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I've just been diagnosed with trigeminal neuralgia after 4 days of excruciating pain. It still hasn't subsided despite prescribed pain killers and having read up on it I'm pretty apprehensive about what might be ahead. Has anyone else any experience of it?
I had to look it up to see what it was because it sounded familiar. I had what sounds like it may be a similar condition called Guillen Barre syndrome around 17 years ago. It sounds like there are similarities and patients are checked for both but I may be over simplifying it so apologies if so. Anyway I'm fully recovered now and happy to describe the experience to you if you want to contact me through the messaging system.
somebody else in here also had GBS and described what he went through and I know he made a full recovery and was running marathons when I last saw him posting. I'll try to find the thread of you think it would be any use.
My mum has it, grim is the best thing I can say I'm afraid.
My mum has had it twice.
First time, after several years of ever increasing medication, she was referred to a neurologist, and got diagnosed with a menigioma (tumour of the brain lining to save you googling it!), which was causing the problem.
Then a few years after that, the pain returned, so was sent back for another scan, and the consultant showed where the blood vessel was pressing on the nerve. She was given the option to get a bit padding inserted, but opted not to as the pain killers work well for her.
somebody else in here also had GBS and described
That was Paulosoxo - I remember reading his threads whilst in hospital under suspicion of something similar (but turned out not to be)
But GBS is something very different to the OP - its an Auto Immune condition where your immune system attacks your nerve linings. - tends to start at the extremities (numb fingers and toes) and quickly leaves everything functionless
If it was GBS.... four days in you'd be paralysed and on life support. On day five they were happy for me to drag my functionless legs home and let them get better in their own time 🙂 They didn't know what was wrong with me but they were happy it wasn't GBS
My mum has it (mums seem to be susceptible!) she controls the pain with a low dose of Tegretol every day. I might have it - used to get sudden searing pains in one side of my face up to my temple. I was diagnosed with epilepsy 12 years ago and take Tegretol to control that; so coincidently the ?Tri neuralgia has gone.
Have you been prescribe naproxen?
Good for relieving neuro pain.
I've since been to the dentist for a second opinion and am less convinced by the GP's diagnosis. I'd been reading up on TN and all of the sources mention shooting pains lasting up to a couple of minutes. My pain is more like chewing an electric fence for 2 hours. He found a filling on xrays that was fairly close to a nerve so said it was worth investigating and has since drilled it out and removed some infected nerve tissue. I'll need root treatment on that tooth anyway now but I'm really hoping this turns out to be the cause and the GP has jumped to the worst conclusion. The anaesthetic is wearing off and I'm still sore but I was told to expect it for the next couple of days perhaps. Fingers crossed it's as simple as that because trigeminal neuralgia is a fairly terrifying prospect.