Trigeminal Neuralgia

[Str4ngedaysindeed]

I have searched and seen there are some threads on this bloody horrible condition but thought id like to start a new one as have reenty been diagnosed with it. Long story short, I had many many ear surgeries as a child and remember getting 'Neuralgia' a lot then and having all sorts of tooth work - probably unnecessary, looking back. The pain has come back with a vengeance in the past three months and I am on tegetrol - 200 mg a day only and waiting for an MRI scan, having been back to ENT to see if the ear is a potential cause. Just wanted to start a thread for support and a moan really, as no one who doesn't have has a clue to be honest!

Oh poor you, I have had this and its miserable. Doctors referred me to dentists who pushed me back to the doctors. I saw a ent\ maxfax specialist who said it was caused by me grinding my teeth. I have had lots of dental work that I probably didn't need. My last attack was at work and all I had was paracetamol. I couldn't speak, was dribbling, it was awful. I always dread the cold weather, I always wear a hat and wrap a scarf around my face. Can it be treated or kept under control with anaesthetic nerve injections or removing the affected nerve? You have my sympathy.

Thanks! I have been prescribed tegretil on a very small dose but brave been upping it myself - also been referred for an mri which will show what is going on I guess. Like you I went to the dentist (3 times and I loathe the dentist!) to be told my teeth are fine- to be honest i would rather have work done on my teeth than deal with this. The cold weather certainly seems to be making it worse. Arghhh

I had so much dental work trying to get rid of it, if tegretil doesn't work there is another drug you can try

Yes. I think I'll go back to the the doctor and see if I can get something else.

I feel quite lucky that my dentist saw straight away that I didn't need anything done. So many people seem to have loads of work done for no reason

Ask about being referred to a neurologist. Many specialise in facial pain and there is a procedure called a microvascular decompression which can be quite effective in treating TGN.

I've had this. It's hideous.
Mine was because of an infection in a broken root which spread into my sinuses and just about everywhere else. I was referred (after 2 years of increasingly useless antibiotics from my fairly useless dentist) by a locum dentist to a specialist at the local oral and maxillofacial unit. I had the broken root removed, the hole into my sinuses plugged and the sinuses washed out, all under GA. No problems since. Good luck.

I had this and can honestly say it was worse than giving birth! So painful to even draw breath so you have my sympathy. In my case, I had 3 visits to the GP and dentist - they couldn't find anything. On the third visit to the dentist I had a root nerve taken out and immediately felt better. It was bliss to get rid of that awful pain. I was told the tooth would eventually die but it's still here 10 years later albeit it has gone a little yellow.

I would avoid the maxfax if possible, as neurologists and neurosurgeons tend to have better outcomes with TN.

There is a type of TN that is pain in the ear - geniculate - so you can do some research on that.

Have a look at TNA-UK for more info. I've had an MVD and been pain-free since but it doesn't work that well for everyone (nor is it suitable for everyone too). If you have an MRI booked, ask if they do a contrast dye one as well as it can show up the nerves better.

Good luck, hope the tegretol helps very soon.

Thanks everyone. I am making another gp appointment I think just to let her know I'm still here, it still hurts and HELP!! 😁

You need to take the tegretol regularly (there is also slow-release tegretol) and build up an effective level in your bloodstream as it's not a quick acting painkiller type med (as you are already aware from the pain!).

I've sort of been diagnosed with it - MRI shows nerve compression but only have had very mild nerve pain, some achiness and numbness. Not sure whether I have the shock type pain to come. There's a supportive UK Facebook page that shares info and tips on a whole range of things, complementary medicine, procedures, drugs, hospitals and managing day to day.

Thanks for that info Draylon - I may look into that if I get no joy from anything here. I'm on a couple of fb pages which are really helpful yep. I feel lucky that mine isn't as grim as some of the stories I've been reading - hoping it wont get to that stage :(

Definitely get referral to Eastmans. I did a pain management course there, it is one of the few in the country to focus on the face. They will properly diagnose you too, as GPS overdiagnose TN, and give you the wrong medication. Get your Dr or Dentist to refer you. Those on here who think their TN was cured by dental work probably didn't have TN in the first place.

Hi Str4nge,
I have this. Have had it for 3 years and counting. My gp said it was relapsing/remitting and should come and go, but I've had pain daily for the three years, nearly 4 actually.

I did the dental thing. Kept waking in pain with my 'teeth'. Had one removed. The pain remained. Had the next one filled. Pain remained, and when I was in agony while still numb from the anaesthetic, I myself knew it wasn't my teeth and went to the gp.

I couldn't tolerate Tegretol (Carbamazepine) as the side effects when I raised my dose were horrible. So I was swapped to gabapentin and now have pretty good pain relief.

I saw a neurologist privately, then on the NHS and had an MRI which showed the likely cause of the TN, a compression of the nerve in my brain. Surgery is an option for the future, but only if the meds stop working. Def push for a neurologist's appt, if only for an informed view on medications as a lot of GPs don't really know that much about it.

THere's a really good book called Striking Back, from the TNA (trigeminal neuralgia association) which was very educational.