Extreme dry mouth?

[Buckhorn]

Hi all. My PALS is experiencing severe dry mouth that does not go away during the day. He is not taking any medications to decrease secretions. He is not taking antihistamines, etc. He has become a severe mouth breather overnight, in an attempt to get more oxygen. I have purchased Biotine mouth rinse, spray gel, lozenges, etc. for him. He says they definitely help but nothing lasts. I have asked him to make sure he is drinking enough fluids - I push fluids on him! He does not complain of thick or ropey mucus (as I have read on here that many PALS have). He does not seem to have any bulbar issues yet that I can notice (I have had him do many lip/tongue/swallowing techniques and see no problems). He is having trouble swallowing anything that has a dry texture, like meat or bread, but he says it does not feel like he can't swallow, it's just so dry....... I remind him to take tiny bites, provide plenty of wet/slippery food options (apple sauce, fruit cups, pudding), etc. He occasionally chokes on thin liquids if he swallows before he lowers his head.

Anyone have trouble with extreme dry mouth not remedied by increasing fluid intake and not on meds to reduce saliva?! TY!

 

[faithandlove]

I have been experiencing severe dry mouth, but I was told it was because of a medication I take for my bladder. Also, I have not received my trilogy yet. So, I'm not much help here, but I'm replying because I wanted to tell you what a good job you are doing for your PALS. I was impressed by all the steps you are taking to help him. He is very lucky.

Hugs,
Deb

 

[GregK]

I hope he is soon going on bipap.

Biotene works for an hour or so, but I've found that Xylimelts discs work for overnight.
They also work while awake. They 'stick' to your gums so you don't swallow them.

They're on Amazon or CVS.

 

[Nuts]

My PALS had a bout of severe dry mouth and ear ache recently and it turned out to be mumps, of all things. Not everything is ALS (although I'm sure ALS is why he contracted mumps at this stage), so you might want to get him checked out.

Becky

 

[bigmark1954]

My mouth has been drier than a popcorn fart, since I started my regimen of meds. It gets so bad that I start coughing and choking sometimes, drinking will only help for a while.

My remedy for this is sucking on cough drops several times a day. I use them maybe 3-4 times a day, and have them available at all times. It helps with the production of saliva, while easing the throat. I think it helps break up the mucous in the throat as well.

Lastly it helps remedy and mask bad breath associated with dry mouth.

 

[Buckhorn]

Thanks everyone...... Big Mark - ("My mouth has been drier than a popcorn fart") - thanks for the laugh!! Is that a Utah saying? My brother lives in "Utarh", and he told me that one once too! I will try Xylimelt discs; can't hurt to try! Dave has no other symptoms - no drainage down the back of his throat, sore throat, fever, etc., and the only new meds he is taking are Riluzole and Coumadin (due to a saddle PE in April).

 

[Vincent]

I've been having trouble with this recently due to a new drug. My neighbor who uses fentanyl for pain has the same thing going on. Her fix? Sugarless gum. I tried it today and it works. Not only that it's pleasant and low tech.
Vincent

 

[GregK]

I tried gum

Choked from my own spit ...

 

[Buckhorn]

Yes, I tried to get Dave to use chewing gum, but he has never been a fan of gum. It does usually cause most people to produce more saliva.

Also, I forgot that Dave is on another new medicine - Xanax/Alprazolam, which I have read causes dry mouth. He started taking this just occasionally for anxiety, but his anxiety has gotten much worse as his breathing has gotten worse, so he has been using the Xanax more. I will have to ask him if he feels the dry mouth has gotten worse with Xanax usage.

 

[GregK]

Again, is he going on bipap?

Actually being able to breath helps with my anxiety.

 

[Buckhorn]

Sorry Greg. Dave has a Trilogy machine that was just delivered last week. He has only been able to use it overnight once and for a nap once. He is having trouble adjusting to it but is trying.

 

[affected]

Bucky what is his problem adjusting to the trilogy?
If you can describe then Laurie may be able to help with some adjustments on the settings that may help him as it may not be him that needs to adjust

 

[azgirl]

My mouth was so dry it was scary, with tongue stuck to the roof of my mouth. We run a humidifier every night, use Biotene, and a chin strap while sleeping. That chinstrap is what helps the most.

 

[GregK]

Azgirl, if you come across the Xylimelts give 'em a shot. Beats the hell,out of Biotene.
I suspect the chinstrap is key, once the mouth starts 'leaking' things go sideways.

 

[Buckhorn]

Hi Tillie/all. The problem with the Trilogy is anxiety I believe. Dave has always been a bit high strung/anxious, and now that he is physically disabled he has no physical outlets to burn off the anxiety (working out, brisks walks, mowing uphill, LOL!!), plus he has always been a very light sleeper. I think that the very large, high profile design of the full face mask was quite intimidating to him. Like many PALS, this whole thing is a big as@ freak-out for him! He was so fit and strong and competant, and now he is relying on a machine to help him to breath. I can't really comprehend how that must feel .........

At this moment, he is asleep with the Trilogy on (yeah!!). I asked him to wear it while we watched some t.v., and he has had some wine and earlier a Xanax!! We won't give up easily, and I have tried to make him understand the Trilogy is his friend and his best chance for a longer survival. I have asked him to name "her" and understand that this machine is not an enemy.

Although the Trilogy is unlocked, I will not mess with the settings that his RT has set. She is a real gem - I trust her completely. She will show me some adjustments I can make down the road, but for right now, lets just say that these adjustments are best left to a respiratory therapist/professional. The Trilogy is more sophisticated than many people realize, and there are several circuits & interfaces (masks/nasal pillows) that can be used depending upon what works best for the patient. I stumbled upon a "Trilogy workshop" web-page on-line and it is quite revealing in exactly how complex yet versatile the Trilogy can be, depending upon "plumbing" / circuits, interfaces, etc. Our RT will show me down the road how I can adjust some settings, and I am comfortable with that. I feel that we have a real rapport with this RT, and for now at least, we will not change her settings.

Also, at least in PA, the neurologist sets the parameters he wants the RT to use. Dave's prescription from the neuro was for "assist/control or pressure control". The RT explained that she used a "Avap-PC mode" because it is more sensitive to the patient. She also told me that AVAPS automatically adapts pressure support to patient needs to guarantee an average tidal volume.

Dave is also a bit claustrophobic, and the full face mask did NOT work for him. Right now he is using an Airfit P10 nasal interface. Another one that was considered was the Nuance Pro, although I think our next step would be the one of the "hybrid" style masks. He has not used the chin strap yet, as I think a slow introduction & as low of a profile interface as possible is good for right now, although I know the chin strap will improve the O2 level entering his system and also decrease dry mouth. One step at a time .....

I went out and bought some Xylomelt discs and some pocket spray moisturizer that also has Xylitol as the major ingredient.

Thank you all for your input and support. I am so glad we can share and help each other here!