Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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I Want A New Drug

spectacularone
spectacularone
My headaches are the kind that you get behind your eyeball (the optic nerve is swollen type). They are so severe I cannot function outside of a dark room. So, I took one of my husband's Gabapentin (Generic Nerontin) and OMG--I felt better than I've felt in 9 months. I would be so happy to have a non-narcotic option to take for these blinding headaches.

Has anyone else found relief from this. My husband takes it for nerve pain. I never thought to take it. But, if my headaches truly originate from a nerve (optic nerve) then am I crazy to think they might help my pain? Can I convince my neuro to prescribe me some?

Of course I'm on diamox and topamax too for background info.
deleted_user
deleted_user
They gave my daughter Nerontin after she had her LP shunt removed and meningitis. She absolutely loved it, it took away her eye pain too, first time in ages! Unfortunately, they would not keep her on it long term, it's also used for seizure disorders like Topamax. Wonder why seizure meds work for this condition?
deleted_user
deleted_user
I never had seizures until I was diagnosed with this and put on Topamax....go figure...so now I just take the Diamox.

Keep us update on what your neuro says I would be curious to see....I am so tired of having a headache and my eyes hurting every day.
deleted_user
deleted_user
I don't take any pain meds right now but I heard from a reliable source that some hospitals are actually giving an injection of Octreotide in the ER for a severe IIH headache now . I don't know anything more about it though .
deleted_user
deleted_user
My neuro prescribed Neurontin to try to help with my symptoms. I honestly was on so many meds at the time that I don't know that it helped with my eye/head pain as it was still (and remains pretty rough).

Since I've had my LP shunt for a little over a month, she's taken me off it on a regular basis and now I just take it for nerve pain in my back, legs, etc as needed. It does help with that.
Cath278
Cath278
As we are talking about "strange " meds that work; When I first became sick, they thought I had a different illness, one that is treated with steroids. I was on 60mgs daily and with hours of taking it, headache and eye pain gone!Pity it has such a high price to pay! It worked a treat. Cath.