A two-year struggle with IIH

By Diana, Idiopathic intracranial hypertension, Canada, March 1, 2018

I woke up one night with the worst headache of my life, and it never went away. It took me 10 months to get an appointment with a neurologist. It took another 3 months to be diagnosed with Idiopathic Intracranial Hypertension and to begin treatment with Diamox, which left me feeling worse and with a number of adverse effects, including cyanosis of extremities. My papilledema has gone down but I am left with permanent blurry vision. 

Two years later, here I am still with the same symptoms. Nausea, vomiting, dizziness, loss of balance, diagnosed with s-bppv as well, and non-stop pain in my head that is resistant to everything. I can't function like a normal person on a daily  basis. I have stopped working. I am in the process of applying for disability. Life has never been the same, and it's difficult to deal with symptoms and having people not believe me because "you don't look sick". I still feel like I am misunderstood, that no one really cares, and that there isn't appropriate treatment out there for this condition because no one can pinpoint a cause.

I am 1 in 100,000, but I certainly don't feel special.

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