Bad facial pain/tenderness. Neuralgia experts? I'm at my wits end.

[upjacobscreekwithoutapaddle]

I'm suffering with yet another bout of what has been diagnosed as 'neuralgia' by my gp.
This time I am VERY tender along the right side of my face (from my hairline to my jaw), it hurts to blink and my teeth all hurt. I frequently suffer with this but the pain varies and it doesn't always feel as incredibly tender as this. It is making me utterly miserable. I suffer with regular cold sores and when consulting dr google I've become aware of the link between neuralgia and shingles, so although I know its a different herpes virus could they be causing the neuralgia type pain? The symptoms do match a lot of those that come with trigeminal neuralgia except that that the pain doesn't come and go, it is constant. The gp has given me low dose amitriptyline, I took it two weeks ago for 4 nights and it seemed to work but now the pain is severe and back with a vengenance. I don't know if its worth mentioning that I am suffering with extreme tiredness at the moment. Please help.

Hey OP, I'm by no means an expert but I know very well how miserable facial pain is. I've been suffering constant facial pain, with bouts of extreme facial agony, for four years. Like yours mine varied, sometimes really tender, sometimes less so. Over that time I've had a number of diagnosis and theories from the GP and other doctors, starting with dental infection (had root canal, didn't work), sinus problem (had medication, didn't work, had surgery, didn't work), neuralgia (had medication, didn't work) but it was a consultant neurologist who eventually diagnosed me with chronic migraines.

I'm not saying this is what you have, but if you haven't seen a neurologist, I think you should go to your GP and insist on a referral. If it is neuralgia, and what your GP has prescribed isn't working, you need to see a neurologist anyway. I'm so glad I did, I'm not pain free (yet) but the neurologist's treatment has made so much difference already, it's not perfect but it's so much less miserable.

Also, are you still taking the amitriptylene? Isn't that something you take daily, rather than 'when needed' like paracetamol or something? I could be wrong though, I have taken it in the past but it turns out my body hates it so I came off it again in a hurry...

I have TMJ and this sounds similar. I'll try and link in a min.

I take the same tabs you have with naproxene and.max strength co.codamol. its the only thing that touches the pain.

tmj/tmd

Thank you both for replying. I'm very appreciative.

I could be wrong but I don't think its tmj Mike; it doesn't sound quite right.

Naoko, your situation sounds very similar to mine. I've spoken to the doctors so many times about it and actually often went into the docs and told them I had a sinus infection (I assumed that was what it was) so I'd toddle off with a script for antibiotics. Its hard because the pain can be sporadic its not easy to get into the docs at its 'peak' iyswim. I'm worried I'll have a battle to get a referral.

I might be wrong but I got the impression that the amitriptyline can work very differently for different people and it might be effective very quickly or take a while but once it worked I could stop taking it? Maybe I misunderstood. . So fed up!

I had to fight for the referral too, but it was worth it. I really think you should go back, even if they can't see you right in the middle of a flare up, if you describe clearly what has been going on and how long and ask for the referral and outline what has been done that hasn't worked, you should be able to convince them.

I don't know about the amitriptyline. If it's hard to get in with the GP, maybe ask a pharmacist if you're using it correctly? They're usually quite happy to come and speak with you if you ask someone at the Boots pharmacy counter if you can talk to the duty pharmacist about your medication.

I had facial pain for 6 months along with a friend of mine. She had her wisdom teeth removed and it went fine. Mine just took 6 months if taking painkillers each day tho dentist said my teeth nerves v close to facial nerves. I did wonder if I had shingles too. My dr did suggest amitriptylline but I gave him merry hell as also an antidepressant - but that's just me. It does apparently help with pain! Me and friend had just had a baby so well sensitive about PND.