Excess Saliva

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Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
City
Leadore
I was diagnosed with PBP back in January of 2018 and it was updated to just ALS in February of 2019. Although I can't swallow or speak, the worst of this seems to be excess saliva. I have taken two drugs, a patch, and drops under the tongue. None seems to have helped including Botox shots given three months ago. I rely mostly on Bounty Paper towels to sop up this gross mess. Lately I'm choking lots and my mouth feels grainy since I can take no liquid by mouth. I'm wondering if any of you have had similar problems. Cloth handkerchiefs don't seem to control this like paper towels do, but I'm concerned that I'm maybe making this worse instead of better. Will appreciate any comments.
 
I’m having same problem. Mine gets foamy and feels gritty. I constantly carrying a box of tissues and just purchased flavored oral swabs which help a little bit. It’s getting difficult to brush my teeth because my mouth is having problems opening. My Doctor at Forbes Norris has me on Elavil at night to help with drooling. It does help some. It’s never ending and constantly using suction machine. It’s driving me crazy along with not being able to speak. Thank you for sharing Botox shots. Home Care nurse came out one day and suggested it but I’m not sure I want to do it. Hopefully,someone can give us advice.
 
Well, glad I’m not the only one! We go to UCSF because we share our time between California and Idaho. I too have a terrible time opening my mouth to brush my teeth! They did the Botox shots in SF. Will give them every three months. We are scheduled to get the 2nd shots mid May. They told me that they up the dose gradually to avoid an excessive dry mouth. I questioned the Botox shots as well. The neurologist at UCSF said that they are reluctant to give them to people who can still swallow and talk because it could be a problem. However I had a PEG in April of 2018 and can’t eat or swallow. I’m going to look for the swabs. Another something to try. I also reluctantly agreed to the Botox because 4 shots in my face was scary! No pain at all,
 
Are you sure it is excessive saliva? Normally we produce anything from 1 - 2 litres of saliva a day. We just constantly swallow it without noticing.

Botox is used as a last resort but a dry mouth can cause worse problems (hard to imagine I know when you have paper towel hanging from the side of your mouth).

The paper towels seems to work really well and won't make things worse.

Sometimes atropine drops can help dry the mouth a little. If you do anything to dry up saliva you will need your CALS to do really good oral hygiene to make sure you don't get problems from dryness.
 
Thanks, Tillie, didn’t even think of that! I take the drops, 2 drops, 3 times a day. That’s a little more than prescribed. I need the cough assist several times a day just to get rid of the saliva at the back of my throat which causes me to gag.
 
Google - dental wedge to keep mouth open

you will find several solutions
 
I drool all day. Then nights I have the worst dry mouth.

I'm experiencing problems from dry mouth and it's not fun. Almost welcome the drool!

very sore tooth being looked at today
 
Sure hope your dental appointment went well. I can’t even hold my mouth open for the drops on some days!
 
Kay, do you try Biotene or another spray before bed? Play w/ the humidity? Change hoses/filters a lot?

Idaho, have you tried pineapple or papaya juice in your tube? You're using a TCA like amitriptyline (Cureus mentioned Elavil, the brand name), right? And no, paper towels will not make saliva worse. We went through our share of Select a Size, tear off a half, fold in half.

Best,
Laurie
 
sorry for the hijacks

yes I do all Laurie suggested. Can't stop air blowing out my mouth at night which causes extreme dry mouth .


saw hygienist yesterday that says gums have receded causing root to be exposed. She is treating it, but was caused by dry mouth.
 
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