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?

Atypical facial pain or trigeminal neuralgia

Any facial weakness with the pain?

I hope the teeth that were extracted needed to be extracted.

Yes some numbness/spasms

I fear they perhaps didn't now, didn't know this at the time. Dentist was convincing now I'm not too sure

Sounds like trigeminal neuralgia which can be difficult to identify. I found cranial osteopathy helped me when I had a bout if it.

Does sound as if it could be TN. If so then tramadol isn't likely to help. Carbamazepine is the usual drug prescribed.

Can you spot if anything triggers it? For me it's a cold wind. I avoid going out in one unless I'm able to cover most of my face.

Acupuncture may relieve the pain (apparently).

I had something similar a few years ago. My dentist couldn’t identify what was causing my pain and he said he hoped it wasn’t trigeminal neuralgia because it is difficult to treat. I went back to my dentist a few times and it turned out to be a tooth with a large filling and the tooth had a hairline fracture through it that want possible to see until he removed the filling. Ended up having the tooth extracted. My friend’s husband has nerve pain in his face, I think he’s under a specialist but I think she said he’s on a drug that is usually used to treat epilepsy. A lot of sympathy and I hope you get to the bottom of it.

It does sound like trigeminal neuralgia. You should get this investigated

I am trying to get to get to the bottom of it all. Have been for months.

I'm in so much pain, been told to go hospital if it gets worse but honestly the thought of sitting in a&e for hours on a Fri night!

Do you have any sinus issues op?

Yes have horrible sinuses prone to sinusitis but this doesn't feel like that at all it's over on the side of my face

Does it stop at the midline? That’s another indication of TN.

Yep defo only on one side

But right down that side from temple to bottom of neck. I'm in a&e as pain killers weren't working and I just couldn't cope any longer. And I'm quite tolerant of pain usually. Neck now spasm/cramping too but dunno if that's from tensing with the pain tho I am trying not to

I have TMJ which causes horrible pain all down the side of my face when it flares up. Apparently I clench my teeth when stressed. The joint is always crunching when I open my mouth. It’s largely under control now - I don’t eat chewy things or sing much (I can’t sing anyway). But when it flares up ibuprofen works well. Whatever you have sounds worse than this though so I hope you get it sorted soon

Normal painkillers are completely ineffective for nerve pain. Hopefully A&E will be able to give you something but you need a proper diagnosis and treatment. I manage mine without drugs but I know my triggers ( they vary) and I’m so careful.

I hope its not TN. I wouldn’t wish it on anyone xx

TMJ was suggested at one point but Brufen is not working. Pain killers are simply not working even tramadol which I take for other kinds of pain and is usually very effective even too strong at times! It's not even TOUCHING whatever this is

Problem I'm having is triggers seem
To be opening my mouth more than a few mm! Even sipping water hurts!

I've spent past year back and forth to dentist and drs with it gradually getting worse and worse.

I have tmj and constant fullness in my ears like someone has their finger in my ear all the time. Had this for over 2 years nothing helps. My jaw crunches and locks and I have had mri and cr scans and been referred to a maxillofacial surgeon still they don't know what it it

Oh god! I have soooo much sympathy for everyone else going through similar it's horrific you are being left to suffer in pain. Does anything help? Also makes me scared I won't get treatment that works

Being sent home little they can do apparently. Dreading the weekend with this! Any tips anyone? Is it better to spread out the painkillers or max dose each time?

Have they given you pain relief or sending you home with nothing?
Really sorry to hear you've got this problem op, it sounds awful. 😞