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Forever sleepy - help!
#1
Gross 
Forever sleepy - help!
Hey everyone! 

This is my first time posting on the board and glad to maybe have some help. 

I've been using CPAP for about 5 years now and have found it to have little help in my energy levels and tiredness. I'm at my wits end here after seeing many different sleep doctors, new machines, masks etc.. you know the drill. 

Most of the doctors have told me that my "numbers look great!" and that I may have Idiopathic Hypersomia and that I should take a stimulant during the day. Which seems like it's not a cure just a band aid. Up until 5 years ago I never had any sleep problems. I just lost 50lbs, I'm 5'8 and weight 196 and still on track to lose about 20lbs more. in that time nothing much has changed on my sleep front.. I've noticed nasal pillows make me more sleepy, Nasal mask works ok until I start mouth breathing (I've tried a chin strap which works for about a day) and the only thing that is ok is a full face mask. Nothing gets me back to 100% and any day I can wake up tired. [url=https://www.google.com/search?client=safari&rls=en&q=idiopathic+hypersomnia&ie=UTF-8&oe=UTF-8][/url]

attached is some of my Oscar data. tried to take a couple samples from different days in the past couple of months. Any help would be greatly appreciated!


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#2
RE: Forever sleepy - help!
Welcome to the board. Your numbers do look good. But I would suggest a couple of changes and you can as if they make you FEEL better. Your numbers won’t get lower but you could find you feel better.

I would change EPR to full time (you have it to ramp only)

Set EPR to 3 (you have it set to 1 now)

Move the min from 5 to 7.

Give a a day or two and let’s see how you are feeling. It will not change overnight but in a few days you should feel better.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#3
RE: Forever sleepy - help!
                Hey @staceyburke

Thanks for the tips. I tried ERP to (Full Time) and on 3, plus moved min from 5 to 7. 

May 3 - still felt tired but noticeably less sleepy 

May 4 - had one of my better days. still tired but could actually function  

May 5 - tried fill mask with a chin strap and next day felt terrible.

I did wake up in the middle of the night on May 5th and noticed by lower jaw completely down towards my neck. (not like my jaw was dropped but it was like pushed back in my throat) weird feeling. maybe a MAD device could be a solution. I also ordered a cervical collar anyone has any thoughts on those. I think I'll bail on the chin strap because using it with a full face mask doesn't feel like it's doing any good other than push my jaw into my neck. 

Attached are my 3 days of reporting if anyone wants to take a look. 

I feel like I'm on the right track and getting closer. I appreciate all the help. Thanks!
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#4
RE: Forever sleepy - help!
Instead of a chin strap try a soft cervical collar. And try turning off the ramp. It's a feature needed only until you adapt.
Sleepster

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#5
RE: Forever sleepy - help!
hey all. Here is the latest! 

I don't have those hard bouts of hardly functioning but I am still tired and I had to take a nap yesterday. Sleepy today. 

Attached are my last 3 days. seems like I do get some mask leaks. maybe I need a larger size? 

Any suggestions ????

thanks 
forever sleepy

I've tried a chin strap and a collar. don't seem to help much. maybe mouth tape? however I'm using a full face mask shouldn't that help with mouth breathing?


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#6
RE: Forever sleepy - help!
I'm not an expert, so will leave the CPAP therapy advice to others here. But one thing I've noticed is that your tidal volume and minute vent are very low for a fairly big guy. You're the same weight as me and mine are low for my size (c 450/7), but in my case partly due to occasional mouth breathing leaks - you don't appear to have any real leak issues though. It's likely, with those levels, that your blood oxygen saturation (SPO2) is low, which would explain the drowsiness and above average time in bed. Any daytime breathing issues that you're aware of? Might be worth getting something like a Viacom/Wellue ring to check night time SPO2 levels. If you have daytime breathing issues, you could just buy a cheap SPO2 sensor in any pharmacy, to check that.
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#7
RE: Forever sleepy - help!
Thanks for your insight! Daytime I usually feel pretty good but I have light asthma that I have a rescue inhaler for. I don’t use it much though. However I do notice I take short breaths and do have some shallow breathing but I’m only really noticing it now that you mentioned it. Wonder if I have shallow breathing when I’m in rem or sleeping. Possible it could give me some micro arousals. Is this called something ? Or how do I check for this?
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#8
RE: Forever sleepy - help!
I have occasional asthma also and am currently awaiting some tests since it has worsened and become more chronic recently. But it has not affected either my tidal volume/minute vent or night-time SPO2. I compared your data to mine just now and another thing I noticed is that, while your mean respiratory rate is well within the normal range, it is over 20 for 5% of the time (the 95% figure). That might suggest some periods of quick shallow breathing. But the Oscar data can't really tell whether your SPO2 falls too low at night or not. The only way to be sure is to get a continuous SPO2 monitor. These things used to be very expensive, but there are lots of fairly accurate options available now at a relatively low price. Things like Fitbit are not really accurate enough. You need to get something that's worn on a finger. You can search the forum here for "SPO2 monitoring" or such like. I use the Wellue ring from getwellue.com. I think it may be sold as the Lookee ring in the US - should cost around $150. They are simple to use and are linked to a phone app. It's possible, but not necessary, to download the data to Oscar from some of them. Worth getting for peace of mind, if nothing else. They also track heart rate which can be a good indicator of general cardiac health (especially any trends over time).
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