Throat and oral dryness

[BlaineL]

Recently joined this group, first post and question about oral and throat dryness and excess mucus. Apologies for the length! I’m hoping that if other new cases are out there searching this can be an easy place to find a bundle of ideas!

Mom diagnosed bulbar onset ALS 11/2020, mild symptom onset early 2018. Currently mid 70 years old, still mobile, PEG feeding only (not able to move any food/liquid orally, not able to swallow anything at all), cough assist and suction used multiple times daily, VPAP nightly, high humidity maintained in bedroom, recommended 2,000 ml water daily via PEG in addition to liquid formula, lollipop cleansing swabs as needed for mouth care. Currently on atropine and glycopyrrolate for saliva control but not satisfied with effectiveness; still too much secretion. Stopped riluzole due to side effects. Scheduled for first xeomin (botox alternative) treatment this week.

Big question… How do we reduce the feeling of DRYNESS in the mouth and throat? Between the saliva-management meds and inability to take liquids by mouth (drooling, aspiration risk, etc.) the dryness is interfering with her sleep and contributing to a chronic mild cough due to dryness and irritation. She's adjusted the amount and timing of the atropine drops but is still bothered by dryness. At the same time, excessive saliva is a continuing issue. Hopefully the xeomin injection will help with saliva but may cause even more drying of the tissues in the mouth and throat. If a body is being told to dry up… how do we combat that dryness in the rest of the system?

I have searched the threads in this forum and other places. Here is a quick summary of what I have read regarding symptom management. Any personal preferences or additions from the wise and more experienced to those of us less wise and less experienced? Many thanks for all the amazing posts and sharing of knowledge. We do realize that not all suggestions work for everyone. Sure wish there was a Welcome to ALS Handbook with helpful tips and tricks But, I guess that is why we have these forums!

I have tagged each treatment with S (saliva) M (mucus) D (dryness).

S – atropine
S - glycopyrrolate
S - Propantheline (Pro-Banthine)
S - Amitriptyline (Elavil)
S - Nortriptyline HCL (Pamelor)
S - Scopolamine (Transderm Scop)
S – botox
S - cannabis
M - Guaifenesin (Mucinex) (400mg 2xday up to 1200mg 2xday) (Is there any indication that longer term this is not good for your body?)
M - n-acetyl cysteine (NAC) (is this used differently than the effervescent below?)
M - Effervescent Acetylcysteine (PharmaNac) (Is this used differently than NAC above?)
M - Alka Seltzer or AlkaSeltzer Gold
M - Ambroxol (seldom mentioned in posts)
M - percussion vest (seldom mentioned in posts)
M - cough assist machine
M/D - nebulizer treatment (mucomyst and Ventolin and saline choride???) (Is this for use with trach? Mom does not have trach.)
M - eliminate dairy/gluten
M - eliminate use of Vit C (read a random post that some people notice mucus increase with Vit C, any personal experiences)
M - replace all filters and vacuum vents to reduce allergens
D – saliva substitutes/moisture spray/gel (XyliMelts, biotene, mouth kote, oasis,…)
D - room/house humidifier
D - stay hydrated

Sadly, our ALS clinicians seem to have an active approach to salivation… but have not been very forthcoming with solutions for mucus and most especially dryness. Once again, many thanks to all

 

[lgelb]

I'm not sure you can parse mucus, dryness and saliva like that. It's a continuum and you can't address all equally well, as you point out. To reduce dryness, for example, may actually stimulate saliva due to irritation. Some saliva is more irritating than other kinds depending on which muscles are affected. Some people are better able to deal with thin saliva/mucus mix which is where hydration comes in, and too much dryness can be irritating as you have seen. "The Vest" is generally used to loosen thicker secretions that are then further addressed using a CoughAssist or suction machine, but some people cannot tolerate any or all of those three devices.

I would add pineapple and papaya juices to the list as they may thin or reduce secretions. Also, though the VPAP machine filters seem to be on your list, I would include machine humidification adjustment, and making sure hoses and masks are new or clean.

 

[BlaineL]

Darn continuum : ( Thank you for suggestions. I'll check with Dad on quality of hoses/masks/humidity and filter.

Would you suggest pineapple and papaya juice through PEG since she is taking nothing orally? And would you normally consider juice as an equal swap to the daily water recommended by dietitian?

Once again. Greatly in appreciation of feedback!!!

 

[lgelb]

Yes, those juices are worth trying even in a PEG. They may need thinning with water so as not to get things too sticky.

Since I don't know how hydrated your mom is, I can't say if a swap is desirable, but theoretically, juice and water are roughly equivalent in that sense.

 

[Foodie1]

My mom tried Pineapple juice but since it’s acidic caused more acid reflux with her weakened diaphragm. Botox really helped but its always a push pull with my mom or it’s always a balancing act. if she was to dry then we would hydrate but then she would get to wet in the mouth etc.. Mucinex was the biggest help in terms of breaking things up we gave her three 400 mg a day spread out. Your list is very impressive

 

[BlaineL]

Thank you both for your thoughts. Feedback from personal experience is so very helpful and gives us an idea of what to expect... or maybe expect.