So, it's been a year. Too bad I won't be celebrating with balloons and fizzy pop. The shocks are intermittent, but they are stronger and longer lasting. I have finally figured out the warning signs -- buzzing feelings in my teeth or feeling like they are enclosed in ice, nerves jumping in my face (especially in and around my eyes), my jaws tightening, and extreme sensitivity to heat, cold, and light, chewing meat like chicken, steak, or even clams or mussels. I rely heavily on Tiger Balm, BioFreeze, and Aspercreme with Heat (capsaicin).
My Gabapentin has also been raised from 900mg to 1500mg. If I miss just one dose, or I'm late taking it, I am in for hours of pain. Sleep is disrupted because of it -- I have to take it literally every four hours.
I just had my first 30 hour session this past week of not being able to lie down due to the nerves firing all over my head. Just think of ants on the march when you stir the nest - That's what it felt like, from my throat to the top of my head the entire time, without the stings. (Thank God!) That set off my tachycardia, which scared me so bad that I thought I was going to have a heart attack.
I've been tilting my head back as far as I can, and sitting straight up to sleep, with my head turned to the right, because turning it to the left sets off the shocks. I have a knot in my right shoulder, and I wish I could afford to have a massage therapist come to the house. What a horrible way to have to live - In pain all the time, and taking this or that pill to try and deal with one symptom or another.
My annual family reunion is tomorrow. I won't be going. My face has been looking like I am severely sunburnt, and the worse it gets, the worse the nerves act up. I don't want to have a tn attack in front of 100 +/- people either, and have to explain over and over again about what's going on, especially since trying to talk during an attack just makes things worse.
I was finally referred to a neurosurgeon last month, and during my appointment, he kept referencing MS, which is an even greater worry. I can't get my MRI and MRA (both with contrast) until June because I have other obligations. I need a rich old uncle to kick the bucket, and leave me everything. (Joking, but not really. lol)
I hope the next anniversary is a bit more fun for you, BBB. Best wishes to you!