Second try with CPAP. Please, help me make it work this time!

[Julie]

Things are good so you/re looking for trouble?

[prkl]

Things are good so you/re looking for trouble?

Probably yes I'm trying to tell myself that I'm just making sure in advance this works out this time, but well...

[zonker]

Things are good so you/re looking for trouble?

Probably yes I'm trying to tell myself that I'm just making sure in advance this works out this time, but well...

time will tell. i know, i know, it's hard to be patient.

stay the course and let's see what happens.

good luck!

[prkl]

Hi all and thanks for the replies. Just wanted to post a quick update.

I've been having better days and worse days lately. For maybe a bit less than a week I had lots of energy during the day, but that evened out eventually. However, I think now I'm a bit more rested because... again, I'm having trouble falling and staying asleep with the CPAP. It's not too bad, at least not yet, but I really want to prevent it getting bad this time.

What bothers me is the noise from the machine, and I really have no idea what more I could do to prevent that. I wear earplugs, and the main issue is the conducted noise those do not help with. I have a towel under the machine, I knitted a nice, puffy hose cozy. The machine is as far from the bed as possible. I turned on the ramp, so the thing would be less noisy when I try to fall asleep. This morning I changed the filter to see if that would make any difference, but I'll have to wait until tonight to see if that has anything to do with the issues. The old one was not really visibly dirty, so I'm not too confident this would help. I'm quite confident that the sound is not from a badly set water tank, because it's not "whistling" like I think it usually is with the water tank. The noise is more like a very subtle but annoying hum or chiming. It's not really audible without the mask on. Any ideas on what I might try next?

My doctor also ordered some bloodwork just in case (he thinks I've not improved as much as I should have by now), and it turns out I'm a bit low on vitamin D and iron, so I'll have to take a supplement for both for a while. I have PLMD and have also had more than usual RLS-like symptoms, so the low iron might also contribute to bad sleep. I say "RLS-like", because it's not my legs, it's my joints for whatever reason And always on only one side of the body, not both sides at the same time but the side changes. Luckily, getting the ferritin levels back up has helped with that in the past, and I have pramipexole for the PLMD.

[Julie]

Have you been looked at for arthritis?

[zonker]

The noise is more like a very subtle but annoying hum or chiming. It's not really audible without the mask on. Any ideas on what I might try next?

white noise generator to help mask the noise.

back in MY day, this constituted buying a physical machine.

now a days, you can get an app for your phone, if you have a phone. you can also find white noise online and then use your computer or tablet and play it that way.

good luck!

[prkl]

Have you been looked at for arthritis?

I think I've had a blood test related to arthritis some years back, that came back negative. However, the sensation is not painful, but more like an urge to move my joints, just like in RLS. Do you think it still could be related? I started the iron supplement a week ago, and already I think this symptom is getting better. Might be placebo, so I'll have to wait and see if it works for long term...

[prkl]

white noise generator to help mask the noise.

back in MY day, this constituted buying a physical machine.

now a days, you can get an app for your phone, if you have a phone. you can also find white noise online and then use your computer or tablet and play it that way.

good luck!

Thanks for the tip! I actually got headphones meant to be used while sleeping last time this issue arose, but I still need to search for a white noise recording that does not actually bother me. I remember waking up with both the mask and the headphones ripped off, not recalling I actually did that... Luckily internet is full of recordings, so I guess I have plenty of options to go through.

Last night was really bad. I had trouble falling asleep, but did anyway after half an hour or so. I woke up after an hour to the noise (I think), and got so annoyed that I took off the mask and continued sleeping without. When I later woke up to an apnea/hypopnea/whatever-breathing-related, I put the mask on again. However, the noise bothered me so much that I started adjusting the water tank, hose, nightstand and everything else related to the CPAP. In fact the machine got accidentally tossed to the floor while doing that, but luckily it seems that no harm was done. At that point I was so agitated that I got off the bed for a while to calm down, and later I was able to sleep for a few hours with the mask on.

I'm quite sure this noise existed already when I started (again) with the CPAP, so maybe this is mainly a mental issue. It sure is a good thing that I'm no longer so tired that I fall asleep no matter what, but I'm not sure how to properly deal with getting so annoyed with the machine that the annoyance itself prevents sleeping. I guess I need to go to CBT-I tricks (sleep restriction etc.).

Another thing is that I really struggle to maintain a regular wake up time, even though I know it's important. It's so hard that it feels absurd that a grownup is not able to wake up to an alarm and get out of bed. Instead I snooze or shut down the alarm completely, often not knowing I have done so. I'm also very good in talking my spouse to let me sleep late in the morning, not always remembering that either... Somebody asked me lately whether I think I'm a morning lark or a night owl, and the thing is I honestly don't know! Earlier I would have said that I'm both and neither, since I went to bed early and slept late. I think my sleep has been messed up for so long (due to untreated/undertreated sleep apnea), that my internal clock is somehow broken. Do you think this makes any sense? Does this happen to people with SA? Or should I try to find out if I have some circadian rhythm disorder, too? (Another sleep issue diagnosis, yay... )

[zonker]

Thanks for the tip!

Luckily internet is full of recordings, so I guess I have plenty of options to go through.

yup. i like the physical machine idea cuz i'm old fashioned. however sometimes the noise degrades and you get some odd noises out of it. the times i've tried online, i didn't have that problem.

Another thing is that I really struggle to maintain a regular wake up time, even though I know it's important. It's so hard that it feels absurd that a grownup is not able to wake up to an alarm and get out of bed. Instead I snooze or shut down the alarm completely, often not knowing I have done so. I'm also very good in talking my spouse to let me sleep late in the morning, not always remembering that either... Somebody asked me lately whether I think I'm a morning lark or a night owl, and the thing is I honestly don't know! Earlier I would have said that I'm both and neither, since I went to bed early and slept late. I think my sleep has been messed up for so long (due to untreated/undertreated sleep apnea), that my internal clock is somehow broken. Do you think this makes any sense? Does this happen to people with SA? Or should I try to find out if I have some circadian rhythm disorder, too? (Another sleep issue diagnosis, yay... )

i can't speak for the others, but i always considered myself a night owl. this was really a lot of added stress when i had the untreated apnea and was still working. i'd be lucky to get 5-6 hours of truly awful sleep, the kind that was full of constant wake ups and insomnia like symptoms.

i didn't start cpap until after i had retired. i often wonder how awful it would have been getting used to the machine AND knowing i had the alarm set to get up at a specific time!

now on cpap, i find myself turning out the light at 11pm, much earlier than i used to.

bear in mind that not every problem we can have with sleep is attributable to sleep apnea. but i think you should try to get to the point where your therapy is dialed in, the best it can be, before moving on to something else.

good luck!

[HoseCrusher]

Take a look at what disrupts circadian rhythm. If any of those things apply to you, you may have a path to follow.

[prkl]

Take a look at what disrupts circadian rhythm. If any of those things apply to you, you may have a path to follow.

Could you be a bit more specific? Do you mean things like no caffeine after noon, or no screens or bright lights before bedtime etc.? These things are something I consider quite basic, and have been applying for long time already. If you could point me to some new direction, I would be happy to hear more.

Good thing is, that actually over time it seems that the mornings are getting a bit easier. Getting up at seven is not such as nightmare as it used to be, although it's still not easy. But now it has been possible, which has not been the case always...

[prkl]

Something weird happened last week, my spouse reported that I had actually managed to snore with the CPAP on... Otherwise I would have shrugged that off, but I also had a bad headache on a couple mornings.

The headache could have been some muscle tension, but the snoring seems weird. Even weirder, I decided to call to the sleep clinic to see if the pressure should be adjusted, and they were mostly marveling about how big the minimum pressure of 9 cmH2O is for a woman...? Is it? The nurse was different than the one who set the pressure last time, but very helpful even though they did not touch the minimum pressure. While I was at it, I also complained about the bothering noise when trying to fall asleep and frequently waking up at night. So in conclusion, they changed "the pressure response to soft", increased the EPR to 2, and increased the Ramp minimum pressure to 6.

I'll have to see for a few days if those changes have any effect, but I came to ask what the soft pressure response means?

[HoseCrusher]

One of the experts in how circadian rhythm effects the body is Stachi Panda. He has many discussions and ideas ranging from how light effects us extending to what time to eat and how that effects us.

https://www.salk.edu/scientist/satchidananda-panda/

[prkl]

One of the experts in how circadian rhythm effects the body is Stachi Panda. He has many discussions and ideas ranging from how light effects us extending to what time to eat and how that effects us.

https://www.salk.edu/scientist/satchidananda-panda/

Ah, now I see what you mean, thanks! I'll need to take a look at that.

[prkl]

I've slept with the new settings for a few nights, and I feel something is wrong. I have a sports watch that records heart rate, and my average nightly HR has shot right up to the level where it was pre-CPAP. OSCAR charts look happy, but I have a feeling that there is something wrong with the settings or the machine itself. Obviously the increased HR could indicate I've caught a cold (hopefully not the prime culprit these days...), but I feel that the symptoms would have started by now if that were the case.

Could it be that the "soft pressure response" that was activated by the nurse prevents the machine reacting properly? Or could it be that the machine is broken? I've attached a chart from last night and a closer look to something that to me looks like an hypopnea. Compared to the charts prior this week, there are also much less pressure increases occurring. I would appreciate if someone could take a look and comment on the issue.