Major Saliva Issue

[Barryrub]

My wife has so much saliva during the day that she starts choking. She cannot swallow or cough it up. Shes taking all the typical meds for it and has had 3 rounds of Botox, all to no avail. It’s more manageable at night and she does sleep ok. Anyone have something similar? Any suggestions appreciated.

Barry Rubinstein

 

[joemz200]

We met with a radiation oncologist. The plan is to zap the gland. First step is tomorrow with a CT scan and building a “mask”. The Rutgers ALS clinic made the arrangements. FYI, Botox didn’t work for her either. Levsin resulted in some improvement but not enough. Joe

 

[lgelb]

Barry, does your wife have a cough assist or suction? Is she on BiPAP day and night, or only part?

When you mention the difference between day or night, I wonder also about environmental factors in rooms she isn't in at night, too, and diet.

 

[lisa g]

I too have a saliva issue. I take the glycopyrrolte tablets and atropine drops. I had multiple rounds of botox that didn't help. I also went the route with a radiation oncologist to have low dose radiation to the glands, which helped with the saliva but created a new problem, very thick mucus secretions in my mouth. I now am using the suction machine for this and am back to having a paper towel in my mouth to soak it up.
Not saying that this will happen to your wife but this was my experience alot of people have good results with either the botox or radiation. Hope it works for her.

 

[joemz200]

Lisa, we heard that thick mucous was a potential issue. Overall, knowing what you now know, would you have done radiation?
joe

 

[lisa g]

Yes I would have. Do you have a suction machine?

 

[joemz200]

we have one that hasn't been used since they day they delivered it . Groan. How often do you use suction?

Socially, are you able to go out and be with people without drooling, or has the thick mucous just replaced the drooling and there's no improvement in social life?

Can you sleep with the thick secretion?

 

[lisa g]

I used it everyday when the mucus started now I use mucenix twice a day and haven't had to use the suction machine for a while.

I stopped going out socially awhile ago, it was just too exhausting now friends come to visit me and are used to seeing me with a paper towel in my mouth. This may not happen to your wife, I'm sure that there are other PALS that can chime in with a good experience.
I use NIV at night and am able to sleep. I take the mucinex at 7:00 then take Glycopyrrolte tablet at 9:00 and right before bed I take 2 atropine drops under my tongue.

 

[joemz200]

Lisa, thanks. We're just back from the mask fitting and the CT scan. Radiation is on Christmas eve afternoon

I'm curious, I figured once radiation was done there's be no need for glycopyroite or atropine. Do they help with the heavy mucous?

 

[lisa g]

That would depend on how she responds to the radiation. I had mine back in June and now find that I need to supplement with the 2 drugs plus the Mucenix. It doesn't completely dry me out but it helps.

I hope that this gives your wife some relief. Please update us how it goes.

 

[joemz200]

Lisa. Thanks for providing real life experiences.

 

[ahl39]

My mother takes nudexta. Which seems to help with swallowing saliva. No longer have to use suction. However, it didn't improve speech though. We are trying to get her into the pridopidine expanded access since it is a more targeted sigma 1 receptor agonist.

 

[joemz200]

24 hours after salivary gland radiation. There's been no drooling, no pain at all, no other side effects. It's obviously too early to say that it's a permanent fix, but it sure looks promising at this moment.

 

[Marieb425]

My husband had difficulty with secretions. We didn’t try Botox or radiation therapy, but I would do suction machine (when needed - sometimes I could be suctioning for 30-45 mins when an episode happened), glycoprylate tablets throughout the day, atropine drops when needed during the day and before sleeping, and sometimes he would just resort to a paper towel in the mouth like Lisa mentioned. He also had a cough assist that we used as they recommended but I don’t know that it really helped him (advanced bulbar and respiratory involvement).