Looks like my only option for this saliva problem is Botox. Pros/cons from someone who knows?

DW96

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Jul 15, 2021
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PALS
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06/2021
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US
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IL
Have already tried amitriptyline and the under tongue drops (eye drops) and the other Glycopyrrol, nothing works. Still saliva pools under my tongue and spills out my mouth. I sit there half the time with a paper towel or Kleenex in my mouth or wiping constantly. They set me up for Botox when I go to ALS Clinic the week after next. Need to know if this is going to work? Pros? Cons? From someone who knows firsthand please, thanks!
 

Firefighter58

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Jun 21, 2016
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651
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PALS
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CA
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ON
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I got a proscription from my neurologist that worked fine but I can't remember the name of it.
 
Last edited:

DW96

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Jul 15, 2021
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PALS
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06/2021
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Yeah prescriptions aren't working :(
 

Believer

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Sep 2, 2021
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TX
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GRANBURY
My PALS got botox injections. He thought they would work immediately but it was probably over a month before he realized how much difference they had made.
 

AMAMP

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My mom got Botox for her excessive saliva and it completely prevented her from being able to swallow..it also created a new thick sticky saliva that she would choke on and had to use a machine to suck it out bc her swallowing was gone. ..her botox has since worn off and the normal consistency saliva has returned but so has some of her ability to swallow..she is so much happier to deal with it now.
Hope this helps!
 

DW96

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Jul 15, 2021
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Reason
PALS
Diagnosis
06/2021
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US
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IL
That's what I am worried about is the ability to swallow or have no saliva at all :(
 

Ann Marie

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May 2, 2022
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CALS
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02/2022
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US
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MA
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Waltham
So glad to find this tread. Glyc failed and put him in heart failure- Scapolomine, he went bezerk and urine turned DARK amber and couldnt pee more that 2oz, Im afraid, now they want botox, think we are going to pass
 

suziQ

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Joined
Oct 30, 2021
Messages
29
Reason
PALS
Diagnosis
10/2021
Country
US
State
MI
got Botox injections 8 days ago so far no changes good or bad
 

MadCybertist

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Lost a loved one
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Ask about radiation. With my dad we did radiation which helped him massively. They basically they did extreme radiation via essentially an X-ray type machine and put it up to his face to kill the salivary glands. Was a good success for him.
 

jmbaker3

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Aug 1, 2020
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PALS
Diagnosis
01/2021
Country
US
State
MD
City
Edgewater
I got it twice. Regret doing so. Created stringy sticky mucus. Second time doctor said he would try different location… not much better. Just going to deal with it now.
 

DW96

Active member
Joined
Jul 15, 2021
Messages
32
Reason
PALS
Diagnosis
06/2021
Country
US
State
IL
just going to opt not to do it. dont want to risk not being able to swallow or the other side effects people mentioned.
 
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