Worried about A movement disorder ? Please help any docs about ?

[Lkakpk]

So bit of background. I am under neurology for chronic migraine/new daily persistent headache and a few other headache syndromes - I’m literally a walking headache !
Recently ,was on amitriptline for this reason and developed involuntary jaw movement - my jaw will just randomly snap shut and I will at times randomly bang my teeth together .
Almost like a teeth chatter ,whenever it happens I’m either talking or relaxing so I know it’s not a stress thing .
Asked a dentist about it and they just looked perplexed and made me a mouth guard . This was no help .
I then read amitriptline can cause movement disorder so I came off the drug , it’s now been over six months and it’s still happening .
what do I do ? Can’t help but worry it’s a Movement disorder and terrified it’ll get worse but everyone I explain it to just looks at me like I’m crazy ?!
It doesn’t help that last year I started twitching and seen my neuro who said it was benign and can be caused by stress ( I was pregnant at time )and so now everyone just thinks I clearly must be stressed and it’s a Stress reaction . Has anyone got any experience of this and any idea what it could be ?
so worried !

@OP i can't comment on the Amitriptyline angle but I've had this same problem for a while now and it's led to biting my tongue really hard on a few occasions and hurting myself really badly. I'm very conscious of it and now when I'm relaxing I try to move my tongue completely away from my teeth (quite hard!) to avoid chomping down on it suddenly as it has led to a massive tongue canker sore on one occasion that took a while to heal. I'm not on Amitriptyline or any medication for that matter so yours might not be related to that at all. The only thing i can link it to is it started after months of chewing gum everyday. It as if my jaw has forgotten I'm not chewing and just shuts suddenly on it's own. I'm still keeping an eye on things.

@Tonty I’m exactly the same ! I bite my tongue too and have done it a lot more during eating too . Have you spoke to a doctor about it ? I feel like when you tell people they look at you like you are crazy !

Do you know, it never even occurred to me that it was something pathological to see a doctor about? and this is the first time I've mentioned it to anyone either in rl or online. I just put it down to constant chewing. last weeks bite was so bad i was drooling from the pain and couldn't eat properly, all healed now. Not sure what can be done about it really but it keeps happening. It's usually as you said when relaxing or about to fall asleep.

@Tonty it’s very strange isn’t it . People have said it could be a tmj issue but surely that wouldn’t cause involuntary movements . It’s just very unsettling so I sympathise with you as it makes you so conscious of something you would never normally even consider !

I don’t know what it is but I have TMJ and do not have this so I don’t think it would be linked to TMJ

As you said, it is very unsettling and one constantly has to think about where ones tongue is and how to avoid the teeth which in a way is quite amusing to an outsider but incredibly pain to the sufferer when the biting happens.

@Tonty let me know if you manage to figure out the cause !

@Ivebeentogeorgia I have tmj too and never had it before so I doubt it also but apparently it can cause jaw tension so could create spasms so who knows

@Lkakpk Likewise!

@Tonty will do