Taking CPAP mask off at night / acting out dreams

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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ohdanny
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Taking CPAP mask off at night / acting out dreams

Post by ohdanny » Mon Jul 06, 2015 4:30 am

Hello all!

I'm 39 days on my CPAP machine and overall, things are a lot better than they were before. Sleep feels "restorative" once again and I am no longer waking up hourly to use the washroom. I've been able to sleep about 6 hours consecutively without any kind of medication (when I'm able to keep my mask on). The mask is very comfortable and my heart no longer races when I lie down at night, so that's awesome! On the negative side, I'm still feeling extremely tired every day by about 1pm and it makes it difficult to do normal things (drive, work, socialize).

One of the problems I'm currently having is that I am waking up 3 or 4 days a week having taken my mask off entirely. Now, I've always been told that I do a lot of weird things in my sleep (kick, punch, talk, act out my dreams) and I want to say that maybe this is why I am taking my mask off at night. There's been a few times where I remember having a dream about something jumping on my face and I'd wake up in a panic and rip off my mask. Other times I just wake up without my mask on and without any memory of taking it off. In the past (it hasn't happened since I started CPAP), I've struggled with waking up suddenly at night and experiencing hallucinations that cause me to jump out of bed.

Is there anything I can do to help stop myself from taking my mask off at night? It's so frustrating because I very rarely ever remember doing any of these weird things that people tell me that I do in my sleep. Of the three sleep studies I've had, they suggested I might benefit from some kind of medication that might help control these movements in my sleep if I still felt tired after the OSA was taken care of. When I saw my new sleep doctor last week, he acted unconcerned about my previous doctor's recommendation, but he wanted to review my previous medical records before we pursue any kinds of treatment.

Is it worth pursuing some kind of medication to treat the movements and to see if it helps me get more sleep? Can acting out your dreams cause you to wake up too early / not feel rested? Am I just tired because of the whole sleep debt thing? I see my doctor again in two weeks and I want to go in there with a game plan.

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Julie
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Re: Taking CPAP mask off at night / acting out dreams

Post by Julie » Mon Jul 06, 2015 4:45 am

Short answer - some people tape the mask to their face (straps on cheeks) at night so they'll awake when pulling it off and can rearrange it to go back to sleep.

Long answer - you could see a neurologist specializing in sleep for your long term acting up... it's not at all unheard of, though in your case, if you've had OSA most of your life (rather than being able to trace it to a particular time) the acting might be about your not being able to get enough air, but if not, a neuro. might help, though I'd be very careful about going on any meds that could spoil your otherwise good Cpap experience.

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MamaGeek
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Re: Taking CPAP mask off at night / acting out dreams

Post by MamaGeek » Mon Jul 06, 2015 5:42 am

Acting out dreams is called REM Sleep Behavior Disorder (RBD). You should definitely see a doctor, because it can be an early sign of a neurological disorder, like Parkinson's or Multiple Systems Atrophy (MSA).

REM Sleep Behavior Disorder on WebMD

My Dad has OSA, RBD, and MSA. He used to punch my Mom in his sleep! She slept in a different room for a while, until his doctor prescribed medication that made it stop. I don't know what the drug is called, or what kind of doctor prescribed it for him, but if you ask whomever prescribed your CPAP, he should at least be able to refer you to the right specialist, if he can't handle it himself.

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Julie
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Re: Taking CPAP mask off at night / acting out dreams

Post by Julie » Mon Jul 06, 2015 6:17 am

Mama Geek, do you seriously think it's appropriate to scare the hell out of someone with a bit of overactive sleep junk by talking about multisystem atrophy? Do you have any idea what that diagnosis actually is about?

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ohdanny
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Re: Taking CPAP mask off at night / acting out dreams

Post by ohdanny » Mon Jul 06, 2015 6:40 am

Julie wrote:Short answer - some people tape the mask to their face (straps on cheeks) at night so they'll awake when pulling it off and can rearrange it to go back to sleep.

Long answer - you could see a neurologist specializing in sleep for your long term acting up... it's not at all unheard of, though in your case, if you've had OSA most of your life (rather than being able to trace it to a particular time) the acting might be about your not being able to get enough air, but if not, a neuro. might help, though I'd be very careful about going on any meds that could spoil your otherwise good Cpap experience.
What kind of tape are we talking here? Something like medical tape? I'd wrap my mask with duct tape if I didn't think it would make my skin break out. I don't trust my sleep self considering the things I've been told that I do.

I've seen a regular neurologist about two years ago when I started this journey because they were worried that the jumping out of bed were caused by seizures. After a 3-day hospital EEG, they said that everything looked normal. Although I'm not keen going down that path again, it is something I'll talk to my sleep doctor next time, thanks!
MamaGeek wrote:Acting out dreams is called REM Sleep Behavior Disorder (RBD). You should definitely see a doctor, because it can be an early sign of a neurological disorder, like Parkinson's or Multiple Systems Atrophy (MSA).

REM Sleep Behavior Disorder on WebMD

My Dad has OSA, RBD, and MSA. He used to punch my Mom in his sleep! She slept in a different room for a while, until his doctor prescribed medication that made it stop. I don't know what the drug is called, or what kind of doctor prescribed it for him, but if you ask whomever prescribed your CPAP, he should at least be able to refer you to the right specialist, if he can't handle it himself.
I do so many weird things in my sleep. I've done the whole punching and kicking thing to partners, having whole conversations, waking up on the other side of the room etc. I also recently found out that I've initiated sex in my sleep without realizing it! This was a huge shocker because I always thought it was my exes that were the ones initiating it. What I'm trying to figure out how is if my sleep movements could be related to why I am still feeling tired. I'm single right now and sleep alone, so it's not really an issue whether what I do in my sleep bothers anyone else.

Even if my sleep issues were predictive of Parkinson's or MSA, isn't that going to happen regardless of what I do? No sense in worrying about it. I mean, I started hallucinating and jumping out of bed when I was about 17 and I'm 29 now.

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Julie
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Re: Taking CPAP mask off at night / acting out dreams

Post by Julie » Mon Jul 06, 2015 7:25 am

3M Micropore tape from a drugstore - not in the aisle with Scotch tape tho' (it wont kill you coming off). It's what we use to tape lips when trying to stop leaks.

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MamaGeek
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Re: Taking CPAP mask off at night / acting out dreams

Post by MamaGeek » Mon Jul 06, 2015 8:25 am

Julie wrote:Mama Geek, do you seriously think it's appropriate to scare the hell out of someone with a bit of overactive sleep junk by talking about multisystem atrophy?
I do, because it's a real risk. WebMD cited a study that showed 38% of people with RBD develop Parkinson's or MSA. And while that information may not do anything to prevent those disorders, it can point you to symptoms you should look for. Fortunately, MSA is extremely rare. Parkinson's is much more common, and more treatable. If you know you are at risk for it, you can watch out and potentially get earlier treatment. I liken it to getting earlier mammograms if your grandmother and mother had breast cancer. If you know you are at higher risk, you can be on the lookout and hopefully see warning signs earlier. I think that is good information for a person to have.

ohdanny, I am deeply sorry if I scared you, and I hope you understand why I pointed you to that connection.

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Re: Taking CPAP mask off at night / acting out dreams

Post by HoseCrusher » Mon Jul 06, 2015 10:52 am

Another approach is to "make friends" with your mask.

As you lay in bed about ready to drift off to sleep, think about something you enjoy. Think about waking up in the morning full of energy and fully rested ready to enjoy the day. Next you confess to yourself that in order to get a restful sleep you need to keep your mask on all night. What you are doing is trying to program your subconscious mind into accepting the mask.

I visualize that I am going diving and drift off to sleep expecting to see wonderful things on my dive. While diving your mask is important so there is no question of taking it off.

Find something that you can visualize. It may be something as simple as visualizing yourself waking up with the mask on.

You can also make an effort to personalize your mask. Color it, hang some yarn from it, paste a mustache on the headband, make it your friend...

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Re: Taking CPAP mask off at night / acting out dreams

Post by tedburnsIII » Mon Jul 06, 2015 11:03 am

Julie wrote:3M Micropore tape from a drugstore - not in the aisle with Scotch tape tho' (it wont kill you coming off). It's what we use to tape lips when trying to stop leaks.
I'd second that. I purchased mine on ebay for less than 4 bucks shipped, it came on a dispenser, 10 yds. Because I've used it to tape my mouth, I opted for the 2" variety. It's also sold 1". I prefer it over Gorilla or Painter's tape. (I still use Gorilla to tape overnight oximeter to my finger).
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kaiasgram
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Re: Taking CPAP mask off at night / acting out dreams

Post by kaiasgram » Mon Jul 06, 2015 1:56 pm

MamaGeek wrote:
Julie wrote:Mama Geek, do you seriously think it's appropriate to scare the hell out of someone with a bit of overactive sleep junk by talking about multisystem atrophy?
I do, because it's a real risk. WebMD cited a study that showed 38% of people with RBD develop Parkinson's or MSA. And while that information may not do anything to prevent those disorders, it can point you to symptoms you should look for. Fortunately, MSA is extremely rare. Parkinson's is much more common, and more treatable. If you know you are at risk for it, you can watch out and potentially get earlier treatment. I liken it to getting earlier mammograms if your grandmother and mother had breast cancer. If you know you are at higher risk, you can be on the lookout and hopefully see warning signs earlier. I think that is good information for a person to have.

ohdanny, I am deeply sorry if I scared you, and I hope you understand why I pointed you to that connection.
MamaGeek, you are right. It was appropriate to bring up the subject of REM Behavior Disorder (RBD) given all the details in ohdanny's post. I would have brought it up in a different way, not assuming that all acting out of dreams means the person has RBD. But it is certainly appropriate to ask if RBD has been ruled out when someone describes almost all the classic and rather unique symptoms of this disorder. ohdanny describes more than just a bit of problematic behavior during sleep.

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Re: Taking CPAP mask off at night / acting out dreams

Post by kaiasgram » Mon Jul 06, 2015 2:22 pm

ohdanny wrote:What I'm trying to figure out is if my sleep movements could be related to why I am still feeling tired.
That's a good question and one that may be challenging to figure out. Your tiredness could be all the activity/movement being disruptive to your sleep, or it could just be that because you're removing the mask and sleeping periods of time without it you're just not getting the full benefit of your CPAP yet.

Then there's the fact that you just started treatment 5-6 weeks ago. For some people it takes a while longer to start feeling significantly better.

For the periods of time when you do have the mask on, is your apnea being effectively treated? You have a good machine with full treatment data available. You could get SleepyHead set up and post some of the data being recorded by your machine. It might be helpful if you could at least rule out sub-optimal treatment as a factor when you see your doc in a couple of weeks.

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ohdanny
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Re: Taking CPAP mask off at night / acting out dreams

Post by ohdanny » Mon Jul 06, 2015 3:47 pm

kaiasgram wrote:For the periods of time when you do have the mask on, is your apnea being effectively treated? You have a good machine with full treatment data available. You could get SleepyHead set up and post some of the data being recorded by your machine. It might be helpful if you could at least rule out sub-optimal treatment as a factor when you see your doc in a couple of weeks.
I think so. I've tried so many different treatments prior to CPAP (on account of no one knowing what was wrong with me) and nothing made a dent in making sleep any better. CPAP, on the other hand, 100% feels like it did something. In a very concrete sense, I no longer wake up at night to go to the bathroom constantly. Subjectively, I feel like I sleep so much more deeper than I have in a long time. On days where I have bad leaks in my mask or it's off entirely, I wake up way more prematurely than I normally would with the mask on.

Thanks to all of you guys here, I made sure to specifically request a machine that was fully data capable before I received my prescription, however I've been unsure how any of it could help me in my present situation. The brief observations I've made through Sleepyhead showed that I am more likely to wake up an hour or so after the mask comes off or when I have major leaks. When it stays on and no leaks, my AHI tends to be under 1. When I went and saw my new doctor, I expected him to have a lot more detailed information on his printout of my SD card than what I saw... he literally just had a small chart of my usage hours (which any person with this machine could see through the little web app that comes with it) and did not make any detailed comments. It made me kind of angry, honestly.

Is there anything in Sleepyhead that I could look for that might help me better understand what's going on?
kaiasgram wrote:Then there's the fact that you just started treatment 5-6 weeks ago. For some people it takes a while longer to start feeling significantly better.
Right! Which has been hard. I feel like I hear so many anecdotal stories from people saying that we need to make up our sleep debt and that you may or may not eventually hit a point where you feel better. When I tried to ask my new doctor about sleep debt, he dodged the subject. Honestly, if a doctor could just tell me that "Yes, you will eventually stop feeling exhausted by 1pm every day as you continue to use your machine," I wouldn't even be making this post. The problem is that I've spent the last few years not having any answers to why I have been having sleep difficulties, so it's frustrating for me to just sit here doing nothing when I could be having some whole other issue going on that is impeding my progress. Heck, if I hadn't pushed so hard to try to figure out what was wrong before this, I'd still be sitting at my psychiatrist not knowing why I felt tired yet not depressed.

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Re: Taking CPAP mask off at night / acting out dreams

Post by kaiasgram » Mon Jul 06, 2015 4:10 pm

ohdanny wrote:Is there anything in Sleepyhead that I could look for that might help me better understand what's going on?
How are your leak graphs in general?
What about Flow Limitation?
Snores?

Snores and flow limitations are not reflected in the AHI but they can affect sleep quality. So can a lot of leaking.
if I hadn't pushed so hard to try to figure out what was wrong before this, I'd still be sitting at my psychiatrist not knowing why I felt tired yet not depressed.
We really do have to be our own advocates in today's health care environment. You've obviously been proactive and that's to your benefit. And thank goodness since your doc only looked at your compliance hours. Grrrr.... You're not alone -- check out clearyt's current thread -- AHI of 38 on her machine for an entire year and her docs not addressing it. What do you want to bet they're just looking at her compliance hours?

I encourage you to have a serious talk with your doctor about the dream-behavior issues. You mentioned that after your sleep studies the docs mentioned medication for this issue which makes me wonder if they identified RBD or something that looks like it. Do you remember if they specifically mentioned clonazepam (Klonopin)? That would be a hint since it's the first line treatment for RBD.

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