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...
My headache and the tinnitus is 24/7 non-stop for about 18 months now, nothing has helped. My neurologist is wanting me to get a LP shunt but I am just really against it after doing all my research and meeting with the actual neurosurgeon who also didn't seem to think it would do me all that good, cause my papilledema has been stable (it's not 100% better but way better than it was) for quite some time, so vision wise I am okay, it's just these darn headaches!!
At my last visit to my neurologist they said I might have occipital neuralgia along with the IIH, so I got a nerve block, but it only last about 2 hours and it was hard to tell if it helped or not. It just made me feel "different". I am waiting on an MRI of my spine in December so that may tell more.
But in the mean time my Dr. says since I am being a pain about the LP shunt we could try Botox. My insurance does NOT cover this, so I would be paying for it myself, so I have been going back and forth on whether to do it or not, because it is going to be at least $600, and I am a university student so not super rich lol, but if there is a chance it could help me I want to do it. I was wondering if anyone has any experiences with it? If the pressure causing the headaches is under the skull, how would injecting the botox on top help?
At my last visit to my neurologist they said I might have occipital neuralgia along with the IIH, so I got a nerve block, but it only last about 2 hours and it was hard to tell if it helped or not. It just made me feel "different". I am waiting on an MRI of my spine in December so that may tell more.
But in the mean time my Dr. says since I am being a pain about the LP shunt we could try Botox. My insurance does NOT cover this, so I would be paying for it myself, so I have been going back and forth on whether to do it or not, because it is going to be at least $600, and I am a university student so not super rich lol, but if there is a chance it could help me I want to do it. I was wondering if anyone has any experiences with it? If the pressure causing the headaches is under the skull, how would injecting the botox on top help?
Over the months I have also been given Lasix, prednisone, bumetanide, spironolactone, and indomethacin on top of the diamox and topamax and none of them relieved the headaches. I have also lost 92 pounds, so weight is not a factor anymore.
Maybe you could try this too? It's a preventative, so it won't work right away, but after several weeks it could help? Just a thought, I know I would try everything under the sun too before I considered a shunt.
As for Botox, sorry I'm not familiar with how it works. I've seen doctors inject it in those with migraines, but I'm unfamiliar with the success.
You should know that It is rare that on the first round of injections a person feels better, it usually takes until the second or third round of injections (which are scheduled 3 months apart) to see if it helped (it took until my third round of injections to get any relief).
The Botox paralyzes (actually makes them less tense because it is such a low dose) your muscles so that eases the strain on the nerves which might help reduce or relieve your symptoms (it won't cure your IH).
I still had to get a VP shunt to reduce my papilla edema and am waiting to see if it will help my headaches even more!
Good luck and God Bless, :) Jazzy