14 Months on CPAP and Still Painfully Tired

[supertiredperson]

I didn't realize it only captures one day at a time, I guess I'll post these daily for a while and see where it gets us.

I think my mask is starting to be a problem. This mask was always snug and I never felt like there were leaks, but when I turn off the ramp, I noticed a little bit of air slipping out around either side of my nose. This never used to happen, but now I can't seem to get my headgear/mask positioned in a way that eliminates leaks entirely. Especially when I breathe out heavily on purpose, I can feel the edges of the mask lift up and it kind of makes a farting noise (not trying to be funny, just not sure of a better word for the noise). I usually have hair on my face, so I've been shaving thinking that I'd get a better seal, but even with a clean shaven face, this still happens.

I also want to share two other thoughts

1. for the entire time I've had sleep apnea, I've had this pain/tightness in my upper chest and upper back. In my upper back, its right behind each shoulder blade, like I have a permanent knife is each one, and is more pronounced when I move my shoulders. In my chest, the pain is in my upper chest/mediastinum area. When I breathe out, my chest pops. I also have a coarse/dry cough that comes from deep within my chest. When I breathe in, it feels like I can't get a deep breath, like my lungs are strangled and something is preventing them from expanding all the way. I've had several chest xrays, a CT scan of my chest, asthma test, blood gas analysis, I've seen a pulmonologist who could find nothing out of the ordinary. I have also seen a physical therapist and taken several muscle relaxers for long periods of time, all to no avail. I have an inversion table and a hard foam back roller that I use all the time, but nothing seems to relieve this constant tightness in my upper chest/back. I can also run long distances without a problem. I think its one or both of two things; 1. muscle spasms/damage from 9 years of untreated sleep apnea. I read that your chest muscles are doing overtime to compensate for the lack of oxygen. 2. anxiety.

2. I have never cleaned my hose. I clean my mask and humidifier and change the filter, but not the hose. I have changed the hose twice over the last 14 months, but never cleaned it. Is it necessary to clean the hose frequently?

[Julie]

Hardly anyone cleans the hose, over decades in some cases, so I wouldn't worry about it. I wonder if your problem is that your system, muscles, etc. are still adjusting to Cpap and causing the pain... it certainly happens tp some people, but it would depend on the timing of your starting Cpap, or whether you had the problem prior to doing so. If I were you I would certainly raise your low pressure setting - it's at the lowest point and almost impossible for anyone to breathe at - and could well be responsible for your discomfort just trying to get enough air in. again if that started when you began Cpap. I'd try it at 6 or 7 for now and possibly in the future even higher. Not sure where your cough comes from of course, but you may be able to figure it out in time once you have some of these beginner problems tweaked. Experiment with humidifier settings as well - some need lots, some none (like me, who lives in a humid climate), and some need none in summer, but in winter, with central htg drying everything out, they need more.

[supertiredperson]

If I were you I would certainly raise your low pressure setting

How do I do this?

[Julie]

You need to get into the clinician menu... and there are people here with that info, but if you go to Apneaboard.com, I believe that scrolling down on ? the second pg may take you to a list of C. menus for all machines.... find yours and download it for the directions. Others will show up here soon however!

[LSAT]

Hardly anyone cleans the hose, over decades in some cases, so I wouldn't worry about it. I wonder if your problem is that your system, muscles, etc. are still adjusting to Cpap and causing the pain... it certainly happens tp some people, but it would depend on the timing of your starting Cpap, or whether you had the problem prior to doing so. If I were you I would certainly raise your low pressure setting - it's at the lowest point and almost impossible for anyone to breathe at - and could well be responsible for your discomfort just trying to get enough air in. again if that started when you began Cpap. I'd try it at 6 or 7 for now and possibly in the future even higher. Not sure where your cough comes from of course, but you may be able to figure it out in time once you have some of these beginner problems tweaked. Experiment with humidifier settings as well - some need lots, some none (like me, who lives in a humid climate), and some need none in summer, but in winter, with central htg drying everything out, they need more.

Julie...According to the Sleepyhead Detail he provided, his minimum pressure is already at 10. Your comments will only confuse him.
Also...Most of his events are CAs....increased pressure would not help them. With the chest pains, maybe he should reduce his pressure.

[lwieland11]

Super tired - Have you ever been tested for allergies?

[Pugsy]

If I were you I would certainly raise your low pressure setting

How do I do this?

You don't need to raise your minimum pressure. It's already at 10 minimum which isn't low at all.
Julie just saw the 4 cm mention as a minimum in the statistics column that is the ramp starting pressure and assumed that was the minimum pressure setting and didn't see the actual settings at the top of the statistics...which is 10 min and 15 max.
She missed the settings portion stating what the settings are.
You aren't spending an inordinate amount of time at 4 cm anyway...it's going up to 10 fairly quickly.
Now ramp time does start over when you turn the machine off and then back on again in the middle of the night.
If you use the "Auto Ramp" feature the machine will suspend the ramp if your airway tries to close off before you get up to that 10 cm.

You don't need more pressure anyway. The bulk of your already low AHI is CA/central and we don't/can't fix centrals with more pressure from your machine. I doubt those centrals are pressure related anyway. They are too spread out over the night and don't seem to be made worse when the machine does increase the pressure.

[tan]

Just something to think about:
he spent 9.34hr in his bed, which means his sleep is quite-quite fragmented and those centrals could have been registered while awake. Spending in bed much less time (just 6 hours) could be a very hard but potentially good start to reset his internal clock. When the "condensed" sleep is established, the time spent in bed can be gradually increased. But the leaks should be addressed as soon as possible for they can be sleep disrupting in light sleepers.

[Julie]

Sorry - I looiked at the graph results and saw 4 as the min. pressure without looking at the 90/95%... did not mean to mislead him.

[supertiredperson]

Super tired - Have you ever been tested for allergies?

No, I have not been tested for allergies.

With the chest pains, maybe he should reduce his pressure.

This has been going on for the last 10 years, I have only been using a cpap for the last 1.5 years. And it is more of a tightness in my chest than pain. The actually pain comes from my upper back/shoulder blade area.

You don't need more pressure anyway. The bulk of your already low AHI is CA/central and we don't/can't fix centrals with more pressure from your machine. I doubt those centrals are pressure related anyway. They are too spread out over the night and don't seem to be made worse when the machine does increase the pressure.

Any thoughts on what I can do/try moving forward? I am trying to remember to turn off the machine when I wake so we can see what's happening, but when I wake up in those moments, I am just so out of it that I don't remember to do it.

But the leaks should be addressed as soon as possible for they can be sleep disrupting in light sleepers.

How I begin to address leaks? Should I start looking at new masks? I've been wanting to try another one out anyway, since I'm still waking up extremely tired everyday with a headache.

Just something to think about:
he spent 9.34hr in his bed, which means his sleep is quite-quite fragmented and those centrals could have been registered while awake. Spending in bed much less time (just 6 hours) could be a very hard but potentially good start to reset his internal clock. When the "condensed" sleep is established, the time spent in bed can be gradually increased. But the leaks should be addressed as soon as possible for they can be sleep disrupting in light sleepers.

Part of this is due to how tired I am when I wake up. I usually wake up and go back to sleep several times before I finally get out of bed. I'm not working right now, so I am able to just keep sleeping. I finally drag myself out of bed at some point, but only because I feel like I should, not because I actually want to or feel up to it. I feel like I could sleep all day. Every morning when I wake up, its like getting up at 1am, after going to bed at 10pm, my body is screaming that we still have at least another 6 hours before we have to be up, but its not 1am, its 11am, and I have been asleep for 9 hours.

I have noticed that my machine is making a high pitched whirring noise sometimes between inhaling/exhaling. I have read other posts about the Airsense 10 making loud hissing, or whirring noise in the air filter area. I wonder if this is contributing to me waking up so frequently at night? I also read that this is a result of the Simplus mask I'm using, not the machine itself, and the loud whirring noise is from the minimal amount of room for air in the mask itself, and that the whirring comes from the machines efforts to keep pressure in the mask.

Sorry - I looiked at the graph results and saw 4 as the min. pressure without looking at the 90/95%... did not mean to mislead him.

No worries, I appreciate your efforts. It's also just nice to see responses from others, and to know that people are actually looking at my charts and reading my posts and trying to help me. This alone has been source of positivity for me.

[Pugsy]

Any thoughts on what I can do/try moving forward?

In terms of settings and your AHI and your reports...I don't see anything that screams out "fix me".

But the fragmented sleep you report

I usually wake up and go back to sleep several times before I finally get out of bed

does stand out as a potential problem.

Sleep maintenance insomnia...google it and start reading.
Fragmented sleep will mess with how we feel even without OSA being added to the mix because you aren't getting the normal cycles in the normal progression and normal quantities for the restorative powers of sleep to work their magic.
Now figuring out what is causing the wake ups...not always so easy and then even harder to fix sometimes.

Your leaks and mask question...the leaks themselves aren't all that large and you aren't spending all that much time in large leak so in terms of negatively impacting your therapy the small amount of large leaks is unlikely to be much of a factor UNLESS the leaks are contributing to the wake ups. I routinely have worse large leaks than you are showing but they never wake me up so I don't worry about them.
But if any leak (even a tiny leak) causes sleep disruption then it needs to be worked on from the stand point of it disrupting the needed normal sleep cycles.

Your OSA appears to me more than adequately treated...at least on paper.
Now why your sleep is unrestorative and why you wake often...that's going to take a lot of hard work to try to figure out what is going on and how to fix it and that's assuming your fatigue is related to your sleep quality.
Not all fatigue is related to sleep quality or sleep apnea or any of the various sleep disorders.
Not all insomnia is related to sleep apnea either.

I know that we all would like for the cpap machine to fix all our problems but it can only fix bad sleep when the bad sleep is caused by sleep apnea. There's a huge long list of potential culprits for bad sleep or fatigue than just sleep apnea.
If the leaks are waking you up...work on reducing the leaks so the chance of more solid sleep is available.
In terms of actual therapy though...the leaks aren't bad enough to make that big of an impact on the therapy itself.

You might also do some research on other potential causes for fatigue and/or poor sleep quality and sleep maintenance insomnia.
Usual suspects.
Medication side effects.
Poor sleep hygiene.
Other health issues...mental or physical.
Insomnia
Bed comfort
Stress
Have your vitamin D level checked
If male..have the testosterone level checked

and the list goes on and on and on.

[tan]

Part of this is due to how tired I am when I wake up. I usually wake up and go back to sleep several times before I finally get out of bed. I'm not working right now, so I am able to just keep sleeping..

This is typical, but you should address your fragmented sleep nonetheless. It's simple but not easy at all: you have to spend in your bed like 6 hours and get up regularly at the same every day. Use an alarm clock for that. Once you sleep 6 hours without waking up, you can start increasing the amount of sleep by 15 mins every week.

[lwieland11]

After you get your CPAP therapy working a little better, if you're still having trouble with fatigue, etc., go see an allergist and get tested. Allergies can cause some of the symptoms you're experiencing especially the fatigue. I found this to be true. Good luck!

[supertiredperson]