Excess mucus/phlegm

[TimTam11]

My apologies for posting in a new thread. Every thread I found regarding this issues said the I could not add further posts. My dad has bulbar onset ALS and his mucus and phlegm are out of control. He does do cough assist 3x a day, and it brings up mucus but sometimes I hear gargling in his throat so I think he's got gobs of phlegm in there as well, and because his stomach muscles are weak, he's not able to cough it out. I was giving him atropine 3-4 times a day and the respirologist but he was getting horrible cancer sores in his mouth (apparently this comes from dryness), and was told to stop using the atropine because I was drying his mouth too much. Stopping the atropine was supposed to help him bring up the phlegm, but it's not doing anything and now he has a lot of saliva. I did try a Mucinex equivalent that's supposed to loosen phlegm but dad has a feeding tube and I don't think it works as well through there? He's not able to take anything by mouth anymore. Any help or suggestions would be welcome

Thank you!!!

 

[Mana]

Did he get a suction machine along with his cough assist? My husband just started with trilogy and cough assist. The respiratory therapist who set them up for us also brought a suction machine. We haven't used it yet, but my understanding is that it would help with your problem. I'm sure someone more knowledgeable will soon add more advice.
-Mana

 

[lgelb]

Hi Tim,
This thread and the respiratory sticky have more suggestions. Mucus and saliva often keep company together, but there are some different approaches for each.

The drying agents should work fine in a tube -- that's how many here use them -- but as you've found, dryness can be irritating and counterproductive so prevention is usually the first approach to try. It is like, what would you do if your life depended on not using any tissues today? Try for a low-irritant lifestyle, because whatever the secretions are, PALS are less able to handle them. BiPAP settings, if too high or low, can play in as well.

Best,
Laurie

 

[Greeneyes]

My brother who has Bulbar onset ALS has a terrible time with getting his phlegm up. They have increased his tussin liquid through tube to 2x day. I have encouraged him to use his cough assist more. I don’t know why he doesn’t use it more. Also has a suction machine to help with saliva and phlegm. The Dr has talked about Botox injections to help with excessive saliva but at this time he wants to wait. Increasing water intake through tube can help thin secretions.

 

[Colleen15]

Hi, I have issues with mucus and saliva, especially at night. I take mucinex and atropine. It is just so scary that in bed I might choke on mucus or saliva, I get very little sleep. If I dont use atropine I drown in saliva. If I do use it, it works for a bit, but then my mouth is full of thick saliva, and I have to get up several times and clean my mouth out. How do you deal with night time?

 

[lgelb]

Colleen, are you using/obtaining a hospital bed so you can elevate your upper body? A BiPAP? Some PALS also use suction and/or CoughAssist before bed.

 

[Tomswife]

As others suggested, you need a suction machine. And, to get through the night, someone should be available to suction when needed. I was a CALS and often did this day or night.

My husband was also on a scopolamine patch late in his ALS journey. It does help control mucous. (I am not prescribing. Just mentioning another option to look into for severe mucous.)
Scopolamine is used to prevent nausea and vomiting caused by motion sickness or medications used during surgery. Scopolamine is in a class of medications called antimuscarinics. It works by blocking the effects of a certain natural substance (acetylcholine) on the central nervous system.

 

[Colleen15]

Hi, I do have a recliner in my bedroom that I sleep in. No bipap. I do use a cough assist in the morning. I also have a suction that I use before bedtime, but seriously could use it every hour at night and not sleep. I hate to wake hubby up with the noise. I do use paper towels at night to clean mouth.
Will talk to MD about scopolamine.
Thank you!

 

[lgelb]

Like all meds, make sure you check interactions on a site like pdr.net or drugs.com. Docs don't always get that far if they don't know everything you're taking.

 

[TimTam11]

Hi Mana, yes, we do have a suction machine. I'll see if using that more helps. Thank you everyone else for your comments, they are greatly appreciated!