Sleep study tonight

I went to see Dr. LeSage at Johns Hopkins on the 14th. I'm trying to followup on the connection between PTC and sleep apnea. Intuitively I am convinced that my own explosion of symptoms happened because I broke the mask on my CPAP machine and slept without it for two months.

Timeline -

Meningitis in 2003 - I can't remember exactly when, March, April or May, then I was just not better ever. Symptoms decreased but never went away. I was ill enough that even when I managed normal things like traveling to visit my friend A. I was too sick to walk around with him and my second visit to him in October of 2003 I had to be hospitalized.

But through all this, pounding headaches, constant vomiting (okay not really constant, how about daily?), extreme intolerance to exercise, my vision was okay, or at least as okay as my vision has ever been, 20/800.

Then I broke the mask and my vision started to go. By the time I went to see the eye doctor my pappiledema was so bad you could see it with the naked eye and I had quite a lot of hemorrhaging. You can read some about this in my February 2004 archives I think. I may have been too upset and scared to write about it, the scariest thing I heard was when the retina doctor sent me to Dr. Rismondo and said she was going to be very aggressive in her treatment and I asked if my eyes would get better and he said "We're trying to save what vision you have left."

She did an MRI, and MVE and then the lumbar puncture which showed that I did have PTC. She started me on diamox and my eyes gradually got better.

But this last LP that I had in April showed that the pressure is nearly as high as when I was diagnosed so why are my eyes better? I think it's because I got a new mask and started back on my CPAP machine.

My sleep is still awful, it's fragmented, I wake up screaming a lot and I wake up choking every night. One popular problem I have is that I wake up choking, convinced that I have already died in my sleep and I am trying to figure out what to do next.

My grand idea is that instead of getting shunt surgery, very dangerous for me because of my clotting problems, I will work on fixing my sleep problems and see how they affect the PTC.

All of this leads up to my appointment with Dr. LeSage who is a neurologist at Johns Hopkins, specializing in sleep disturbances, particularly narcolepsy, rls and erm, something else I forgot.

I'm going to Johns Hopkins tonight for polysomnography. I'm a little nervous just because I have night terrors and PTSD after some stuff that happened when I was sleeping as a kid. I can't stand the idea of people watching me sleep. But I'll muddle through somehow.

I wrote a synopsis to my friend A. About what exactly Dr. LeSage and I decided and I might post that for those that are interested.

If you have PTC I really suggest you get tested for sleep apnea. If you google around you're find lots of studies that connect the two.