Almost At My Wits' End

[palerider]

The feeling that the machine wants you to breathe sooner is a symptom of some human stress about the process. Once you fall asleep, the autonomic breathing process takes over. You breathe gently with little effort.

Maybe I'm not explaining this properly. On APAP, it would think I'm not breathing soon enough, so it would send a puff of air to determine if it was a central vs obstructive event. Most of the time, this would happen to me while I was in a very light stage of sleep, and the puff of air would startle me awake.

Then, because it determined it was some sort of event, it would ramp up the pressure. Then I was trying to fall back asleep with a higher pressure. Rinse and repeat.

It would only do that if it determined that your not breathing was obstructive in nature. If your airway was open, pressure would not change.

I think we need to see some actual data, and not just suppositions, no disrespect, but people's half awake drifting in and out of sleep ideas of what's actually happening is usually terribly flawed.

[palerider]

if you could download that and post some graphs here, then the experts can give you some specific advice. without the information about you, the best they can do is guess.

I've been using SleepyHead since the beginning, which is why I'm very familiar with my AHI and leaks and such.

What graphs would you like to see?

start here-

wiki/index.php/Sleepyhead:Organize

Unfortunately, "they" broke the wiki after i made that page.

Better to point people to the link that pugsy did that's in the sticky you already pointed OP at.

[greenjelloland]

How many hours of sleep are you averaging with cpap? Real sleep and not laying there trying to sleep?
Are those hours fragmented very much...wake up often?

Do you take any medications? If so, what?

What is your primary complaint that hasn't been resolved with cpap therapy? We know the headaches are improved....what persists that you wish you didn't have?

Usually 7+ hours, if I can stand it that long. Sleep is still very fragmented, like it was before CPAP therapy. That hasn't changed.

Current meds: Zyrtec, magnesium, Vitamin D, low dose doxepin.

Primary complaint: Fatigue (which is worsening with CPAP)

[Pugsy]

Fragmented sleep will trash sleep architecture/sleep quality and make us feel like crap even with the most perfect cpap therapy in the world.
Unfortunately there are a lot of potential culprits for fragmented sleep than just sleep apnea.

Trouble falling asleep is called sleep onset insomnia.
Waking often during the night or sooner than we want is called sleep maintenance insomnia.
Unfortunately if sleep apnea isn't the cause of whatever insomnia a person is having then the cpap can't fix the insomnia no matter how much we want to put all our problems in the sleep apnea basket.

Unfortunately sometimes just the addition of the cpap stuff itself (mask, pressure, etc) can make insomnia worse which even compounds the problem.

Talk to your doctor about the insomnia and also the fatigue. There's also a long list of potential culprits for fatigue.
It wouldn't be impossible for you to have multiple issues going on and/or something cpap just can't fix.

If your sleep quality is actually worse because of cpap...take a hard look at whatever might be causing the wake ups and see what you can do to fix those issues.

Until you can get more solid sleep with minimal wake ups your chances of feeling much better are pretty slim.

The importance of good quality sleep architecture is well described in this article.
https://www.sleepfoundation.org/sleep-t ... ects-sleep
While it specifically is talking about alcohol....substitute anything for disrupting sleep...doesn't have to be alcohol...it can be anything and the impact on sleep quality means things are in the toilet and we feel like crap.

[greenjelloland]

screenshot-20190107-125028.png (146.67 KiB) Viewed 450 times

[greenjelloland]

Fragmented sleep will trash sleep architecture/sleep quality and make us feel like crap even with the most perfect cpap therapy in the world.
Unfortunately there are a lot of potential culprits for fragmented sleep than just sleep apnea.

My sleep doctor seems to think my fragmented sleep is due to apnea.

Unfortunately sometimes just the addition of the cpap stuff itself (mask, pressure, etc) can make insomnia worse which even compounds the problem.

I'm not waking up any more during the night than I have for the past 20 years. The only new thing is using CPAP. It has increased the fatigue to where I'm now having the symptoms most people complain about with sleep apnea-- daytime sleepiness, drowsiness while driving, dozing off while sitting on the couch watching tv, etc.

If your sleep quality is actually worse because of cpap...take a hard look at whatever might be causing the wake ups and see what you can do to fix those issues.

And that is the million dollar question. I know CPAP is helping with my events, and my morning/afternoon headaches are gone. So it's doing something. But it is worsening the fatigue. I just don't get it.

Until you can get more solid sleep with minimal wake ups your chances of feeling much better are pretty slim.

I feel caught between a rock and a hard place. Do I go back to headaches and increased risk of heart attacks and strokes, and accept that I never feel rested in exchange, or...?

I was hoping maybe y'all had some ideas from looking at my graph above to clue me in to what I could tweak.

Thanks so much for all your help!

[Pugsy]

Your flow limitation graph is rather active.
If you were in auto mode the machine would likely try to kill those FLs with more pressure.
Since you are taking Zyrtec regularly I assume you have chronic nasal congestion issues so some or all of that FL graph might be related to the nasal congestion and more pressure won't usually fix nasal congestion FLs.

How much of an impact do you think your nasal issues might be having on sleep quality?

Otherwise I see nothing of great excitement going on with your report.

You might want to read this
http://adventures-in-hosehead-land.blog ... er_19.html

Doctors are quick to blame everything on sleep apnea....but that doesn't mean they are always right about it.

I have sleep maintenance insomnia myself....has nothing to do with sleep apnea at all. I know that.
The machine simply cannot fix problems not related to sleep apnea.
But it can make insomnia worse.

Those headaches...those are from low oxygen levels....those are really bad news and the damage done to the body is going to be long term really bad.
You need to figure out what you can do to improve sleep quality and trust me....I know that is easier said than done but going without cpap isn't a good option.

[Pugsy]

Is the doxepin to maybe help you sleep? Any chance you could increase the dosage?

[greenjelloland]

Since you are taking Zyrtec regularly I assume you have chronic nasal congestion issues

It is actually for another weird allergic reaction thing that has to do with mast cells.

so some or all of that FL graph might be related to the nasal congestion and more pressure won't usually fix nasal congestion FLs.

I have had a bit of a head cold the past few days, so that may explain that.

Doctors are quick to blame everything on sleep apnea....but that doesn't mean they are always right about it.

Nothing else has ever helped with my nighttime waking. You get used to it after 25+ years.

But it can make insomnia worse.

I am wondering if I am having more arousals during deeper sleep levels with CPAP therapy, ones I don't come to full awareness about. The amount I'm waking up at night is about the same (at least the ones I'm aware of), or maybe even slightly less with CPAP therapy.

Those headaches...those are from low oxygen levels....those are really bad news and the damage done to the body is going to be long term really bad.

Yeah, the fact that my headaches/migraines have decreased is the reason I keep forcing myself to use the machine. I guess I hardly breathed at all during REM sleep in my study.

You need to figure out what you can do to improve sleep quality and trust me....I know that is easier said than done but going without cpap isn't a good option.

That's the issue, though. I am used to functioning on fragmented sleep. I've done it almost my whole adult life. But the CPAP usage is making things WAY worse, and I am getting desperate. I have no idea what to tweak. Somehow, I've got to be able to tolerate the therapy better, but I don't know what to do.

[greenjelloland]

Is the doxepin to maybe help you sleep? Any chance you could increase the dosage?

Doxepin is for my Dercum's Disease.

I don't tolerate medications very well (extremely reactive), so I'm on a fractionated pediatric dose of doxepin. It definitely helps with the pain.

[Pugsy]

How much of an impact do you think the pain is having on your sleep quality?

You might want to learn how to scroll through your flow rate and look for arousal breathing
http://freecpapadvice.com/sleepyhead-free-software
I bet you are having more arousals than your realize. I know that's always been what I have seen in myself. I get maybe 7 or 8 pain related arousals (my sleep maintenance insomnia culprit) that I remember but when I go look at the flow rate I see twice that many.
Takes a bit of experience to figure out awake/semi awake/arousal breathing from asleep breathing but you can get close.

This guy here....doesn't have OSA at all...but has crappy sleep from a boatload of spontaneous arousals (no known cause and not related to sleep disordered breathing)....and understandably feels like crap.
CPAP didn't help him because his crappy sleep wasn't related to sleep apnea and like you the mask and cpap stuff itself also seemed to increase the already large number of arousals.

The asleep breathing is the nice rhythmic boring smooth patterned air flow.
The arousal stuff...all that jagged irregular flow rate. He actually had very little decent sleep quality during this segment of his report (which by the way is from a different machine and different software) but you can use SH and still look...just takes a little more time.
No wonder he felt like crap.

[greenjelloland]

How much of an impact do you think the pain is having on your sleep quality?

That is the main issue I have with interrupted sleep. This is likely why I have had fragmented sleep for most my adult life.

CPAP didn't help him because his crappy sleep wasn't related to sleep apnea and like you the mask and cpap stuff itself also seemed to increase the already large number of arousals.

Well, I do know I have OSA and that I hardly breathe at all during REM. I have definitely seen an improvement with using CPAP (headaches have pretty much gone, and my GERD has improved). But I do swear I have a lot more arousals now, judging from symptoms. Thank you for the links... I will look at that and figure out my arousal patterns now.

I guess I'm here desperately trying to figure out how to tweak my CPAP therapy so that I can at least get back to my usual/normal fragmented sleep schedule. I can deal with that. What I can't deal with is how much worse things have gotten with therapy.

[Pugsy]

Are you having any mask related issues at all?
Comfort? Leaks? Anything that we could maybe fix with the mask itself.

I doubt the answer is in your settings themselves...gotta look elsewhere.

Do you normally breathe through your nose just fine during the day?
How come they gave you a full face mask? From a sensory aspect...there's so much to FFM to maybe cause more sensory issues and unless you just have to use one because the nose simply won't clear up....maybe a less real estate to skin mask might be an option to maybe help with any cpap equipment related arousals.

I am just trying to think outside the box for things to maybe lessen the chance of arousals related simply to cpap stuff.

[ChicagoGranny]

greenjelloland

While you are thinking about the things Pugsy is helping you with, here is a general checklist that would be good to review.

The Oft Overlooked Part of Good CPAP Therapy

- Practice good sleep hygiene (Google it and read several sources; ignore extreme advice.)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping and sex only, and make sure the bedroom and bed are comfortable.
- Learn to appropriately handle emotional stress in your life
- Do not listen to your breathing or the sound of the machine as you are falling asleep. (Some people, including me, actually find listening to their breathing and the sound of the machine to be relaxing.)
- Distract your mind by thinking of a pleasant, relaxing activity that you enjoy.
- If you are awakening at night, do not be too concerned. It is actually a normal part of sleep. (It does become a problem though for people who, when they awaken, become frustrated and have difficulty returning to sleep.)
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems

This is a checklist. Some of the things you already do. Some are easy and can be done right away. Others you can work at over time.

CG

[greenjelloland]

Are you having any mask related issues at all?
Comfort? Leaks? Anything that we could maybe fix with the mask itself.

Well, the mask is as comfortable as a mask could possibly be, I suppose. I am due to get a new one the first of February, and thought I'd try the new full face mask I heard about that has a small profile. Not that the Dreamwear is huge, but it isn't my favorite. It was just the least evil of all the masks I tried on.

Do you normally breathe through your nose just fine during the day?

Yes.

How come they gave you a full face mask?

The pressure from nasal masks pushes my mouth open, and I cannot tape my mouth shut (adhesive allergies) nor use a chin strap (TMJ). As it is, I usually wake up with a completely dry mouth from it being forced open from the pressure.

I've been scanning my SleepyHead daily files, looking at the Flow Data. If anything other than the rhythmic breathing patterns equate to an arousal, I'm waking up alllllll night long.

Sigh.