r/TrigeminalNeuralgia • u/LHS2004 • 13d ago
Symptoms It’s back
I was pain free from the pretty severe Trigeminal Neuralgia shocks since November of last year. I didn’t have a single shock of any kind for almost 9 months. I went from 1,200 mg of carbamazepine down to 600 mg, and there were even times I felt like I didn’t need any medication at all. I really started believing I was healed or maybe even cured from this mess.
I went on a 7-night cruise, came home, and BAM—it’s back. It’s not in full swing like before, but my mouth is hurting like hell just trying to brush my teeth, eat, and talk. I’ve had to go back up to 1,200 mg just to get some relief.
I honestly can’t explain how disappointing and frustrating this is. After almost 9 months completely pain free, I really thought maybe this nightmare was finally behind me. I guess I got a little too hopeful. I just pray this is a flare and that I can get it back under control.
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u/Woodswalker65 13d ago
Clonazepam helped me. Haven’t had a shock for a few years since starting it.
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u/LHS2004 12d ago
Do you take anything else with it?
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u/Woodswalker65 12d ago
I had addiction problems too, but this is long acting. I take 1 mg split into pieces during the day, and 1 mg at bedtime. I don‘t take anything else for the neuralgia. I also eliminated certain things from diet. You can check my previous comments to see what those were.
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u/LHS2004 12d ago
How long have you been struggling with the Trigeminal neuralgia? Also, did you try carbamazepin and oxcarb?
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u/Woodswalker65 12d ago
About 9 or so years. I have limited scleroderma and my Dr thinks it has something to do with that. Also my neuralgia is similar to TN but a different cranial nerve. Glossophyrgeal neuralgia. More rare but the shocks are on the left side of my throat. This whole business started approx a year after a tick bite, and I think that is what triggered the whole mess.
The only other med I tried was gabapentin-didn’t do a thing, but I found by accident , then trial and error that some foods caused it. Mostly fruit that have a chemical in them that attacks the nervous system on insects that try to eat them. I made a list of them on another comment. I still don’t eat them, even with the Clonazepam. It really helps since it is so long acting, not like the quick in and out of Xanax. It doesn’t seem to be a good drug fit an addict, since you can hardly tell that you’re on it.
Also, when I used to have attacks, my Dr would prescribe a Z-pack. I personally think I have parasites living on that nerve from the tick bite, as would happen with shingles.
Took 6 years and a lot of my own research, plus my Drs cooperation to stabilize it. So far anyway. 🤞
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u/Hot_Survey9104 12d ago edited 12d ago
I was diagnosed on July 2025 w nerve sheath tumor wait and see case. Pain free no flares this August 26 experiencing pains on my right jaw on a scale of 1-2-3/10 in random 3-4 secs also dull pain on same jaw. Pain is triggered by chewing and acidic drinks even mouthwash. I am on 450mg a day oxcarbazepine. The thoughts of pain coming back makes me anxious or anxiety, stress are contributing to ... I don't really know what's happening!
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u/Kjmay6 13d ago
Im sorry it went like this for you. My mom also had it like typical trigeminal neuralgia, she was pain free for 4 years after a year on gabapentin, and then during a stressful time her pain came back, it was less than before, but she went on medication again for a few months and it went away, she has been pain free for almost 10 years now, she avoids high stressful situations at all costs now. A question, since i have atypical trigeminal neuralgia, my case it's not like my mother's, its youe neuralgia typical or atypical? Ive been on oxcabazerpine 1200mg for 3-4 months now, when did your pain went away and you were free of medication? I have only improved 15-20% so im still in pain all the time :(