Sleep apnea without apnea: Apparently, it's a thing?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
rebeccamakesthings
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Sleep apnea without apnea: Apparently, it's a thing?

Post by rebeccamakesthings » Thu Jul 30, 2015 4:40 pm

I'm new here and really impressed with the incredible depth of knowledge folks here seem to have. I'm hoping someone can shed some light on what's going on with my sleep. I have CPAP titration tonight and am kind of dreading it, and I'm not even sure why it's needed, haha. Apparently, you can get diagnosed with OSA without a single episode of obstructive apnea. Go figure.

I have Ehlers Danlos Syndrome (hypermobility type) with associated autonomic dysfunction. My primary care doc has seen a lot of EDS patients with very fragmented sleep, probably due at least in part to autonomic issues, so he had me do a PSG.

Like we expected, I had pretty cruddy sleep on the whole -- 25.2 arousals/hr, almost no deep sleep (2%), limited & delayed REM sleep (14% starting 200 minutes in), and poor sleep efficiency (75%).

However ... neither of us expected apnea. So I was surprised when I learned my sleep study doc diagnosed me with moderate obstructive sleep apnea/hypopnea syndrome.

Details from the first PSG:

7.5 hrs sleep
AHI 20.5 during REM; 21.0 during NREM
19.9 respiratory arousals/hr
Mild supine tendency (37% sleep was supine but 43% of events were supine)
ZERO obstructive apneas
2 central apneas
154 hypopneas
O2 average 98%; lowest 95%.


I don't really fit the OSA profile. I'm 27 with a BMI that's been between 20 to 21 since puberty. My parents both snore and have hypertension, but I only snore a little bit. I haven't smoked or drank in over 3 years, don't take any meds linked to OSA, etc. Oh, and I went to and ENT after the first PSG, on my doctor's direction, to see if an oral appliance might help. The ENT scoped my airway and said -- and I'm not exagerrating here -- I had one of the "best airways [he'd] ever seen". He joked that it was so open, he wished he could have me volunteer for first time medical students to do their scope.

Is there such a thing as having just central hypopneas, and would a CPAP help with that? Obviously, I'm following the doc's directions with this, but this is really weird to me! Anyone know what's going on here? It just seems like this breathing stuff is coming from nowhere.

We'll see what the titration turns up tonight, but in the meantime, if anyone can offer some education or pearls of wisdom, it'd be great. Thanks!

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Julie
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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by Julie » Thu Jul 30, 2015 4:49 pm

Responses to this thread were made partway through another poster's thread under 'Confused about Apnea". It would probably be best to take a look there and then reply here so as not to confuse Finer's (OP there) with this one.

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LSAT
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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by LSAT » Thu Jul 30, 2015 5:37 pm

rebeccamakesthings wrote:I'm new here and really impressed with the incredible depth of knowledge folks here seem to have. I'm hoping someone can shed some light on what's going on with my sleep. I have CPAP titration tonight and am kind of dreading it, and I'm not even sure why it's needed, haha. Apparently, you can get diagnosed with OSA without a single episode of obstructive apnea. Go figure.

I have Ehlers Danlos Syndrome (hypermobility type) with associated autonomic dysfunction. My primary care doc has seen a lot of EDS patients with very fragmented sleep, probably due at least in part to autonomic issues, so he had me do a PSG.

Like we expected, I had pretty cruddy sleep on the whole -- 25.2 arousals/hr, almost no deep sleep (2%), limited & delayed REM sleep (14% starting 200 minutes in), and poor sleep efficiency (75%).

However ... neither of us expected apnea. So I was surprised when I learned my sleep study doc diagnosed me with moderate obstructive sleep apnea/hypopnea syndrome.

Details from the first PSG:

7.5 hrs sleep
AHI 20.5 during REM; 21.0 during NREM
19.9 respiratory arousals/hr
Mild supine tendency (37% sleep was supine but 43% of events were supine)
ZERO obstructive apneas
2 central apneas
154 hypopneas
O2 average 98%; lowest 95%.


I don't really fit the OSA profile. I'm 27 with a BMI that's been between 20 to 21 since puberty. My parents both snore and have hypertension, but I only snore a little bit. I haven't smoked or drank in over 3 years, don't take any meds linked to OSA, etc. Oh, and I went to and ENT after the first PSG, on my doctor's direction, to see if an oral appliance might help. The ENT scoped my airway and said -- and I'm not exagerrating here -- I had one of the "best airways [he'd] ever seen". He joked that it was so open, he wished he could have me volunteer for first time medical students to do their scope.

Is there such a thing as having just central hypopneas, and would a CPAP help with that? Obviously, I'm following the doc's directions with this, but this is really weird to me! Anyone know what's going on here? It just seems like this breathing stuff is coming from nowhere.

We'll see what the titration turns up tonight, but in the meantime, if anyone can offer some education or pearls of wisdom, it'd be great. Thanks!
There really is no such thing as a typical OSA profile...there are posts from mothers with young children with OSA. You had moderate OSA ...your report indicates that you averaged 20 events per hour.....

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Julie
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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by Julie » Thu Jul 30, 2015 5:44 pm

The 'centrals' in your case are most likely to have occurred when you were just falling asleep and just waking... it's common to have a few at those times and they don't mean you 'have' central apnea as such.

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Jay Aitchsee
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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by Jay Aitchsee » Thu Jul 30, 2015 5:45 pm

Many of us don't fit the "OSA" profile, but have SDB (Sleep Disordered Breathing) anyway. You averaged more than 19 respiratory arousals per hour. So, even though you did not suffer any full blown obstructive apneas, it does seem that the hypopneas may be disturbing your sleep. CPAP could help with that and the titration should provide a little more insight.

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kaiasgram
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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by kaiasgram » Thu Jul 30, 2015 6:06 pm

Yes, those hypopneas and RERAs qualify you for the diagnosis. I believe that unless otherwise noted the hypopneas are obstructive events. Partial collapse of the airway. Hypopneas alone can get you a diagnosis of OSA. Your sleep study report and diagnosis make sense.

As for "the profile" it is nothing to hang your hat on. Too many sleep apnea patients don't fit it. At all. What's noteworthy to me is that both of your parents snore and have hypertension -- both associated with sleep apnea -- and family history does raise the index of suspicion. I'm curious if they've ever been tested for sleep apnea. Maybe "this breathing stuff" didn't come from nowhere.

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Last edited by kaiasgram on Thu Jul 30, 2015 6:11 pm, edited 3 times in total.

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by palerider » Thu Jul 30, 2015 6:07 pm

rebeccamakesthings wrote:Apparently, you can get diagnosed with OSA without a single episode of obstructive apnea. Go figure.
no.... you can be diagnosed with Sleep Apnea, without a single obstructive.

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by VVV » Thu Jul 30, 2015 6:14 pm

palerider wrote:no.... you can be diagnosed with Sleep Apnea, without a single obstructive.
She's talking about all H, no A.

You could also have all CA no OA.
.....................................V

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by Zebra007 » Thu Jul 30, 2015 7:05 pm

Sleep apnea is not unusual for Ehlers Danlos Syndrome. I have EDS Joint Hypermobility. I was very surprised to be diagnosed with sleep apnea. I was always tired, never feeling rested when I woke up. Since starting CPAP therapy in November I have felt much better. I wake up feeling rested. I've had more energy than I'd had in years.

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by palerider » Thu Jul 30, 2015 8:04 pm

VVV wrote:
palerider wrote:no.... you can be diagnosed with Sleep Apnea, without a single obstructive.
She's talking about all H, no A.

You could also have all CA no OA.
there was an insignificant amount of CA..

just saying she's got SA, just not OSA.

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by rebeccamakesthings » Fri Jul 31, 2015 7:39 am

Thanks, everyone. I feel much, much less befuddled about the whole situation now.

And, wonderful news: After a night with CPAP (despite getting 4-5 hours of sleep at the most), I feel SO MUCH better!

The sleep tech tried about half a dozen masks before we found one that worked around 2 in the morning. Finally, with the right combo of mask, sleep position and a humidifier thing going on the machine, I got to sleep. I still woke up several times and had to fiddle with the mask, but I feel infinitely more refreshed this morning than I can remember feeling in...well, years. That's a good sign, right?

I'll have to see what all the study showed, but I'm really encouraged.

Oh, one other thing from earlier that I forgot to mention -- the reason I asked about central issues: I have some problems right around the brain stem. Thanks to Ehlers Danlos, my upper neck is hypermobile and unstable. I get valsalva headaches, visual symptoms, tinnitus and random paresthesias pretty regularly, which my doctor suspects has to do with wonky joints and weak connective tissue causing stuff to get shoved around at the craniocervical junction.

Since the CPAP seems to have worked though, I suppose the neck stuff's neither here nor there -- if the treatment works, it works!

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by ChicagoGranny » Fri Jul 31, 2015 8:03 am

rebeccamakesthings wrote: I still woke up several times and had to fiddle with the mask,
Here are some tips on reducing mask leak which also apply to making the mask comfortable.
To reduce unintentional mask leak -

- Make sure the mask is fitted properly. (See mask manufacturer's video.)
- Make sure the headgear is adjusted properly (See mask manufacturer's video.)
- Make sure to use good hose management - the hose should not pull on the mask.
- If you still have problems, learn from the forum what mask liners are available.
- If your mask still has excessive leak, try other masks. Many people report trying several masks before they find one that works well for them.
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rebeccamakesthings wrote:Thanks to Ehlers Danlos, my upper neck is hypermobile and unstable.
Some of us wear a soft cervical collar to hold our neck in the best position to help prevent airway collapse. I know very little about EDS, but was wondering if you might benefit from wearing a collar at night?

http://www.amazon.com/Carex-Health-Bran ... cal+collar

Image

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by OSAHell » Fri Jul 31, 2015 10:06 am

Hi rebeccamakesthings,

Glad to see that your titration was a success. My post was already wrote when I saw your titration result but I post it anyway, maybe it will help someone else.

Sleep apnea include hypopnia, AHI stands for Apnea/Hyponea Index. We just don't say Sleep apnea/hypopnea problem to describe this SDB problem... So yes, you can have a Sleep Apnea diagnosis with 100% hypopnea (without any apnea per say). But there is more than just OSA diagnosis in sleep apnea. There is CSA, CSA-CSR, drug induce CSA, High-altitude CSA, CompSA, a mixed of them and with all of them you have the severity based on AHI (mild, moderate, severe).
rebeccamakesthings wrote: ...I don't really fit the OSA profile...
Is there such a thing as having just central hypopneas, and would a CPAP help with that? Obviously, I'm following the doc's directions with this, but this is really weird to me! Anyone know what's going on here? It just seems like this breathing stuff is coming from nowhere.
There is not such thing as a "precise" profile for sleep apnea patient, that's just a misconception that too many Dr still believe and continu to propagate from lack of knowledge. Sure, if you’re a man, over 50, overweight and snoring you're most likely to have sleep apnea but you can be a young woman, in great shape and not snoring and still have sleep apnea. Some Dr won't even prescribe a sleep study when your not overweight because of that misconception and that alone might just be one of the main reason why man with weight problem are so much represented in SA patient's stats. I'm a man under 50, not overweight and not snoring and my GP didn't want to prescribe me a sleep study, she simply said "you're not fat so you can't have sleep apnea", duh... She wanted me to give an other try to the antidepressant before going for a sleep study! She was really surprise when she finally saw the diagnosis of sleep apnea of my sleep study.

Hypopnea "CAN" be central and probably 99% of Dr don't know/care about this fact. Many PSG reports don't even have a "box" for central hypopnea number, they only give numbers for obstructive apnea, central apnea and hypopnea. So, not surprisingly, nearly all Dr consider hypopnea as an obstructive event type, which is complete non-sense IMHO when most of your event are hypopneas. But since only 5 to 15% of people really have a sleep apnea that's "central" in nature most of the Dr are more often right than wrong. But it has more to do with “biased” luck (85-95% chance to be right) than knowledge... Also, it’s seem really hard to score a hypopnea as central with a classic PSG, you’ll need to do the PSG with some king of probe in your throat but even then scoring is not 100% sure. So that doesn’t help getting out of this misconception.

However, your "profile" might come into play when CPAP/APAP doesn't work and you had mostly hypopnea in your diagnosis… This might give clue to a good sleep doc that you might be a candidate for CompSA or other form of CSA. Some limited study show that CompSA patient have often a BMI under 30 (not obese), often have more insomnia problem than OSA and might not snore but, again here, the profile is not a perfect science.

On both my PSG my hypopneas was arround 80% of my AHI, I miserably failed CPAP/APAP and on CPAP/APAP 80-90% of my events were now central apneas. I’m now on a ASV and it has made a tremendous diff. compare to CPAP/APAP and I can now see some end to this more than a year and an half of really bad sleep apnea specialist/therapy experiences.

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by kaiasgram » Fri Jul 31, 2015 1:17 pm

rebecca, that's great news! I'm glad you feel better -- and less "befuddled"

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Re: Sleep apnea without apnea: Apparently, it's a thing?

Post by Janknitz » Fri Jul 31, 2015 5:27 pm

I just read this thread for the first time today and before I read your titration post I was going to suggest waiting to see how the titration went.

All those hypopneas are significant and are related to your disrupted sleep. I think you're going to feel much better with CPAP overall. Time will tell.

Good luck--you seem to have the right attitude and know where to come if you have difficulty.
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