Dry Mouth! Suggestions welcome!

[OzzieNick]

Greeting CLL comrades,

I am a 55 yo male who was diagnosed 16 months ago and I am in "watch and wait". Like so many of us I have fatigue, some insomnia, cramps etc. but my question concerns my dry mouth problems.

I sometimes suffer from and extremely dry mouth during sleeping hours that can become quite severe to the point where I can barely close my mouth or swallow without drinking first. The inside of my mouth swells up and it is very unpleasant. Interestingly I have never experienced this before about midnight and in every case it seems to go away by dawn at the latest.

But my questions revolve around the fact that this only happens about 1 night in 10 - thanks heavens. This begs the following questions:

What is it that brings dry mouth on some nights but not others? What I eat eg salt, MSG? Medications? Lymph node flare up? Bad karma?

Also, has anyone had success with dealing with this problem? I have some spray that helps a bit but all it really seems to be is slightly greasy water. It's called Aquae Dry Mouth Spray. It's a lot better than nothing but it only treats the symptoms, it doesn't stop the problem.

Anyway, thanks guys for any ideas you can offer.

Nick

[Newdawn Administrator]

Hi Nick, and a warm welcome (though it isn't warm in the UK at the moment!).

I'm interested in this too because I've had a similar problem with a dry mouth but maybe not to the same degree as you. But I'm also suffering from a dry eye condition and am going to ask my haematologist about the possibility of it being the auto immune condition Sjorgrens (pronounced Show-grens). I'm not suggesting that's what you or indeed I have but I have other associated conditions that lead me to suspect it (like bone pain).

A severe dry mouth can be due to the effects of certain meds, air con, blocked nose, snoring or a host of things. Strange yours only occurs 1 in 10 nights. Do you have any swollen lymph nodes externally that you're aware of especially under the ear areas? The reason I ask is because the only small swollen node I have is under the lobe of my ear and apparently, that's where the parotid glands are which regulate salivary output. And it affects me more towards the end of the day.

On occasion, like you, I've woken with a mouth like the bottom of a budgie cage! But my mouth doesn't swell.

Sounds like one for your doc and keep an eye on the dental situation too because constant mouth dryness can cause decay. Plenty of antiseptic mouthwash is a good idea. And a cold drink by your bed.

Hope you get it sorted soon and all the best for your ongoing W&W!

Newdawn

[OzzieNick in reply to Newdawn]

Hi Newdawn,

Thank you for your response. Sounds like you and I are on a similar page.

I have mixed results with my lymph nodes in neck and groin but they are normally fine but for the occasional flare up that can last as short as 1 hour up to about 12 hours. The groins can get quite nasty to the point where I cant really walk but that is quite rare.

Thanks for your tips re my symptoms. I guess a lot of this is trial and error for all of us. One thing I have learned about CLL is that it's different for each person.

Anyway, thanks again, and good luck with your journey!

Nick

[Pepper122]

My dentist put me on Biotene mouthwash.

[OzzieNick]

Thanks Pepper - will look into it.

Nick

[mgh348]

Nick, thanks for posting about your dry mouth problem. I occasionally wake up in the middle of the night with a VERY dry mouth but never connected it to CLL. I have a bottle of water by my bed to deal with it. Learned something new today.

Maxine

[OzzieNick in reply to mgh348]

Thanks Maxine. Hope your journey is going well.

[Cindy1462]

I too wake with very dry mouth and I'd always put this down to my acid reflux medication but maybe it's my SLL instead.

[Cllcanada Top Poster CURE Hero]

This needs to be discussed with your doctor...it might be node related, but it can cause complications and secondary infections in the mouth...

Like a car that continiously misfires, until you bring it to your mechanic... and it runs perfectly... transient situations can be hard to pin down... but need to be addressed.

~chris

[OzzieNick in reply to Cllcanada]

Thanks Chris,

I will add this to my list next time I drag myself to the GP!

Good luck with your journey.

Nick

[marcyh]

Hello Nick,

I, too, have dry mouth problems and use xylimelts each night, recommended by my dentist and available OTC at my local drug store. They are designed to dissolve over hours; I can get by with one but you can use two. It has an ingredient that works together with saliva and is specially designed to improve mouth health. Do you have dry eyes? I have been looking into autoimmune disorders and have discovered I have many of the symptoms and have had them for years. They fit well in the Sjogren's box but I don't have an official diagnosis yet.

All the best,

Marcy

CLL dx '06 watch & wait

[OzzieNick in reply to marcyh]

Thanks for your response, Marcy.

The xylimelts sound as if they are well worth a try. I do the same thing with a strepsil now and again and it helps.

I do have dry eyes now and again and use drops that are supposed to essentially be artificial tears. The seem to do the job.

Alas... our list of ailments seems endless but I'm sure it could be so much worse.

Good luck with your journey!

Nick

[jaysearch]

Hi Nick: You are not alone. I also have that very horrible dry mouth, and tongue. Also have the dry eyes (various drops seem to work for this. Unfortunately, I am a mouth breather (mostly at night), so this is really an issue. Maybe it's a sinus issue. My issues didn't start until I was already getting treatments, but the winter was the worst. I tried nose and mouth rinses, and a variety of other things to clear my nose each night, but nothing was totally effective. Should add this to my ever growing list of possible "side effects". Asked the Drs about it but they don't seem to have specific answers. Maybe better blood numbers will bring better breathing. Here's hoping.

[OzzieNick in reply to jaysearch]

Hi Jay. Just saw your reply. Thank you..

I have also found the docs pretty uninterested about this particular side effect. I guess we just have to put up with it?

My consolation is that it seems to come and go so I do get relief some nights. Hope that applies to you too.

Good luck with your journey.

Nick