Dear Doctors

June 4, 2011

Dear Dr. Ponti and Dr. Raab,

It is like I have a ball of lightning in the right side of my head. It is excruciating.

I can almost stand the pain (ok maybe not really anymore, as I go into my ninth month of it) but I fear I won’t be able to survive the blacking out, neurological deficits, unable to think/walk/talk very well thing that also happens…

I had another stroke-like/complex type/ migraine series of symptoms on Friday the 4th. Was blacking out, severe tunnel vision, crackling in head, pain, can’t think of words or names, can’t make sense of anything, hyper aware of my gait when I walk, can feel bottoms of my feet and its like I am a weird walking stick figure, have to hold the rails when I walk up or down stairs, hearing is somewhat distorted, and right side head feels miserable pain and also refers pain around to left side.

(4 hours later I was fine. Still had head pain but neuro symptoms abated and no lasting effects, except perhaps exhaustion and irritability! I didn’t take medications but walked to increase adrenaline and oxygen to keep from blacking out. Drank some glasses of water and ate meat and sat still in a quiet dark room.)

What preceded the episode? (which feels like a brain collapse or blow-out), I don’t know. Had had three good days. Hormones=it was a week before my period would start. Had been having a lot of left side face twitching and left leg and lumps twitching.
I had been sitting down for a few hours.
I had been drinking a caffeinated beverage and chewing ice.
These sound like coincidence but sitting down and eating often triggered short episodes of blacking out/tunnel vision for past 6 years. (This was back before I had migraines or any head pain at all. Sometime when I ate dinner I would get blacking out dizzy, which doesn’t happen if I stand up to eat.)

What to do?

I think I need more imaging of that right side.
MRI with contrast?
Splice MRI of that section only?
PET scan?
CT with contrast?

Can we put me on iv antibiotics or antivirals?

Can we put me on oxygen plus iv compazine?

Something? Anything? This is very Unlive-able.
I have been in survival mode since November 2008. So Frustrated.