs a day if need be. I guess I am just trying to figure out when enough is enough and when to start asking about other meds. Any advice? Thank you so much for the help!

Erica, I'm sorry to hear the Diamox side effects are getting to you! I wasn't able to tolerate them in higher doses, but some members have found the side effects eventually subside and are tolerable. The typical dose is 1000-2000mg/day, but they can go up to 3000-4000mg. If you have any doubts or concerns, I would discuss them with your physician and talk about other options. They should at least be doing routine blood work to check kidneys, potassium, etc. Maybe that will at least put your mind at ease and the side effects will get better over time. If not, I would explore other options. Honestly, it varies from person to person, so you have to decide when you've had enough.

Hang in there!!!
 

Hi Erica and welcome to our support group forums. I understand your reluctance and concerns about the dosage of Diamox, and the doses can be quite high. If you are having a problem tolerating the Diamox and it's side effects to the point it's becoming unbearable, don't be afraid to tell your doctor and explore trying another medication. Unfortunately all the medications for IIH have side effects which some people can tolerate, others can't. Sometimes the side effects can dissipate but this doesn't happen for everybody.