Seeking insight from mild and/or younger apnea sufferers

[AlecBerg]

I got my sleep study results (although not the complete results from the titration study). All 56 events I had occurred on my back. I had 54 hypopneas and 2 apneas. My lowest oxygen sat was 91%. Does this sound like a milder case? Seems like I could try a pillow or shirt to keep me on my side, no? Has anyone had much luck with this? In the titration study the cpap definitely helped though, as I had only 1 event the entire night.

I kind of wish I could've met with the doctor right after the study to discuss the results in detail and see what kinds of options there are. I don't really like the knee-jerk reaction of putting someone on cpap and saying "you've got OSA, see you in 6 weeks." As it is now I'm sleeping worse and being less productive at work, aside from the time ive spent going back to the dr.'s office to adjust my machine and mask. Is it standard practice to start on cpap right away and then not really evaluate everything with the patient for six weeks?

[roster]

I got my sleep study results (although not the complete results from the titration study). All 56 events I had occurred on my back. I had 54 hypopneas and 2 apneas. My lowest oxygen sat was 91%. Does this sound like a milder case? Seems like I could try a pillow or shirt to keep me on my side, no? Has anyone had much luck with this? ........

You left out a very important bit of information - How much time did you sleep on your sides or tummy in which sleep stages?

I am praying for you that you slept a considerable time on sides or tummy and slept through all sleep stages with no sleep-disordered breathing. Then you can train yourself to sleep on sides/tummy and avoid CPAP. I can offer a lot of advice on how to do this. I was a habitual backsleeper for almost six decades and trained myself to avoid backsleeping.

(Unfortunately this did not cure my sleep apnea but did lower the pressure requirement from 19 cm to 7.5 cm).

[AlecBerg]

Total time on my side was not much, ~ 45 minutes. But the point is that I'd learn to sleep on my side, right? During the study I somewhat consciously avoided sleeping on my side due to the cpap and wires pulling on me and making it more difficult. Without cpap I am able to sleep on my side somewhat comfortably and am able to fall asleep that way, but I naturally gravitate to my back because I am more used to it. I assume with a pillow fitted for side sleeping or something else I could easily sleep on my side. Sleeping on my side seems far more comfortable than sleeping with cpap.

[roster]

Total time on my side was not much, ~ 45 minutes. .......

Get a copy of your sleep study (It's your right) and check how many minutes you slept in each sleep stage while on your back. Or ask your doctor's office for the information.

If you only slept in stages 1 and 2, you might find in stages 3, 4 and REM, you would have apneas sleeping on your side. We don't want to make assumptions. Let's see the detail on that 45 minutes.

[wasColette]

Just because your pressure is 9 does not necessarily mean you have mild apnea. It is not the pressure so much as the number of events that matters.

After my sleep study I was titrated at 5 but still had moderate sleep apnea since I had 25 apnea-hypopnea events per hour.

[AlecBerg]

Upon closer review (I didn't have the study in front of me before), it was actually an hour on my right side where I went through all stages of sleep. There was another half-hour period on my side but I moved to my back before going through all the stages.

Also, just to clarify my pressure is 5cm, my AHI was 9.

[rested gal]

Alec, sometimes a more important figure to look at is the AHI when just in REM, rather than the overall AHI. Did your sleep study results give an index for apneas/hypopneas in REM?

You mentioned your O2 readings not dropping below 91%. That's great. But... there is a sleep disorder called UARS (Upper Airway Resistance Syndrome) which I think of as having a brain so hypervigilant to the least beginnings of airway collapse, that the brain arouses the person just enough to "breathe better" -- BEFORE the O2 drops down badly.

Excessive numbers of arousals can wreck a person's sleep architecture even if few apneas/hypopneas are being chalked up. And even if the O2 is staying up (staying up because of the arousals.)

What I'm getting at is that there's a lot more to sleep disordered breathing and/or good sleep architecture than just an AHI number.

It's understandable that anyone -- not just young people -- are not happy about needing CPAP in order to breathe well when asleep. No matter how mild, no matter how "positional", I'd stop trying to find reasons why I might be able to get by without CPAP, and start thinking in terms of, "Thank God there's a machine I can use at night, turn off in the morning, and go about the pleasures of living."

As it is now I'm sleeping worse and being less productive at work

Well, unfortunately that can happen while a person is trying to get the comfort issues of this crazy new way of sleeping worked out. It's not natural to sleep with a mask on the face. Right now you're probably trading off the sleep arousals you were having before without knowing about them, for a different kind of sleep arousals -- equipment related -- that you are aware of.

There can be a lot of uncomfortable, annoying, or downright painful aspects about trying to "do CPAP"...but the good news is it doesn't have to be that way. Doctors and even the most well meaning DMEs, RTs, PAs, etc., are not always savvy about ways to make "CPAP" therapy more comfortable. And if you can't get comfortable, it's difficult to sleep. That's where this message board shines...at helping people make "CPAP" (particularly the mask) more comfortable.

Good luck, Alec.

[kteague]

One other thing - I don't know what machine you have, but if your sleep study didn't yield much sleep, you REALLY would benefit from a data capable machine. There's a possibility that titrated pressure of 5 will not be adequate in a real sleep situation. If that would happen to be the case, even after adjusting to the whole process, you could still be pretty miserable (and not fully protected).

[leftie12]

I started on cpap in my early 40's so older than you, but now I cannot sleep without it...even on the couch at night if it has been a short night the night before for whatever reason, I fall asleep and then wake myself up snoring.

As to the intimacy, etc. I put the mask on as the last thing before I'm ready to go to sleep. Within about a minute of putting on the mask, I'm out. It also helps as you get older because when you do wake yourself up (or when your then wife wakes you with her elbow to get you to quit snoring) you normally have to relieve the bladder in order to get back to sleep. If you don't wake you don't have that sensation and you sleep without getting out of bed also.

[roster]

Upon closer review (I didn't have the study in front of me before), it was actually an hour on my right side where I went through all stages of sleep. There was another half-hour period on my side but I moved to my back before going through all the stages.

Also, just to clarify my pressure is 5cm, my AHI was 9.

What might be very valuable to you is another sleep study where you sleep exclusively on your back or tummy. You can use a number of tricks to make sure not to roll onto your back. Tennis balls and small backpacks are some favorites.

But as a priority, your sleep doc owes you a lengthy explanation of everything that went on in your sleep study.

(Tummy sleeping is a great way to go - see Falcon position viewtopic.php?f=1&t=36738&st=0&sk=t&sd=a&start=15 )

[evbirch]

I was diagnosed when I was about 23 and was pretty shocked. From where I am today, I'm pretty sure my dad has (undiagnosed) Sleep Apnea, but he refuses to be tested. So maybe I have a genetic predisposition...

I have severe apnea, but the first morning I woke up from sleeping with my mask, I felt like it changed my life. I couldn't believe how much I was dreaming! I was really compliant for a few years and then fell off the wagon. I even boxed up my CPAP thinking I didn't want to deal with it anymore. Eventually I had surgery which reduced my apnea and I could sleep OK (but not great) without the mask. Several years later, the surgery has "worn off" and I'm back on CPAP nightly.

I occasionally take "breaks" on the weekends if my skin is bothering me (I'm pretty much allergic to every mask I've tried), but during the week I'm 100%. It takes a lot to get used to. And I'm definitely open to the possibility of having surgery again if it is an option for me. I'd love not to use the mask, but I'm grateful for it.

If you want to chat, send me a note.

Emily

[tillymarigold]

I was dx'ed at 28 with UARS (a mild or precursor form of apnea, my AHI was borderline and my desats only went as low as 89%*) after spending 17 years telling doctors that I was exhausted all the time. By the time I was diagnosed, I was drinking two cups of coffee, a soda, and two cans of Monster a day, and taking a 2-3 hour nap in the evening 3-4 times a week (in addition to the 8-9 hours of sleep I was getting a night). It's a wonder I never got fired, but I managed to stay awake from the time my husband dropped me at work until he picked me up ... at least on most days. (My sleep doc says I react worse to lack of sleep, proportionally, than anyone else he's ever treated.)

CPAP has totally turned my life around. Right now I'm having some totally unrelated problems that mean I'm not as active as I should be, but I rarely nap anymore. I'm amazed that my husband managed to put up with me for so long, it was a real battle for him to get me to work every day. I'm sure we'd be divorced by now if I hadn't started it. I love it. I haven't missed a single night in 2.5 years. I take it everywhere ... and I bullied my mom into getting tested, too.

By the way, studies have shown that there is very little correlation between the severity of apnea (number of events) and how bad you feel in men ... and no correlation at all in women. You can feel only a little tired but have severe apnea, or, like me, have very mild numbers but really severe symptoms.

* Besides the UARS I have a weird thing the sleep doctor said he'd never seen before, where I also can't maintain REM sleep for more than about 10 seconds. His hope, which seems to have been correct, was that treating the UARS would allow me to get enough sleep that the lack of REM wouldn't be as big of a deal.

[fsmitty]

I am also wondering if CPAP is really worth it also. Like you, I workout and am in good shape. The sleep study found my AHI is 5.85. The borderline for apnea/cpap treatment if anything above 5. I question the sleep study since they do this while sleeping on your back. This is a position that I never sleep in as I am a side sleeper. I wonder what my AHI would be in my normal sleep position which is on my side. The doctor did refer me to a ENT for nasal congestion. She has scheduled me for Septoplasty/Turbine reduction as she can see what is causing my congestion which is enlarged turbines. I am wondering if this surgery will eliminate the need for the CPAP machine. The ENT was also surprised that my AHI was so low and that I am on CPAP.

[krazykchan]

I haven't posted here in a very long time. (College obligations). However, I am 23 and was diagnosed about 7 months ago with very mild sleep apnea. I was getting only about 9 episodes per hour. I was titrated with an original pressure of 6 and just recently (2 weeks ago) was re-titrated to a pressure of 10.

Where we differ, however, is that I'm not in shape at all. So my apnea is related to my weight and not genetics. I tell you what though, this has been a great motivator in getting me to lose the weight finally. (Though I am not close to where I need to be yet.) I want to be able to just lie down and go to sleep and not have to worry about setting up my mask or tape. This has been a very difficult journey for me trying to find ways to make this therapy work. I'm still not sleeping through the night (I am down to getting up only twice a night instead of 6 or 7 times...) I hope that it's not as difficult for you.

I can't say that I really noticed a huge difference after using my CPAP. It wasn't like night and day for me. I have noticed that I don't need to nap throughout the day, am not as exhausted come dinner time, don't need as much caffeine to get me going in the morning, and my migraines have almost disappeared. It will be worth it. Keep at it!

[roster]

....... The doctor did refer me to a ENT for nasal congestion. She has scheduled me for Septoplasty/Turbine reduction as she can see what is causing my congestion which is enlarged turbines. I am wondering if this surgery will eliminate the need for the CPAP machine. The ENT was also surprised that my AHI was so low and that I am on CPAP.

That can be a great surgery (It was for me), but it would be unusual to eliminate the need for CPAP. The blockage is usually in the throat (tongue + soft palate) not the nasal airway.

May I propose that after the surgery you insist on a new sleep study. Your insurance should pay for it. During the study, you should sleep exclusively on your sides or tummy. Make sure the doctor and lab know in advance you are going to do this.

If the study shows your breathing is normal on your sides and tummy, you can train yourself to sleep this way. We can help with some ideas on the training. I trained myself to avoid backsleeping and am able to use a much lower CPAP pressure.