Mouth hanging open

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chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
Does anyone use a chin strap for just everyday use. My mouth hangs down so far, the only way I can keep it closed is to pinch my Lips together and that gets very annoying after awhile. My mouth gets so dry thru the day that the roof of my mouth peels. I do use the toothette things to moisten my mouth thru the day, but it just goes dry within minutes. I have biotene also. It's getting to the point that I don't want to go out cause people stare at the mouth hanging, I carry paper towels with me to cover my mouth as much as possible, at this point I would wear the chin strap if I thought it would work. Any suggestions?
 
Hi,

One of the PALS that attends to our monthly PALS/CALS meeting sponsored by our Local ALSA has this problem. She has mainly UMN involvement and very little atrophy.
Her mouth has that same problem you mention and what I've seen she uses to keep it under control is a chin strap as you mention.

I hope this helps.


NH
 
Some folks do have the mouth hanging open symptom. I think a chin strap would help. As far as dry mouth goes, could it be a medication that is causing it?
most folks with ALS have the opposite symptom, excessive drooling. My husband does not have open mouth syndrome, but he did have severe dry mouth after he was in the hospital, and on heavy duty antibiotics. He still occasionally gets dry mouth, and what works good for him is chewing on the candy Starbursts. He uses Biotene spray too.
 
A friend with ALS uses a neck support and his chin rests in a little 'cup'. Wonder if this would work. It is not an elaborate set-up. It is a metal 'tube' that is a large oval but is formed to wrap around under his jaw and and on top of his shoulders. it 'ends' on either side of his neck. His wife can just slip it under his chin and around his neck. Only takes a minute. I'll try to find a picture . . .
 
Well I do get Botox for the excessive saliva and drooling, which is helping. I can't chew anything, can't get my mouth to close at all unless I hold it shut. I do have the headmaster collar, which I find does nothing for the chin, and it cost me $120.00, and you can't return it. Guess I'll have to look into the chin strap, my RT guy is coming this month maybe he can help me out with this.
 
chris,i was offered botox for my jaw spasms but will only have them as a last resort.
Reason being is that it can cause significant weakness as a side effect.
Have you tried amitrityline for drooling ect.........other pals use it for this.
I do have weakness in my right side of mouth,when mouth is closed i will sometimes drool at the side or drink comes out. I have had a sore there on/off for some months due to this as it irritates that area.
 
chris,i was offered botox for my jaw spasms but will only have them as a last resort.
Reason being is that it can cause significant weakness as a side effect.
Have you tried amitrityline for drooling ect.........other pals use it for this.
I do have weakness in my right side of mouth,when mouth is closed i will sometimes drool at the side or drink comes out. I have had a sore there on/off for some months due to this as it irritates that area.


Only,

I had sore, at the corner of my mouth, caused by night drooling. It would heal, then crack open again. It was both painful and unsightly. A friend who is a dermatologist suggested I use zinc ointment - the kind for diaper rash - with the highest zinc content I could find. She said apply liberally.

The sore which had been plaguing me for months was gone in a few short days. I use the ointment as part of my nighttime ritual ever since, and it's been smooth sailing ever since.
 
thankyou for that tip elaine,will try it....i was using sudocream.
Yes like you it heals a bit then cracks open.......it is a bit of a pain.
 
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