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...
So, after a year of doing well and being stable, I've had a little setback. As I posted a couple of weeks ago, I started having more frequent and more severe headaches. Since my HAs are usually infrequent and mild, the doctor assumed that my pressure was high and upped my diamox dosage from 1000 to 1500. Shortly afterwards I started having the visual disturbances again. Went to the optho today who confirmed that my paps are back, but are mild at this point. Hoping that the increase in diamox will take care of it, but waiting to hear back from my neuro about whether he wants to do another LP.
Had another doozy of a headache last night. This sucks. How could I be doing so well for so long and then bam in a matter of 2 weeks I'm back to where I started? Kinda bummed.
Had another doozy of a headache last night. This sucks. How could I be doing so well for so long and then bam in a matter of 2 weeks I'm back to where I started? Kinda bummed.
I am so sorry to hear this, especially after a year of feeling better. Hope the Diamox works and you'll be feeling better soon!
btw what does paps actually stand for? Papillary edema? pressure?
Nancy
Finally had to agree to an lp to find my pressure is still sky high, well at 32 with a working shunt I call that sky high.
Then, in May, saw Optht and he said paps gone from right eye and left healing. move up to the last two weeks, and I have all the problems of before, vision wise.Blurry all the time, seeing trailers all the time etc. I am so pissed off with it all! I think I was doing better when I wasn't taking Diamox!
I think, like me, you will have to have another lp. Its good in a way as there is no more guessing, its a plane cold fact .
Hopefully, it will only be a matter of tweaking the Dioamx a bit , as you have responded so well to before. I have never had much luck with it.
Try not to despair JT, maybe its just a hiccup.
Keep in mind that it has worked for you in the past,and will again.Big sympathetic hugs to you! Cath.
I don't know what takes a bigger toll on me the actual effects of this disease or the major anxiety that it gives me. It really is torture to the soul.