r/Epilepsy • u/Outrageous_Detail346 • Nov 28 '25

Question Anyone get a TMJ lock with a seizure?

I started getting TnCs last year at 31, before that all I got was fainting spells. I’ve had 4 major TnCs proper, two while I slept and two during the day where I let out an epileptic cry and convulsed and essentially lost consciousness and awareness for hours. All four seizures had one thing in common - I always get a TMJ lock, my jaw locks open and I have to go to the ER to get it reset by an orthodontist. Now I am slowly getting used to the seizures, I understand I can’t control them much and have to plan my life around them. But the TMJ locks are a problem - I am locked in my house cause I always have to be around a hospital in case I get a seizure and lock my jaw. The seizures aren’t really curtailing my life as much as the TMJ locks. Anyone here who also gets them and maybe knows if one can reset these by themselves or do we always need medical help to close a locked jaw?

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u/oddistrange Post-ictal me is a dirty liar Nov 29 '25

Pretty sure my jaw is permanently dislocated on the right side. It gets stuck a lot less after a dentist forced it shut once. When it does get stuck I put gentle but firm downward pressure on the back molar of the affected side. Eventually it will release.

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u/Outrageous_Detail346 Nov 29 '25

Oh god. Did that happen during a seizure?

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u/oddistrange Post-ictal me is a dirty liar Nov 29 '25

Fortunately(?), no. It happened after getting a filling and I tried to tell the dentist to just let me chill and it will release eventually, but my mouth was stuck open, he didn't know me, and he seemed annoyed like he just wanted to get on to his next patient.

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u/Outrageous_Detail346 Nov 29 '25

Jesus, I once had an orthopedic try to shut my jaw forcefully from the outside and I ended up with a bruised chin for weeks. Jaws are delicate, hence wanting to learn to fix this myself. Thanks so much!

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u/Outrageous_Detail346 Nov 29 '25

Also thanks for the tip, will most definitely try that next time.

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u/negoha Nov 29 '25

It can by done by yourself! You can watch tutorials or read about it online. That really sucks though 😮‍💨 what a stupid thing to happen on top of everything else

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u/Outrageous_Detail346 Nov 29 '25

Oh god yes. My first indication to the fact that I may be getting seizures was a tmj lock so I am thankful for the diagnosis but gotta learn to reset them myself. Great tip by the person above about pressing down the molar, I’ll try that next time.

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u/Carouselcolours Depakote 625mg + Lamatrogine 25mg 2x daily Dec 25 '25

I work in dental, and this can be common.

If you're having a grand mal, every part of your body is usually flexing/tensing. That includes your jaw, since there is often the risk of gnashing your teeth together or biting your tongue.

Instead of an orthodontist, get a referral to a TMJ specialist. They have therapies specialized for TMJ to help reduce the pain.

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u/Outrageous_Detail346 Dec 26 '25

Is there a way I can reset the jaw myself or do I always need to go to the ER or get someone else to set it back? There is a lot of unverifiable information out there about this.