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Trigeminal demyelination

PostPosted: Sat Dec 11, 2021 8:08 am
by Fionahm
Hi everyone,

I was diagnosed in 2020 after, in retrospect, about 5 years of symptoms (misdiagnosed by a GP … … letting go!

Eventually, I developed a pain my right lower jaw / teeth which grew into an absolutely agonising pain with any stimulation to my tooth. (Multiple dental visits, an ED visit then Maxillofacial surgeon then Neurologist after MRI). ... (A silver lining was the weight loss.) ;-)

I know Optic Neuritis is a common symptom but I haven’t seen many comments about Trigeminal neuralgia. Is there anyone else out there experiencing this?

It’s been nearly 2 years now and I have had two episodes of a few months each which I manages, thankfully, with a graduated dose of Lyrica. This year I had to go to a double dose compared to last year.

I just wondered about others experiences with Trigeminal pain. I hope I don’t need to expect it to get worse and worse over the years and am hoping, with OMS, I will be able to control it better.

I’d love to hear of your experiences. Thank you!