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ouchieeyes

Idiopathic Intracranial Hypertension/Pseudotumor Cerebri

Posted by @ouchieeyes in Just Want to Talk, Oct 17, 2011

Is there anyone out there who also suffers from IIH/PTC?? I was diagnosed just over a year ago and would love to share experiences with others who are experiencing the same condition!

Tags: headaches, eyes, brain, migraines, diamox

melissatbear likes this
milicamatic

Posted by @milicamatic, Oct 25, 2011

MY SON HAS SAME PROBLEM I'LIKE TOTALK TO YOU MY NAME IS MILLIE

ouchieeyes

Posted by @ouchieeyes, Oct 31, 2011

Hi MIllie, anytime you'd like to talk let me know. Sometimes it takes me a few days to check back in on things, but I will try to keep up. How old is your son?

melissatbear

Posted by @melissatbear, Nov 15, 2011

I came down with my symptoms on April 11 of this year. I was finally diagnosed on July 15th. Although I am on medicine at this time (currently 225 mg of topamax) i am still having little to no relief of my chronic daily headaches. I also have numbness and tingling in all of my extremities from before i started the meds that supposedly have nothing to do with my diagnosis. my job has suffered as well as my personal life. i would love to talk.

brenda60

Posted by @brenda60, Jun 2, 2013

Since 2002.... Living with this crazy disease ,,,,,I'm 52 years old, contact if u need to vent

tracyj

Posted by @tracyj, Sep 23, 2013

My 17 year old daughter was diagnosed in Feb. 2013 with IIH without Paplademia.. She has had 7 spinal taps since. LP's are the only headache relief she can get. Diamox didn't work and she is on Topamax. She is a Senior in high school and now is on homebound. This is a crazy disease. Her opening pressure was 22 last week but with 30ccs taken off the headache was gone. It is hard to watch her suffer so much. She has 20/20 vision but she is having problems reading due to the vision problems that she has. The Mayo Clinic confirmed her illness after her Neurologists in Atlanta said it was impossible because she doesn't have Paplademia.

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