Jump to content
ClusterBusters
nancymclaughlinwalter

Botox Sensitive Teeth/difficulty chewing

Recommended Posts

Hello, I've been dealing with CH for about a year now. I am fortunate to enough to have found out that I have been accepted into a Phase 3 FDA clinical research study but - double blind so still a crap shoot. I start on Friday.

I have been chronic stage since July 12th and am finding it difficulty to eat anything because it is a struggle to chew without the nerve pain being overwhelming. I am considering botox injections around the jaw since the medications don't seem to be effective in relieving the pain - thoughts, recommendations? If anyone has tried it - heard about it, please let me know - It is only $10 around here so it would be worth it if someone had good experience with it.

Share this post


Link to post
Share on other sites

Hi Nancy....WELCOME!

I have my doubts re botox being beneficial for CH...tho some have reported success. This seems a perfect case for pain relief whether CH related or not.....and $10!!!...for something that can cost thousands. I'd be camping at the clinic door...twere it me.........

Best

Jon

Share this post


Link to post
Share on other sites

I want to extend my thanks to you for enrolling in the trial. It takes courage. They will give you real thing on the next go around if you got the placebo, right? Please say yes!

I would be careful with getting the injections. Like use a doctor who is familiar with and treats CH. My neuro has offered them, but I don't trust that he has enough experience to do it. The nerve in the jaw is part of the trigeminal nerve that supplies feeling to the whole side of your face and head and ear. It has three main branches and numerous smaller ones. So, there is a lot going on. I know that Prednisone will calm or stop the pain if you take a taper pack for about 5 days. But I do not know if the trial will allow for that. Can you discuss this with the clinic doing the trial? They might be able to help you find a solution.

ATB

Share this post


Link to post
Share on other sites

Thank you Jon, I wasn't looking to treat the headache. I figured if the medicine the doctor was prescribing wasn't working it would be doubtful that Botox would. I thought that the injections might help with the jaw pain though. 

Spiny - I am all about the research as I am a researcher myself. Placebo or not I will continue on. I won't try the injections with any one that isn't licensed or experienced. I was looking to see if anyone had any experience with the injections and the nerve pain relief in the jaw area. My teeth are so sensitive, chewing on anything, even gum is painful. Brushing my teeth hurts so if Botox would provide relief in that area I would be grateful. I won't do anything without first checking with the clinical trial.

Share this post


Link to post
Share on other sites

Nancy...I get it...sounds like you do tooooo...we are rooting fer ya.....

I remember well that simply chewing gum was a trigger...and damn...it pissed me off....

Share this post


Link to post
Share on other sites

Nancy, I don't know of anyone who has tried Botox for the jaw/tooth pain. I have had that pain though. Or similar. It made my teeth feel like they didn't occlude properly anymore. I wound up sleeping on the sofa on my back for a week or more so that they did not hit during the night. Quite miserable. Prednisone is what got rid of the pain.

Share this post


Link to post
Share on other sites

I dont know if this helps....

I go for my second round of botox next week on 20th.

Its $1000 here....except its like 31 or so needles in my head not jaw...

Here is what they told me.

1st time injected, people have 30% chance of pain relief.

2nd time injected people have 50% success with pain relief.

But after 2nd dose, if no help. Don't bother as it wont work,

For me. my 1st round....my migraines got way worse. Could be a fluke but they did.

Im having botox for severe chronic migraines.

Im not sensitive to chew but extremely sensitive to smells, high pitch noises (not bass sounds but high tones).

 

Share this post


Link to post
Share on other sites

Thank you Jon, I wasn't looking to treat the headache. I figured if the medicine the doctor was prescribing wasn't working it would be doubtful that Botox would. I thought that the injections might help with the jaw pain though. 

Spiny - I am all about the research as I am a researcher myself. Placebo or not I will continue on. I won't try the injections with any one that isn't licensed or experienced. I was looking to see if anyone had any experience with the injections and the nerve pain relief in the jaw area. My teeth are so sensitive, chewing on anything, even gum is painful. Brushing my teeth hurts so if Botox would provide relief in that area I would be grateful. I won't do anything without first checking with the clinical trial.

All interesting things to consider. I think I might wait and see how the research study goes and if the jaw pain continues past that. I have no desire to be back on prednisone after being off of it for 18 years.

  • Like 1

Share this post


Link to post
Share on other sites

If chewing is a CH trigger, or you have trigeminal neuralgia, it may actually help somewhat.

I know that when my botox starts to wear off, about 2 weeks before it's time for my appointment, my teeth get really sensitive... They're sensitive anyways as I have TMJ disorder, and trigeminal neuralgia, but, they get a lot moreso without the botox. So it might be worth a shot? If nothing else, at all has helped, it might be useful. But as it was said, it would take at LEAST 2 rounds for you to find out for sure.

From some of the research, Botox over the long term lowers CGRP antibodies  and makes it so the nerve doesn't release it. Which helps with inflammation... But you'd need around a year of injections for that to happen I think?

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×