Jaw pain

[Lizzie]

I’m having a lot of trouble with jaw pain on one side. It’s painful and clicks when I try to eat or drink, and when I yawn .
I eat very little now as mainly using PEG, but it certainly makes things more difficult. I wonder if anyone else out there with Bulbar onset has a similar experience, and if you have any suggestions for relief ! Thanks for reading. Lizzie x

[LindaB]

Hi Lizzie not Bulbar onset however for some time my right side of jaw clicks when I yawn....really badly...fortunately no pain. I'm not sure if this is something common in MND someone on here might know more. 🤔👍

Just seen there is a thread in the forum Life with MND 'Jaw dislocation' seems this may be common.

[Gordan1111]

Hi Lizzie. I'm also bulbar onset but relatively early. I've had jaw pain long time started in sturnum and spread to jaw - but assumed was heart-burn or dental issue which I think more likely. Mentioned to dentist ages ago - no clues.

[Lynda]

Hi Lizzie,
My husband is bulbar onset and had terrible jaw pain. He was prescribed baclofen which has helped.
Lynda x

[Lynne K]

I’m having a lot of trouble with jaw pain on one side. It’s painful and clicks when I try to eat or drink, and when I yawn .
I eat very little now as mainly using PEG, but it certainly makes things more difficult. I wonder if anyone else out there with Bulbar onset has a similar experience, and if you have any suggestions for relief ! Thanks for reading. Lizzie x

Lizzie, your jaw issues may not have anything to do with MND. What you described sounds like how I was from about twenty five years ago. After years of problems and being fobbed off by dentists and doctors it was discovered that I have a disc in my jaw out of place (folded double for many years - resulting in no blood supply etc so not useable) what I suspected all along but hit a brick wall with my GP and dentist. My jaw is now stuck fast partially closed and is a bit offset. But so long as I don’t over chew the pain and clicking out of place has stopped. I was offered an operation to create a new disc with a piece of flesh taken from my head. But I chickened out. I get along ok with it now. But any visits to the dentist are challenging because I cannot open my mouth fully.

Ask for an MRI of your jaw. Good luck. In the mean time don’t force your mouth open, choose softer food and don’t chew gum. Lynne x

[Ellie]

I’m having a lot of trouble with jaw pain on one side. It’s painful and clicks when I try to eat or drink, and when I yawn

The right side of my jaw is the same, Lizzie.

My facial muscles are all affected and my jaw isn't held in full alignment now. It's better when I wear my head support/collar as it sits under my chin 👍👍 but, as soon as it's removed, there's a loud crack/click as the jaw falls slack again... I've also had (trusted) people manually move my jaw too, not that it lasts long. In bed, my NIV mask helps keep my jaw closed properly 👍👍

In my case it's not spasticity causing it, so Baclofen doesn't make any difference (I take it for other muscle spasticity), it's just that the muscle is too weak to physically hold the joint in place. Have you access to a Physiotherapist who could examine you, then you'd know if the muscle is too loose or too tight? Or when is your next clinic appointment, you could certainly mention it there.

Hope you find a way to reduce your pain. xx

[Lizzie]

Thanks to all you good people for sharing your experiences and thoughts. You’ve certainly given me some ideas to consider Lizzie x