botox treatment

[Dulci21]

Does anybody have any experience of Botox injections for the treatment of TMJD?

This has been suggested to me today by a health professional at my local hospital to relieve stiffness, spasms and pain in my jaw but because I have FND I am concerned about possible consequences. (I am UK based and so this is being offered on the NHS.)

I would be interested to know whether there is comorbidity between FND and TMJD.

It would be good to know about side effects of Botox with FND given that it is a neurotoxin.

Any help or advice would be very much appreciated. Thank you.

[Shimmyaway]

Hello, Whilst I can't offer any experiences of botox, I do know that a well known neurologist called Mark Hallett, who also investigated FND did a lot of work on the TMJ in FND, i haven't explored this myself, but would be interested in your findings, as I too have a lot jaw spasms, along with jerks affecting all the right side of the body. ..botox not an option! I hope you can benefit from his findings. Best wishes .

[Dulci21 in reply to Shimmyaway]

Hello, very many thanks for taking the trouble to reply. I am familiar with some of Mark Hallet's work and will aim to find what he has to say in relation to TMJD.

I am sorry to hear that you have trouble with jaw spasms and jerks. All these various symptoms with FND can be very trying can't they!

You say that botox is not an option in your case. I wonder if you would be at all willing to explain why that is. I will completely understand if you do not want to give any further information.

Many thanks again and very best wishes.

[Shimmyaway in reply to Dulci21]

My GP mentioned botox once fleetingly, but dismissed it , (and I agree ) as there is no part of my body except my arms that does not shake, so not a viable solution. ..and no other solution being currently proposed. Good luck with the research.

[Dulci21 in reply to Shimmyaway]

Thank you!

[Birdr]

Re Botox. I had Botox for Migraine in 2015. I had a very severe reaction and was extremely ill afterwards. I wouldn't recommend it to anyone. The consultants recommend it all the time but it effects the muscles and the chemicals in the area and more so very badly. I think it would be a bad thing to put what is known as a poison into your body where FND is already there. After my Iatrogenic reaction I had the feeling that if the botulinum A pattern of injection - migraine pain protocol of say 20 plus injections in scalp and neck could have effected the muscles in my heart and caused me to die. There are other ways of helping with neck pain. Wishing you well.

[Dulci21 in reply to Birdr]

Hello Birdr, thank you so much for your reply. I am very sorry to hear that you had such a bad reaction and appreciate your words of caution.

The more I read and hear the more this seems as if it would be a bad idea....as I suspected!

Thank you and take care.

[Birdr]

Apologies Typo -brain chemicals.

[Birdr]

Ps. For TMJD physio can really help. If the trigeminal nerves are also effected, which usually also common in FND then a referral to facial specialist may help.

[Dulci21 in reply to Birdr]

Yes indeed! I have very bad Trigeminal Neuralgia and the referral that I had was for the trigeminal nerve problems as well as TMJD. I was seen at a Maxillo Facial specialist unit.

I will look into the possibility of physio for all of this.

Thank you so much for your suggestions.

[Van604]

Botox is used a lot for dystonia and Parkinson's. The company sponsors neurology conferences etc and many doctors like to recommend it. I had it twice in my calf for my foot dystonia (a symptom of my FND) and it had zero positive effect but weakened the muscle and I sprained my foot! My physio recommended that I didn't get it again. Even the neurologist who gave it to me warned me that it is a neurotoxin so you shouldn't have a lot of it. I also had TMJ some years ago and my dentist recommended me to a massage therapist who specializes in it which was very helpful and less risky.