Botox for spasticity in jaw and mouth?

[rdmc]

Has anyone ever had botox for spasticity in their lower jaw and/or mouth?

I have a spastic tongue, had it for years. It was my presenting symptom 20 years ago, before the idea of MS ever came into the picture. Now we know it's MS, and always has been, because I have a lesion in the area of the lower cranial nerves that affect the tongue.

I've managed it for years with low dose benzos, Baclofen (I still take a low dose of baclofen even though I have a pump..but I take this for my jaw/tongue and upper body spasticity.)

The pain is only on one side of my tongue, but my speech has become pretty impaired. I used to be able to distract myself from the pain, but that's not working anymore, I've tried every neurogenic pain med there is, but they don't work because it's really not sensory pain, it's plain old muscle spasm/spasticity pain...so now we're looking into botox.

Botox had been recommended years ago by a neuro but all the 2nd opinions from other neuros I trusted said only do it when all else has failed. So I'm about at that point where I'm going to have to do something, or quit talking and chewing...that's what triggers the spasm. The caveat to just going ahead and doing it has always been, it could make the situation worse, speaking and swallowing at least.

I've had a swallow test, I've been to a speech therapist, and my swallowing is okay, some deficits, but okay. Speech therapist says there is nothing speech therapy can do for me.

But it's either going to be heavier pain med, no talking, soft foods only, or some other type of treatment, so botox is being investigated. I've been referred to the neuro in the practice that does EMGs, so I think that will be the next move just to see what nerves are firing and which aren't...I have fasciculations on the one side of my tongue that never stop and muscles of my jaw and neck have atrophied quite a lot.

Good news is: botox results only last 3 months, so eventually if it was bad side effects, they'd wear off. Bad news is: could I go 3 months without talking (i.e. it could make the speaking worse and my speech would become more unintelligible.)

It took me awhile to wrap my head around the whole idea of the pump...but this side of it, I was so glad I didn't listen to my own misgivings. So maybe this will be the same.

I'd love to hear from somebody who's had botox in that region and the side effects caused, specifically swallowing and speaking.

[Barrister16]

I have never used it for my jaw but I do use it for muscle spasms in my neck, head and upper back. I have been doing the injections for 10 years now. I never experienced any of the side effects. The first year I needed them every 3 months but then I was able to go longer in between injections. Now I only need them about twice a year. The Botox has been a miracle drug for me. I was able to stop taking zanaflex, I was able to lower my dose of Nerotonin from 1800 mg a day to 600 mg a day and also lower my Skelaxin dose.
I hope it works as well for you as it did for me.

[rdmc]

I have never used it for my jaw but I do use it for muscle spasms in my neck, head and upper back. I have been doing the injections for 10 years now. I never experienced any of the side effects. The first year I needed them every 3 months but then I was able to go longer in between injections. Now I only need them about twice a year. The Botox has been a miracle drug for me. I was able to stop taking zanaflex, I was able to lower my dose of Nerotonin from 1800 mg a day to 600 mg a day and also lower my Skelaxin dose.
I hope it works as well for you as it did for me.

Hey Barrister,

thanks so much for the reply. Knowing you've had Botox in you neck and head with none of the side effects makes me feel much better about Botox shots. All the warnings about swallowing, etc were rather daunting. Your post really helped me have a more balanced view of the injections.

[Grade1]

Tongue problems here too

Hello!

I have had stiffness in my tongue for ten years. However, the main culprit is most probably an operation I had done to my tongue right before. The injured muscle never recovered from the operation in the sense that I feel the area getting stiffer on its own. The stiff feeling comes and goes, on a daily basis usually. Years later, it has become worse. It has spread into the base of my tongue which nowadays feels like getting stiff, too. I tend to describe the feeling like what a man probably feels when he gets an erection, only that it's the tongue

I was diagnosed with ms soon after the operation. I think I had ms already before, but the operation and everything related to it was such a stress to my physical and mental health, that it triggered the ms to rear its head and I got the diagnosis.

Doctors think that the spastic feelings I have in my tongue can be both operation related and ms related or that it's impossible to know which one to blame or both.

I'm so happy to hear of someone else with this weird problem.

[mlissa67]

re: Botox

Hello,

I have suffered with jaw/mouth pain since April 2011, approx. a month after I was diagnosed with MS it started. It took my neuro forever (it seemed like) to finally diagnose me correctly. She was treating me for Trigeminal Neuralgia when I actually had Oro-facial Dystonia. The treatments are very different.

Anyway, long story short, I get Botox injections into my jaw (both sides) and scalp (covers the masseter muscles) every 90 days and have for years. It was life changing!!!

It was so bad that chewing food, chewing gum, laughing, or talking too much exacerbated the problem. Soft foods became a routine; my teeth hurt, my jaw hurt, which made my head hurt...until she realized I needed Botox to fix the problem.

As long as I stay on my 90 day cycle I'm good to go and I have a much better quality of life.

Good luck.

[rdmc]

Hi Grade1 and Mlissa,

I just saw this thread was "resurrected" and found your stories very interesting.

Grade1, mine feels stiff too, and it won't move. If they say stick out your tongue and say
"Ah"....I can't stick out my tongue, in fact the Ah sound seems to cause it to retreat more down my throat...but this is all one sided issues.

Update to the problem: I was sent to the dystonia, and botox neuro for his opinion. After examining me, he said there was really no fix because my tongue has atrophied on that side, and the muscles are too weak to make it move "right." That whole side of my face is not cooperative at all My lip droops and the face itself doesn't move (with the exception of my forehead...it moves, but evidently that's a different nerve that innervates the forehead. In fact, I believe the way they differentiate Bell's Palsy is if the forehead moves or not.)

If it wasn't for the strange sensations, and down right pain that I get when I overdo it (i.e. talk too much, eat something that requires a lot of chewing, or try to eat a thick sandwich or corn on the cob, for that matter)...I wouldn't be concerned about the cosmetic aspect...but it's the pain and altered sensations that drive me batty. They did up my nortriptylene and that did help some. I also take oral baclofen (I have a baclofen pump for lower body spasticity) and a small dose of Klonopin for the face/tongue issues. I really didn't think it helped much, but the other day I forgot and skipped a dose. I was trying to figure out why I was having so many problems with the area, and then realized I missed a dose...so the anti-spasticity, and muscle relaxer do help.

Mlissa, so glad you've had such great success with the botox. That's what I was hoping I could get, but the botox neuro said it probably wouldn't help and where he'd need to inject was the one place he had never botoxed in his career. He indicated the place that would need to be treated with botox would compromise my swallowing.

But I'm thrilled to hear it has worked for you. There's a youtube video on oromandibular dystonia, and the man (he doesn't have MS...just the dystonia) who did the video had great success with using a mouthpiece (looks likes a retainer) and eventually botox. It's a really interesting video...you can use oromandibular dystonia in the youtube search engine and come up with his story.

Thanks to both of you for sharing your experiences.