I have it! lol it sucks. i m a freshman and like nobody understands the **** i go through. I dont know how i got it or anything. Its where your body thinks it has a brain tumor and produces more cerebral spinal fluid. I have had 4 spinal taps, to relieve the pressure. Basically to sum this all up i have a super bad headache that never goes away alllll the time, and my eyes get huge dilated sometimes. For most people after the pressure is relieved your head feels soo much better, but not for me. Please feel free to contact me. I know alot about this and will be glad to help. I kinda feel better knowing someone else has this besides me! -Abbey
I was just diagnosed with this also. I start Diamox today. I had a tap done, my opening pressure was 37 and it was supposed to be under 20. I am very scared of going blind since I have had a lot of vision problems due to this. Report Abuse
Hi to both of you, and welcome to the not-so-cool club! I was diagnosed back in June 2009, have been on Diamox ever since and had one surgery due to this disease. There are two places on the internet that I found EXTREMELY helpful
ReplyDelete1. ihrfoundation.org - The Intracranial Hypertension Research Foundation website that can answer a TON of your questions about this disease and also help you stay up to date with whatever research is being done right now.
AND, my favorite:
2. dailystrength.org - There is a Psuedo Tumor Cerebri group there with a whole bunch of us (from all over the place)!! I felt just like you when I found out how rare this disease was (I had never heard of it and neither had some of my doctors in the hospital!!), but the Daily Strength group has been awesome. A great place to introduce yourself, ask about symptoms, treatments and sometimes, just vent!
Remember this; take each day one at a time and be grateful that you at least know what is causing the headaches - hopefuly one day a cure will be found! Also, from personal experience, DON'T mess around with your sight - if you are having issues find a nuero-opthamologist right away and have him/her monitor you regularly! Our eyes don't feel pain, the only way they can "tell us" something is wrong is by showing us things.
Hope that helps! Good luck.