Relief!!!
Not officially diagnosed yet.
While IIH isnt something to be taken lightly, I am just relieved to finally be on my way to an answer. Topiramate is actively changing my life for the better so far.
It all started with roaring tinitus in one ear and light visual disturbances. ENT believed it was Meniers disease. It wasnt. Ophthalmologist saw no sign of retinal detachment or swelling or reoccurring tumors (i had retinoblastoma). No thyroid issues. No blood pressure issues.
Visual disturbances have only been getting worse and worse. Heavy static, total blackouts, blind spots that last for weeks, flashes, etc. And headaches that are so debilitating. But no sign of migraines or absent siezures in tests.
Finally, my neuro decides to try topiramate. And ever since I have had no headache at all, my eyes are slowly improving. My ear is so sometimes quiet I can barely hear it at all. Weight loss in helping as well.
I havent felt this good in so many months. And I have hope for the future now. I believe tbis can be manageable! I can not eben begin to explain how relived I am, as strange as that may sound.