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Trigeminal neuralgia I think?

Hi guys,

Can you give me some advice please…

I’ve had excruciating pain in my gums, up one side of my head and jaw, to the point where I can’t sleep and I literally don’t know what to do with myself. Been to the dentist teeth are fine.

I’ve had this before (before I was diagnosed) but nothing quite like this :frowning: im in absolute agony.

Am I right in thinking this is trigeminal neuralgia? I’ve been taking co codamol but it doesn’t touch it at all.

Thankyou

Laura x

I have Trigeminal neuralgia the moment( been to gp). like you I went to the dentist first and everything ok as I had it before and this was the first thing the gp asked. mine is like electric shocks in my teeth and face to the extend I couldn’t clean my teeth or eat and drink properly. Gp has given me carbamazepine which although I don’t like the side effects it works have considered acupuncture but need more info on it. Julie x

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Julie - My gp told me to keep my ears covered in the cold, I do wear a hat now even if I’m driving and have the window down - she said to try and not get a draught in my ears - may help a little

Thanks for replying Julie…

That’s exactly what mine is like, I can’t eat or drink properly either.

One of the worst pains I’ve ever had!

Laura x

Hi Laura yes I agree with you one night I tried to clean my teeth and I ended up on the floor in agony my husband wondered what I had done bless him. I suggest you get to your gp but I suggest you go to NHS web site to read up first because my gp didn’t even know people with ms are more susceptible to it than other people if you have had an infection recently especially. I had had a bad cold and cough which turned into Bronchitis and cold sores and apparently this makes your immune system go a bit hay wire, also keep your face as warm as possible when you go out because cold air can make it worse.

Best wishes

Julie x

Yes I’ve been told to wear a scarf around my faced and try not to open my mouth to much in the cold (Yeh)

Thanks Julie x

It’s terrible isn’t it! …I’m literally there wide awake in so much agony I could easily chop my head off Lol!

I didn’t know that either until I googled, that’s why I always ask on here before going to the GP because they’ve never read my notes before I go there and seem to not listen to anything I say! Frustrating!

Okay Ill do that, GP appointment tomorrow, so I’ll be going there with a diagnosis already Lol!!

Laura x

Ive had this in past and worse pain ever, fealt suicidle, was like toothache earache and headache all in one go. Couldnt eat or sleep. I was prescribed carbamazipine and they were a god send. Should speak to ure GP.

I had this pain over the summer. It felt like wisdom teeth bothering me but an x-ray at the dentist revealed it wasn’t anything to do with teeth. He then said trigeminal neuralgia. I got stabbing pains and tingling on and off as well as a pain that felt like my teeth were being pushed out my gums- horrific! It lasted for a few mins always and over a few months, then disappeared never to return so far…

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It’s awful isn’t it! I’ve never had pain like this before…

I do everything to avoid going to the GP but this is unbearable x

Hi Julie

Just a quick question, been to the GP, prescribed me the same med as you received.

Prescribed me 1\2 100 mg tablets twice a day. I looked at the info and this seems seriously low, and sure enough they’ve made absolutely no difference.

How much do you take? Because I know im probably going to get criticised for this, but surely I can just take more tablets? I’m at my wit’s end!

Laura x

The thing with carbamazepine it takes time to build up in your system, also you should steadily increase your dose with the advice of your Dr, please don’t just up the dosage yourself without advice.

i was diagnosed with TN last January at this time actually, I was put on them and they helped me quite quickly but I ended up on 600mg a day, which is low compared to some people. I found the side effects awful but the pain was worse so it’s a case of weighing up the facts and deciding which is worse. I was weaned off them slowly in the summer with the Neurologists advice to see how I got on and so far I’m ok just the odd twinge, but I live in dread of it coming back it’s awful, I feel for you I couldn’t eat or drink anything without setting it off it was a nightmare. Hope you get some relief soon.

Marie

I dont have MS, my wife does. I spotted your message because I had Shingles on the trigeminal nerve starting in July 2016, 3 weeks after completing a course of prostate cancer radiation/chemo treatment. I then started the mother of all toothaches which my dentist did not associate with shingles. The correct diagnosis came from my local A&E.The GP said mine was a classic case of the Herpes Zoster awaking from its long sleep following chickenpox when I was 11. I’m now 77. The GP finally but only after 3 weeks, prescribed 20mg Amitryptiline and that initially at 2 tabs per night, reducing to one, gave me uninterrupted sleep and was my salvation. People in some other countries dont get chickenpox because they are vaccinated as children but cleverer people than me decided thet Brits are made of sterner stuff so if the MS Soc is still around in 100 years time there may still be people getting the sting in the tail of shingles- trigeminal neuralgia. You are right -there is simply no pain as bad. Big Pharma is not going to invest its millions in Herpes Zoster treatments when this complaint no longer exists in North America for example.

I later bought (£175) a booster vaccination because I am the wrong age to get one on the NHS. You cant get paid for boosters from your own GP due to some arcane NHS rule, so I travelled 30 miles to Birmingham to get mine. That was after I finally found a member of my GP practice who would come off the medical fence and say I should indeed have a booster.

I deeply sympathise with what you are going through, not that that’s much consolation.

It is said that herpes zoster attacks when the conditions for it are perfect. Those are when immunity levels are very low.