Hello,
I’m a 24-year-old overweight male with a BMI of 37. At the end of 2021, I was first diagnosed with papilledema during a routine eye exam, even though I had no symptoms. It was present in both eyes, but more pronounced in my right eye. At the time, my doctor thought it was pseudopapilledema and told me not to worry.
About seven months later, I started experiencing brief blackouts with sudden movements. I was diagnosed then with true papilledema. An MRI confirmed that I had idiopathic intracranial hypertension (IIH) as well as venous sinus stenosis. I was treated for about two years with medication and diet changes, and after multiple follow-ups, my condition improved.
However, last June I began having visual disturbances again along with severe headaches, I had an LP which was with an opening pressure of 28. I also restarted taking acetazolamide (1 g daily).
My questions are:
Has anyone here fully recovered from IIH without recurrence?
Were there any additional tests (beyond eye exams, MRI, or MRV) that helped in your diagnosis or management, and that I should consider discussing with my neurologist?
Thank you.