Mouth are

[Lizzie]

Do any of you good people have any suggestions for making the mouth more comfortable.
I have bulbar onset, have no voice anymore and take all feeds and fluids through my RIG. I regularly rinse my mouth with water and mouthwash, but I really struggle to keep it comfortable.
I’m dribbling all day then have a really dry mouth at night. I just wish I could find something that tastes fresh and reduces the feeling that my mouth is already dead. 🥴 Thanks in advance x

[matthew55]

I use glyco Bromide, xyilmelts and breath fresheners sprays.

[Mary C]

Hi Lizzie, dry mouth has plagued me for 18 months.
Neurologist suggested papaya.Others suggested pure pineapple juice, glycerine mouth swabs by optimum Medicare,biotene artificial saliva and mouthwash.Mouth sprays.
I have tried them all ..most gave short term relief.Everytime I wakeattime Ineed to sip water.
Just started saline nebuliser in mornings
I also use lip balms as lips dry and crack too.
Not found anything that works long term or even for a few hours.
Matthew swears by xyilmelts…but I didn’t fancy them stuck inside my mouth at night.
During the day I drink more so mouth less dry.
Good luck
Mary

[SallyAnnB]

Unfortunately Lizzie, I have no helpful suggestions even though I have suffered from dry mouth now for about eight years, long before I was diagnosed with MND. I have had endless GP and dental consultations about it and no-one has anything very helpful to offer. Like Mary I’ve tried all sorts of sprays and gels but nothing works for more than an hour or so. It’s interfering with my ability to use NIV at night. I requested, but have been refused, a humidifier, which I felt might help. I can apparently only have a humidifier if I can demonstrate that I can sleep with the mask on, so fat chance of that because of course the cold air instantly dries my mouth out. I wish I could make some sort of positive suggestion to help, but nothing has come my way so far. Sorry.

[matthew55]

I know I'm a broken record but xyilmelts really do work and using one at time means no chance of choking. Anyway anyone who knows me would know if they did I would take ten! 😉🤔😂🤗xx

[Ellie]

I can apparently only have a humidifier if I can demonstrate that I can sleep with the mask on,

Huh?? Do I read you correctly: you cannot use NIV all night because very uncomfortable Sahara mouth keeps waking you up, but you were told that you cannot have a have a humidifier because you cannot wear your mask all night?? Wow, that is the most ridiculous thing I've heard - they obviously have solved the great Chicken and Egg conundrum 🤨

What 'evidence' is being sought as proof that you can sleep with the mask on? (any room for necessary fibbing?)

I struggled for 2 nights with Arctic air somehow turning my mouth into the Sahara and my tongue unable to move to wet any part of my mouth. Emailed the Clinic on day 3, humidifier arrived on day 4. The laughable thing is that the water chamber costs a pittance compared to the cost of the NIV machine.

[Ellie]

I’m dribbling all day then have a really dry mouth at night.

I'm guessing you haven't found a medicine to cut down on saliva production? I know you've tried a few...

Do you use overnight NIV Lizzie?

I just wish I could find something that tastes fresh and reduces the feeling that my mouth is already dead.

I put 1/4 of an effervescent Vitamin C tablet on my tongue 2x daily for oral health and for the zing! I'm on glyco for saliva, so I don't have a mouthful of saliva when I take it. If you have even a short window of dryness and *IF* you think you can handle it, you could try a tiny bit to start off - don't do it with a mouthful of saliva or if your swallow is bad. xx

[matthew55]

I recommend large tissues. I should have shares in Kleenex. 🤑😂😇😍xx

[Lizzie]

Thanks for your replies.
Ellie, you’re right I still haven’t got any relief from the saliva issue, but I haven’t had glyco yet ( does that help with clear mucous too?) , and I also like the vit C idea. Thanks 😊

[Ellie]

I haven’t had glyco yet ( does that help with clear mucous too?)

No, it doesn't thin mucus, Carbocisteine does - keep well hydrated and you can try putting a glass of pineapple or papaya juice through your tube daily. xx

[SallyAnnB]

Ellie I know, it’s bonkers, isn’t it? I would buy my own but I have a very old Nippy 3+ machine and am not sure how to ensure a fit.

[Ellie]

I would buy my own but I have a very old Nippy 3+ machine and am not sure how to ensure a fit.

The Nippy 3+ is obsolete now, so they're gradually switching users over to the Nippy 4, but who knows when yours will be done... I got mine a few months ago when my internal battery wouldn't hold a charge - don't suppose yours is caput?!!

The Nippy 4 has an integrated humidifier, woohoo, but the one used on the Nippy 3+ is the stand alone Fisher & Paykel HC150 heated humidifier but I've a feeling they're also obsolete here - you might be lucky and find one on ebay, but make sure it will work in the UK. The US ones won't work here or may work with a transformer.

I sent mine back about 6 weeks ago thinking, well, that's useless now 😱😱😱 Sorry!

Now that I've said that, I wonder are they fobbing you off by saying what they said because they don't have any humidifiers 🤔 You should chance your arm and ask for a Nippy 4 xx

[SallyAnnB]

Ellie Now it makes sense! The nurse who came out to visit me muttered something under her breath about cost, which didn’t make a lot of sense to me because on the Resmed website, a stand-alone humidifier isn’t that expensive, but if the department has none left and they have to buy all new equipment, they may have run out of money at this stage in the financial year. Unfortunately my Nippy seems to be in good shape at the moment, but now I’m in full possession of the facts, I know what to push for. Thank you for the information.

[Ellie]

SallyAnnB You should not have to go without though 😟 See if your Consultant can magic one from somewhere. xx