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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<br />1. 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.<br />AND, my favorite:<br />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!<br /><br />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! 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