What on earth is wrong with me?! Facial/Nerve pain approx a year

[Graphista]

Started early last year, initially thought toothache and have now had several extractions same side of mouth which have only ever temporarily provided relief and at times made things worse. Losing faith in dentist if I am honest.

Pain flared again really badly about a month ago though it is constantly niggling I've basically been taking paracetamol most days for past year. This time dr suggested it might be TMJ and prescribed Brufen gel which did help initially but now having little effect. I am allergic to lots of different meds which makes it hard to prescribe for me.

Flare again this week, up all night in agony, back to drs today, now they're thinking maybe trigeminal neuralgia have prescribed tramadol which I've had in the past and don't love taking due to side effects but honestly I'm in so much pain I don't care!

Anyone else been through similar? How did you figure out what was wrong and what treatment/management helped?

Sooooo painful! They've given me naproxen I've already got tramadol from gp, add in paracetamol and Brufen gel (a&e doc said I can use em all together) I MIGHT get a little relief until I can get back to gp Monday. Not looking forward to the weekend ahead. The pain killers I've got are very very slightly taking the edge off but does nothing for the worst shooting pains.

Normal painkillers won't work for nerve pain, as an OP said carbemazipine is what she usually prescribed for trigeminal neuralgia, which is what it sounds like it is. I think some people get some relief from pregabelin or gabapentin (although I think there might be issues with prescribing one of them). There's a trigeminal neuralgia UK Facebook group, that might be really helpful in giving you advice in the meantime, heat pads work to some degree for some people, for example. Hope you get it sorted

I have a close friend who had TMJ. She was put on Amytriptyline for the nerve pain. Regular painkillers don’t work too well.

Have they given you a mouth guard @Graphista ?

Go to an osteopath and Acupuncturist.

I knew someone with terrible face pain, she had MS as well and TN and MS go hand in hand. She required PRN Oramorph to help as it was so painful.

I do feel for you xx

I second the recommendation of the FB group. There is a lot of help and experience there.

Heat helps me. It doesn't work for everyone. For some it makes it worse.

You need to get back to your GP on Monday and push for a diagnosis. They may want to make a trial of carbemazipine as if the pain responds then it's almost certainly TN.

Good luck - severe facial pain is horrific but in most cases TN (if it is TN) can be controlled. I had many years in complete remission.

Thank you for all the kind thoughts and support. Managed a little sleep sitting up last night mostly out of exhaustion I think. Still in a LOT of pain plus the delights of side effects, can't eat normally which impacts taking of meds too, quite woozy and nauseous so so fed up with all this

Can TMJ and TN come together?

No mouth guard yet as dentist says I need some work done first though I'll admit I am very tempted to get an "otc" one I just want some relief and some sleep!

I have problems with sinuses and have had them operated on. I get pain in my jaw and facial pain and paralysis when sinuses are bad and full or infected. Just wondering if you may be experiencing similar issues.

Hi, I had something sounds very similar few years ago. I had two root canals but still in non stop pain. I will never forget how stressful it was. Dentist referred me to endodontist, who then referred me to a facial pain specialist as they couldn't explain it. Facial pain specialist immediately diagnosed it as on going nerve irritation and put me on gabapentin which is usually used for epilepsy. It took a few months but pain did fade away completely and I was so relieved. If you can get a referral to specialist I would recommend it. He did mention people often get teeth pulled but that doesn't work as the nerve pain remains.

I have this suddenly and its awful no chance of getting in a doctors either I hope your feeling better you have my full sympathy lovely

Graphista

How are you doing now?
I have something similar.

I have recently been diagnosed with a working diagnoses of persistent idiopathic pain right mandibular branch of trigeminal nerve and Temporomandibular disorder (TMD)

Was told by the O.S I have 2 concomitant conditions, the first is TMD with a muscular component as well as suspected episode of anterior disc displacement with reduction on the right.
The 2nd condition is persistent idiopathic facial pain

Been put on pregabalin at first a dose of 75mg and now on 150mg which I take at night.

My symptoms started with a burning feeling in my MN area which gradually increased over a couple of days radiation up my jaw line and cheek. The burning was intense. My GP put me on 75mg as was waiting for my appointment date to see the O.S

The O.S said to have the pregabalin upped.

They sent me for a MRI which I'm waiting on results.

The pregabalin has helped although I'm noticing the burning coming back slightly in my cheek... Not sure if it may be because I stopped the naproxen?

I'm honestly scared of this. I can't believe that both can just happen at the same time and not be connected in anyway. I was told by the O.S they separate problems that just happend to happen at the same time.

I've not been one for medication and this frightens me as pregabalin also makes one feel drowsy alot of the time.