Recently, while just falling asleep my jaw clamps shut so unexpectedly that I bite my tongue. It doesnt happen during the day, just when Im so relaxed. I also have jumpy, jerking legs, but this happens during the day too which I can cope with. Ive been on carbamazepine and this seems to have settled down the jumpy jerking legs thankfully . Im wondering if anyone has experienced this and why it is happening. The side of my tongue is so sore this morning. Thanks Heather
Hi Heather, YES! I posted about this on the “old” board. In fact, your description was so similar that, for a moment, I thought: “How did my old post get over here?” It happens when I’m half asleep and half awake, and it’s almost like I know I’m about to do it, but by that time, I’m powerless to stop. I’m sure I’ll never prove it one way or the other, but I came to the conclusion it wasn’t the MS. To me, it doesn’t feel like a spasm (no pain, or cramp, or tightening), and I don’t suffer very badly from spasms anyway. I concluded it’s to do with the drugs I was on. Normally, when you’re asleep, there is a safety feature which means you’re effectively paralysed, and can’t go round acting out your dreams. I think some drugs mess with this. I was on codeine for musculo-skeletal pain. I’ve recently had to stop it for completely unrelated reasons (it was making me sick). Since then, quite a few other things I’d thought were “just” the MS seem to have gone away. The night-time “jaw-snapping” is one of them. Of course, it might be just coincidence… I haven’t been off the codeine long enough to be really sure it won’t happen again. It might happen tonight, and then my theory goes all to pot. But for the moment, no codeine, AND no jaw-snapping, so I think there’s a connection. Definitely worth looking at what medications you’re on. Although they won’t necessarily be things you’re willing or able to make do without, so you might have to put up with the poor bitten tongue. Do invest in a proper medicated mouthwash - the kind for sore gums or infections - not just the ones that make your mouth minty. It’s not a fix, but does help clean and sooth it. Tina
Thanks for your reply Tina. The only meds Im on are copaxone and carbamazepine. Im going to mention this to my neuro. when im due to see him in 2 weeks and let you know his thoughts. When it happens i have not pre warning, much like the jumping jerking arm, leg etc., it just happens and if Ihave bitten my tongue well it is sore and really wakes me up! I cant believe we are the only ones that this has happened to. Oh well, no 2 people are the same with MS, Ive learned that much! Heather
Thanks nez for your reply, nice to know Im not the only one. Going to look into getting a mouth piece fitted to wear at night.
I bite my tongue when I am asleep and also the inside of my cheek, but I now go to bed with cotton wool stuffed in my mouth.
That sounds awfully dangerous, Jaycie. Mightn’t you choke on it? If it’s happening that often, wouldn’t it be better to get a properly fitted mouthguard?
Hi Jaycie Thanks for your reply. Do you put the cotton wool between your teeth and cheek? Thanks Heather
Hi Heather Yes I do put it between my cheek and teeth, but like Anitra said it could be dangerous. I would not advise anyone to do this, but it works for me. I do it as I have tried a mouth guard and couldn’t get on with it. A mouthguard would be you best bet though I think. Jaycie x
Thanks Jaycie, I’ll see about the mouthguard first. When I see my neuro. I will mention this, it may be they want to increase my carbamazepine at night, who knows! The hard thing is it doesnt happen every night and it is so unpredictible! I know you cant blame everything on your MS but sometimes it is hard not to. Best wishes Heather xx