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Brain & Nervous System | Last Active: Aug 12 8:43am | Replies (156)
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I seen an optomologist and he said there is no optic nerve damage. Should I worry about intercaranial pressure then??? Or no?? I was told if there is no damage to the optical nerve then there should be no intercaranial pressure
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@tammyjbell
Locate a neuro-ophthalmologist who has knowledge of, and experience with, the diorder Idiopathic Intracranial Hypertension. If you you ASK him/her the anser is "no", then move on. I had a neuro-ophthalmogist for about 5 years who had no idea what was causing my acute optic neuritis and 4th nerve palsy, among many other problems. Pretty intelligent guy but arrogant, hubristic, with a God complex, so he did not reach out to colleagues to get expansion on just was was happening to my left eye. So I LEFT him, and did the same with the ophthalmologist from the same medical group, since he was not attentive to my complaints of pain within the eyeballs, the horrid sensation of having something PUSHING my orbits FORWARD, out of the sockets, the exTreme tenderness if touched, the burning sensation that was NOT relieved by eyE drops, the nerve pain electrifying within my temples and up to my brain, encircling the entire head...and so much more. I would be told "...evidently not using enough moisturizing drops..." and told me to just rest my eyes and take a pain killer...but the only pain med that my demyelinating CNS tolerated was Aleve. It did help a bit, along with warm compresses applied to ENTIRE face, with very warm cotton pads on each eyeball...and relaxation imagery, lying down in a silent, darkened room. There's a lot more to my journey, but fast tracking to today, August 11, 2026: I have an amazing neuro-ophthalmologist who is also board certified as a neurologist, and has done studies and published work on the topic of the very problems that I'm facing...and an ophthalmologist who ALSO is educated in the issues with IIH and the precise problems that I'm dealing with. Makes a HUGE difference when the doctors treating you BELIEVE what you tell them, and they know how to help you.
Check with your state organizations to see if you can find a site where you can locate neuro-ophthalmologists. They are like unicorns: very few in any given geographical area.
I hope you have success in finding one. Please let me know about your search.