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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/ Pseudotumor Cerebri Support Group

Headaches back.....

april4688
april4688
Hey all so i havent been on here in a while..i guess i was doing well and was pain free for a bit so i was enjoying it. so here is the story about 3 months ago my diamox was uped to 3x a day so a total of 1500mg a day..well i had a very hard time remembering that middle pill and just decided to stick with two since i was feeling so much better i mean i was not having any headaches at all. then about 1 month ago my headaches started to return, for the first two weeks it was maybe evey other day but then BAM everyday they were there as soon as i would wake up. so at my neuro appointment about 2 weeks ago we made sure i would take my 3 pills a day (and i am doing very good with it have taken 3 everyday since then) and they had me get an MRI (about damn time) so my MRI came back clean THANK GOD!! now i am still having my headaches my eyes kill me at times, and they said that if the MRI came back clean and i was still having my headaches then i would have to get a LP(spinal tap). which is fine i really dont mind them. but my question is that if i have my lp and my pressure is up again what might be the next step????
deleted_user
deleted_user
Hi April,

I am sorry that you are going through this.
Give the extra Diamox some time to work. Be sure to decrease your in-take of sodium. I am all for the natural route before anything else.

Good luck and please keep us posted.

Angela
april4688
april4688
I am gonna give the diamox some time but it just seems like its not working at all..i really feel like my body got use to it and now it has no affect. My neuro. seems to be quite out of the loop since they still call it pseudotumor cerebri!! Just kind of wondering what to expect next.
deleted_user
deleted_user
Actually, Pseudotumor Cerebri Syndrome, I have been reading, is a correct term. Whether he calls it that or IH, as long as he treats it correctly and you feel in good hands....

Perhaps you need to schedule an appointment to tell him that your pressure is up. I have an agreement with my neuro: i told him that I will call when it is absolutely necessary. He takes me calls and sees me every time. This is usually when my pressure goes up and all I can do is cry.

Do not let the office staff put you off---tell them you are in pain.

Let me know how this goes.
Cath278
Cath278
April, When I was in hospital a few weeks ago, to have the lp done, the kept referring to it as Benign idiopathic Hypertension! And! its a bloody teaching hospital!

Angela, while I agree with you ( as always!) I do wonder at the terminology used. Does it indicate that was the last time they read up on the condition? Way back to before its name was revised? Cath.
april4688
april4688
They know that my pressure is most likley up again due to the fact that my headaches are back all of the sudden. They havent added any other meds for me to take its just the diamox...so here is another question..if in fact the diamox has stopped working for me is there another medication that i can take instead of diamox that will do what the diamox does? Im just trying to get a heads up on what maybe ahead of me if my op comes back high.