Sleep Apnea: Hi. Any CLL peeps out there with... - CLL Support

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Sleep Apnea

Gardengirl44 profile image

Hi. Any CLL peeps out there with swollen tonsils have to do the CPAP machine or mouth gear for apnea? I am feeling out options and both seem to stink to me. CLL is enough. I decided tonsils are staying in throat for now!

25 Replies

Hi Gardengirl,

This is probably unhelpful, but here's something I do that I read about last year in a fine little book called *Breathe*: I take a piece of soft, cloth-like medical tape and close my mouth with it (wearing the tape like a mustache, over closed lips, and down onto the top of my chin). I wear it all night, every night.

It stops me from snoring, and I actually sleep much better because of it. And it gets easier over time as the body adjusts. Helps to have a clear or half-clear nose, though. 🙂

Maybe check out that respectably researched book (author = James Nestor)? Just my two cents.

--Dave!

Gardengirl44 profile image
Gardengirl44 in reply to DRM18

holy moly I will definately try this. it can't hurt and I like the concept. at the end of the day I don't want to hurt my heart, so i'm gonna look into the medical piece but my hubby would love me to stop snoring!

DRM18 profile image
DRM18 in reply to Gardengirl44

Awesome! Lemme know if it helps at all. The type of tape is really important. I use Medipore Soft Cloth Surgical tape. My lips don’t escape from it (lol), & it doesn’t hurt when removed. Look into that book too; the author admits apnea can be caused by a number of factors, and that CPAP can be a life-saver, but that simple taping can nonetheless majorly help many sufferers. At least Google “apnea” and “Nestor” and “breathe”!

Gardengirl44 profile image
Gardengirl44 in reply to DRM18

ordered 2 books 1 for me and 1 for daughter... tx

DRM18 profile image
DRM18 in reply to Gardengirl44

Hope it helps! Keep me informed!

SlowCLL profile image
SlowCLL in reply to DRM18

Good read!

Handley profile image
Handley in reply to DRM18

Hi Dave - Sounds excellent, but I'm trying to get the picture. What is 'cloth-like medical tape'? Do you mean you use a strip of plaster to stick a piece of soft cloth (3 inches square?) over your top lip, and which then falls down over you closed lips to your chin? Many thanks - Handley

BluMts profile image
BluMts in reply to Handley

The type of tape I purchase and James Nestor recommends is available on amazon or most chemists: 3M Micropore Surgical Tape, Hypoallergenic, Tan,

( 2.5cm x 9.1m if you apply it horizontally keeping lips together. )(1.25cm x 9.1m if you apply a couple or more vertical strips keeping lips together.)

I have very sensitive skin and would only use this tape. The Tan colour looks less freakish that the white. I rub my normal moisturiser on before applying the tape but you'll have to play around with this .. it prob depends how dry or oily your skin is. I use the 2.5cm tape horizontally but James Nestor recommends the vertical.

Handley profile image
Handley in reply to BluMts

Many thanks for that. Defo worth a try! - Handley

DRM18 profile image
DRM18 in reply to Handley

Hi Handley,

I use Medipore Soft Cloth surgical tape. It’s perforated. I cut one perforated piece in half, then place one half on my upper lip, Charlie-Chaplin-mustache style, and flatten the rest out against my mouth and upper chin. Then I use the second half the next night.

That’s it!

BluMts profile image
BluMts in reply to DRM18

Hi DRM18. Thanks for that. I was born with a deviated septum in one nostril. I never breathed calmly till reading and applying information from Breathe by James Nestor. But I was not aware how much this affected me until after taping my lips at night, slowly both nostril began working properly in the day. My husband snored badly and had sleep apnea, reluctantly to please me he tried the taping of lips. He now sleeps like a baby and does not snore.

Many good Doctors don't like the lip taping and some say it's dangerous, so I cannot recommend it to anyone. Only give my experience. As James Nestor said, in my case it has resulted in me breathing through both nostrils during not just the night, but during the day when my lips are not taped. My chest and lungs have become more relaxed. My heart says thanks. I began lip taping while having many side effects from Ibrutinib. I think it helped me cope better.

Many Pulmonologists think the above is mumbo jumbo at best and I've read articles saying lip taping is dangerous. All I'm saying is that's not my personal experience. Perhaps for some it's worth seeing a doctor before trying lip taping as we are all different.

DRM18 profile image
DRM18 in reply to BluMts

Well sure. BluMts. I was just recommending the OP read Nestor’s book & explaining what I do. I’m not pushing anything on anybody. I’m also extremely leery of quack science & snake-oil pitches. But as you know, Nestor’s book isn’t really like that. It ends with almost 40 pages of detailed endnotes, after all. And I originally learned about it through a science-program interview he did on National Public Radio, of all places. All I was saying is, lip-taping is cheap, easy, I feel better in the morning, & my wife says I don’t snore anymore. But I guess I gotta reiterate that I didn’t have severe apnea problems to begin with.

BluMts profile image
BluMts in reply to DRM18

DRM18, hope you did not think I was ticking you off for recommending James Nestor and his information. I thought I'd backed up what you said and it was clear that you were giving personal experience only. . Only mentioned some thinking of checking medically first as I gave such a strong endorsement of lip taping and one has to be careful in telling of non-traditional advice .

DRM18 profile image
DRM18 in reply to BluMts

Absolutely! At the very least, I was originally asserting one should read Nestor’s book, not just listen to my little post solely. 🙂

Provence profile image
Provence in reply to DRM18

Thank you so much for this advice. I bought the tape and bought the book and find them both incredibly helpful. I have been doing it for a few weeks now and have noticed a striking difference. I used to breathe through my mouth during the day as well as the night. For months I have been having problems with a runny nose during the day, which I thought was mild sinusitis. This also prevented me from using my CPAP machine for apnea, since I did not want to make the 'sinusitis' worse! The amazing thing is, when I tape my lips my nose no longer runs! I have. now also started taping my lips during the day ( obviously not all the time, but for periods ) and when I am taped my nose is dry, but once I remove the tape it soon starts running again. Amazing! I now am thinking that I must switch from a mask that covers nose and mouth for the CPAP machine, to one that only covers the nose, so that I can still tape my lips and can have both a clear nose and an end to the ongoing problem of having a very dry mouth when I use the machine. I am hopeful that if I can keep going like this for some months I may effect some real changes and will get habituated to nose breathing. Thanks again!

DRM18 profile image
DRM18 in reply to Provence

That’s great news, Provence! Thanks for relaying it!

—Dave!

Right? it's crazy. people that I tell automatically tell me to stop because they think I am going to kill myself lol! I am so happy my mouth is lubricated when I get up in the morning.

I use a CPAP machine after being diagnosed with severe sleep apnea last year.My mouth is so dry I cannot move my tongue or even talk.

I also have a humidifier attachment to the machine after I informed the consultant of the problems but it's not helped.

Dave

that sucks that you are dry even when using pap. my tongue is sand paper.

Jonquiljo profile image
Jonquiljo in reply to teakbank12

Are you opening your mouth in the middle of the night? That will assure you of a dry throat. If you use a nasal mask you could easily be doing this. If I do, my wife wakes me up and tells me to stop.

teakbank12 profile image
teakbank12 in reply to Jonquiljo

Full face mask as couldn't get on with nasal mask.I don't panic so much in full face one.

Dave

janvog profile image
janvog in reply to teakbank12

IN REPLY TO DRY MOUTH : I fill two glass bottles (from empty Perrier Mineral Water. In all supermarkets) and put them on a heating pad at low temperature next to my recliner (I do not sleep on a bed), within reaching distance: As I awake during the night, due to dry mouth caused by C-Pap, I sip some of the warm water. It helps a bit, plus it is good for general hydration. I tried the C-Pap with heater humidifier but I can't stand the warm air. I tried "cold water overpass humidifier" and it had no relieving effect.

Teddo profile image
Teddo in reply to teakbank12

Dave--

I have used CPAP for many years. I have found that letting air in or out of my mouth dries my mouth out and at its worst is what you described. I think I will give the mouth taping a try as humidified forced air has not solved my problem.

I have an enlarged tonsil associated with my CLL. I use a CPAP machine. I have tried inclined pillows and sleeping on my side which both help to a certain extent. Taping the mouth seems like an easy solution but I am not sure how that helps if your breathing passage is restricted by an enlarged tonsil.

I was diagnosed as having severe OSA in 2019 and I started my BIPAP treatment shortly afterwards. My energy level and sleep quality drastically improved. I did not have any problem adapting to sleep with my BIPAP machine on. I use it every day, together with a belt bag filled with tennis balls on my back. The bag helps me to sleep on my side and reduce my AHI number. I recommend everyone to get tested for OSA and get CPAP treatment. I use a ResMed AirCurve 10 S machine with a heated humidifier chamber and a ResMed AirFit F20 full face mask. I am not sure about the cause of my OSA and whether it was related to my CLL. I was told my neck circumference was too small, which is a risk factor for OSA.

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