I Have Idiopathic Intracranial Hypertension

Its never good news when you're told you have a rare disease but getting diagnosed with IIH was a huge relief for me. It capped years of being called an attention and drug seeker and never being taken seriously by medical professionals. The disease is scarier on paper than it is in real life for me. I have been blessed that my illness is a lot less severe than most people I have met with it. My headaches are situational and not constant. My pain in other parts of my body have been controllable. Except extreme flares, I haven't been disabled by IIH. Pulsatile tinnitus is by far the most annoying symptom I get. Fortunately for me Diamox controls my symptoms but unfortunately hasn't controlled the progression of the papilledema. For now, surgery isn't being contemplated but I do need to lose a lot of weight. I consider myself lucky that the something that went wrong with my body was something that doesn't typically kill you. In that sense, I don't mind being 1 in 100,000.