Has any fellow sufferers of MS suffered from trigeminal neuralgia as part of MS, if so what treatment were you prescribed and for how long? Thank you.
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I suffered two bouts a year apart each lasting a few weeks and varying in intensity. I first thought it was my teeth which turned out not to be the case. I didn’t do anything but waited it out hoping it would soon pass. Not a nice feeling at all, this pain so hoping you’ll get relief from it soon.
I have occasional bouts of it & it is so painful, my neuro prescribed gabepentin but I didn’t want to go down that route, so just rode out the pain until it went away - not pleasant company
Hi used to suffer from neuralgia it feel like someone was pulling my teeth out I also had horrendous pains shooting down the left side of my face all down my neck and into me left arm. It was horrible! I was prescribed amitriptyline.
Hi I have had trigeminal neuralgia for a couple of months now. The combination of gabapentin and carbamazepine helps take the edge off.
Hi,
I’d never heard of trigeminal neuralgia until a couple of weeks ago.
Went to the dentist with toothache about a year ago. Couldn’t find anything wrong and didn’t hurt when I bit down. Pain went away.
End of November, same tooth, bottom back left, but much more painful, took paracetamol but that didn’t help. Next day same side, upper back tooth, next day different tooth pain lasted about 4 days.
Dr Google, and MS site gave me the answer as trigeminal neuralgia. Went to a pharmacist and was given co-codimol. Strangely the pain stopped after a few days.
Fingers crossed I don’t get it again, was very painful.
Bump
I’ve had it since 2019, three years after my MS diagnosis. I’m taking a cocktail of carbamazepine and Baclofen. I was on 300mg carbamazepine and 10mg Baclofen until six weeks after my second Covid dose (Pfizer) when started getting multiple attacks. It took an increase to 1500mg and 20mg to stop them.
I reduced this dose a bit and hoped to reduce it further until, six weeks after the booster (yesterday), I had frightening attacks in the evening. I’m now increasing the dose to the maximum recommended (1600mg) for a few weeks. My neurologist is on holiday so I’m just going to take whatever to stop the pain. Even though it messes my brain up, it’s better than that pain.
Only re-myelination of the nerve can cure this