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New member
Sep 20, 2006
North Vancouver
My mom was diagnosed with bulbar ALS in 11/03. She has a lot of problems with excessive saliva and had received radiation for it which was very successful and really the only thing that helped. Now she has more build up of saliva but we are getting another radiation treatment friday to help.

The realy problem now is that she is constantly biting her tounge which is extreemly painful. Her jaw will just lock over the tounge and we need to wedge tounge depressors in to release it. It happens several times a day. Has this ever happened to anyone? Any ideas to help? She is on baclofen & ativan to realax the jaw muscles but it is not stopping the tounge biting.

Any help you can offer would be much appreciated.

I wish I had some help for you...only sympathy as we are in the same boat. My husband gets wicked jaw spasms, and this weekend chipped a tooth and loosened his 2 front teeth from the intensity of them. When we use the suction machine to suction phlegm he always bites his tongue and he gets choking on blood in addition to phlegm, he also bites the inside of his cheeks. I cant do any oral care hardly at all as he cant open his mouth even, and he chomps down on anything I fit in there to clean his tongue with. I hope someone else can respond with some help. He takes baclofen and also inhales marijuana. The marijuana will relieve the spasms but is short-lived and then he needs to inhale it again, which is hard work because his lips dont seal well and his breathes arent strong enough to inhale well. We bought one of those plastic mouth guards that are supposed to protect them but he cant open his nouth enough and we are afraid to put it in there. I think others have used the mouth guards. I got one at online.
Good Luck, Beth
hi, i have had a few jaw clenching episodes... my acupuncturist showed my companion 2 spot on either side of the jaw that when pressed will unlock it immediately. thankfully i have onnly had to use it once as it is a bit painful, but it worked. there is a very tender spot wherre the upper and lower jaw come together, if u press in u will be able to feel it. anyhow press hard inwwards on both sides at same time.......... perhaps best to ask a dr or someone to show u where it is. certainly worth a try. hope i've expressed it fairly clearly. good wishes.
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