Hi there. I have a ton of cranial issues. These are by far THE WORST symptom to contend with. Basically, feels like I have constant strep and tonsillitis and burning mouth and tongue. When the tongue starts to cramp and pull, I become a different person. Its a treachery that I can't even begin to describe. Scared. Always. Like how can this possibly be the lyme? Then I have the spams in the rest of the my body at night. Night has become this event that I need to gear up for. Whatever is going on may be vagus nerve related too b/c I have sleep starts/jolts which wake me from sleep the first 30 minutes - over and over and over - when I wake its like clearly something is wrong with my brain, breathing, etc. Frightening events where I feel like I am 'powering down.' And Spasms. Sometimes I lay awake until 3 am until I finally crash.
Tests/scans all normal. Neurosurgeon says glossopharangeal neuralgia. Lyme can do this, but then I question whether I even have lyme. I am positive 39, 23 and 41, but on some tests indeterminate. Babesia positive by PCR but for some reason lyme dr took me off the meds. Awaiting Bartonella results. I tell you its all so trial and error and the symptoms so dramatic that I really feel like we are flying blind, and I am treating with the most well regarded LLMD in state. My confidence waning. My situation is complicated by CMV and reactivated EBV, so I guess it could be the confluence of things.
Sorry, its hard not to ramble without recounting the 15+ years where I was undiagnosed. I am clearly neurolyme. High anxiety over the littlest thing. I cry, can't multitask, etc. Is that what you all mean by brain fog?
I am pushing magnesium like crazy. I am still pretty athletic despite this nonsense and think that the standard 400mg was too low. Went up to 900 mg. So far so good with the body spasms, but the tongue/throat stuff continues....its the most horrible horrible symptom!!! I don't hear too many people with head neuralgias so I thought I would ask!
Post Edited (Pyrs2) : 8/17/2015 3:52:29 PM (GMT-6)