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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cinnabunny 12/14/2015

Does anyone know what the symptoms are for low csf pressure? I've searched online and all I can get are complex text book answers and lots of info that says there's an obvious csf leak (which I don't have). I am on 2,000mg of Diamox and I just feel like it's taking its toll. I've been told that at my last opthalmology appt that my left eye is swollen and that I have lost a few optic fibers. She says its for the best that I'm on the high dose of Diamox for the sake of my eyes, but I'm wondering at what expense is it doing to my overall health? I'm tired all of time, depressed a lot, and constant full head aches and weird head feelings. I'm just wondering if I'm taking too much and wanted to get an opinion from people who have IIH.

cinnabunny 12/14/2015

I'm sorry the topic should say low CSF not IIH

mary1973 12/15/2015

Low pressure is ugly, uglier than the high pressure. If your body determines its too low the main symptom is worlds most terrible HA when sitting, standing, laying makes it better. Does this describe your issue?

cinnabunny 12/15/2015

Thank you, for answering. I do have headaches on occasion, for which I either have to lay down or take Tylenol and they just go away. But I wouldn't say they are unbearable headaches just sort of dull throbbing head aches. Which are transient. However, Sometime when I'm laying down I feel (and this will sound strange, which is why I haven't told my doctors) a rush of fluid in my nose. Nothing Leakes. But it is strange. I don't know if it's sinus related or not....

Sophiasmom06 12/16/2015

when my ICP begins to spike, I can feel pressure building in my nose. sort of like I'm becoming congested but it doesn't close off my nasal airways. I believe this is due to increased CSF absorption via the olfactory nerve coming down through the cribiform plate. we actually drain more CSF via the olfactory nerve than we do via the optic nerve. I know people who have described a sudden rush of something in this area or down the throat, followed by a sudden improvement in ICP symptoms.

if you do get fluid coming out of your nose, however, you should see your doc right away to rule out a CSF leak.

if these symptoms happen when you lay down, this is consistent with high ICP, not low.

pippiphurray 12/22/2015

I'm sorry you have having to go through that. I didn't know that lower was worse. Can they do something else to save your vision like the surgery so you don't have to take Diamox.

I'm trying my best to stay away from Diamox as long as possible. I prayed that there is a solution for you out there and for you to have some relief and for you to be able to reduce the Diamox.

standalittlerain 01/06/2016

My Dr. said that a all the same symptoms apply both to high and low so it is hard to judge the sweet spot for your personal best until you limit the symptoms. I am on Diamox to maintain. However I was experiencing a burning sensation that was extremely intense, akin the pain of Singles. The sensation was down the sides of my back (about a hands width away from my spine on both side the full length of my back). My Dr. said that was classic low CSF. Did the lumbar puncture and added ?? something to bring my level up.

pippiphurray 01/06/2016

UGH...low sounds worse than high! I had no idea they could even add cerebral fluid! Sorry :( !

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