just wondering if anyone else has this finding.
They told me it was Graves ophthalmopathy that made my eyes bug out - proptosis, but in retrospect I started developing the symptoms of IIH only 8 months before my eyes started swelling (daily headaches, brain fog, dizziness on tilting my head). and the worst symptom I had was eye pain and it always got better with prednisone, which is the only medication that helps my IIH now. and on CT scan the eye muscles were not enlarged, which is usually what you see in Graves. I found a few references to proptosis developing rarely in IIH. I wonder if this is what protected me from developing papilledema; that somehow my eye anatomy allowed the pressure to push my eyes out rather than impacting on my optic nerve. it's still not pretty either way.

does anyone else have proptosis?

thanks,
Deb

I was fascinated to see this! I was just getting ready to take my 25 year old daughter with IIH to doctor because I thought her eyes looked like that. She was diagnosised in Feb this year, but had to have surgery for shunt in July as her pressure was so high, and her eye sight was deterioriating. She is much better after the surgery, but her eyes started to "bug out." Let me know what you find out...

I asked my ophtho at my recent appt and he doesn't think it's related. I honestly think they don't have a clue. well, if your daughter has proptosis and they don't think it's caused by IIH, then she ought to be tested for Graves disease or other things that can cause proptosis. you might have a better chance with her presentation to find an ophtho who will say it IS caused by the IIH. do let me know what you find out! and thanks for posting about it!
Deb