Monday, September 26, 2016

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 4

This is a constant pain that gradually amps up until I go in for a nerve block. Usually it sits at a tolerable 4-6 until it builds to a 8-9 where I am begging for the nerve block. The pain would start at the base of my skull and radiate out like lightning bolts up the back of my skull, through and around my ears or down my neck, into my shoulders and on the worst days down through my arms and in my hands upward from the back of my skull to my cheeks and jaw line. The more tired and exhausted I was, the tighter my muscles would get and the harder my muscles would be clenching around damaged nerves. While this was going on I would get light and sound sensitive. This resulted in a majority of my time being spent in a cold, dark, quiet bedroom just waiting until I was rested enough for the pain to be quiet so I could at least do a chore or work an hour from home that day. Heat makes it worse (like 90° F) and cold makes it worse (like 35° F.) Once we got all of that established with the neurologist they reclassified it as Occipital Neuralgia. We then treated it with a combination of Soma (a muscle relaxer) and Hydrocodone (a pain reliever); this helped delay the time between needing nerve blocks. The muscle relaxer helps keep my muscles from clamping down on the nerves at night and the pain reliever helps me get to sleep through the constant pain. This took about 2 years before we finally found something to give me relief from the 'headaches.' Massage can help delay the building pain but if I wait too long before trying one, it could easily aggravate it. I tried acupuncture for about 6 months but did not see any change or relief from the pain. I would like a chance to try chiropractor at some point soon to see if that would offer any relief.

  • My nerve damage left me with what is now diagnosed as occipital neuralgia. Normally I go in for nerve blocks every 3-6 months. I get 2 shots (left and right) into the base of my skull in the bundles of nerves there.
  • My vision was affected when I was hit by GBS and even now when I overdo it, my vision will blur when my exhaustion is high.
  • When I get too exhausted, I get nauseated and/or vomit and run a low temp or have a cold sweat hit me until I stop and get solid rest.
  • Prior to the Ketamine Therapy: I would get what I would call a second wind warning. I would get hit with a few minutes of a sweat and body chill. I would know that I either need to stop or I was going to be a bit worn out the next day. If this happened a second time, usually about 1-2 hours later, and I ignored it and kept pushing through it, then the next day I would be needing bed rest and minimal activity.
  • I still get neuropathy in my legs where they burn and itch and I can scratch them raw in my sleep. Generally a shower will help override the sensation and make the buzzy/needling/crawling sensation stop. 

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