Story about Intracranial Hypertension .

Benign surprise

Feb 22, 2017

By: Sarah


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. 

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Is Intracranial Hypertension contagious?

Is Intracranial Hypertension contagious?

ICD9 and ICD10 codes of Intracranial Hypertension

ICD10 code of Intracranial Hypertension and ICD9 code

Couple and Intracranial Hypertension

Is it easy to find a partner and/or maintain relationship when you hav...

Latest progress of Intracranial Hypertension

What are the latest advances in Intracranial Hypertension?

Do I have Intracranial Hypertension?

How do I know if I have Intracranial Hypertension?

Intracranial Hypertension treatments

What are the best treatments for Intracranial Hypertension?

Celebrities with Intracranial Hypertension

Celebrities with Intracranial Hypertension

Is Intracranial Hypertension hereditary?

Is Intracranial Hypertension hereditary?