CPAP journey - 18 months in

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
GolfGardener
Posts: 16
Joined: Sun Dec 11, 2022 4:44 am

CPAP journey - 18 months in

Post by GolfGardener » Sun May 05, 2024 4:28 am

Hi everybody,

What follows is an update on where I've got to over my first 18 months of being a CPAP user. I've highlighted below some of the things which helped me get to grips with CPAP, and I hope there is something in here which will be useful to other newcomers. But first, a HUGE thanks to everybody on this board who helped my out in the first few weeks.

<B>Training myself to nose breathe</B>
Writing this makes me feel pretty silly but I genuinely wasn't previously aware that we are supposed to breathe through the nose and not the mouth. As I'd been a lifelong mouth-breather I started off on CPAP using a full face mask. It worked OK, but is very obtrusive, quite uncomfortable and left annoying marks on my face the following morning. More seriously the large perimeter of the mask made it very hard to control leaks.

So after a few weeks of reading this forum I thought I'd try to train myself to nose-breathe during sleep. I switched to a nasal mask and used mouth tape for a couple of weeks to help me get the hang of it. Once keeping my mouth shut had become a habit I dropped the tape and it all seemed to work OK. I much preferred the feel of the nose mask.

My experience here is that this seems to lead to a sort of virtuous cycle: nose-breathing leads to more clear nasal passages, which in turn makes nose breathing much easier to do.

However what I've learned since those early days is that going to sleep with your mouth shut doesn't necessarily mean it stays that way, of which more later.

Tweaking the comfort settings
I started with CPAP in December 2022 and got off to a very good start. That came to an abrupt end after a few weeks when I had several nights of being unable to sleep, feeling panicky, feeling like I couldn't breathe etc. I suppose that in the very first days I was so utterly sleep-deprived that my body just took any opportunity to get a decent night's sleep. Once that novelty wore off it then decided to rebel against this new routine.

After reading some old posts here a couple of pieces of advice consistently cropped up, which I tried out: Turn "Ramp" off and EPR on (to 3 in my case). This immediately cured the getting-to-sleep problems I mentioned above, and ever since then I've been reliably getting to sleep within ten minutes or so. Things really became VERY much better after making these changes.

Moving on from nasal mask to nasal pillows
As I mentioned above, moving to a nasal mask was a good step. After about six months I thought I'd give nasal pillows and go and immediately loved them. The main benefits were:
  • While the nasal mask reduced the leaks quite a lot compared to full face masks, pillows reduced them even further
  • Much greater comfort level. One of the first nights using them I woke up in a panic because I thought I'd gone to sleep without my mask on. I was wrong; I'd just grown so accustomed to the new mask that I hardly knew it was there any more.
  • Pillows allow me to sleep a full night with the mask on. With the nasal mask I'd fallen into a routine of getting about five or six hours of good CPAP sleep, but then waking up and not being able to get to sleep again with the mask on. So I'd take it off and get another hour or two of untreated sleep, which is not a great habit to get into. The pillows are so much more comfortable then I can wake at any point during the night and quickly go back to sleep
  • The ability to sleep on my side. This is the only mask that has allowed me to do this.
  • Reduced nasal congestion. I've got a long history of sinus problems and nasal congestion. The pillows seem to help a lot with the latter, and gives me the feeling that it is holding my nostrils open wider which makes breathing easier still. I actually quite like the feeling of putting them on at night now as my breathing immediately improves. I think it was related to this that I also turned off EPR around this time as I no longer needed it for comfort.
So that's all the good stuff that worked for me over the first six months. I had a few minor problems that I was struggling to fix:
  • Lots of large leaks and fairly consistent lower level leaks that I couldn't explain
  • Inconsistency of Oscar data from one night to the next
  • Still never getting a full night of uninterrupted sleep. Every night I would wake up a few times and be sufficiently conscious enough to check the time and wonder if a bathroom visit was needed (usually not)
After some detective work and scouring this forum, the only possible explanation for the leaks seemed to be mouth leaks. I didn't believe it at first as I have no recollection of ever waking up with that feeling of air rushing out of my mouth and the accompanying noise. However I tried mouth-taping again for a few nights which made a big difference to the leak stats, so that confirmed the problem. However I wasn't particularly comfortable using the tape, so this wasn't going to be a long term solution.

Making and using a chin strap
Next I thought I'd try a chin strap. As such things aren't readily available where I live I made one of my own by cutting a piece of elasticated material and sewing it into a head-sized loop. This definitely helped my to keep my mouth shut and reduce the leaks, and I've kept this habit up since.

Medication
In December last year my doctor, who had been observing my high blood pressure for some time, recommended that I start on a very low dose of the BP medication Losartan/Cozaar.

Now I don't know why or how these things could possibly be linked, but my AHI stats immediately came down from an average of around 5 to around 1 after I started these meds. In addition, the frequent periods of CSR that the machine was flagging up disappeared entirely, never to return. Others here had assured me that these bouts of periodic breathing were not actually CSR, but it still caused me some nagging worries so I was very glad to see that go away.

Does anybody here have any ideas about this? Can normalising blood pressure have some impact on how we sleep?

Situation today
So that's where I've got to so far. Two years ago:
  • I was frequently exhausted and regularly falling asleep on the sofa in the evenings.
  • I was getting up several times during the night to use the bathroom.
  • I snored VERY loudly, for most of the night.
All of that has changed dramatically, and for the most part these things were transformed immediately after starting CPAP, and the tweaks I've made since then have only resulted in marginal improvements. I also started having dreams again for the first time in years, which is a clear indication that my sleep cycles have sorted themselves out (in my sleep study I got 0 minutes of REM sleep). My nasal congestion has reduced a great deal and I get fewer colds than I used to.

On the other hand, I'm a little disappointed that my health indicators haven't improved. I was hoping that I might see some improvements in fasting blood sugar, blood pressure and weight after starting CPAP therapy. None of these things improved; in fact I put on quite a bit of weight in the first few months of use and as noted above have now started treating my blood pressure with medication.

Other things that I'd still like to fix are:
1) I still wake up several times each night. I generally go back to sleep very quickly so it's not too disruptive but I'd love to sleep through if possible. I guess the first step is to work out what's waking me up, but I'm pretty sure these awakenings are linked to my sleep cycles rather than any external problem such as noises.
2) I don't seem to have the ability to sleep for more than about 6 hours 45 minutes each night. From what I understand that's right at or a little below the low end of what's healthy for an adult. Maybe that really is all I need though, or perhaps years of sleep apnea have caused my body to adapt to a relatively low levels of sleep.

So that's my story. As I said at the start I hope this helps others and would welcome any thoughts. When I get around to it I might post a few recent Oscar charts to see if the experts here can help my get things even better.

bran
Posts: 16
Joined: Tue Mar 26, 2024 3:48 am

Re: CPAP journey - 18 months in

Post by bran » Sun May 05, 2024 10:17 am

I relate to a lot of what you are saying here, except I have only been on my Bipap machine for 2 months and learning every day. I take Losartan which slows the heart beat down and would therefore improve your "events". Same as when you take deep breaths, hold for 5 and breath out for 8 etc.... The nasal pillows work best for me also, but not sure if I will continue as it's causing issues with my eyes drying out and vision concerns. Tried a cushion only last night covering the nose, and it was much better(re the eyes) but the leakage was around 24..and I spend about 5 mins every hour or so adjusting it. Cannot get on with a full face mask at all!

I don't go to pee so much anymore, whereas it used to be about 4-5 times a night(which is great) but my main issue is that I am a side and stomach sleeper, move around a lot at night, a mouth breather and therefore the biggest difficulty has been learning to only breath through nose, tape does not work with me as my saliva soaks the crap out of it and they come off, Chin straps help a bit, but still dribble through, fairly hyper person(which I think has a lot to do with everything) and also can't seem to lose weight, quite the opposite and have my PT say it's a load of bull when I tell her I think the machine is making me put on weight. More like the steroids I am on and not having the energy to exercise properly! But I would be interested to hear how many here think there is some truth to weight gain since using your various cpap machines?

Apart from my vision issues, I do get very tired around mid-afternoon and go for a nap for about an hour which I think I have just got to stop as I then can't go to sleep until about 1 am(and normally have to take an ambian to get to sleep 5 mins later.....

Lastly, I think it was Pugsy who advised me turning my ramp time off which is set for 20 mins. I think I tried this but found the breathing very laboured. Also you mention turning of EPR. I don't seem to have this on my aircurve 11 Vauto but PS set to 4. Is this the same as EPR? I do not want to get hooked on taking strong sleeping pills just to go to sleep and would love to just put on all the apparatus and go to sleep naturally within 5 minutes, but mostly can't without a pill!!

User avatar
Miss Emerita
Posts: 3503
Joined: Sun Nov 04, 2018 8:07 pm

Re: CPAP journey - 18 months in

Post by Miss Emerita » Sun May 05, 2024 10:51 am

GG, it's great to hear how things have been going for you. If you have a moment, I wonder whether you might copy and paste your post into the Success Stories thread at the top of the page. I think it's a great post for newbies to read.

I don't know why your reduction in BP and/or the medication you're taking is correlated with a drop in AHI. But if the bulk of your AHI continued to be CAs, one theory is that with your reduction in BP you're now sleeping more soundly, with fewer of the arousals that can cause CAs and set of a chain of unstable breathing with multiple CAs.

It's normal to wake up several times a night, especially after REM sleep. I wouldn't worry about that if I were you.

As for the relatively short sleep time, maybe that's really all you need. The real question is how you feel during the day. If you feel sleepy, grumpy, and stupid, then you need more sleep. if you feel wide-awake, cheerful, and sharp, then you're probably getting what you need.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

GolfGardener
Posts: 16
Joined: Sun Dec 11, 2022 4:44 am

Re: CPAP journey - 18 months in

Post by GolfGardener » Mon May 13, 2024 12:02 pm

Hi there bran,

Sounds like you are doing well after just a couple months! Re: the weight, there is quite a bit of research out there suggesting a link between CPAP and weight gain but what I saw didn't seem to be conclusive and I didn't see any suggested causal link. I'm pretty sure I gained a good 5 kg over the first six months without any other significant changes to diet and exercise though.

Interesting that you are tired enough to need a nap in the early afternoon. How long are you typically sleeping for at night?

I don't fully understand the difference between PS and EPR, and I'm sure others here will be able to provide an explanation, but from a brief search of this forum it appears that it is a very similar thing.

Good luck and stick with it! One of the most useful things I picked up here in the early days was to experiment with different things, but don't change more than one thing at a time and then wait a while for things to settle down before rawing conclusions. Wise advice indeed.
bran wrote:
Sun May 05, 2024 10:17 am
I relate to a lot of what you are saying here, except I have only been on my Bipap machine for 2 months and learning every day. I take Losartan which slows the heart beat down and would therefore improve your "events". Same as when you take deep breaths, hold for 5 and breath out for 8 etc.... The nasal pillows work best for me also, but not sure if I will continue as it's causing issues with my eyes drying out and vision concerns. Tried a cushion only last night covering the nose, and it was much better(re the eyes) but the leakage was around 24..and I spend about 5 mins every hour or so adjusting it. Cannot get on with a full face mask at all!

I don't go to pee so much anymore, whereas it used to be about 4-5 times a night(which is great) but my main issue is that I am a side and stomach sleeper, move around a lot at night, a mouth breather and therefore the biggest difficulty has been learning to only breath through nose, tape does not work with me as my saliva soaks the crap out of it and they come off, Chin straps help a bit, but still dribble through, fairly hyper person(which I think has a lot to do with everything) and also can't seem to lose weight, quite the opposite and have my PT say it's a load of bull when I tell her I think the machine is making me put on weight. More like the steroids I am on and not having the energy to exercise properly! But I would be interested to hear how many here think there is some truth to weight gain since using your various cpap machines?

Apart from my vision issues, I do get very tired around mid-afternoon and go for a nap for about an hour which I think I have just got to stop as I then can't go to sleep until about 1 am(and normally have to take an ambian to get to sleep 5 mins later.....

Lastly, I think it was Pugsy who advised me turning my ramp time off which is set for 20 mins. I think I tried this but found the breathing very laboured. Also you mention turning of EPR. I don't seem to have this on my aircurve 11 Vauto but PS set to 4. Is this the same as EPR? I do not want to get hooked on taking strong sleeping pills just to go to sleep and would love to just put on all the apparatus and go to sleep naturally within 5 minutes, but mostly can't without a pill!!

GolfGardener
Posts: 16
Joined: Sun Dec 11, 2022 4:44 am

Re: CPAP journey - 18 months in

Post by GolfGardener » Mon May 13, 2024 12:08 pm

Miss Emerita wrote:
Sun May 05, 2024 10:51 am
GG, it's great to hear how things have been going for you. If you have a moment, I wonder whether you might copy and paste your post into the Success Stories thread at the top of the page. I think it's a great post for newbies to read.
OK, I've done that. And now I know that thread is there, I will need to find some time to read the rest of it!

Thanks!

bran
Posts: 16
Joined: Tue Mar 26, 2024 3:48 am

Re: CPAP journey - 18 months in

Post by bran » Thu May 16, 2024 2:56 pm

GolfGardener wrote:
Mon May 13, 2024 12:02 pm
Hi there bran,

Sounds like you are doing well after just a couple months! Re: the weight, there is quite a bit of research out there suggesting a link between CPAP and weight gain but what I saw didn't seem to be conclusive and I didn't see any suggested causal link. I'm pretty sure I gained a good 5 kg over the first six months without any other significant changes to diet and exercise though.

Interesting that you are tired enough to need a nap in the early afternoon. How long are you typically sleeping for at night?

I don't fully understand the difference between PS and EPR, and I'm sure others here will be able to provide an explanation, but from a brief search of this forum it appears that it is a very similar thing.

Good luck and stick with it! One of the most useful things I picked up here in the early days was to experiment with different things, but don't change more than one thing at a time and then wait a while for things to settle down before rawing conclusions. Wise advice indeed.
bran wrote:
Sun May 05, 2024 10:17 am
I relate to a lot of what you are saying here, except I have only been on my Bipap machine for 2 months and learning every day. I take Losartan which slows the heart beat down and would therefore improve your "events". Same as when you take deep breaths, hold for 5 and breath out for 8 etc.... The nasal pillows work best for me also, but not sure if I will continue as it's causing issues with my eyes drying out and vision concerns. Tried a cushion only last night covering the nose, and it was much better(re the eyes) but the leakage was around 24..and I spend about 5 mins every hour or so adjusting it. Cannot get on with a full face mask at all!

I don't go to pee so much anymore, whereas it used to be about 4-5 times a night(which is great) but my main issue is that I am a side and stomach sleeper, move around a lot at night, a mouth breather and therefore the biggest difficulty has been learning to only breath through nose, tape does not work with me as my saliva soaks the crap out of it and they come off, Chin straps help a bit, but still dribble through, fairly hyper person(which I think has a lot to do with everything) and also can't seem to lose weight, quite the opposite and have my PT say it's a load of bull when I tell her I think the machine is making me put on weight. More like the steroids I am on and not having the energy to exercise properly! But I would be interested to hear how many here think there is some truth to weight gain since using your various cpap machines?

Apart from my vision issues, I do get very tired around mid-afternoon and go for a nap for about an hour which I think I have just got to stop as I then can't go to sleep until about 1 am(and normally have to take an ambian to get to sleep 5 mins later.....

Lastly, I think it was Pugsy who advised me turning my ramp time off which is set for 20 mins. I think I tried this but found the breathing very laboured. Also you mention turning of EPR. I don't seem to have this on my aircurve 11 Vauto but PS set to 4. Is this the same as EPR? I do not want to get hooked on taking strong sleeping pills just to go to sleep and would love to just put on all the apparatus and go to sleep naturally within 5 minutes, but mostly can't without a pill!!
Tired mostly because I have Mysathenia Gravis and just exhausted plus Im not sleeping well at all recently so have other issues..thx for the reply...I hope this goes through as it appears this website still is having difficulties so making it short.