Well, that explains a lot

[mamagotcha]

I got a phone call earlier this week from a nurse at my doctor's office about scheduling time to fit a mask. Whaa? (Confusion partly because, um, WHAT mask? and partly because it was like 7:45 in the ayem). Turns out my doc had told her to arrange a fitting, but something or other had to be approved by a cardiopulmonologist first so maybe she should've called me in a couple of days and... I gently interrupted and upon query, she confirmed that she had my sleep study in front of her. So what exactly does it say, I ask. Oh, she says. You haven't talked to your doctor yet? No, I haven't, I tell her, trying hard not to sound as annoyed as I felt. Oh, she says. Let me talk to him and I'll call you back.

A few days later, she calls back to say that (long boring explanation deleted) and she won't be able to fit me until sometime next week. Oh, I say. So can I see this sleep study report? Sure, she says, and pops it into the mail.

So, even though I haven't heard peep from my doctor, and even though I'm not going to actually be able to get a machine for a while yet, I have a copy of my sleep study.

Turns out I've got apnea.

Here's a few of the numbers:

Total sleep time: (They had me come in at 7pm, scheduled to leave at 6am, and wanted me to get ready for bed right away. Um, did you guys read my chart? I usually sleep after 11pm. Who the hey signed me up for a 7 o'clock bedtime? The wires and crap were incredibly irritating, the room was cold and the bed had only one thin cotton weave blanket, the tech was cranky... ) I got a grand total of 4 hours, 9 minutes of sleep.

Sleep efficiency (time spent in bed compared to time asleep): 59% (normal is greater than 85%)

Sleep onset latency (how long it takes to fall asleep): 39 minutes (normal is 15)
REM latency: 319 minutes (normal is 90)

Time spent in Stage I sleep: 67% (normal is 5%)
Stage II: 24% (normal is 55%)
Stage III/IV (the most restful part of sleep): 0% (normal is 20%)
REM: 9% (normal is 20%)

Oxygen sats bottomed at 82%, with 7 minutes less than 90% (normal is over 94%)

My overall AHI (Apnea/Hypopnea Index): 43.5 (this is the average number of apnea events per hour... it went up to 86 if I was on my back, down to 32 on my left side)
(normal is under 10, mild is 10-15, moderate is 15-30, and severe is greater than 30)

Damn. This is both good and bad news... good because this totally explains my exhaustion problems. It turns out that apnea is also associated with depression, irregular periods, headaches, even difficulty with weight loss (I had no idea; I've been rassling with all of those for the last year). But it's bad news because it means I'm looking at a CPAP machine and mask, which I know is going to drive me crazy. Also, apnea is associated with polycystic ovary syndrome, diabetes, and atrial fibrillation... not sure if I've got anything along those lines winding up, but we definitely wanna nip 'em in the bud if possible.

Well, I'll keep you posted. I'm finding a ton of information out there... it's a little overwhelming. But just knowing that it's not some character defect is somewhat heartening... there really is a problem, and it's not just a little one. I'm not making it up. And there's treatment.

Maybe the fog will lift. That would be nice.

Comments

[sarafoop.livejournal.com]

My dad got a CPAP last year and he said it was the best thing he ever did. Within a month or two he was able to go completely off blood pressure meds and cut his diabetes meds in half. He hasn't tried to lose weight, so I don't know how it affected him that way, but he's much more well rested and happy.

[mamagotcha.livejournal.com]

That's good to hear!

Both of my parents have apnea; my father's had his CPAP for maybe 20 years, and my mother finally caved in and got herself one just a few months ago. So I suppose it's not a huge surprise.

Two studies I found said that almost half of obese people who start CPAP lose 10 or more lbs. within 3-6 months (43% and 45%), but both of those studies were pretty small and there's definitely room for more research.

Is this something you've considered, with your own sleep issues? (I dunno, this might be a case of have hammer, see nails... but I remember you and I sharing some similar struggles.)

[essaying.livejournal.com]

The CPAP machine is sort of a nuisance but really not that big a deal. If I thought I really did have apnea and that it was helping my sleep, it'd be my best friend.

FWIW, since I quit eating significant carbs my sleep issues have straightened *way* out. Not perfect but amazingly better.

[mamagotcha.livejournal.com]

So you're using it for a different reason than apnea?

Funny you should say that about the carbs. I decided to jump back on the Atkins wagon when I got back from New York (March 9). I do feel like I've been sleeping better, and I've needed the Provigil less (though there are still days when it's a lifesaver). I wasn't sure if it was just feeling better from longer days and more light, or dropping the carbs, or what. I'd say it was a chicken-and-egg problem, but having a biologist around solved that years ago (the egg, incidentally).

Part of my dismay at the prescription of a CPAP is that it's supposed to be a lifelong therapy, and the thought of being a "hosehead" for the rest of my life just feels a little... hard to be happy about.

I'm so glad to hear you're feeling better!

[essaying.livejournal.com]

I have borderline apnea, not too bad as long as I stay off my back. The CPAP was suggested to me as a means to "rule out apnea" in terms of diagnosing my sleep disorder.

However, the weird unexpected benefit to the high-protein low-carb is that it seems to be reducing inflammation all over my body, including in my throat and tongue. One of the reasons the sleep doc gave for suspecting apnea was that my throat and tonsils were so swollen that there wasn't room in my mouth for my tongue -- it had bite marks down both sides. Now I can feel that that isn't true any more, so something must have changed, and the only thing that's changed is my eating. And I don't think I have a sleep disorder any more, at least not a bad one -- I'm falling asleep fairly easily, waking once or twice a night instead of once an hour the way I do when it's bad, having many fewer bad dreams, etc.

There are other options besides the CPAP, but they're surgical and fairly major. But if the CPAP is too nasty you can always talk to your ENT guy about them.

[mamagotcha.livejournal.com]

Huh. Why would dropping carbs eliminate inflammation? Some sort of immune system reaction to wheat or corn?

Googling... very interesting!

[(Anonymous)]

I don't know why either, and I certainly wasn't expecting it, but it's apparently not rare; a lot of people seem to think that sugar is actually the culprit.

[lunacow]

Well, like you say, good to find out what's going on, but ugh. Crazy numbers. I bet you'll start feeling a lot better once you get the CPAP and can get the right amounts of the right kinds of sleep.

[mamagotcha.livejournal.com]

Part of me is glad to have my exhaustion validated like that... and part is horrified at the magnitude. I do have to remember that it WAS an awful example of my sleeping, though, so I'm hoping the numbers were a bit inflated. But if it helps me get better faster, then it will be worth it.

[saxikath]

I've shared a cabin at a LARP with someone with severe snoring/apnea problems. He now brings a CPAP with a portable generator. I can tell you *I* sleep better. :) But he does too -- he says it helped with his general exhaustion a lot.

[mamagotcha.livejournal.com]

I'm going to WisCon this year, and am worried about finding a roommate. Maybe having a CPAP will help!

Thanks for the reminder that I'm probably helping my family get better rest by getting this treated.

[cynthiaweb.livejournal.com]

I used to do research studies for sleep problems - mostly insomnia. I got to hear about what went on in the sleep lab from both sides. It's a wonder anyone can sleep at all with all the wiring, not to mention being watched by infrared camera. Anyway, Pat also has severe sleep apnea, but the thing that really scared him was that he also had a heart arrhythmia associated with it. He ended up needing a bipap machine because the CPAP machine caused him some problem, so if you have trouble adapting be sure to let them know what the problem is. It helped Pat a lot and I'm sure you will feel much better.

[mamagotcha.livejournal.com]

How scary... is his arrhythmia gone?

The camera didn't bother me, although the disembodied voice coming out of nowhere was jarring.

The reading I've been doing has been enlightening... there's a LOT of different machines and masks out there. So I'm hopeful that we'll nail the right combination soon.

[cynthiaweb.livejournal.com]

Yes, he only had the arrhythmia when he would stop breathing. I have to say it's scary to be sleeping with someone who quits breathing (not to mention the noise from the snoring). I had gotten to the point where I was counting the seconds he would go without breathing so I could try to convince him to do something about it. Needless to say I wasn't sleeping well either. Now with him on the machine I can sleep.

[paulaandandrew.livejournal.com]

No new insights -- just a hug (from across the Gulf Stream in the Bahamas)>
Sleep well, Ms. K!

[mamagotcha.livejournal.com]

Thank you!

[safetybitch.livejournal.com]

I kinda question whether the results are entirely valid, as they missed the whole very important step of duplicating your normal sleep habits... but apparently you also found out that your doctor is a complete moron. Sheesh!

[mamagotcha.livejournal.com]

I'm just seeing him so I can get tests and treatment paid by insurance. My regular doc isn't covered by BC/BS; I pay her out of pocket and she's well worth it.

You're right... that definitely was NOT a typical night. How hard could it be to set up similar telemetry in someone's home? The cost of the equipment and sending techs out to set up and remove the devices couldn't be more than that of maintaining the lab, and they'd get MUCH better results. Oh well... as you well know, getting good results isn't necessarily the main impetus of the medical machine!

I'm not convinced he's a total moron (yet), but the inter-office communications certainly leave something to be desired.

[mh75.livejournal.com]

On the other hand, with the degree of your measured symptoms i'd think it is unlikely that they are entirely due to the sleep study. Perhaps your nightly numbers aren't so bad, but they probably are still indicative of a problem!

[mamagotcha.livejournal.com]

Oh, yes. No doubt there's something going on, and I'm looking forward to improvement with a CPAP. Just not looking forward to the machine itself, is all.

[qarin.livejournal.com]

Having slept in a room with you recently (really, I swear, that wasn't the worse part about the trip at all!), I am pretty amazed that you had any question that you have sleep apnea.

I'm really glad you've gotten diagnosed, and are getting treatment soon, even if your doctor won't apparently talk to you (?).

[mamagotcha.livejournal.com]

Well, I know it didn't help any, either.

Next time (if there IS a next time ;) I promise I will not only have less snoring, but I'll bring you extra earplugs.

[vito-excalibur.livejournal.com]

Coo1! I hope it helps!

[mh75.livejournal.com]

I think its always nice to get a diagnosis. Now you can work on improving things. Good luck!