Intracranial Hypertension
Benign surprise
My story is one of being very fortunate. I started noticing zigzag floaters in my vision- they progressively got worse over a year's time. One day at work I was looking down the hospital hallway & all I saw was these zigzag floaters & decided I needed to see my optometrist. I went to the optometrist just thinking it would be a simple explanation & she told me both my optic nerves were severely swollen & I needed to see a neuro-opthamalogist in Iowa City- 2 hrs from my town. I knew from my medical knowledge that this was not a good diagnosis & after investigating over the Web, I made a local ophthalmology appt. He verified the swelling & sent me for a STAT brain MRI on a Friday night. After a long & scarey weekend of no results, I decided if I had a brain tumor they would have called me immediately. On Monday I was told it was probably Pseudo tumor cerebri- what the heck was that?! I set an appt up with a neurologist, had an LP in the office & the pressure of my spinal fluid verified it. He started me on Acetazolamide & symptoms resolved very quickly & over a year period my optic nerve swelling had disappeared. In 2016 I experimented with decreasing my dose in half for 6mths. A few floaters returned with a new symptom of postural dizziness. Minimal optic nerve swelling returned & I restarted my full dose of acetazolamide again. I have since had a full resolution of symptoms. My old ophthalmologist always insisted that the floaters were unrelated & were optic migraines, though I have never had them any other time & never had headaches(which is rare with IIH).
My story is a very fortunate one & I have never been 'crippled' by my diagnosis. I do live with the knowledge that it could change at any point in my life & I could be affected by blindness. I do understand how it has affected & impacted others in daily life. Be diligent with your meds, health & follow up appts. I hope my story can give hope or guidance to someone.
Find people with Intracranial Hypertension through the map. Connect with them and share experiences. Join the Intracranial Hypertension community.