2 months in and struggling

Hello everyone,

I was diagnosed with severe sleep apnea in July, and had to wait a couple of months until I received my CPAP. It took me a few days, maybe a week, to get used to wearing the mask and wear it laying down. I was set for the 4-20 autopap but quickly realized 4 wasnt enough as the number quickly rised at night. I closed the gap to 7-15 and it kept creeping to 12 or 13. I was unable to stay asleep longer than an hour or 90 minutes before waking up and realizing the mask was on the nightstand. I fiddled with the EPR and closed the range further as I kept thinking it was the pressure change causing my awakenings.

Well, I still woke up after 60-90 minutes. Same thing kept happening. I would put the mask on after waking, but most of the time I couldnt control my breathing enough to continue with therapy. My sleep obviously suffered and got worse.

I had this past week off for the holidays and some personal time. I made a point to put the mask back on after waking. I would even stay up for a few minutes to get my breathing controlled and lay back down. I was told I had to abide by the 4 hour compliance, or else my insurance stops paying for the machine. I had some success keeping the mask on throughout the night and even kept it on the entire night. However, I checked my data in OSCAR and realized I still woke up every hour or so. Sometimes would just be a moment of opening my eyes and realizing I was awake, then dozing back off. I took a snippet of this past Friday, as it was the longest continuous stretch I used the machine. I had some centrals throughout the week and some leaks I havent been able to control. Some of it is being comfortable as I struggle to get in a set sleeping position.

The leaks started a few weeks ago, as Ive been training myself to breath through my nose. Ive been a mouth breather for as long as I can remember so was obviously given a FF mask. Ive been working on nose breathing and having some success, however its causing the mask to leak later in the night. As i exhale I can feel part of the mask lift on the side and air escapes. It gradually gets worse as the night goes on, and it becomes a hassle to control. The DME suggested I replace the cushion and I bought a new one and this seemed to help some but its starting to get where it was before the change. The leak does not happen if I breath through my mouth, but Im feeling more comfortable with the nose breathing. However, I have to use the FF for now as I sometimes wake and am mouth breathing. Im at the point I may use a chin strap to support.

The attached pictures show a nice continuous use, but this is me waking every hour, sometimes multiple times an hour. I didnt feel that much better Saturday morning, mostly the same. Im struggling and my doctor nor the DME is helping the situation. I feel, well hope, the fix is simple or easy and I can start to feel the benefits of the therapy. Im sitting at 13cm with 3 EPR right now. Ive settled between 13-14 with little to not OA or Hypopneas. It may not be my end all pressure, but I feel like its pretty close. I set the EPR to 2 a few nights and my flow limits show up and was told raising the EPR would alleviate this. Switching the EPR back to 3 would cause more CAs but they seem to be tapering off some.

I dont want to give up as I have read the success stories on here and its given me hope. I was also diagnosed with insomnia and was put on Trazodone to help fall/stay asleep. Its helped with falling asleep, its just sleeping longer than 90 minutes at a time. Ive also noticed not using the mask causes me to wake up even more frequently as my apnea is likely getting worse. Does anyone have any suggestions or hints/tips of what I am doing wrong or need to be doing?

Why is your max pressure at 13 rather than e.g. 20?

Julie wrote: ↑

Mon Nov 29, 2021 11:48 am

Why is your max pressure at 13 rather than e.g. 20?

I kept thinking I was waking up as the pressure kept changing. I narrowed the range and kept narrowing to where it usually was at 95%. I probably shouldnt have left it in AutoPap if was using a set pressure.

packfan23 wrote: ↑

Mon Nov 29, 2021 12:16 pm

Julie wrote: ↑

Mon Nov 29, 2021 11:48 am

Why is your max pressure at 13 rather than e.g. 20?

I kept thinking I was waking up as the pressure kept changing. I narrowed the range and kept narrowing to where it usually was at 95%. I probably shouldnt have left it in AutoPap if was using a set pressure.

Do you even know what the 95% represents?

LSAT wrote: ↑

Mon Nov 29, 2021 12:45 pm

Do you even know what the 95% represents?

That 95% of the events happen under the said pressure. The 95% hovered around 14 so i lowered it to 13. I stayed in a range of 10-14 and it almost always went and stayed around 13. Also, Go Pack Go!

It's fine to leave the machine in Auto mode even if you min equals your max. Some people are really bothered by pressure changes, and if you're one of them, then with good numbers like this there is no reason to set a range.

If you had a 95% number of, say, 14, that would mean that 95% of the time your pressure was 14 or less.

If you think it might make you more comfortable, you can try dropping your min = max to 12 and see how it goes. Keep the EPR at 3.

It is normal to wake up off and on during the night. The timing of your wake-ups makes me wonder whether you are waking up after a period of REM sleep. A fair number of people do (including me). This may be a new experience if your untreated apnea was preventing you from having regular sleep cycles with good REM periods. In other words, the wake-ups may actually be a sign that things are going better for you. That's just an hypothesis, but you might mull it over.

There are a couple of tricks that people use to keep their masks on. One is to put tape over a strap where it crosses your face, so that the tug of the adhesive on your skin will alert you that you're trying to pull the mask off. Another is to wear mittens or socks on your hands, if that would make it more difficult for you to pull off the mask. Over time, this irritating problem (and its irritating solutions) should fade away.

Keep us posted, would you?

Miss Emerita wrote: ↑

Mon Nov 29, 2021 2:19 pm

It is normal to wake up off and on during the night. The timing of your wake-ups makes me wonder whether you are waking up after a period of REM sleep. A fair number of people do (including me). This may be a new experience if your untreated apnea was preventing you from having regular sleep cycles with good REM periods. In other words, the wake-ups may actually be a sign that things are going better for you. That's just an hypothesis, but you might mull it over.

This is a good point and one Im monitoring. Nothing has really changed other than I am able to keep the mask on the entire night. However, I still wake up 6-7 times. It isnt the usual waking up where I immediately sit up wondering what just happened. Im not waking up to use the bathroom as frequently. I used to go 3-5 times per night, now its down to 1 maybe 2. I dont wake up with my heart racing and full of adrenaline. I used to have a bad habit of "clock-watching", especially on days I have be up early for work. Thats how I knew how long I had slept. However, Ive been training myself not to do this, so I'm not sure how long my sleep cycles are lasting.

I feel exactly the same as I have for over a year now; just exhausted. I lowered the pressure to 12, but my hypopneas rose and even had some OA, so I changed it back after a few days. My stats look almost exactly like the screenshots I posted last week. A few central apneas with some leaks. I havent been able to fully fix the leaks. Some nights are better than others, although its likely from turning on my side.

I have a followup appointment in a few weeks with my sleep doctor, but Im going to stay with these settings until then and see how it goes. I feel Im close, but I just want to stay asleep the entire night just once and see my stats.

Thank you for your suggestions.

packfan23 wrote: ↑

Mon Dec 06, 2021 9:37 am

I just want to stay asleep the entire night just once and see my stats.

Be warned that this may be an unrealistic expectation. Don't set yourself up for a big disappointment that you have no control over.
We all have normal awakenings/arousals....it's just that we don't always remember them.

Remember not all arousals are related to airway issues. Some are just a normal part of life or caused by something other than airway issues.
Spontaneous arousals...they mess with our sleep quality big time but they aren't related to airway issues.
Cpap doesn't do a thing for any arousal unrelated to the airway. It sucks. It's a problem I face myself so I personally know how much it sucks.

Pugsy wrote: ↑

Mon Dec 06, 2021 9:50 am

packfan23 wrote: ↑

Mon Dec 06, 2021 9:37 am

I just want to stay asleep the entire night just once and see my stats.

Be warned that this may be an unrealistic expectation. Don't set yourself up for a big disappointment that you have no control over.
We all have normal awakenings/arousals....it's just that we don't always remember them.

Remember not all arousals are related to airway issues. Some are just a normal part of life or caused by something other than airway issues.
Spontaneous arousals...they mess with our sleep quality big time but they aren't related to airway issues.
Cpap doesn't do a thing for any arousal unrelated to the airway. It sucks. It's a problem I face myself so I personally know how much it sucks.

I should also mention they did diagnose me with insomnia too. I was prescribed 50mg of trazodone and I havent been able to take it the past week as Ive been waiting for my doctor to send in the refill. Hoping to have it filled and resume taking it today.

packfan23 wrote: ↑

Mon Dec 06, 2021 10:19 am

I should also mention they did diagnose me with insomnia too. I was prescribed 50mg of trazodone and I havent been able to take it the past week as Ive been waiting for my doctor to send in the refill. Hoping to have it filled and resume taking it today.

I hear you. Sometimes there is a time and a place for some sort of sleep aid.
We do the best we can given what we have available. Is it perfect? Of course not but sometimes the best of our limited options.

If you have been without the trazadone for a bit, and you normally take it every night or on a fairly regular basis, it is entirely possible that some of the arousals you are experiencing is related a bit to the physical withdrawal that happens when we no longer have that chemical in our body.
Been there and done that was well while waiting on meds refills.
Damned if you do and damned if you don't kind of thing.

When I remember a lot of arousals I also know that I, most likely, had even more that I don't remember and those that I don't remember to play a factor in my overall sleep quality just as much as the ones I do remember.

Pugsy wrote: ↑

Mon Dec 06, 2021 10:43 am

When I remember a lot of arousals I also know that I, most likely, had even more that I don't remember and those that I don't remember to play a factor in my overall sleep quality just as much as the ones I do remember.

I know you said you have struggled with this, is this still ongoing? How have you dealt with it?

I also have a cat that continuously decides to jump on me in the early morning hours. She demands her attention sometime around 3-4 AM. I used to joke with my wife she's a bigger obstacle to overcome than my sleep apnea.

packfan23 wrote: ↑

Mon Dec 06, 2021 10:57 am

I know you said you have struggled with this, is this still ongoing? How have you dealt with it?

Yep...still ongoing and I really don't realistically expect a miracle.
12 plus years on cpap and the bad sleep from normal aging aches and pains have just gotten worse.
Then there's life's normal stressors that can give us bad sleep...worry is a big one for me. Sometimes I just can't turn off the damn brain.
Then there's pets....I fully understand the trouble's they can cause but my joy with my pets help with my stress levels...so it's a trade off I accept.

As for how do I deal with it? The best I can given what the cause might be and my options available for trying to fix the potential cause. I have plans to try a new procedure at the end of the month to hopefully help with the pain issues that mess with my sleep. I do the best I can with the life's stressors issues but the main worry there is my own mother's failing health...mental and physical....but I know there's not a lot I can really do to turn the brain off in that area. It is what it is. When I have a couple of really bad nights in terms of enough sleep...I take a sleeping pill.
Like Friday night I got only 5 hours of sleep...and Saturday night barely 4 hours. Felt like death warmed over yesterday.
Last night I took a sleeping pill...got 6 hours of sleep. Not great but better than the prior 2 nights.
I am not a bundle of energy today but at least I don't feel like death warmed over.
2 prong cause of the 2 nights poor sleep...woke up hurting and then brain kicked into overdrive and wouldn't settle down.
Fairly typical for me.

For the pet thing...depends on what the pet issue is. Like one was a little dog screaming in pain...she finally got surgery last week to remove the source of the pain and thus stop the screaming.
When it's just the pet (I have dogs and cats) loving on me or wanting to be close to me I just try to love them back and that usually lets me relax and go back to sleep.
I found that when I worry about waking up too early.....it feeds that insomnia monster so I try not to worry.
Sometimes I win the battle...sometimes the insomnia monster wins the battle.

This is why I cautioned you to not have unrealistic expectations....because that worry can feed the insomnia monster.
2 main kinds of insomnia....sleep onset insomnia which is where we have trouble falling asleep and sleep maintenance insomnia which is where we either wake up sooner than we want to or more frequently than we want to and may or may not have trouble going back to sleep.
The list of potential culprits for either kind of insomnia...miles long and airway issues but one item on that miles long list.

I do know that my sleep apnea therapy is optimized and the crap that messes with my sleep isn't related to my airway...and I would likely have these same issues even if I didn't have sleep apnea.
I continue to try to address each insomnia monster feeding issue the best I can...that's all anyone can expect.
I win some battles and I lose some battles but I try really hard to not let worry about the battles I lose create more battles.

Pugsy wrote: ↑

Mon Dec 06, 2021 11:40 am

I do know that my sleep apnea therapy is optimized and the crap that messes with my sleep isn't related to my airway...and I would likely have these same issues even if I didn't have sleep apnea.

pugsy, i'm pulling this quote out for emphasis. it's something that new users to the forum need to see. some of us (ME!!) could really have benefited from this in early days. but it's hard coming to cpap and sleep apnea as it is. harder to realize what the whole point of cpap therapy is.

Continuous
Positive
Airway
Pressure

that's it. that's what cpap does. it holds your airway open and allows one to breath throughout the night. sure, we want to do that with the least amount of pressure to do the job effectively. some of us have to have a boatload of pressure to do that. others don't.

there are other forces at work that disrupt sleep. those have to be handled individually. expecting cpap to do it all is a very heavy "ask" and can lead to a sleep apnea sufferer to failure if they expect the machine to do it.

I completely understand as I have issues turning my brain off at night. Constantly thinking about upcoming things at work or just general things. I have trouble turning my brain off to let go and completely relax. I am sorry to hear about your mother's health issues.

Im in the same boat with my pets too. My cat is my sidekick and definitely helps de-stress and other things. She usually wants attention or for me to move so she can sprawl out and take over my pillow I usually give her pets, let her purr and stretch out then I can go back to sleep. Its sort of become an early morning ritual at this point.

Id love to make it through an entire night and maybe it is unrealistic. Ill settle for a few hours straight at this point. Ive made a lot of progress getting used to the mask, the pressure, the laying down in bed with the mask/hose. Im light years further than Id thought Id be. When I picked up my machine and tried out some masks, the DME turned on the pressure to let me experience it and it was an immediate NOPE. I was scared I wouldnt adapt and overcome my anxiety. Now Im fully comfortable wearing it and its a matter of staying asleep with it. Ill settle for any further progress and better feeling.

zonker wrote: ↑

Mon Dec 06, 2021 11:50 am

there are other forces at work that disrupt sleep. those have to be handled individually. expecting cpap to do it all is a very heavy "ask" and can lead to a sleep apnea sufferer to failure if they expect the machine to do it.

IMHO the most common cause of people who say the "cpap doesn't work" end up putting the cpap machine in the closet.
They expected the machine to do something it simply couldn't do and blamed the machine for the failure.
After all most of the time the DMEs tell people "you will feel and amazing difference" or they know someone who had the overnight miracle and they expect that same miracle. Not realizing that the miracle is actually a rarity and most people won't see it. I certainly really haven't seen it except maybe a couple of times. I know that my "miracle" was more related to my winning my insomnia war than what the machine was doing.

Some people just don't want to accept the fact that there is so much more to good sleep than "numbers"....except maybe the hours of sleep number and even that number sometimes lies to us.
It's gotta be "good quality sleep" as well as hours of sleep.

I don't expect to be super woman....I am happy to just not feel like death warmed over. Would I like to feel like super woman...sure I would but I am 69 years old and with other health issues that mess with sleep and I have other life stressors as well and I take meds known to mess with sleep and/or how I feel during the day. It is what it is.