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My story and severe positional OSA ?
#1
My story and severe positional OSA ?
Hi Everyone,

I recently diagnosed with OSA, looking for information I came across this excellent forum with helpful people.
My story is a bit strange and I hope maybe someone can give me some insight, I have tried to read my own sleep study and come up with some theories of what is going on but could be helpful to get some second opinions.

My story:
I always had some bad days like 1-2 per month but around the start of the year I started having spells of what I would call dizziness and tiredness. Not knowing what was going on I thought it was just a bug, usually this lasted 1-2 days and then I had a few days of recovery with frequent naps during the days and early bedtime and I was quickly back to my normal self. However it started to increase in frequency and duration to the point where I had some serious mental issues about what was going on. Being new to the US and just moved here I had no health insurance or possibility to get it, I did visit urgent care and was told it was just a sinus infection...

Fast forward to around October where I finally get health insurance and someone to actually take my complaints about tiredness seriously. At this point the tiredness and chronic headaches are never giving me any rest, I can't work and my life is more or less on hold until I get better. Doing a sleep study quickly confirms I had OSA. This was a split-study and the next day thinking about it I formed a theory about why it appeared so sudden.


.pdf   sleep_study_page_0-3.pdf (Size: 878.29 KB / Downloads: 26)
.pdf   sleep_study_page_4-7.pdf (Size: 740.47 KB / Downloads: 14)

Reading the diagnostic part of the report says sleeping on my back I had AHI of 29.9, while sleeping on the sides it as 0. I did only sleep for about 20 min in a non-supine position so it might not be that accurate but still it's an insane difference. Same with the therapeutic part but this time much lower AHI supine. With this information I started thinking why the sudden change. I realized I never sleep on my back. I'm a stomach/side sleeper, but at the beginning of the year I had some discomfort in my stomach and tried sleeping more on my back. Shortly after this the tiredness started creeping up more and more, in order to fix this I got new pillows and tried even more sleeping on my back since I at first thought it was a neck/back issue.

The day after the study I started sleeping on my stomach again and soon felt much better, but I occasionally wake up on my back still. I have gained some weight since moving the US, so trying to fix that but difficult without energy. I was hoping the CPAP machine would help me even more, but waiting for insurance to give me one is just taking to long.. I'm still waiting. I decided to just buy a second hand machine (ResMes S9 AutoSet) to try it out.

My experience with CPAP:
I have been using the machine for about 2 weeks now, some days I feel just fine waking up a bit groggy but not to bad. Other days I'm like a zombie, I'm having more bad days now then just sleeping on my stomach. I guess it takes time to be adjusted to the machine, I don't have much of an issue falling asleep with a full face mask (I'm a mouth breather). First week I used it all the time, but I still having many bad days. From feeling hopeful to now distressed and about to give up, had 3 bad days in a row and felt really bad. Might have been that I needed more sleep, the forth day I just slept without had issues with leaks in my eyes and sore nose so I decided to just skip it for one night and try a positional therapy device (Tennis ball in t-shirt) after reading about it on this board. To my surprise I slept really good that night, still tired from sleep debt. Now I really wonder how bad my apneas is sleeping on only stomach/sides. So I did a bit of a experiment last night, put he machine on lowest setting and use the Tennis Ball. I had some issue falling asleep but managed to get about 3 hours of sleep with it and AHI was 0.77. Slept the rest of the night with the machine off. Not bad, woke up very tired however maybe just too little sleep in total.

Continue in next post..

Looking at Data and Settings:
Attaching data from some night where I woke up tired, overall it looks like most of my issues are clustered. Even when there is no events still my flow limit and respiratory rate looks clustered to me ? I did ordered a "The Eliminator" to try, wont get it until tomorrow however.

I have experimented with the settings a fair bit, I started with 8 cmH2O and 3 EPR the first days. Felt like a zombie in the morning, more tired than usual. Saw some bad CA cluster so set it to 1 EPR, then EPR off. Almost no CA after that.
   

I ran a few days with fixed 8 cmH2O, feeling pretty good and hopeful. This is one of the good days.
   

Once again got another zombie day. Thought it might help with some extra pressure the next few changing to APAP 8-12, ending up with good AHI < 1.
   

Continue in next post...


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#2
RE: My story and severe positional OSA ?
Another two days feeling tired and groggy, not as bad as one of the zombie days. So maybe just sleep dept ?
   
   

Then this is when I lowered to 4 cmH2O and just used the Tennis Ball for a few hours of sleep. Was difficult falling asleep, sleep happened around 11.15 pm to around 6 am.Slept without CPAP rest of the night.



   

Conclusion:
I still don't really understand what is going on, I can't find a good correlation between AHI and feeling tired the next morning. Still feels very random to me.
If it's just getting less quality sleep wearing the mask while sleeping. Too little sleep, or massive sleep dept ?
 
I do have a feeling I might not need CPAP at all, I might just be better with a positional therapy device and make sure I don't chin tuck ?
It would be great to be able to detect apnea events without no CPAP. Would be great with some sort of wearable device should be able to help with this ?
If not maybe I can try make one... Would be so helpful to see positions, oxygen among other things with the data that the CPAP can't pickup on.

(I did see the Philips positional therapy device for like 600 USD, that is just way to much for me...)
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#3
RE: My story and severe positional OSA ?
I think the cheapest and easiest way to monitor your sleep position is a night vision camera.
Arousals persisting on sleep study with CPAP titration is interesting.
Nothing I post is medical advice and should not be taken as such, always consult a medical professional for guidance.
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#4
RE: My story and severe positional OSA ?
That's a good idea I haven't thought of, I will definitely look into that. Thanks !

Not sure what the arousals indicate or what is considered normal. Sounds like it's mostly spontaneous according to the report.
My wife did the same sleep study as me and while they didn't find anything wrong with her breathing to report, it did show she had around 280 spontaneous arousals. Whatever that is, it sounds like a lot.
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#5
RE: My story and severe positional OSA ?
On arousals, 30 means (you have 33) that someone next to you is giving you a jab in the ribs every 2 minutes on average, not quite enough to wake you up, kind of saying hey dude, don't dream about that, every 2 minutes.

I'd like to see your wife's sleep study too, in a new thread please, just to keep it separate from yours.  And I would like to hear how she feels.

Your lack of obstructive events and the frequent arousals sounds like it could be UARS, Upper Airway Resistance Syndrome, in other words, you have frequent Flow Limitations That BOTHER YOU.  You have had a few higher level of Flow Limits that are above what I would like to see eliminated, not enough to be concerned with except for your complaints. You have the wrong machine to treat this with, but the machine is a good one to get started with.  The machine you need would be the ResMed VAuto, and auto BiLevel.  Basically I strongly suspect that you will need higher levels of Pressure Support (PS / EPR) than your current machine can provide (max of 3 cmw EPR).

As you noted earlier, this is a problem, higher levels of EPR are causing you to have Treatment-Emergent Central Apneas.  You very astutely caught these and reduced your EPR, absolutely the right thing to do.  We need to raise your pressure support (PS / EPR and keep your Central Apnea under control.

The cause of the Central Apnea is that your machine is working "too good" and is washing out too much oh the CO2 from your blood, sounds like a good thing, but it isn't.  Too low a concentration of CO2 suppresses the drive to breathe resulting in a central apnea.  One solution to this you performed, you lowered your EPR.  I propose doing this with EERS which increases the amount of CO2 you rebreathe a little by effectively moving the mask vent further away from the mask.  This will allow a higher PS / EPR to better treat the Flow Limits that I believe are causing your problem.  
The issue with this is that it happens by altering a mask, and most doctors have never heard about it.  We can't do this without your knowledge and approval.  Here are a couple of Wiki Articles.
http://www.apneaboard.com/wiki/index.php...tral_Apnea
http://www.apneaboard.com/wiki/index.php...ace_(EERS)
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: My story and severe positional OSA ?
Do you think they even scored RERAs on these studies despite listing the RERA column?
Nothing I post is medical advice and should not be taken as such, always consult a medical professional for guidance.
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#7
RE: My story and severe positional OSA ?
Typically they do score RERAs, but it is not uncommon to miss them.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: My story and severe positional OSA ?
Thanks bonjour, I really appreciate the response.

I think you might be right that it have something to do with UARS since I often find my nose congested and stuffed when laying down, but fine during daytime.

What I don't understand is how lowering the pressure to 4 looks to help with the flow limit ? Does higher pressure also mean a possible higher flow limit ?
Trying to push less air down is less of an issue than twice as much air.

My idea plan right now is to go back to my old settings of fixed 8. Increase it to 9 with 1 EPR and see how that will affect things. It might be that CA is less of an issue now when I'm more used to breathing correctly? The time I had the clusters was second day of using the machine.
If this is not working doing the EERS mod and in last effort try the more expensive options.

Also I will try and get my wife's study up tomorrow.
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#9
RE: My story and severe positional OSA ?
You might want to try something to clear your nasal congestion before bed.
Nothing I post is medical advice and should not be taken as such, always consult a medical professional for guidance.
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#10
RE: My story and severe positional OSA ?
Last night I tried going with APAP 8 - 15 with 1 EPR. Used both tennis ball and chin tuck eliminator even nasal decongestant.
Nose didn't feel stuffy anytime during the night.
 
I woke up a few times (4-5 maybe) during the night most noticeably around 23.00 where I had issues falling asleep again.
Also woke around 2.00 where I quickly turned off the machine and on again to see what happened there.

Feel a bit groggy and tired but at least not like a zombie.

Looking over the data I can see there is a lot of small events that was never flagged.
I'm not sure what they are, CA ?

Overall not to many CA so maybe try going to 9-15 and 2 EPR ?


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