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Original poster

Trigeminal Neuralgia

16 replies

CutItOutAndRestart · 13/05/2012 16:25

I have recently been experiencing a bought of severe jaw pain and TN looks to be the likely cause.

I have started on a course of Tegretol but I am still experiencing frequent attacks although the pain is numbed slightly.

I just wondered if anyone is experiencing similar at the moment or has any suggestions for how to cope with this?

I am finding it a real struggle trying to cope with the kids and on top of this I'm due back to work tomorrow which should be interesting as I'm either in pain or feeling like a zombie once I've taken the tablets!

OP posts:

SecondhandRose · 13/05/2012 17:50

Have you been to the dentist or GP? Could it be possible you have TMJ? Is your jaw stiff? Do you grind your teeth? Are you stressed?

Original poster

CutItOutAndRestart · 13/05/2012 19:16

I clench my teeth and I am constantly stressed but tmj was investigated years ago and my jaw is not stiff etc.

I had this years ago then nothing and then a few months ago and it went. This time it is unbearable. I can honestly say I would rather experience another labour of a 10lb baby with no pain relief than have another day of this pain.

gp has given me the tegretol. Pain has numbed but it is still coming and going.
I also seem to be getting random pins and needles in my hands.

I just want it to go away :(

OP posts:

LadySybilDeChocolate · 13/05/2012 19:18

It may be a good idea to go and see your dentist. They can make a guard for your teeth which will help as clenching them can irritate the nerve.

Original poster

CutItOutAndRestart · 13/05/2012 19:27

yes dentist is on my list but I need to build up to it as I hate going with a passion. Pain relief never works effectively and apparently my nerves aren't where they are supposed to be (according to the dentist that paralysed my face and not the tooth to be work on!)

OP posts:

LadySybilDeChocolate · 13/05/2012 19:29

Hmm. I'd probably look for an alternative dentist. You can ask your GP for a referral to the pain management clinic, this should help.

Lougle · 13/05/2012 19:32

Have you been referred to a Neurologist? TN is both complex and debilitating, with many different treatments that can be effective. I wouldn't want my GP to be managing this, tbh. When I worked in Neuro, we had a Specialist Nurse for TN.

Original poster

CutItOutAndRestart · 13/05/2012 19:41

thanks for all the comments. I think the plan is to visit the dentist, continue with the tegretol and go back to the gp for a referral. I just needed to have a moan about it somewhere as its really getting me down tonight.

I was also hoping for someone to post about some random magical cure I think I would do pretty much anything to stop it at the moment!

OP posts:

grimbletart · 13/05/2012 19:50

My daughter had TG some years ago. It's a bastard. Poor you. I would also urge you to see a neurologist. They have a better handle on the combination of drugs and treatment than a GP will and are likelier to find an underlying cause, if there is one. There isn't always.

It is important to exclude teeth problems as a trigger though. It was one of the first things my daughter did. Her teeth were fine. In her case the TG was triggered by severe and recurrent sinusitis and her recurrent bouts of sinusitis have since triggered neuralgia again, though not TG.

In her case the treatment was a combination of anti-depressants (small doses act to calm the nerves - she was not depressed), the anti-epileptic drug carbamazepine plus powerful pain killers and these built up over a nine month period. The anti-epileptic drug was built up gradually over several months and then reduced gradually as the drugs finally started to work and she could come off them.

If carbamazepine (Tegretol), which is generally the first line treatment does not work the doctors may try gabapentin which is also an anti-epileptic but works in a slight way to to carbamazepine

CMOTDibbler · 13/05/2012 19:50

I'd def ask to see a neurologist - there are things that can be done for tn, and they are the ones who can access things

SecondhandRose · 14/05/2012 22:49

You can tell if sinuses are to do with it by phtting your head down by your knees - how is the pain now?

Original poster

CutItOutAndRestart · 15/05/2012 17:42

pain is coming and going but has been better since starting on the tegretol. There is no difference to the pain if I put my head down so i don't think its sinus related.

I think my jaw on the painful side is playing up as I yawned this morning and heard a huge crackle and pop!

I am off to the dentist this week to ask about a guard to stop the clenching at night.

I will go back to the gp soon aswell as I only have a short course of the tegretol.

The two things worrying me now are my absolute fear of the dentist and the continued pins and needles in my fingers/hands.

I think i can cope with the spaced out sick feeling of the tegretol at the moment so long as the majority of the pain is under control.

sorry to hear of others suffering :( its a bastard sums it up perfectly!

OP posts:

SecondhandRose · 15/05/2012 18:07

The guard the dentist will make you is a thin sports type mouthguard and will cost a fair whack. If you would like to save on your costs go and buy a sports mouthguard that you pop in hot water and then put in your mouth. Carefully with a sharp knife you can cut off the bits you dont need and also thin it out as obviously you dont need gum protection. You just need it to stay in your mouth overnight to stop you clenching. I qualified as a dental nurse many years ago.

Has anyone checked you for an ear infection?

Original poster

CutItOutAndRestart · 15/05/2012 18:37

um no, based on symptoms prescription was handed over and I was on my way.

isn't funny the things that are just overlooked?!

thanks for the tip on the mouth guard. I will see what they say and see if I can pick one up. Do I need to look for anything specific as I don't want to aggrevate it further?

OP posts:

Grumpystiltskin · 16/05/2012 07:03

Ideally you would have a hard one with the bite adjusted to give you balanced occlusion and guidance on your canines. You will absolutely not get that if you buy a sports mouthguard

Has anyone given you some neural stretches for the tingling? I used to get numb fingers and saw a physio who showed me these & it went away, when it comes back I just start again.
They consist of stretching your arm behind you & turning your neck to the other side and stretching hard so your brachial plexus (sort of behind your collar bone) gets a good stretch.

grimbletart · 16/05/2012 13:24

Just on the sinus and putting head down to knees issue, my daughter could put her head down to her knees with no pain (her maxillary sinuses were the affected ones) So it is not an infallible test. She is something of an expert having had problem 20 bouts of sinusitis since her first as a young teenager. The problem with her is that even when the sinuses are not infected the MRI scans showed the lining on one side of the face is inflamed and thickened and it is this that is putting the pressure on facial nerves. The nerves then get into a loop, so to speak, and give problems almost as though it is a knee jerk response - a bit like the nerve pains left after facial shingles, but worse.

Hope the mouth guard helps CutItOut.

SecondhandRose · 16/05/2012 14:08

If you have money to spend on a dentist made one then go for it but as you have already said yourself you have been told it is not TMJ. In the short term buy a sports one that you put in hot water (and then you cut it to make it comfy). If you get any relief whatsoever then get to the dentist to make you a 'proper' one. As soon as you cant grind and clench you should get some relief. But if it is not that you have just spent the best part of 50 quid for nothing.

How about asking for an ENT referal from your GP too?

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