pain in gums

[Bass]

Hello guys,
I have juvenile "ALS 4".

Since maybe 2015 I Started getting this pain mostly in my right lower jaw(in the gums). over the years it's getting worse sometimes affecting the tip of my tongue or my cheeks.

The pain is almost every day and it makes it hard to speak and eat/drink.

My neurologist thought it's trigeminal neuralgia so she gave me Lyrica and Carbamazepine. Carbamazepine didn't work at all and had major side effects. Lyrica works very little.

The only thing that seems to alleviate the pain is a topical mix cream of lidocaine 6% and gabapentin 4% which I got from a dental pain clinic.

With that said, that pain cream only provides 20 minutes of pain relief before being washed away from my gums.
Right now I am completely paralyzed so I rely on my caregiver to apply the pain cream for me. Lately some nights I cannot sleep from this pain.

Anyone experience such pain and have a different treatment for it?

I would appreciate any feedback. Thanks
Bass

 

[Nikki J]

I am sorry I wish I had a suggestion

for those who don’t know ALS4 is , as Bass said JALS, It is also an autosomal dominant form of FALS and generally slow progressing

 

[lgelb]

I am sorry to hear about your pain. At an academic dental center, you could ask about photobiomodulation aka low level laser therapy, which has had some good results in painful conditions, or an injection. It is also possible that a dental night guard used when you sleep might alleviate it somewhat.

Best,
Laurie