Trigeminal neuralgia anyone?

This last week I had sudden onset of pain which felt like it was in my jaw above my last molar. Thinking it was dental related I went to the dentist. X-rays, pictures and many tests later am told it is not my teeth or gums. Come back if it hurst again.
Next day back I go; pain is there; repeat tests, more X-rays, more dentist’s come look. Nothing solved. It is not your teeth. Go see your doctor.

That night the pain became excruciating. Took large amounts of morphine, toradol, tramacet and was able to settle around two am.

Called Dr. Went in to see and was told it sounds like trigenminal neuralgia. Just keep taking pain meds and we will send an urgent consult in. Dentist calls me and says, "you really need to see your Doctor. I have reviewed everything again and I think it is trigeminal neuralgia. OK. Now I am not pleased with this news.

That night after taking gravel, lots of morphine, toradol, tramacet, Ativan, the pain is still 10/10. Off to the ER I go.

They give me IV morphine…no change in pain. IV toradol…no change in pain. IV zofran. Then IV dilaudid ( hefty dose). And finally the pain subsides to. 1/10 within 3/4 of a hour.

Again they are referring me.

Let me tell you I have never felt pain like this. Not labour, not any surgical procedures, not arthritis noting. This is all encompassing, overtaking searing agony that shoots out over my jaw and under it on the right side. Stops midline. It drops me to my knees.

Has anyone else had this??? How did you deal with it? Suggestions? Help? I do not want to spend the rest of my life on dilaudid.

Frankly Im surprised your still conscious! I'm sorry for what your going through, my daughter has this condition and she takes a drug called carbamazapine for it with good results. It's not a pain killer, it treats the actual problem. Good luck with it.

So sorry you’ve now having to cope with this…one of the most painful things anyone will ever experience, thank god they’ve given you the diagnosis that’s often half the problem. I hope you get the right treatment sorted soon x

I've never experienced this, but I've heard of it, and I'm glad that you're getting diagnosed right away. It's half the battle. Are they scheduling you for an MRI so that they can possibly see the source of the pain?

I hope you can get on top of this fast.

I've had milder trigeminal neuralgia, came on suddenly, went to the ER worried I was having a stroke or something, it was like lightning in my face / head unlike anything I'd ever had. My wasn't nearly as severe as yours, and I was able to ride it out and it went away within a week, as suddenly as it had come. Yours sounds much more serious. I'll be thinking of you!

Unfortunately, the closest MRI machine is ~1600 Km’s away, so no MRI yet. Do have a special dentist (deals with odd and complicated cases) appt on Sunday (as he is only up for the weekend from down south somewhere). Then ENT on the 21st. Still having the pain but not as bad as before. Seem to be able to head it off with morphine only instead of dilaudid. I am really hoping this is not trigeminal neuralgia, but I am unsure of what it may be. My teeth do not hurt and there is no swelling or difficulty chewing. Just the pain in varying amounts and stiff jaw after a really painful episode. It seems to be triggered by a certain spot above my teeth and then everything sets it off. Thanks for the responses.

Dear All

I wanted to say how I can appreciate your pain as I have this too.

I have PsA and Trigeminal Neuralgia (TN).

It began over 2 years ago. The pain is indescribable and it affects the left side of my face.

I had MRI and Nuclear PET scans to discount brain tumours and cancer.

There is relief from this disorder. After a multitude of drugs, my answer was originally found in Gabapentin. The first night I took this I could sleep and lay on my face. Unfortunately I have the pain 24/7. First it was on and off then it stayed.

Gabapentin was great for around a year but then I got break through pain, so found myself topping up the meds. I was taking 1200mg a day.

Then I got changed to pregabalin, which is 4x stronger than GABA, and found I could live my life again!! 300mg per day relieves all my face pain, jaw pain, tooth pain, migraines and sickness.

TN can be flare up more when you are stressed. There are many TN support organisations.

Without the meds the pain hits my nose, eyes, face and brain. Through the scans they found I had a lopped blood vessel (that should not be in my brain that way) and that was the cause.

I also do acupuncture once a week which helps the face muscles relax which in turn destresses the nerves in my face, so stops the jaw pain.

I hope this helps and sorry you are having a painful time.


Hi Niks, thanks for posting this follow up. I have had some nasty episodes that were probably just TMJ dysfunction, but were somewhat similar, and all I can say is wow, what a challenge it must be to live with it. Glad you have found some meds that control it most of the time :grinning:


Thank you for your post.

There is life after and with all sorts of difficult pains, and I am glad you found this helpful.

How did/do you manage your situation?


Hi Nik,

I have had a mouthguard made, but that made no discernible difference.

Prednisone helped enormously, basic MRI was unremarkable.

Because prednisone can relieve it, normally I jump on it with that very quickly now when it arises. I know it’s not a good long term strategy, but because I have balance, co-ordination, and dizziness issues with it, I don’t really feel safe driving the car any distance.

I have a referral to a neurologist in May, it will hopefully turn out to be a bit of peripheral neuropathy that I’m extra sensitive to, with an instruction to keep doing what I’m doing, perhaps with some gabapentin or similar.

I’m not sure it is nerve pain in the jaw. Doc said it was just all the ligaments in that area. But, in the beginning ( 2 years ago) I had terrible jaw pain. Got my dentist to do a full surround extra and he showed me the tissue swelling that was pushing up into my sinus cavity causing my whole face to hurt on that side, or somedays both. Made it hard to chew. Pain pills didn;t help, ice helped some. Doc said that was one of the unique symptoms of PsA. That has gotten better ont eh Otezla and now Enbrel. Unfortunately, I have nerve pain above my ear on one side that is far more painful than the jaw pain and it pulses. It is from all the damage in my neck from a car wreck and 4 fusion surgeries. Neurontin is about the only thing that helps it when it acts up, which is usually in the middle fo the night. Try some ice right on the jaw joint.