Anyone with PsuedoTumor Cerebri/Intercrannial Hypertention

[Nanna527]

Looking for others with PsuedoTumor Cerebri or it's called Intercranial Hypertention -- just to have someone else to share info with. I also have FMS, Sciatica, IBS, TMJ just to name a few. So if you're out there with this condition just drop me a post.

Thanks
Nanna

[Brenlou74]

How long was the recovery after the VP shunt was placed?  I have found that Topomax is really helping decrease the intensity and the occurences of the headaches.

[hkbl77]

I too have PTC. I was diagnosed when I was 3 months pregnant with my second child. That was 5 years ago. I am 31 now and I have 3 beautiful children. During my pregnancy, I endured all the trial and errors of medications and spinal taps and lumbar puntures. Nothing was working. I was at my wits end with it all. Finally, when my child was 3 and have months old, I asked my doctor what was the final thing for him to do in order to fix me....I was tired of all the drugs and pokes and prods...so he said SURGERY!!! I said let's do it. The next day I was admitted to the hospital and 3 days later I had a VP shunt put in...his name is Dr. John Porter out of Winston-Salem, NC and he is the best. Since then, I have had only a couple migranes but through continuation of medical treatment and yes still drugs at least the PTC is under control and YES I did have another child two and half years later and she was healthy. They just kept a closer watch on me during the pregnancy and of course during labor. Of course PTC is not the only disease I have, of that I have, epilepsy, hypothyroidism, restless leg syndrome, DVT (deep vein thrombosis) and pulminary embolism. My motto is "Live for the day, Be thankful you woke up and breathed" If anyone has any questions feel free to ask and if I dont know them then I wil surely find out the answers, although, not too much I dont know medically wise, I have been in the medical field for over 12 years....lol.

[Brenlou74]

I also have PTC.  I was diagnosed early this year, 34 years old and overweight.  I lost some weight and the headaches stopped but it was also at the same time as my LP.  Weight is still off but headaches are back (my optic nerves are involved and swollen).  I am trying to find a neurologist because mine is a quack!!

[medchick0523]

Hey there!! I have PTC/IH... for just about two years, diagnosed in October of 06 when I was 19. I have a rather non-textbook case of IH. I fit the typical profile though... overweight young-middle aged female. I do not have any eye problems, no optic nerve involvement. I don't have a shunt, back in May though I did have a temporary ICP monitor, which showed my pressures have stabilized, one doctor thinks I'm in remission, one thinks we just caught the PTC early, and the other just doesn't know what to do.

IH by itself is hard enough to deal with, I can't imagine how you do it with all of your other conditions.

Take Care!!