Hi everyone,

My name is Heather and I'm 41 years old.  I've been diagnosed with PTC for 11 years, but have been symptomatic since I was in my mid teens.  I have run the gamut with lumbar punctures (8-9 of them), have been on a course of Diamox with no positive results, and currently deal with my symptoms with OTC medication, and at times, retreating from the world. 

I was diagnosed when I was in the final FDA trials of a new surgical treatment for corrective eye surgery.  I have implanted C shaped rings in both eyes, implanted in the stromal layer of my cornea, that place pressure on the eye to change the shape of the globe.  My physician was doing routine exams, when he noticed I had papliedema.  I was immediately referred to an opthoneurologist, who confirmed my diagnosis of PTC. 

Because my symptoms are fairly managable, I've chosen to have theraputic lp's done over the years, but those haven't been without problem either.  I've been hospitalized for a post lp headache, and have had nerves in my back "touched" during the procedure, resulting in excruciating pain in my lower back and legs.  That took 8 months to resolve fully.

Recently I moved back to my hometown of Cleveland Ohio, and once I find a job, will be looking for a neurologist, and opthoneurologist who fully understand, and appreciate what PTC/IIH really is.  If there is anybody out there who lives in this area, and has great docs, information would be appreciated.

Thank you to the founder of this group, for providing a place for those of us who experience this hidden disorder to find support and understanding.  Its been very difficult for me personally over the years, to try and explain to my family and friends what this is really like.  Its caused problems for me, in my personal and professional life, when I have a headache and can't do what I've said I would do.  People just don't understand why having a headache should stop you from life.  If they could walk a mile in our shoes, maybe then they would understand.  Until then, perhaps groups such as this one, can help educate those that don't suffer with this often debilitating disorder.

Sincerely,

Heather