CPAP Intolerance

Mine was set to run from 8 to 18 and it was always at 18 when it woke me up. When I press the ramp button it drops the pressure to 4 and works up to 8 and up as needed. I ended up learning how to tweak the settings myself also and set the high end for 12 which was where I was getting my best numbers earlier.

The chin strap never worked for me and I tried several different ones.
Some things I have done that have allowed me not to have to use the CPAP mask:
1. Elevate my head on the bed with 2 medium thick pillows or 1 fat 5 1/2" thick pillow. You can put books under the head of the bed to elevate it. I have one of those sleep number beds so can easily elevate the head. I try to keep it as high as possible w/o being in an awkward position and hurting my back.
2. Put pillow under my knees to keep my lower back from hurting from sleeping w/ head elevated.
3. I'm a back sleeper and uncomfortable on my sides or stomach but try sometimes to sleep on my sides which is definitely recommended for apnea
4. I have always been a mouth breather at night since childhood. Was desperate to find something that would keep my mouth closed and tried several different tapes that pulled skin off my face.

On Amazon I found 3M Micropore S. The 1" high is 2770-1 and the 2" high is 2770-2. Both are 5.5 yds long. Last time I ordered, they only sold by the box w/ 12 rolls of the 1" size and 6 of the 2" size. It does not pull the skin off around my mouth and sometimes I even use the 1" size on other parts of my face to "iron" out little wrinkles while I sleep.
I use the 2" high for my mouth. After I apply I blow out to see if there are any areas that are loose - if so, I put some 1" tape on those areas.
I use Snore Lab app on my iphone every night and get a snore score every morning. The score represents the amount of time I spent snoring after I have deleted all noises that werent snoring - the app shows me EVERY sound EVERY SECOND I am sleeping including my husband getting up and showering.
It is easy to listen to and delete sounds that obviously are not snoring. I've done it long enough, that I can delete nonsnoring events just by looking at the results. When you snore, it looks very different than if you make a noise turning over, or someone rings the doorbell, or any other noise that occurs during the night.
Often my scores are between 0 and 3 which are low and GREAT so I dont have to use the CPAP. Snore Lab says score of 25 is Ok but I dont think so.
The app has helped me notice that often the interval between snores is very regular, like 4 seconds between each snore. I am trying to find a technician type who analyzes sleep studies to see if that indicates normal snoring or obstructive apnea snoring. I dont yet delete that regular interval snoring from the daily results and still get very low result w/ mouth taped.

PS - A dentist who specialized in oral devices made one for me and I used it for a long time, but I kept on getting cuts inside my mouth from the metal pieces on it, had to put special band on it to try to keep mouth from opening which didnt work that well and results were not as good as w/ the tape. Once the dentist got paid for the appliance, he wasnt that helpful. Also worried that if I kept on adjusting it to make it pull my lower jaw further forward, I would get TMJ. Hope this is helpful and clear. I just joined so not sure if I can give you my email address for questions - let me know if you know if I can. I will look for a Reply just in case you do reply.

Welcome @csherman66, Thanks for sharing such a detailed experience. I am still using a CPAP and I also elevate the head of my bed, as well as use a small pillow under or between my legs depending on how I'm sleeping. Sleeping on my back makes things much worse for me, so I have a lot of movement at night, side to side switching with some time spent on my back depending on if I'm having pain in my back or side.

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I've tried the mouth tape too, even the stuff that doesn't rip your skin off 🙂 but it was just too uncomfortable for me. I don't think the Snore app would help me but it is an interesting treatment and one of those that may hold a lot promise for those with obstructive sleep apnea. From what little research I've done on the topic, it sounds like there is no scientific consensus on how to measure and define snoring. It would be interesting to have a sleep study done while using the same setup and the sleep app to see if the results are comparable. I had 55+ OSAs in my sleep study at Mayo.

Here are a few of the research papers I found from 2023:

"Numerous studies have investigated both obstructive sleep apnea and snoring. However, the methods of measuring snoring and snoring-related concepts vary across studies. To understand the pathophysiology underlying obstructive sleep apnea and address sleep-related diseases, consensus in the academic community on how to measure and define snoring is required."
--- How to measure snoring: A systematic review: https://www.researchsquare.com/article/rs-2399908/v1

"The development of these apps and devices has a great future, but today are not as accurate as other traditional options. This new technology offers accessible, inexpensive, and continuous at home data monitoring of obstructive sleep apnea, but still does not count with proper testing and their validation may be unreliable."
--- A systematic review of smartphone applications and devices for obstructive sleep apnea:
https://www.scielo.br/j/bjorl/a/nsjKzkhkYbFLSfw7XFFjZBR/.

You mentioned you do not have to use a CPAP. Have you been diagnosed with a type of sleep apnea or just figured out how to reduce the snoring?

Have you or anyone else considered trying INSPIRE the new CPAP replacement procedure? I am considering it because of similar difficulties.

Hi @tobyivey, I have not consider the Inspire but there is another discussion where members are talking about the Inspire device.
--- Inspire Upper Airway Stimulation: https://connect.mayoclinic.org/discussion/inspire-upper-airway-stimulation/.

You will notice that we removed your email address to protect your privacy since Connect is a public forum and can be seen by anyone with an Internet connection. Members can share contact and personal information through the private message function of Connect. For more information see the Help Center: https://connect.mayoclinic.org/help-center/.

From what I've read the Inspire device doesn't work for everyone with sleep apnea. You might want to take a look at the manufacturers frequently asked questions and see if it will work for you – https://www.inspiresleep.com/faq/.

Have you discussed the Inspire device with your doctor?

I have not discussed it yet with my Dr. but plan to. There are 2 local Drs. who are supposedly INSPIRE qualified. Thanks for your most helpful information.
Toby

May not be a problem, but recently met w/ one doc who went over all the possible options including Inspire. I wasnt terribly interested but he said because I was thin, the wire would show - dont know if he meant it would be sticking out of the skin on my neck or be under the skin and visible - YUCK either way.
In addition to the elevated head of bed - can raise the head of the bed w/ remote control -- and taping my mouth each night, I do tongue exercises when I do brisk walking to get 9800 steps per day - love to multi task. There are articles and u tubes w/ basically the same exercises.
Think I may try the oral device I got years ago that always ended up cutting the inside of my mouth.
Have always done at-home wired up sleep studies. Was going to do a hospital study but found out they would wake me at 5 am the next morning - sheez

Hi John,
When I received you first response above, I wrote a loooooong reply but somehow it got lost in cyberhell. I enjoyed reading both the reviews you sent links , esp the 2nd link that reviewed smartphone apps like Snorelab. The first link had a number of citations that were from studies and articles MANY years ago, but there were a couple newer citations I will read.

At a party tonight, met an acquaintance, Doug, who started an ENT practice . Ihad recently met w/ an ENT at his practice who told me he was the "senior doctor." He was supposed to be knowledgeable about OSA, but wasnt.

I told Doug and he asked what I talked to the doc about. I explained my condumdrum - if OSA is irregular snoring w/ 10 second or more intervals between snores, than what is it when I snore and there are 4 second intervals. He felt it didnt seem like OSA, just primary normal snoring. But he said need to consider what is going on w/ my heart and blood oxygen saturation level. Then I told him I tape and he was shocked - maybe he thought I said, I vape!!
Anyway, his concern w/ taping was that I could be taped, throw up and regurgitate which could cause clots to go to my lungs. IMHO, if I drank too much which is rare or felt sick enuf to throw up, which is rarer , I'd take off the tape. It really would be a long shot that either of those things could happen. Even if you get a 24 hr virus, which I have gotten, you start feeling nauseous first.
You mentioned having 55+ in your Mayo sleep study.
The 1st home study I hadby Novasom where I got wired up but could do it all at home, in 9 hours of sleepingw/ no appliance and no tape, I had 144 Total Events (OSAs and Hypopneas) equaling 35.6 events per hour/ one every 3-1/2 minutes . The longest duration was 108 sec and average duration was 50 sec. That was diagnosed as MODERATE!

2nd Novasom study w/ Oral Device, I had 75 events over 7 1/2 hours of sleep w/ longest duration 117 sec and average duration of 63 seconds. = 10 events/ hour, 1 every 6 minutes - That was MILD

3rd & last test one w/ mouth taped shut, 9 1/2 hours over 2 nites. 19 events first night w/ mouth taped, 3.6 /hour, avg duration 53 sec and max 113 sec.
2nd night w/ mouth taped AND oral appliance had 12 events, still long max duration of 110 sec and 56 sec average duration] 2.7 events every hour. That was NORMAL for the test period.

I should try the oral appliance again w/o the taping now that I have the head of the bed in a good position w/ the right pillow for me. Even tho I dont have all the data, the SnoreLab app will give me a snore score so I can compare.
It's 3:33 am here, so if I've typed someing that doesnt look right, you'll understand why. Was waiting to see the Perseid metor shower, but too cloudy. Weather said could see it at 3 am but no luck = dang. My husband will be getting up in 2 hours - ha ha

Amazing - Last night, I slept w/ the oral device that a got from a dentist a number of years ago - fully paid for by insurance.
This dentist specializes in providing them to his patients. I had stopped using the oral device because I would bite the inside of my cheeks and lips. The dentist didnt seem that interested in adjusting it. His assistant told me to be careful when I was eating/chewing - DUH.

Since I stopped using it and refused to go back to the C-RAP, I began taping my mouth shut. It has worked and it didnt bother me if I was really tired, like up past my normal 2 am bedtime. If not really tired, it will bother me a bit but NOT as bad as the C-RAP.
Last night, I decided to give the oral appliance a try again w/ just a small amount of tape on my mouth to keep from chronic mouth breathing when sleeping.

After 7 hrs and 57 minutes sleeping, the Snorelab app I use showed a Snore Score of 0 or 1% of 7 hrs and 57 minutes. From the info on the Snorelab app, I could see there was one event where I snored for 20 seconds but during that time - w/ one exception- all of the snoring that occurred during the 20 secs was at less than 10 second intervals - mainly 4 second intervals. For the exception, the interval was 11 seconds between snores.
From a number of websites and conversation w/ a tech person who analyzes overnight hospital sleep studies, that an apnea is defined as no breathing for more than 10 seconds. Per Johns Hopkins:
"Obstructive sleep apnea occurs when your breathing is interrupted during sleep, for longer than 10 seconds at least 5 times per hour (on average) throughout your sleep period. "
I posted a link to the Johns Hopkins site but new members not allowed to post links so had to delete it. I found the info gooling it.
Probably tomorrow my Sleep Score will be 64! If you have any questions, please ask and I will try to help w/ answers. I know how horrible it can be to use the C-RAP, rip off skin when taking off the wrong type of tape, feeling claustraphobic w/ mask or tape on and wasting money on things that didnt work. Carole

@csherman66 - I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Obstructive Sleep Apnea
https://www.hopkinsmedicine.org/health/conditions-and-diseases/obstructive-sleep-apnea#:~:text=Obstructive%20sleep%20apnea%20occurs%20when,not%20taking%20in%20enough%20oxygen