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...
Sorry for my earlier post hit enter by accident...ooops!
Yesterday I went to see a neurologist for a 2nd opinion, not so much for my IH diagnosis, but more for the treatment of it. I went to a reputable neuro, at a great hospital in Boston. We went over my history and current treatment, and after my exam things completely caught me off guard. I was there with my notebook of questions about IH, shunts, meds, etc....and he wanted to talk about migraines.
I have had migraines in the past (or have I?) I was misdiagnosed with a 2 month migraine when I finally went to the ER and got a lumbar puncture with OP of 37, and got an IH diagnosis. I have been treated with IH for the past year, with Diamox from 500mg a day to 1000mg a day, with the addition of Lasix, and Amitriptyline. I've had 4 lumbar punctures with OP's in the mid to high 20's and awful headaches.
My life has changed dramatically in the past year. I had to take the second half of last school year off, because of pain. I wasn't able to drive, etc. I was able to go back to work this school year, but I still struggle with headaches on a weekly basis. Some headaches are completely tolerable and I can teach right through them, and other headaches leave me completely out of it, and crying.
Before my diagnosis last year I had tried every rescue migraine medicine from imitrex, relpax, maxalt, and nothing ever worked. This neurologist is convinced that I am suffering with Chronic Migraines and IH. He says that the headaches would be very difficult and even impossible to differentiate, but he would thinks the migraines should be treated before the IH.
I'm sooooo completely confused. Maybe there are some migraines thrown in there, but I'm pretty confident those are the headaches that I go to work with, and suck it up. It is the IH headaches that leave me unable to sleep, crying, and unable to work. Those are the headaches that only feel better after an LP. Wouldn't it be easier to deal with the disabling headaches first??
Sorry if I am rambling but I am so confused. I am wondering if anyone else has come across this diagnosis? and if you have any advice to give?
Thank you,
NicoleT
Yesterday I went to see a neurologist for a 2nd opinion, not so much for my IH diagnosis, but more for the treatment of it. I went to a reputable neuro, at a great hospital in Boston. We went over my history and current treatment, and after my exam things completely caught me off guard. I was there with my notebook of questions about IH, shunts, meds, etc....and he wanted to talk about migraines.
I have had migraines in the past (or have I?) I was misdiagnosed with a 2 month migraine when I finally went to the ER and got a lumbar puncture with OP of 37, and got an IH diagnosis. I have been treated with IH for the past year, with Diamox from 500mg a day to 1000mg a day, with the addition of Lasix, and Amitriptyline. I've had 4 lumbar punctures with OP's in the mid to high 20's and awful headaches.
My life has changed dramatically in the past year. I had to take the second half of last school year off, because of pain. I wasn't able to drive, etc. I was able to go back to work this school year, but I still struggle with headaches on a weekly basis. Some headaches are completely tolerable and I can teach right through them, and other headaches leave me completely out of it, and crying.
Before my diagnosis last year I had tried every rescue migraine medicine from imitrex, relpax, maxalt, and nothing ever worked. This neurologist is convinced that I am suffering with Chronic Migraines and IH. He says that the headaches would be very difficult and even impossible to differentiate, but he would thinks the migraines should be treated before the IH.
I'm sooooo completely confused. Maybe there are some migraines thrown in there, but I'm pretty confident those are the headaches that I go to work with, and suck it up. It is the IH headaches that leave me unable to sleep, crying, and unable to work. Those are the headaches that only feel better after an LP. Wouldn't it be easier to deal with the disabling headaches first??
Sorry if I am rambling but I am so confused. I am wondering if anyone else has come across this diagnosis? and if you have any advice to give?
Thank you,
NicoleT
I don't think they know what to do and are grasping at straws. Hope you find some relief soon.
Hope
Lara do you take both Diamox and Topamax? Do you mind me asking how much of both? I already feel so dopey with Diamox I'm afraid adding Topamax I might completely lose it!
Thanks Ladies!
Yes, I have migraines on top of the IH headaches. Both can be not so bad, or unbearable. My neuro was treating both at the same time. Now just the migraines because everything for the IH has so far has caused kidney stones so they won't let take the meds any more.