My name is Vanessa. I was just diagnosed 6 weeks ago after going through an unreal experience of pain since Feb. I'm used to pain, have lived with it for years; but this was way past my threshold which is quite high.
Lightning bolts of pain through my head 8-10 times a minute, feelings of severe toothache, sinus pain and deathly migraines were constant for months. My neurologist was stumped. I went through every battery of testing, my family had to come and take care of me for even the simplest tasks at times, and there was never a time I got more that an hour of sleep even heavily drugged.
June 14th I was about an hour away from suicide. Not a big plan, note, letter, etc, just thinking about which combination of my medications would work the fastest to do the job. I was done, out of my mind and couldn't take anymore. Within 5 minutes my two youngest daughters texted me, one with just a funny joke, the other with a funny picture of my youngest granddaughter. They literally saved my life and I still haven't told them that.
From that day on I started camping out at my neurologist or calling every day. I became the roach of the clinic. I would lay in the waiting room in agony, and they would put me in a room to wait. Finally was diagnosed on July 8, started on heavy muscle relaxants and it started to subside. Now I can manage some of the attacks with the muscle relaxers and am on carbamethazone; not sure if it is working, but my left side still acts up more than the right.
After being down for so long it's hard to be up and around for more than 2 hours at a time at all.
SO... My big question is, has anyone had a long attack like this and then been "different" after?
FOOD- Since a few weeks of coming out of the fog I have started eating again, but have severe cravings that I cannot control buying the food for, and then don't eat. I had gastric bypass so eat very little, but it's strange to have such severe cravings, and SO STRANGE to uncontrollably buy something... Yesterday I ate a whole fried onion with some sauce I made. I never even liked onions before.
SPEECH AND THOUGHT - Also I have been unable to stop myself from saying out loud what I think sometimes. Even at home alone. It's like a tic; almost like I cannot move unless I say it. Scares me to death, and can be embarrasing. I also have icky thoughts mostly about people that would normally never be something I would think pop into my head. If that thought and speech ever connect I won't be able to leave the house!! It's worse if I'm tired, and that leads to...
SLEEP - I cannot sleep at night most nights, but can get some good sleep from 3-10am. Why those hours? No idea. Even if I go to bed and sleep early I wake up constantly until 3 and then sleep hard those hours. I had a sleep study done and they are boggled; they are having a specialist look at it, because from 11-3 I sleep but only hit stage 1 of sleep; never deeper. At 3 all of a sudden I go into REM. Most bizarre thing they ever saw. That's what you want to hear. I have to follow up with this person who 'handle the strange problems' next week. Otherwise I am up until about 5, then BAM, out like a light. There is no inbetween where I get just tired.
Any insight into those or other changes people have experienced would be greatly appreciated!