No paps, but weird symptoms

IIH Symptoms

I’ve been trying to figure out what’s wrong with me for 14 years now. I’ll try to condense this: Migraines were aura started at age 21. Noticed vision and head problems at age 34. Visual snow, after images, tinnitus(high pitch has a rhythm but maybe not pulsatile?), head and ears feel full, have a hard time keeping my eyes fixated on one spot, need to sleep on incline or vision dark when waking and slight headache, don’t feel comfortable standing in place because balance is off and feel lightheaded often. Probably other things I’m forgetting.

When this first came on, I went to eye doctor and my optic nerve looked swollen in their photos. Got an MRI, saw a neurologist and had a lumbar puncture. Opening pressure 28 drained me to a 14. She thought I should get a shunt. I decided to see neuro ophthalmologist. They did high res scans and said there’s no swelling so no need for treatment. That all my issues are due to migraine. I’ve gone back a couple times and still no swelling but my symptoms have been persistent all these years.

I had an MRI last week due to phantom smells. It showed that I have empty sella. No idea if that showed on original MRI.

Is it possible that I have IIH without paps? I know 28 isn’t that high of OP but I felt so good for two days after they drained me to 14. I’m so tired of seeing neurologists and they say “it’s migraines, stop looking for another cause”

Posted Sep 14, 2026, 7:59 PM UTC

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