New to apnea, have chronic fatigue, hypersomnia. Questions

Hi everyone.

Had a sleep study done for my excessive daytime sleepiness, that doesn't seem to be due to anything else (hormones, etc). It is very debilitating. I also oversleep a lot....I can only get up with an alarm after I've been in bed for 10-12 hours (otherwise, I just turn off the alarm and go back to bed). So I guess you could say "hypersomnia." I am not the most reliable person because of the oversleeping. I'm always tired during the day, to the point that I don't enjoy things because I always feel like poop (depression has been ruled out...trust me). I have been suffering with this for a long time. There was a sudden onset illness, that was thought to be mono, but it never got better. Later on, tested positive for Lyme disease, but the antibiotic treatment has not gotten rid of the fatigue and oversleeping.

Sleep study showed "low end of moderate" apnea. I am 26, female, and right about in the middle of average as far as body fat, meaning I am not overweight. (I realize you don't have to be overweight to have apnea....but I think the reason it took doctors so long to give me a sleep study is that I have always been of normal weight or underweight, and I don't wake up gasping for air, so they always told me I don't fit the normal picture of a sleep apnea patient).

Anyways...I guess I just have a few general questions.

I just got my CPAP, and I have two masks to try out. One is the Swift with the things that go up your nose, the other is this little thing that forms a seal over the bottom part of my nose. I have used the masks two nights. Both nights I woke up and took off the mask, in an unconscious daze....but I have heard that can happen and you just gotta adjust.

I normally use Lyme forums, since it's one diagnosis I have had. Some people with Lyme (which can tend to turn into "post Lyme" or a chronic fatigue-like illness) have tested positive for apnea and are being treated. Some of them have central apnea....and some of them have told me that they were first told their apnea was obstructive, but then they later found out it was central. I was told mine is obstructive, but wasn't told how they know.

That makes me wonder if mine is central or obstructive (others being told theirs was obs, but it was central). I have a lot of brain problems, autonomic nervous system dysfunction, etc. Like difficulty swallowing, on a neuro level. So that makes me wonder if my apnea could be central. But the DME supplier told me the sleep study would have shown if I have central apnea. Is that necessarily true?

And some people have told me that if CPAP doesn't help my symptoms, to ask to try Bipap. I know that in my second sleep study, they told me that once the pressure was set to 7, I had no apnea episodes. That was using CPAP. So would the fact that I had no apnea with the CPAP mean that I should get symptom relief from CPAP, and I don't need to question if bipap is better for me? Or if this CPAP doesn't work, would bipap maybe work? (and by "work", I mean....get rid of my daytime fatigue).

So basically I'm wondering how I know for sure if my apnea's obstructive.......and also, how would I know if I'm a candidate for bipap instead of cpap?

I was hoping the CPAP would help me overnight, and since so far it's not....it's making me question if it's really working. Maybe my expectations are too high. I just feel like I'm reaching the end of my rope, with getting my hopes up, and then things not helping my fatigue/tiredness. So when I still feel the same after starting the CPAP, it's making me discouraged.

I know this is all over the place. Any advice appreciated. Thanks.

Hi, what a long road you've had to travel! Well, yes, centrals would have been picked up (apart from the random few that usually show up on testing anyhow) by the sleep study, so I don't think you should worry about that. Your brain is pretty complicated and while part of it might have problems with some functions, it doesn't mean the rest isn't working right .

The setting of 7 is pretty basic, what so many MD's start patients at, but it also seems invariable that most of us end up needing a bit more (up to 10 anyhow), so if you know how to tweak yours (and we can help if you don't) I can't see that it would hurt to try it for at least a few days at one-at-a-time-higher numbers (one night each won't be enough for a proper test).

And a last thing to consider is that you mouth-breathe once asleep like so many of us, maybe trying a full face mask would be better, so you don't lose all the Cpap air that way.

During your sleep study, they were able to differentiate between obstructive and central apneas because they were looking at multiple factors, including brain waves and respiratory efforts. Now, we do have one fairly new forum member who has developed centrals in response to a pressure of 7, but most need a higher pressure to get pressure induced centrals. You might feel better about things if you had a copy of your reports so you can go over them and understand your specifics. As was already mentioned, addressing any mask leaks or mouth leaks is of utmost importance. When you talk about the treatment working, sometimes we just have to be fact-based, or data-based. I would not use residual tiredness alone as a basis for changing machines. I may have missed it, but how long have you been using cpap? It does take time for the body and brain to recover from the trauma of untreated sleep apnea. One more question, did your reports make any mention of limb movements?

Best wishes in feeling better soon.

Hi CAsleep, and welcome to the forum!
It would help all the helpful veterans on the forum if you would go to the User Control Panel (top left) and fill in the information about your machine and mask so that we all know what you are using. If your machine is fully data capable, you will be able to get software to help you see the details of your sleep experience and know what is happening and when. The data will also help you see if your mask is leaking and when during the night this is occurring. The family of cpapers on the forum who have tons of experience can help you learn how to tweak your settings or improve your mask fit by knowing these details.

Since you say you just started, you need to give it some time..... you didn't get into a sleep deprived state overnight so it will take a while to catch up on all that sleep debt! Best of luck to you..... you have come to the right place for help, support, and information.

You need to read, read, and read some more..... start by going to the yellow lightbulb at the top of the page and begin to read the wiki. Ask questions on the forum, read threads of interest, and become an educated self-advocate of your own health! We all look forward to helping you and hearing about your progress!

kteague wrote:During your sleep study, they were able to differentiate between obstructive and central apneas because they were looking at multiple factors, including brain waves and respiratory efforts. Now, we do have one fairly new forum member who has developed centrals in response to a pressure of 7, but most need a higher pressure to get pressure induced centrals. You might feel better about things if you had a copy of your reports so you can go over them and understand your specifics. As was already mentioned, addressing any mask leaks or mouth leaks is of utmost importance. When you talk about the treatment working, sometimes we just have to be fact-based, or data-based. I would not use residual tiredness alone as a basis for changing machines. I may have missed it, but how long have you been using cpap? It does take time for the body and brain to recover from the trauma of untreated sleep apnea. One more question, did your reports make any mention of limb movements?

Best wishes in feeling better soon.

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how did this new forum member determine that they were having centrals at a pressure of 7?

Welcome to the forum, CAsleep! You've certainly had a difficult time, bless your heart. Fortunately, you've landed in the right place to get help with your sleep problem. It's probably going to take more than a couple of nights to start feeling better because your body has to learn to sleep instead of gasping for breath all night. You need to get a copy of your sleep study (the complete report) so you'll be able to understand exactly what sleep difficulties you're having; there could well be more than sleep apnea to deal with. The study will state whether there were central apneas. While many people with central apneas benefit from bipap, it's far too soon to know if you're in that group or not. Please fill out your profile so we'll know what equipment you have. We'll be able to be more helpful with that information. Cpap will improve your life but, like so many good things, it takes time, practice, and patience.