frazzled-snoozer wrote:tillymarigold, you do sound a lot like me. I think my AHI is awfully low also relative to my symptoms. It was only 18. What was yours?

Just under 8, with only 1-point-something of those being apneas.

I was diagnosed with UARS, actually, plus some weird thing the sleep doctor didn't have a name for, where I start hyperventilating when I go into REM sleep.

For years I had a hard time driving for more than about 1 hour ... but I never new I had OSA.

A few weeks before getting diagnosed, I was sitting in an important meeting next to my boss's boss and he had to elbow me in the ribs to get me to wake up and stop snoring ... very embarrassing.

Just a note about the diagnostic AHI... Count is one indicator of severity. Duration of events, arousals, and oxygen levels are important too. A person could have only 10 apneas an hour, but if they each lasted 45 seconds and their oxygen dropped to say 60%, this person is likely quite affected in ways the person with a higher count of 12 second events might not be. There are so many variables. I wouldn't want someone diagnosed with mild OSA to feel they should have been able to handle it better, because that count is just a piece of the story.

kteague wrote:Just a note about the diagnostic AHI... Count is one indicator of severity. Duration of events, arousals, and oxygen levels are important too. A person could have only 10 apneas an hour, but if they each lasted 45 seconds and their oxygen dropped to say 60%, this person is likely quite affected in ways the person with a higher count of 12 second events might not be. There are so many variables. I wouldn't want someone diagnosed with mild OSA to feel they should have been able to handle it better, because that count is just a piece of the story.

Actually studies have shown that in women there is no correlation whatsoever between signs (what the numbers say) and symptoms (how the patient feels). And only a mild correlation in men.

By the time I got diagnosed, my mornings pretty much consisted of getting up, having breakfast, and planning my first nap. I'd let my dogs out in the yard, but regular walks had become a thing of the past. I averaged about 11 hours of sleep a night and with naps included often hit 14-15 hours a day. I've always had...ahem, we'll just say a "high tolerance" for laziness, so I attributed much of it to that, although I was definitely bothered by the way my so-called laziness had taken over my life and no longer seemed to be within my control. Deciding you feel like lying around all day on your day off is one thing -- feeling like you can't do anything else is another thing altogether. I had also reached a point where I had what's often called two-pillow orthopnea, meaning I had to sleep propped up on pillows in order to breathe.

I was actually relieved to get the OSA diagnosis and know there was a treatment that might return me to normal. I consider myself very fortunate, because CPAP works like a charm for me. I resent the mask, I resent the bother, I resent being tethered to a machine all night, but I've slept without it only one night since starting CPAP, and that was only because of an emergency situation that prevented access to my equipment (and I've since planned how to avoid that happening again).

By the time I got to my sleep doctor, I had been falling asleep everytime my body got still for even a few seconds. I would fall asleep while talking--mid-sentence--then wake up and continue talking and never realize. I was falling asleep in the middle of phone conversations at home and at work--I would suddenly realize that I had no idea who I was talking to or what I had said. I sit on a stool a lot of the time at my job and my co-workers have since told me that I would fall asleep and nearly fall off of my stool before I would wake up and catch myself. I was falling asleep while driving and, thank God, never had any accidents.

In my first sleep study, I was averaging 172 apneas per hour and 13 minutes of "rest" in 6.5 hours of sleep. The doctor said he did not know how my brain was still functioning. At my last appointment, I was averaging 6 apneas per hour. I never, ever go to sleep without my mask on now. It has very literally saved my life!!!

I didn't have any of day time sleepiness. I was very stuffy and snored like a mack truck.

Good thread, frazzled-snoozer!

Autopapdude wrote:I once fell asleep in the middle of having sex, on top of my girlfriend.

Oh my gosh, that reminds me of something that happened many, many moons ago! I was dating this hot young man (now my husband of 30+ years). We were in the middle of a passionate make-out session and I fell asleep in the middle of all this excitement! How embarrassing -- for both him and me! I woke up later and he was gone. I had no idea why. Poor guy. I think it was a blow to his ego. Now, I can't say for sure if that was related to my sleep disorder, as it is possible that alcohol could have been a factor. That was during our college years. I remember often falling asleep during lectures and while talking with people at parties too.

About 10 years ago I used to drive my daughter to school. I remember having to stop at this one light almost every morning. Not that long ago, my daughter told me that I used to stop at the light sometimes and then proceed when the light was RED! I have no recollection of this at all, which is really scary. Now I wonder how many times I may have done that elsewhere. Was I actually falling asleep while waiting for the traffic light? I'll never know.

In more recent years, I blamed my very mild daytime fatigue on poor lifestyle habits -- laziness, not enough exercise, whatever -- and that probably was part of it. But I always woke up tired. Sleep wasn't refreshing. I was able to stay awake during the day, though, and never took naps. In the early evenings, however, I would doze off as soon as I put my feet up to watch television. I don't do that anymore, which is great. I sleep a solid 8 hours and I feel good when I wake up. What a change in just a short time! I can't wait to see what's ahead....

~ DreamOn

I'm so glad I started this thread! All these comments have been soooooo helpful to me. I've been very afraid that I'm hoping for too much of a change. But I see here that cpap could really be the miracle I've been needing.

I figured out after I posted my AHI number that the number may show little correlation to the severity of my symptoms. When the dr told me the numbers she was actually more concerned about the length of the episodes and my pulse-ox readings going down... also the fact that I never made it to REM sleep and spent only minutes in stage 3-4 sleep. I imagine if you can quickly get from stages 1-4 you might have a little REM sleep before getting knocked off by an apnea event?

moneygal, I'm a lot like you in that I found a million other things to blame my fatigue on (and when others told me that this is just what it feels like to.... whatever... I believed we were comparing the same feeling.) Turns out it's not normal to be this tired. It was easy for me to blame my thyroid (since I do have hypothyroidism). It's just that I'm taking pills for that and I should be feeling better. Then it was because I have 4 kids. Turns out 4 kids aren't really THAT exhausting! lol Then it was because 2 of my kids have autism. But I was still sleeping 10-12 hours a night. No one should still be tired after that!!!! lol Then we thought it was depression. That's a logical conclusion. (My mom has bipolar disorder). But the meds don't really do much for my fatigue and actually make me a bit too manic!!!! So....... finally it was the psychiatrist that put together all my symptoms and said it might be OSA.

Catnap wrote:I averaged about 11 hours of sleep a night and with naps included often hit 14-15 hours a day. I've always had...ahem, we'll just say a "high tolerance" for laziness, so I attributed much of it to that, although I was definitely bothered by the way my so-called laziness had taken over my life and no longer seemed to be within my control. Deciding you feel like lying around all day on your day off is one thing -- feeling like you can't do anything else is another thing altogether.

I've always been called lazy. But on the other hand I've also always been called a wonderwoman because of all I used to be able to accomplish. I'm a paradox! For the past year I've avoided making any plans for anything I used to enjoy doing because I just was too tired to get "jazzed" about anything.

tillymarigold wrote:I was diagnosed with UARS, actually, plus some weird thing the sleep doctor didn't have a name for, where I start hyperventilating when I go into REM sleep.

Aha.... that probably is very different.

thewetlizsard-- either I don't snore very much or my husband just doesn't hear me because he's asleep. When I asked him before my sleep study he said I hardly snore at all unless I have a cold or something. That might have been one of the reasons I never thought I had OSA.

Has anyone else ever said this? "I think I'll take a nap before I go to bed."? I started saying that last year and knew something wasn't right about that statement!!!!

Catnap wrote:...orthopnea...

I never knew it had a name... thanks!!!

frazzled-snoozer wrote: In that time period I didn't function. I left my bed to do things that HAD to be done and part of my treatment was to try to do things normally.
So.... for the past year I've been virutually useless. I hardly ever cook. I stayed in bed all weekend and late into most mornings. When I finally get out of bed I do things that require sitting and delegate anything that requires getting up and moving around. For a while I thought it was just a habit I'd gotten into that I couldn't break.

Hi,
Exactly how I feel, hope your fatigue has improved. I'm struggling with it right now.

Well, it has been almost 11 months on XPAP for me- and I am the same way as a few of you have described. Sleeping has begun to be better quality- I am dreaming and such. However, I still cannot fall asleep well- and after I have lain there for a while, I get up. Usually sometime around 2 or 3 I finally really get to sleep- and then I can sleep- in 2- or 3- (at the most) hour bouts for about 10 hours or more. I feel better when I first wake up, but the feeling fades quickly and I feel like napping. I do not always go back, but I do sometimes. I think that working the night shift for 35 years has affected my internal clock- I wonder if I will EVER get onto a true daytime schedule- ???
I also have fibromyalgia and CFS so I can relate to feeling "useless", etc. Thank goodness my hubby loves me, and does pretty much everything - I keep hoping I can soon take over some of the daily "chores" as before. His support is everything- without it, I would feel very depressed.
Keep trying, and let us know how you are doing- this board has been such an inspiratioon for me to keep at the therapy-- I know that without this place, I would have ditched the whole thing months ago, and become another failed XPAP case.
We may not have answers all the time, but we DO care. Hang in there!
~joan

Trinity101 wrote:...

Try bright-light therapy in the early AM...it helps re-set your circadian rhythms making it easier to sleep at night and be awake during the day. I understand it also helps falling asleep and staying asleep.

Dear Muse-Inc,
Thanks- I will read more about it and try it! I'll let you know!
~joan

Trinity101, does staying on your old work schedule interfere with your life? I have a friend who worked all her life as a night shift nurse, and says that switching now is too disruptive to her sleep, so she maintains the same schedule. If it is needful for you to switch, have you talked with a sleep doctor about how long it takes for a switch like this when it is a concerted effort? I do know someone who uses the light tool, and felt it was a necessity for her. A few years ago it was discussed on here a subspecialty of sleep medicine where a form of CBT is being used. Maybe someone else can remember the name of that particular treatment. And there was a list of all those specialists and their locations. I had recently thought I wanted to revisit that subject myself.