Today, I went to my neurosurg appt. It actually went very well! I like him and we have a good plan. But I found out that in my city of about 100,000 people, there are just around 20 or so people with this condition!!! God I feel small and isolated!! I know it is still a "rare disease" but I guess since talking with all the online communities I felt like there were so many of us. I am very gratefull that we now have the technology to connect and communicate with people everywhere. And realize we are not alone. I live here in Billings, MT. Supposedly it is the biggest city within about 4 states ( ND, SD, MT, WY). If any one knows anybody around by me, please let me know!! I want to connect with others local too!! And I want to all for being here. I am glad that I can lend and ear and know that there are others there for me as well.!!

hi; I suspect that it's not as rare as we think. maybe with papilledema, but IIHWOP (without papilledema) I suspect is misdiagnosed as migraine all the time. I've had this for 11 years, but did not get diagnosed til this year, and only because I asked for the LP. I wouldn't be surprised if all those people out there with chronic fatigue and MCS really have IIHWOP, but no one's done LPs on them.
I'm in NV.
Deb

*hugs* Don't feel bad, sweetie ... one of my doctors told me he only knows of 6 people in my immediate area who have IIH! Thank God we have these forums, right?

I consider myself extremely lucky to have as a doc one of the world's leading, innovative thinkers who specializes in spinal fluid issues. She is the one who diagnosed me with PTC, and she is a Neuro-radiologist.


Billings???? You sure must like the snow!! Beautiful country, but damn, it gets cold up there!!

I'm in North Carolina where the lowest high temp in the middle of winter is around 50 degrees!!

And yes, IIH, or rather PTC, is on NORD's list of rare diseases. But agree with Deb, I bet there are a whole bunch that are misdiagnosed, and often with Migraines. Lucky us.

Even AFTER being diagnosed they still try to push migraine meds... howwww annoying. I am sorry! You are not alone!!