PSEUDOTUMOR CEREBRI
PseudoTumor Cerebri has consumed my life since May 28, hydro and fioricet and feeling sickly. I've had peripheral neuropathy since may everyday as well. Could it be related. My FIBRO is being handled by the lyrica and the PN for the most part. But when my pain and fever starts at the base of my skull oh man. Im doing alot of praying. I have the imitrex in the house if this turns toward a sick migraine but for now its just a sick headache. I have a appt on the 28th with a new neurologist but this waiting for managed care sucks. I guess Im lucky. I envision a cripple laying on the dessert floor outside a house that can not walk and no one to help. My doctor canceled knee replacement when my PN showed up and I haven't even went back to discuss it since the PTC showed up. God give me strength. I can't walked very well and I am so sick...
Replies
First and foremost, I\'m so sorry you are suffering the way you are. I can empathize with you completely. I\'ve had headaches all my life. I am 43 yrs. old and I remember having them when I was 2, so they said I probably had them before that. I was diagnosed with PTC in May of this year. I\'ve had 6 spinal taps since then. Every time, my opening pressures were way too high. I\'ve had so many tests done, it\'s just crazy, but they were all necessary. They helped to rule out and diagnose the PTC. I also have a couple of other issues that I was not aware of that no one bothered to tell me about. I have been in and out of hospitals since I was 17 for headaches and stomach issues, due to vomiting excessively. The headaches are just unbearable. My husband has to put a heavy blanket over our bedroom window for me wherever we have lived and he\'s always kept our children quiet. (They\'re adults now.) I have aura, sensitivity to light/sound, dizziness, vertigo, blurred vision, double vision, nausea/vomiting, light-headed, slight tremors, occasional slurred speech, etc. The list goes on. Have you seen a neuro-ophthalmologist yet? Who diagnosed you with the Pseudotumor Cerebri? What tests did you have done? All of this is pertinent info to helping you get to the right person to treat you and get to the bottom of your problems. If left untreated too long, you could possibly lose your vision. Let me know. I\'d like to help as much as I\'m able. I, myself, am still dealing with a lot. I am in the process of deciding whether or not to have a shunt put in. I\'ve been on Diamox since May. I\'m also on Topomax now. I\'ve lost a little over 50 lbs. I\'ve been anorexic since I was 12. I used to be way too thin and I truly look anorexic for years. Right now, I am overweight, so people think I\'m joking when I say I am anorexic. But if you saw the way my eating habits are, you would certainly agree. At times, I go all day without eating a bite. I get yelled at by my mother to this day. My husband calls me from work to make sure I\'ve eaten. My problem is lack of exercise, due to my constant headaches and dizziness. It\'s hard to exercise when you feel like you\'re falling every time you try to walk a few steps or doing any other kind of activity. Anyway, I\'m going on too much about myself. I hope I helped in some way. Take care.