Old 03-18-2018, 02:06 PM #1 (permalink)
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Post tongue stuck - lock jaw

I just wanted to post what we went through yesterday in case anyone has this issue so you know what we did and hope that it might help someone else.
This is not something I ever thought would be a problem with ALS.

Last night my sister was in distress and we couldn't figure out was wrong, now my sister is on bipap machine 24/7, her vitals were not doing good but could not figure out what was wrong. This started about 7pm. Had to use the cough assist machine to help try and get some phlegm out cause she had some congestion. That didn't help much. after trying other things my mom realized that her tongue was stuck between her teeth. Her jaw was locked too. We couldn't pry her teeth apart to get her tongue out. My mom gave her 2 of her muscle relaxers and a Xanax thinking that if we could get her muscle to relax we could get her teeth apart. We tried a few times but nothing could get her teeth apart. we waited some more to try and let the meds kick in. I got an idea that we should rub her jaws, massage them to help loosen them up. I could tell it helped a little cause you could feel it loosening up a little, but still could not get it. We were about to call 911 as her tongue was turning black by this time. My mom got the idea to put her back in the bed so that she was at a slight incline back. Somehow this worked enough for my mom to pull her teeth apart just enough for me to push the tongue back in. This was such a relief. We did NOT want her going back to the hospital. And poor thing was in so much pain - can you imagine biting as hard as you can on the tip of your tongue and not being able to release it?! Like this disease is not horrible enough it has to give side problems like this!
Anyway, she fell asleep after that and is still sleeping now. I just hope that maybe this might help some other CALS that might come across this issue and some ideas on what helped us. It could have been one thing or all of them. But it worked!
Thanks for all the support I get on this site!
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Old 03-18-2018, 03:26 PM #2 (permalink)
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Default Re: tongue stuck - lock jaw

I've had pretty bad spasms in my jaw but I take Valium in the morning. Once the spasms got bad and I had to place a hot compress on my jaw, take some extra CBD oil, and massage my jaw with magnesium oil. Xanax doesn't have the same properties as Valium even though they are in the same class of drugs. Valium works much better as a muscle relaxant. I could never tolerate any of the other muscle relaxants but Valium just chills me out and allows me to relax.

Thanks for sharing. I'm so glad your PALS stayed out of the hospital. I will do that at just about any expense.
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Old 03-18-2018, 05:41 PM #3 (permalink)
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Default Re: tongue stuck - lock jaw

Heat is always worth considering in this situation. Besides a wrung-out hot wash cloth, there are small microwavable pads that are flexible, where the heat will last longer. It would not be a bad idea to have a couple on hand.

I'm glad you were able to help her, and sorry she and you had to go through it.
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