Tired, not sleepy

[Oneiros]

Hi, I'm a new user, both to cpaptalk and to CPAP in general.

I have been reading others experiences the normal symptoms, and my symptoms are quite different. I'm hoping someone can explain why.

First of all, CPAP works for me. Really well, Really really well. From the first night. I'm sure some people around me think I'm on drugs or something. Just today my manager at work asked me why I looked so happy so early in the morning. I have been on CPAP for around five weeks now, and it has not always worked. Some nights I have taken the mask off in my sleep, and others I have had a cold that made it hard to breathe even with a mask. After those nights I feel tired and bad, just like before. Days after the CPAP works fine are great. I don't know if I have ever felt this good.

What sounds strange to me is how others describe being sleepy and falling asleep during the day, even risking falling asleep while driving a car. I have never been sleepy. I could not fall asleep during the day even if I tried. I had trouble falling asleep at night too. Once I fell asleep I would sleep for 8-10 hours though. But I did feel tired. Does the difference make sense to anyone else?

Today, after a couple of good CPAP days but only 5-6 hours of sleep every night (more about that later) I don't feel tired at all. On the contrary, I feel less tired than I have in years. On the other hand, I do feel sleepy. If I was to lay down somewhere now I could easily fall asleep pretty quickly. I don't mind though, it's not bad enough that I really have to fight it. Actually, it feels really good to be sleepy. It's a feeling I haven't experienced in many years, until the last few weeks. (I assume that must sound strange to those of you who have suffered from a lot of sleepiness.)

Now, this doesn't sound like the typical sleep apnea symptoms. The Epworth sleepiness scale is used as a screen for sleep apnea. You know, the one where you say how likely you are to doze off in different situations. A high score is an indicator of sleep apnea. Before CPAP I scored zero. Tired, yes. Sleepy, no.

Another difference is dreams. Apnea sufferers seem to say that they would often remember their dreams before they started using CPAP, but that they stop remembering them when they are on CPAP. I'm the other way around. I haven't remembered a dream in years. I haven't remembered every having a dream in years. Until now. When I started using CPAP I started having a lot of dreams. I often remember details from at least one dream when I wake up. That never happened before, except for a while after I started taking Melatonin, but it stopped after a while and then I stopped taking Melatonin.

In fact, I can predict how I'm going to feel during the day based on just how many dreams I can recall in the morning. If I can't remember having dreamt at all I will go around like a zombie all day. If I remember many dreams I will be awake and alert. The dreamy nights are also the ones when I used the CPAP machine a lot.

Another difference is how many hours I sleep. Before CPAP and now on bad nights I sleep 8-10 hours and always feel that I should sleep for a few more hours. Now I wake up after 5-6 hours and can't go back to sleep. I suspect that's temporary. I haven't really had that many good nights in a row. I think the sleep gets longer after many good nights, but I haven't written it down so I'm not quite sure.

My current theory is that without CPAP I don't get enough REM sleep, and that lack of REM sleep makes me tired, lack of non-REM sleep makes me sleepy. Without CPAP I sleep for a long time to try to get enough REM sleep, but it's still not enough. With CPAP I catch up on REM sleep quickly, but since I have so much non-REM sleep saved up from before I don't have to, and can't, sleep the full 8 hours. That would explain why I used to dream so little and dream so much now, and it would explain why I can't sleep for very long now. But, this is just my current working theory. I don't have a medical background and am probably way off. Most imporantly, it doesn't explain why (other) apnea sufferers show very different symptoms.

Many questions would probably be answered by a proper sleep study. I did get a sleep study, but it was the take-home kind so no brain wave detection or any fancy stuff like that. Also, that night I had a really good nights sleep. I slept for only four hours, woke up remembering some dreams, and was laying awake for another four. I don't know why, I didn't have any CPAP, but maybe all the gear I had strapped to me made me sleep in different positions or something. They could not see any sign of sleep apnea on the logs, but said that they noticed borderline Upper Airway Resistance Syndrome which made them sponsor 80% of a CPAP machine. Since my sleep that night was so different I can't rally draw any conclusions about apnea though, and when I search online for Upper Airway Resistance Syndrome it seems like its very existance is highly controversial. I'd love to do a real sleep study to figure out what is really happening and maybe find an alternative to the CPAP machine, but since I already had a bad one and the CPAP machine works I'm not sure how to convince my doctor that the insurance should pay for it.

Does anyone else have the same symptoms as me or know what is going on?

[Muse-Inc]

...Apnea sufferers seem to say that they would often remember their dreams before they started using CPAP, but that they stop remembering them when they are on CPAP...

Not the ones I know! Just the opposite...brain is just too wired keeping ya alive every night to allow entry into REM sleep, reason why we all get a little, ahh, er, sometimes more than a little, nutty. I guess my super-vivid dreams faded into nothingness as my panea began; they returned (which I interpreted as an excellent marker of the effectiveness of CPAP) for months until my CPAP therapy needed changes.

...I haven't remembered a dream in years. I haven't remembered every having a dream in years. Until now. When I started using CPAP I started having a lot of dreams.

This is typical of everyone I know who has apnea.

We all have our own markers for 'good' nights...how many dreams and how many details of same is new to me but hey we're all unique and what works for you is all what's really important.

Welcome aboard!

[rosiefrosie]

I have had some of the symptoms you are talking about. I could never fall asleep during the day and had problems sleeping during the night. I never slept very long before cpap and this has not changed for me, but the quality of sleep is better. I can not imagine falling asleep while driving as this was never a problem for me, but I never went anywhere later in the day because I was so tired and if I did someone else drove. Before starting on cpap I could not remember the last time I had a dream. Now I dream all the time and am loving it. I was never sleepy, but was tired especially in the late afternoon. I had no energy for anything. I have much more energy now. I love what cpap has done to improve my quality of life. I can't fall asleep without it. It took some time to get use to it and to get my pressure to the right setting. Now with my new machine that lets me monitor all my data, makes it so much easier to keep me on tract and feeling so much better.

[Oneiros]

...Apnea sufferers seem to say that they would often remember their dreams before they started using CPAP, but that they stop remembering them when they are on CPAP...

Not the ones I know! Just the opposite...brain is just too wired keeping ya alive every night to allow entry into REM sleep, reason why we all get a little, ahh, er, sometimes more than a little, nutty. I guess my super-vivid dreams faded into nothingness as my panea began; they returned (which I interpreted as an excellent marker of the effectiveness of CPAP) for months until my CPAP therapy needed changes.

Oh, that is news to me. On the other hand I had a hard time finding solid data. People on cpaptalk and some other forums seemed to say that they stopped dreaming, but maybe I got a weird sample. I don't know anyone else with apnea, I'm just trying to find information online.

...I haven't remembered a dream in years. I haven't remembered every having a dream in years. Until now. When I started using CPAP I started having a lot of dreams.

This is typical of everyone I know who has apnea.

We all have our own markers for 'good' nights...how many dreams and how many details of same is new to me but hey we're all unique and what works for you is all what's really important.

OK, good, thanks!

How about the sleepy/tired part? Is it also common that apnea sufferers don't really feel sleepy, just tired?

[Oneiros]

I have had some of the symptoms you are talking about. I could never fall asleep during the day and had problems sleeping during the night. I never slept very long before cpap and this has not changed for me, but the quality of sleep is better. I can not imagine falling asleep while driving as this was never a problem for me, but I never went anywhere later in the day because I was so tired and if I did someone else drove. Before starting on cpap I could not remember the last time I had a dream. Now I dream all the time and am loving it. I was never sleepy, but was tired especially in the late afternoon. I had no energy for anything. I have much more energy now. I love what cpap has done to improve my quality of life. I can't fall asleep without it. It took some time to get use to it and to get my pressure to the right setting. Now with my new machine that lets me monitor all my data, makes it so much easier to keep me on tract and feeling so much better.

Oh, interesting. That does sound a lot like me. Did you get a real diagnosis for obstructive sleep apnea or something else?

[rosiefrosie]

I was diagnosed with obstructive sleep apnea.

[Pugsy]

My current theory is that without CPAP I don't get enough REM sleep, and that lack of REM sleep makes me tired, lack of non-REM sleep makes me sleepy. Without CPAP I sleep for a long time to try to get enough REM sleep, but it's still not enough. With CPAP I catch up on REM sleep quickly, but since I have so much non-REM sleep saved up from before I don't have to, and can't, sleep the full 8 hours. That would explain why I used to dream so little and dream so much now, and it would explain why I can't sleep for very long now. But, this is just my current working theory. I don't have a medical background and am probably way off. Most imporantly, it doesn't explain why (other) apnea sufferers show very different symptoms.

Your theory is actually pretty much spot on. To expand on it just a little: REM stage is needed along with proper proportions of the other stages of sleep to have restorative sleep.
Lack of any stage sleep could make you sleepy and I believe I read that stage 3 is very important to have adequate time in that stage or a person will tend to be sleepy the next day. Its all about the whole sleep architecture and how it fits together. We need it all to feel our best.

Not everyone has every possible symptom of OSA but many of us will have several. You are an individual and your body won't be like everyone else. Don't worry about it. Finally, there are sleep related problems that affect us that aren't related to OSA. These will impact how we feel also. If just slapping on a mask and turning on a machine treated these other issues (not sleeping very long, tossing, turning, general poor sleep hygiene, etc) this thing would be so much easier but it seems like there can often be other factors involved that have to be sorted out. UARS can mess with things too.

[Julie]

Well, I wonder if you've tried to nap during the day since beginning Cpap? You say you do feel sleepy now (and who wouldn't on 5 hrs sleep!) so why not take advantage of whatever time you might have - even half an hour - and do it, instead of forcing yourself to stay awake? The only thing is, you must, must, always use the machine even for naps, because of course all you'll end up doing is feeling worse when you get up otherwise. If you are a relatively young person, and used to being active, that could explain why you weren't sleepy, but your body still knew something was wrong, so became tired from lack of 02, but now that's taken care of (more or less), the symptoms have shifted to plain sleepiness. A lot of us (me included) seem to not be able to get a lot of hours overnight, but do need daytime naps.

[Oneiros]

I was diagnosed with obstructive sleep apnea.

OK, thanks! That helps.

[Oneiros]

My current theory is that without CPAP I don't get enough REM sleep, and that lack of REM sleep makes me tired, lack of non-REM sleep makes me sleepy. Without CPAP I sleep for a long time to try to get enough REM sleep, but it's still not enough. With CPAP I catch up on REM sleep quickly, but since I have so much non-REM sleep saved up from before I don't have to, and can't, sleep the full 8 hours. That would explain why I used to dream so little and dream so much now, and it would explain why I can't sleep for very long now. But, this is just my current working theory. I don't have a medical background and am probably way off. Most imporantly, it doesn't explain why (other) apnea sufferers show very different symptoms.

Your theory is actually pretty much spot on. To expand on it just a little: REM stage is needed along with proper proportions of the other stages of sleep to have restorative sleep.
Lack of any stage sleep could make you sleepy and I believe I read that stage 3 is very important to have adequate time in that stage or a person will tend to be sleepy the next day. Its all about the whole sleep architecture and how it fits together. We need it all to feel our best.

Not everyone has every possible symptom of OSA but many of us will have several. You are an individual and your body won't be like everyone else. Don't worry about it. Finally, there are sleep related problems that affect us that aren't related to OSA. These will impact how we feel also. If just slapping on a mask and turning on a machine treated these other issues (not sleeping very long, tossing, turning, general poor sleep hygiene, etc) this thing would be so much easier but it seems like there can often be other factors involved that have to be sorted out. UARS can mess with things too.

Thanks, and yeah, I'm not worried. But I am curious about what the problem is and I want to understand it better so I can handle it in a good way, and hopefully find an alternative to the CPAP.

[Oneiros]

Well, I wonder if you've tried to nap during the day since beginning Cpap? You say you do feel sleepy now (and who wouldn't on 5 hrs sleep!) so why not take advantage of whatever time you might have - even half an hour - and do it, instead of forcing yourself to stay awake? The only thing is, you must, must, always use the machine even for naps, because of course all you'll end up doing is feeling worse when you get up otherwise. If you are a relatively young person, and used to being active, that could explain why you weren't sleepy, but your body still knew something was wrong, so became tired from lack of 02, but now that's taken care of (more or less), the symptoms have shifted to plain sleepiness. A lot of us (me included) seem to not be able to get a lot of hours overnight, but do need daytime naps.

No, I haven't tried napping. I don't really have any time to -- there is just so much I want to do now that I have the energy to do it! Besides, as I said, I don't really mind being a little bit sleepy. It's a feeling I haven't felt for years, so it actually feels pretty good.

[raggedykat]

I haven't started with the cpap yet, going for my titration study next week but I know what you mean about not being sleepy in the daytime. That is why I fought the idea of having apnea so long. I don't feel tired. I don't fall asleep while driving or at work. But I also don't sleep at night. It takes me forever to fall asleep and every little noise or movement wakes me up. I don't sleep for two or three nights and by the third night I just pass out. I feel really bad on the days I don't sleep but it is not a feeling of tired. Last night I slept about 45 min. and I feel terrible. My ears are ringing, my hands are shaking, my chest hurts but even if I were to go to bed I wouldn't sleep.

[Pugsy]

Thanks, and yeah, I'm not worried. But I am curious about what the problem is and I want to understand it better so I can handle it in a good way, and hopefully find an alternative to the CPAP.

We can all hope for an alternative that is not surgically invasive with a proven track record of taking care of the problem.
While there may be some alternatives to help us with some other sleep disturbance issues for the obstructive part of those issues we simply have to keep the airway open. Air pressure holding the airway open is what we have right now. There is always that drastic surgery giving a person a permanent trach. Yuck. I shudder just typing the words. Don't need cpap anymore with that but OMG you open yourself to so many, many other problems that can be life threatening. The other surgery UPP3 thing doesn't have a good track record. Many physical factors involve to even be a maybe candidate for a less than 50% chance of success.

No one is going to cut on me anymore...

Keep reading everything you can find on your diagnosis. Realize that each person is an individual and will have little quirks that stand out. Realize that not everyone has every symptom, and some people have very few symptoms. It doesn't really matter except it helps us relate to things. The critical factor is the collapse of the airway. When that happens any number of beasts are unleashed. It doesn't matter if it is one beast or one hundred, we still have to address the collapse of the airway in a known and effective manner.

Right now CPAP is what we have. I am sure that behind the doors in many labs there are people working on ideas that do not involve CPAP because the market is there for a potential gold mine. Anytime there is a potential gold mine people will be hunting for the secret. Who knows maybe next year someone will produce a product that is proven beyond a doubt to keep the airway open and doesn't involve being hooked up to a Darth Vadar machine. These products now that hype for "snoring solution" may help with the snoring but that is really all they are designed to help with. Snoring is just one of those beasts that the collapse of the airway unleashes. A person doesn't have to snore with OSA but many of us do. We maybe can cage that snore beast but the underlying cause is still present.

We can always hope but in the meantime we simply have to accept that right now CPAP, in whatever form is best, is what we have as the treatment of choice. No it isn't perfect, no it isn't easy, yes it impacts how we perceive ourselves in bed, but it is what it is. As a society we are used to "taking a pill" "having a quick easy fix" for many of our physical problems. Unfortunately OSA is really just a baby in the terms of diagnosis and the study of treatment options. We just don't have that quick easy fix for it yet.

Personally I don't dwell on that part of it. I try to dwell on ways to make the solution that is available to us more workable and more effective. I try to pick a battle that I stand some chance of having an impact on. Reduce my leaks, get better quality sleep, get more sleep, use a lesser intrusive mask system, etc. Those are battles that I can have some impact on.

Good luck with your therapy. It sounds like it is working very well and keeping most of the beasts caged. Keep doing it and keep educating yourself. Education helps the mind adjust to this diagnosis. The mind helps the body.

Ok, climbing down off soap box...as everyone says "thank goodness"

[Oneiros]

I haven't started with the cpap yet, going for my titration study next week but I know what you mean about not being sleepy in the daytime. That is why I fought the idea of having apnea so long. I don't feel tired. I don't fall asleep while driving or at work. But I also don't sleep at night. It takes me forever to fall asleep and every little noise or movement wakes me up. I don't sleep for two or three nights and by the third night I just pass out. I feel really bad on the days I don't sleep but it is not a feeling of tired. Last night I slept about 45 min. and I feel terrible. My ears are ringing, my hands are shaking, my chest hurts but even if I were to go to bed I wouldn't sleep.

Interesting. It seems like sleep apnea is very poorly understood, or at least usually badly described. I never even suspected that my problems were sleep related. If I had felt sleepy all the time I would have, but the tiredness I felt was more like being drunk, so I didn't make the connection to sleep. The fact that all descriptions of sleep apnea claims that you feel sleepy and fall asleep during the day doesn't help either of course.

I always slept every night, for many hours, but that is only because I have managed to always have a schedule that allowed me to get up pretty late. I could fall asleep, but usually around 2-3 in the night. I suspect my body was trying to avoid or at least postpone sleeping because it was uncomfortable, even though I could not remember it. Falling asleep before midnight was impossible. Once I fell asleep I could sleep for a long time though.

[Oneiros]

Thanks, and yeah, I'm not worried. But I am curious about what the problem is and I want to understand it better so I can handle it in a good way, and hopefully find an alternative to the CPAP.

We can all hope for an alternative that is not surgically invasive with a proven track record of taking care of the problem.

Thanks, and I agree with everything you say! I do however have some hope for those things you put in your mouth to keep your jaw and/or tongue in place. If my problem is simply that my jaw or tongue falls back, that should fix it. Or, if the blockage is in my nose, nasal irrigation and maybe some medicine might fix it. I do have a stuffed nose pretty often, especially when trying to sleep. But I don't know yet what is blocking, how much, and how and when it happens, so it's hard to know if anything will work.

But yeah, CPAP works for now. It's a pretty simple fix compared to treatments for other things that can happen to us humans. I won't let anyone cut in me.