How do you know when bad sleep is NOT cpap-related?

[lynbarnes]

Hubby has been on cpap since 2009; I started two weeks ago. I have adapted well to the mask and sleep 7+ hours per night with little leakage and usually 1-2 mask-offs per night. He, on the other hand, has struggled almost the whole time. He just got a new machine that showed pretty significant leakage but I'm pretty sure his old mask and system (that didn't have tracking that we could access) leaked worse based on the sound and air flow that's been blown in my face for the last few years.

Anyway, I was wondering how to determine how much of his sleep difficulties are from causes outside of cpap. He has frequent bad dreams , occasional sleepwalking, talking in his sleep, trouble falling asleep. His new sleep doc has referred him to a CBT sleep therapist for his insomnia, but I was wondering how helpful this will be for some of the stuff that affects him while he's sleeping. To complicate things, it looks like he might have peripheral artery disease, which can cause muscle aches and spasms. Testing for this is still underway.

So maybe the second part of my question is how do you make cpap as effective as possible with any other health issues you may be having?

[Julie]

What I think he should do is get a referral to a neurologist who specializes in sleep disorders... there are a lot of them and probably lots are unknown to the average person who only hears about sleepwalking, etc. But until he knows what else, if anything else, is going on, it wouldn't be possible to say how OSA or Cpap might be affected by the 'anything else'. However, he can certainly make every effort to do his best with C (or A)pap. Is he using SleepyHead or other software to track overnight progress and see if anything needs tweaking?

I personally think CBT is great for many issues, but not necessarily either of the above as they are physiological... unless he is also known (diagnosed) to have emotional problems not related to sleep or other physical ones.

[Wulfman...]

Hubby has been on cpap since 2009; I started two weeks ago. I have adapted well to the mask and sleep 7+ hours per night with little leakage and usually 1-2 mask-offs per night. He, on the other hand, has struggled almost the whole time. He just got a new machine that showed pretty significant leakage but I'm pretty sure his old mask and system (that didn't have tracking that we could access) leaked worse based on the sound and air flow that's been blown in my face for the last few years.

Anyway, I was wondering how to determine how much of his sleep difficulties are from causes outside of cpap. He has frequent bad dreams , occasional sleepwalking, talking in his sleep, trouble falling asleep. His new sleep doc has referred him to a CBT sleep therapist for his insomnia, but I was wondering how helpful this will be for some of the stuff that affects him while he's sleeping. To complicate things, it looks like he might have peripheral artery disease, which can cause muscle aches and spasms. Testing for this is still underway.

So maybe the second part of my question is how do you make cpap as effective as possible with any other health issues you may be having?

You didn't mention which specific mask he was using or "how" he's been struggling. If it's a nasal mask, mouth leaking could virtually nullify his therapy (if it's significant). Same thing with other types of leaking......like "Large Leaks".
If he got a new machine, hopefully you/he can monitor the data to see what's going on.


Den

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[Julie]

Den... I think he's using the Flexi-fit (see signature).

[JDS74]

While following up with the other testing, it is very helpful to track the data from the machine on a daily basis and to see if anything correlates with eating habits or sleep hygiene habits.

In your case, the software choices seem to be either ResScan from ResMed or SleepyHead from our Aussie friend Jedimark.

Do you have a copy of his most recent sleep study? If it's older than a few years, then see if a new study is warranted to get a good baseline for where he is. In the sleep study as well as in the titrations study, there will be data on the number of awakenings and/or arousals not leading to an awakening that are not caused by breathing difficulties. For example RLS and PLMD can cause significant issues in sleep quality.

Get the leaks under control as excessive leaks can be disturbing to sleep. A new mask or some training on fitting the mask might be in order. If he uses a full-face mask, then look into getting a soft cervical collar which will help with some types of FFM leakage by supporting the jaw at night and preventing his jaw from dropping and displacing the mask.

Once that's under control, the next step to get the AHI under control if it is not already (under 5 per hour). Ask you sleep doctor about adjusting the pressure settings to improve the outcome. It's always good to get the doc on board.

If you don't have a pulse oximeter, get one that is recording and for which you can print out reports. Low SpO2 levels are not helpful and may indicate a need for supplemental oxygen - get you doctor on board for this one also. I have a CMS50F meter that records and creates very useful reports.

If you sleep doctor is a neurologist, have a serious discussion about the sleep walking and the bad dreams. If not, then ask for a referral to a neurologist to eliminate any neurological causes. There are medications that can cause those symptoms as a side effect. Make a list of all the medications he is taking INCLUDING any over the counter ones and take a trip to your local pharmacist to talk about drug interactions. Most doctors don't delve into that issue as deeply as they might.

[lynbarnes]

Hubby just got the same exact equipment as I have. Not sure if we both need the same thing or that's just what the DME gives out...so he does have a full face mask. But he's always struggled with leaks. Does having a beard affect mask seal much?

I've just downloaded sleepyhead, but he's only got one night's worth data on the new machine. The old machine uses a smartcard and I don't want to purchase the reader now that we have the new machine. He redid his sleep study just last week and his AHI is down from the first. This doc even took him off O2 since his numbers without it were good during the sleep study. This doc reduced his pressure slightly too. But they did titration in the study, and it seemed justified, based on what I can tell.

He also has PTSD related to military service, so that might account for some of bad sleep. I'm hoping the CBT can put a dent in it. I just want to make sure that we get all the sleep and apnea stuff under control so we can separate out that from the physical stuff. Are there any other people that have pretty significant health issues not necessarily related to their xpap treatment and how do you manage both?

[Wulfman...]

Hubby just got the same exact equipment as I have. Not sure if we both need the same thing or that's just what the DME gives out...so he does have a full face mask. But he's always struggled with leaks. Does having a beard affect mask seal much?

I've just downloaded sleepyhead, but he's only got one night's worth data on the new machine. The old machine uses a smartcard and I don't want to purchase the reader now that we have the new machine. He redid his sleep study just last week and his AHI is down from the first. This doc even took him off O2 since his numbers without it were good during the sleep study. This doc reduced his pressure slightly too. But they did titration in the study, and it seemed justified, based on what I can tell.

He also has PTSD related to military service, so that might account for some of bad sleep. I'm hoping the CBT can put a dent in it. I just want to make sure that we get all the sleep and apnea stuff under control so we can separate out that from the physical stuff. Are there any other people that have pretty significant health issues not necessarily related to their xpap treatment and how do you manage both?

Absolutely.......beards affect the ability to get a decent seal. Lots of users have them though.

I think it'll be beneficial using the software and trying to iron out what MAY or may NOT be applicable.
PTSD could affect it. Don't know.

Yes, lots of CPAP users have other medical issues. Many have Diabetes, Afib, and many others. All you have to do is do some reading or searching through the discussions on the forum to see them. Some people don't like to talk about them and some people don't mind. When you take into consideration that many of the forum members are "getting up there in years", it's fairly normal to have other health issues.


Den

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[Julie]

First, a beard can significantly affect the mask seal, but some masks are better than others at doing the job (I know someone who used a Forma FF but I'm sure you'll get other ideas). But longterm, if necessary, maybe he needs to consider losing the beard.

And getting the software stuff sorted out - without following what's going on overnight it's hard to figure out how to help.

And PTSD? I'd say it could make a very big difference if it hasn't been resolved... again, something that needs tending to.

You're trying to second guess everything yourself without enough professional input, and that won't work too well. He needs first to get a concise diagnosis about his apnea, his neuro-based other sleep problems (which may or may not be PTSD related), and the mental/emotional stuff that may or may not affect apnea. And your family doctor should be coordinating it all and interpreting it to you and your husband... not leaving it to either of you to sort out (or try to make sense of on the internet - there's so much stuff out there, and being able to sort it on your own will confuse things, not help them... and neither of you are doctors I'll presume).

[Wulfman...]

Here's a link to a search I just did on "PTSD", so you can see how much discussion has already taken place on just that one issue.

viewtopic/t104913/search.php?keywords=PTSD


Den

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[robysue]

lynbarnes,

It can be very tough trying to sort out how much of the sleep problems are due to CPAP-troubles and how much are due to other things, including plain old insomnia.

It may take a multi-pronged approach to solving, or at least minimizing, hubby's sleep problems.

Since hubby has a long history of struggling with the machine and you suspect that leaks are part of the problem, tracking the data on the new machine for a week or so is definitely a good idea. Be aware of how your hubby's (and your) machine scores leaks: You say both you and hubby are using Resmed AirSense A10 Elites. The machine records excess leaks, so any leakage shown in the data is indeed excess leakage. You should monitor the leaks in SleepyHead or ResScan instead of just relying on the monitor and the web-based application. Any leak that is over 24 L/min is an official Large Leak. If hubby is spending a lot of time in Large Leak territory, then fixing the leaks is critical. But even if the leaks never come close to 24 L/min, it's possible that leaks may be adversely affecting hubby's sleep by causing him to arouse to fiddle with the mask multiple times each night.

Beards do make fitting a full face mask more difficult. If hubby is NOT a dedicated mouth breather, he may do much better with a nasal mask or nasal pillows. My own hubby has a full (shaggy) beard and uses a nasal mask without any problems getting a seal that lasts all night.

But now let's turn to other things that are likely affecting your hubby's sleep: Since hubby has PTSD, it's important that he's aware of how that might affect his sleep. And it's important that he is under the appropriate medical care for managing the PTSD since that affects both his daytime functioning and his sleep. You also say that hubby has frequent bad dreams, occasional sleepwalking, talking in his sleep, and trouble falling asleep. It's important to try to establish which of these things might be directly tied to the PTSD. If hubby is being treated for the PTSD, it's time to ask his PTSD doctor/counselor whether the bad dreams, sleepwalking, and talking in his sleep are related to the PTSD and if so, whether treating the PTSD will help bring those things under control. If hubby is taking medication to manage the PTSD, then it's worth talking to both the prescribing doctor and the pharmacist about whether any of the prescribed medication may adversely affect sleep. In particular, it's worth finding out whether any of the prescribed medication affects REM sleep, and if so, how it affects REM sleep. An you may also need to work on getting the sleep doctor and the person treating the PTSD (if there is one) talking to each other and being aware of the other problems your hubby is facing.

You also say that hubby is being tested for peripheral artery disease, and you note that peripheral artery disease can cause muscle aches and spasms, which (in theory) could also be adversely affecting his sleep. This is something that you and hubby will need to ask questions about should he be formally diagnosed with peripheral artery disease. Be up front with the doc about your questions and concerns: Directly ask him: Can this cause sleep problems? Can the drug(s) you want to prescribe to treat this adversely affect sleep?

Finally you write:

His new sleep doc has referred him to a CBT sleep therapist for his insomnia, but I was wondering how helpful this will be for some of the stuff that affects him while he's sleeping.

and

He also has PTSD related to military service, so that might account for some of bad sleep. I'm hoping the CBT can put a dent in it.

I'm someone who has done serious, long-term work with CBT-Insomnia (CBT-I), but I also do NOT have any of your hubby's other issues. In other words, I started CBT-I because starting CPAP triggered severe insomnia problems in me. (I wrote about those problems at length here when I was a newbie.) After 3 months of PAPing, I had a second titration study done, and on that study, I thought I'd slept for 3 1/2 to 4 hours out of the 6 hour time-in-bed window; the data showed I'd slept for less than two hours. This was substantially worse than either my diagnostic study or my first titration study in terms of sleep efficiency.

CBT-I did help me a lot in terms of teaching me how to get to sleep in a timely fashion and in terms of partially consolidating my sleep cycles so I was waking up less and staying awake for shorter periods of time during the night. I also learned a lot about setting reasonable and achievable goals in terms of the quality of my sleep. I am still not sleeping as well (or as long) as I and my current sleep doctor would like, but I *am* sleeping most of the night every night and I've learned a lot about what aggravates my sleep problems and what tends to help minimize them. But CBT-I was very hard work and there are things now that I've grown tired of doing (getting up at the same time every day is one of those), and so I'm not sleeping as well as I was a year and a half ago when I still had the will power to do some of the things I've grown tired of doing. Would I go through CBT-I again, knowing what I know now? Yes. It helped me tremendously in improving the worst parts of my bad sleep at the time and even if it hasn't fixed all of my problems, it's given me significant insights into what I can and cannot control when it comes to my sleep. And I have a large set of tools that I can (and do) use to keep my sleep problems from getting worse when things related to sleep start sliding down a slippery slope.

At the most basic level, CBT-I begins with teaching the patient some basic guidelines about "normal" sleep, including such things as: Many people routinely wake up after every REM cycle for a short period of time and the trick is not to get upset that you find yourself awake. That's a reasonable lesson that a typical, run-of-the-mill insomniac with no other issues needs to learn, but it's not necessarily something that will help a person who's dealing with intense bad dreams that may be PTSD related.

If your hubby chooses to do some CBT-I, it's important to make sure the CBT-I therapist understands that hubby has PTSD and what (if anything) is being done to manage the PTSD. Hubby will need a CBT-I therapist who takes a really solid general health history and keeps the big picture (including the PTSD and other health problems) in mind when making suggestions for how to use behavior modification techniques to improve the sleep. And if hubby has a doctor or therapist who is treating the PTSD, it's important to encourage the PTSD guy and the CBT-I guy to communicate with each other.

[lynbarnes]

It can be very tough trying to sort out how much of the sleep problems are due to CPAP-troubles and how much are due to other things, including plain old insomnia.

It may take a multi-pronged approach to solving, or at least minimizing, hubby's sleep problems.

If your hubby chooses to do some CBT-I, it's important to make sure the CBT-I therapist understands that hubby has PTSD and what (if anything) is being done to manage the PTSD. Hubby will need a CBT-I therapist who takes a really solid general health history and keeps the big picture (including the PTSD and other health problems) in mind when making suggestions for how to use behavior modification techniques to improve the sleep. And if hubby has a doctor or therapist who is treating the PTSD, it's important to encourage the PTSD guy and the CBT-I guy to communicate with each other.

All good to remember. We are up to our armpits in docs right now, and we seem to have found a primary care doc that is trying to keep in the loop with all the specialists hubby has been referred to (including the new sleep doc).

Thanks everyone for your input!!

[SleepyToo2]

For those who think a beard is a no-no when it comes to CPAP, it absolutely is not. I find the new P10 mask (nasal pillows) is wonderful, because it doesn't touch anywhere facial hair is growing. OTOH, a FFM is a real pain to get adjusted. I am not sure that I ever did. There have been a few masks that I have said "this is the one," but the P10 may have stopped that cycle. Good luck with resolving the bad sleep questions. For me, it varies every time.