Changes, Incompetence, and Diagnoses

I've read that TN1 can change to TN2, and have been experiencing the pain of both. If I had my choice, I think I'd go with a steady burn...as long as it didn't strike my ear. With an undiagnosed ear infection for over a month, I'm surprised I haven't landed in the hospital. I finally got seen by a competent doctor, and was prescribed medicine, and the burning is "almost" gone. There are fewer hot spikes in my ear, and I am still getting the burrning across my face, and now my forehead. It isn't bad, but it's there, and takes a while to calm down. TN1, however, has decided to stick around, with pain in my lower jaw, chin, teeth, tongue and for the past couple of days, in the roof of my mouth.

Eating is a joke. Do you remember the commercial with the owl and the "How many licks does it take to reach the center of the tootsie pop?" Well, I've taken to counting "How many tiny spoons of food does it take before the pain hits." Meals take twice as long to eat, and sometimes, I can't even finish. Sweet potato patties, finally minced meatloaf, mashed potatoes, vegetables boiled so soft you can suck them through a straw, although even that can cause pain.

I have been dancing in my wheelchair from the pain, and managed to lose four pounds in the past week. Who needs exercise! At least this pain is good for something. (That's sarcasm, folk!)

Back to the doctor I managed to find...She's a General Practictioner who knows more about TN than the very flippant neuralogist I've been seeing. When I was describing the pain I've been having, she jumped on TN before I could finish my sentance, whereas the neuralogist just shakes his head and says, "I don't treat jaw pain." Really? It's nerves, not my jaw! I'm done with him, except getting a referral to a real neurologist, and transferring my MRI to my GP before he loses my records. This guy wants me to try feng shui, crystals, and heated rocks. He needs his license pulled.

Lyrica was exchanged for Gabapentin. I hope it starts working, because I just want to die now. Well, not really, but that's where it sends you. I've only been on Gaba for one day, but it isn't working. I'll give it a week, and if it doesn't work, will go back to the Lyrica. I was told the two are basically the same, but that Gaba works slower. It's also less expensive than Lyrica, but at this point, I'll pay the extra.

My B-12 and Vit. D levels are "extremely low," according to my GP. I am on 2500 mcg of sublingual cyanocobalamin, and need to look for methylcobalamin. I am on 5000 units of Vit. D. My lumbar puncture test came back clear - no infections, so that's a good thing. No MS. The flake of a neurologist had no idea why I have "bright spots" on my brain, so hopefully, the next one will have an answer.

I have a hotspot on the dining table with all my medicine and planner material spread out, a mess in my craft room I want to get straightened out, need to mop the floors, and I'd like to do some gardening, but I'm off to take a nap. Sleeping is my escape. I want my life back.

((( hugs ))) BBB, I hear ya…hope this note finds you feeling better. Please give the new med more time than a week, it takes our bodies time to absorb the meds and build up to therapeutic doses. I usually give new meds a month unless there’s a severe reaction ( side effect).
It’s a dance, one I’ve done too many times to count.
Really glad your doctor is on the ball, hopefully you’ll find a Neuro experienced with TN!
Sending positive thoughts, Mimi

Thanks, Mimi. It's been two months, and I still have the ear pain, even with finishing my antibiotics, plus the stabbing in my tongue, and the electric shocks in my jaw and teeth. The ENT finally agreed to see me after the second referral I had from the Neuro. What gets me is that he (ENT) flat out refused with the first request, so I don't even hold out much hope there, but I see the him on June 5th. Two months...It's absolutely ridiculous! My diet is still the same, although I've been adding beans and soft fish to my meals.

The Gabapentin works for about four hours. I go to bed in pain, and I wake up in pain. The GP told me to take two 300mg a day, but she wrote the prescription for 3 a day, and said I could up it when I felt ready. so I may do it. I just don't want to turn into the sleeping giant like my mother has!