Tuesday, January 13, 2009

Bad Headache Day 3 2009

The Headache Commands and I Listen

Went to the headache specialist in KC today. She was supposed to have requested my hospital records but of course none where there, but I was prepared and had a copy with me. Ha! Stunted Beauracracy! I was ready for you!

A lot of good it did me. Basically I was told what I already knew: there is no alternative medication for The Headache - the list has been exhausted unless I want to go on steroids again. They only partially helped The Headache and I ended up on insulin for awhile and my pancreas revolted AND I gained 25 pounds so not that useful. I have not had a headache free day since December 2007 and am already tired of this Thing.

The pain going off indomethacin was excruciating - a migraine at a 10 for hours and hours - and ended up with dilaudid to knock me out, and I don't like that - especially the pain part. My specialist mentioned occipital nerve stimulators and that there has been some advances in pain control with these...

I was given the name of a physician Steven Wilkinson in Kansas City that implants occipital nerve stimulators for headache control with some success. I will talk with my insurance company and see what they say - if it's experimental I'll bet they won't pay....


  1. Scary!! Hey em. They have probably already tested and thought of this, but could it be neuropathy pain from diabetes? I'm going to try out Lyrica for my neuropathy pain for the Back Attack, (waiting to get approved to get it for free :) very pricey stuff) and was reading up on it some to check it out.. said that sometimes diabetic neuropathy can cause headaches that are awful? Probably not helpful at all to you, but thought you should know..
    Love you!

  2. Ahh if it would only be sooooo easy. Lyrica made me bonkers when I tried it - it is contraindicated for persons who had a stroke - I guess that's why. Also made my stroke side very week - I walked like Igor in the Frankenstein movies. EEEGor or is that EYEgor???