Intracranial Hypertention Community Group

This is discussion group for those who have been or know someone who has been diagnosed with Intracranial Hypertention.

0 Online

deleted_user 12/02/2009

I have had iih for 3 years now but only diagnosed 7 months ago. Let me tell you it has been hell. Doc prescribed diamox and has been working fairly good up until now. As i ended up quite depressed so have been taking escitalopram but now i feel diamox isnt doing as well as it was. Starting to get the thumping noises in my ears again and pressure behind my eyes. Does anyone else here take diamox and is on an anti depressant aswell? i am getting desperate here as there doesnt seem to be any doctor in my town that understands iih. If anyone has any info it would be much appreciated. Thank you

deleted_user 05/18/2011

Above everything else you ned to find a doctor who understands IIH. Personally I have to travel about 50 miles to my neurologist but it has made a huge difference. I spent 3 years with a Doc who didn't understand it well and I got worse wit every passing month. Now I at least have stabilized. But those 3 years cost me dearly and now I am facing Shunt surgery.

deleted_user 07/25/2011

i have a dear friend who suffers from these symptoms. she does take diamox, but it is now not helping. she has been through many tests time and time again.. and with results that shoiw nothing. she has suffered for the last 3 years, with her headaches and vision becoming more worse and lasting longer periods of time. I want to be as much support for her as i can, she has gotten to the point where she refuses to do any more tests, because she gets her hopes up everytime just to be told the drs can find no true cause, their only theory is an inflammed blood vessel that holds the spinal fluid which causes it to build and push against her skull. they tell her it is inoperable and she may be facing a port to be applied by December. my heart goes out to her, because i see it daily firsthand

canamerica88 11/26/2011

Sometimes Diamox really doesn't help. They started me on a low low dose of it, only 750mg, and when that didn't work, they upped me to 1500mg...it hasn't relieved any of my symptoms. So far the only half working thing is an LP, but thats only for about a day.
And it's hard to find a reason for the IIH. No answers has got to be the most frustrating part.

Join the Conversation