Why am I still sleepy?!?!?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
jetspeed219
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Joined: Tue Jul 29, 2014 6:12 am

Why am I still sleepy?!?!?

Post by jetspeed219 » Tue Jul 29, 2014 6:22 am

Hi all, new to the forum and had a question. I've been using CPAP since 2012 but my daytime sleepiness hasn't gone away. I regularly have my machine checked and downloaded but am always told that "everything looks great". So why am I still tired?!?! This is super frustrating and I don't know what else to do. I did download sleepyhead and have attached a screenshot of my data. Is there anything that sticks out?Image

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Pugsy
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Re: Why am I still sleepy?!?!?

Post by Pugsy » Tue Jul 29, 2014 6:51 am

Nothing on the data you offered screams out "fix me" that I can see.
So we look at the usual questions when things look good on paper but we don't feel so good.

Looks like hours of use is pretty good but how is the overall sleep quality? Do you wake up often? If so, any idea why?
You mention sleepy and tired. Which is it or is it both? They aren't the same thing. Fatigue doesn't always equal sleepy.
Do you take any meds of any kind? If so, what?
Do you have any other health issues?
Have you had an in depth physical complete with all the routine labs plus some that aren't so routine like hormone levels and Vitamin D levels?
Do you have issues with pain...even low level?
Any issues with the cpap equipment? Minor leaks bugging you or any discomfort with the mask?
I see you are using APAP mode. The pressures don't seem to vary wildly but some people find they sleep better and feel more rested if they use a fixed pressure because the pressure changes (even if small) seem to affect sleep quality. Have you ever tried cpap mode or apap mode with tiny range...like 1 cm.
What was your official diagnosis? What was your diagnostic AHI?
Any issues falling asleep or staying asleep or if you wake during the night ..falling back to sleep?

I do see some RERA and FLs and while not a large number the RERAs could point to less than optimal sleep quality. Have you always used these settings shown with the minimum of 5 cm pressure? Have you ever tried a little higher minimum just to see how things went?

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jetspeed219
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Joined: Tue Jul 29, 2014 6:12 am

Re: Why am I still sleepy?!?!?

Post by jetspeed219 » Tue Jul 29, 2014 7:23 am

Pugsy wrote:Nothing on the data you offered screams out "fix me" that I can see.
So we look at the usual questions when things look good on paper but we don't feel so good.

Looks like hours of use is pretty good but how is the overall sleep quality? Do you wake up often? If so, any idea why?
As far as I know the sleep quality is good. My wife does say that I move around quite a bit in my sleep though. She says sometimes I will have my legs up and bent from time to time which is a little odd. I don't wake often at all. Usually once I'm asleep that's it until morning.
You mention sleepy and tired. Which is it or is it both? They aren't the same thing. Fatigue doesn't always equal sleepy.
I guess I'm not sure what the difference is. I have that "head fog" feeling, like I didn't get enough sleep. I have no issues staying awake during the day, just feel "foggy".
Do you take any meds of any kind? If so, what?
No meds
Do you have any other health issues?
No other health issues
Have you had an in depth physical complete with all the routine labs plus some that aren't so routine like hormone levels and Vitamin D levels?
Yes, I have this done once a year. I have a minor vitamin D deficiency which I treat with daily vitamins.
Do you have issues with pain...even low level?
Neck and back pain that I've had for years, it is minor pain.
Any issues with the cpap equipment? Minor leaks bugging you or any discomfort with the mask?
None at all
I see you are using APAP mode. The pressures don't seem to vary wildly but some people find they sleep better and feel more rested if they use a fixed pressure because the pressure changes (even if small) seem to affect sleep quality. Have you ever tried cpap mode or apap mode with tiny range...like 1 cm.
When I started the CPAP treatment I was started on CPAP mode at 7CM. I was having severe bloating with that pressure so they suggested the APAP mode. That did fix the bloating issue. Maybe I should try going back to the CPAP mode now that I've been using the machine for a while now?
What was your official diagnosis? What was your diagnostic AHI?
Official diagnosis was mild sleep apnea. I was originally using a dental device but after about a year it stopped being effective. I believe diagnostic AHI was 7.8.
Any issues falling asleep or staying asleep or if you wake during the night ..falling back to sleep?
None at all, I generally fall asleep within 5-10 minutes of laying down and don't wake until 8 or so hours later.

I do see some RERA and FLs and while not a large number the RERAs could point to less than optimal sleep quality. Have you always used these settings shown with the minimum of 5 cm pressure? Have you ever tried a little higher minimum just to see how things went?
I have always used this setting since switching to the APAP mode. I was thinking about bumping it up though so maybe I will give that a try.

Thank you for your reply.

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justinjustin
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Re: Why am I still sleepy?!?!?

Post by justinjustin » Tue Jul 29, 2014 7:36 am

jetspeed219 wrote:Hi all, new to the forum and had a question. I've been using CPAP since 2012 but my daytime sleepiness hasn't gone away. I regularly have my machine checked and downloaded but am always told that "everything looks great". So why am I still tired?!?! This is super frustrating and I don't know what else to do. I did download sleepyhead and have attached a screenshot of my data. Is there anything that sticks out?Image
Pugsy is bang on with those questions.
Are you -certain- you've definitively ruled out other possible (however unlikely) causes for fatigue/excessive sleepiness?
For example, hypothyroidism can mimic many of the symptoms of Sleep Apnea.

For what it's worth, I used CPAP/APAP for months with no improvement, despite "everything looks good" on my data. It wasn't until I had another PSG that we found I had UARS that wasn't detected in the previous PSG studies or CPAP data. My titration is set *much* higher now; I was 8cm on CPAP, now on ASV at 8cm EPAP and PSmin 6, PSmax 14. That means I could require up to 22cm pressure on inhalation, way higher than measly 8cm! The ASV is new and hasn't cured my fatigue/sleepiness, but it seems to be a making a difference, whereas CPAP did nothing, except frustrate me.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Complex Sleep Apnea, mainly CSA, with UARS. RDI of 30 w/o xPAP.

jetspeed219
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Joined: Tue Jul 29, 2014 6:12 am

Re: Why am I still sleepy?!?!?

Post by jetspeed219 » Tue Jul 29, 2014 7:41 am

I've had a full blood panel done and there was nothing other than a minor vitamin D deficiency that was abnormal. I've since been taking vitamin D since January.

Is a PSG a sleep study? What is UARS? ASV? EPAP? Sorry all of these acronyms are confusing!

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Julie
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Re: Why am I still sleepy?!?!?

Post by Julie » Tue Jul 29, 2014 8:13 am

PSG (Polysomnogram) is a sleep study. The others can be found by clicking the lightbulb at the top of the pgs and finding "Glossary", or doing a forum search for them.

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Pugsy
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Re: Why am I still sleepy?!?!?

Post by Pugsy » Tue Jul 29, 2014 8:14 am

Google UARS Upper Airway Respiratory Syndrome for more reading but this one will get you started.
http://en.wikipedia.org/wiki/Upper_airw ... e_syndrome
Please note that I am not saying that is what your issue is but it wouldn't be impossible given your history and the fact that your diagnostic AHI wasn't really horrible. It did pop into my head when I saw the RERAs though.

Regarding the "foggy" symptom. That's not really fatigue and it's not really sleepiness either. I do understand that it's often difficult to put a name to what we are experiencing.
PSG is a sleep study
ASV is a special type of machine that is usually used to treat central sleep apnea but sometimes is used for other reasons.
EPAP is simply exhale pressure which might be different from IPAP which is inhale pressure. Your machine doesn't offer marked different settings for EPAP and IPAP. You can get a little reduction during exhale phase by using the Flex exhale relief.

Your Flex exhale relief...if you haven't tried it you might give it a try. Even though your pressures are relatively low the change in breathing rhythm using Flex might be something your body likes and anytime your body likes something there is a greater chance of it resting better and resting better gives us a greater chance to feel better during the day.

For more acronyms you can go to the Wiki at the top of the main forum page and take a stroll through definitions.

Pain...even low level pain will definitely affect the quality of our sleep and anything that affects the quality of our sleep can affect how we feel the next day.

While it would be really nice if all our unwanted daytime symptoms were related to OSA and could be fixed with the CPAP machine, the cold hard facts of life is that not everything we don't want can be eliminated by using the CPAP machine and getting really nice AHI numbers on those reports. The machine can't fix stuff that isn't related to sleep apnea no matter how much we want to think it will or those unwanted symptoms can be blamed on sleep apnea.

A little more minimum pressure would be worth a try though. Since aerophagia issues could rear their ugly head you want to go up slowly and carefully. If you wanted to try cpap mode again then I would avoid where you were in the past and start lower and maybe work up...like start at 6 ish in cpap mode and see what happens. Or use a really tight apap range like 6 to 7 or 8.
If there is a UARS component going on with you...xpap is still the preferred treatment but you have to go on how you feel because UARS doesn't really show itself in the software data with AHI...and RERAs and FLs are only maybe indicators and not something that tells us definitively that UARS is a factor. Seems like historically people who do have the UARS diagnosis need more pressure past the good AHI pressures but with your history of aerophagia you don't want to get to aggressive with those pressures because you could end up feeling worse with the aerophagia and we don't know for sure that UARS is going on here anyway.

_________________
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justinjustin
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Re: Why am I still sleepy?!?!?

Post by justinjustin » Tue Jul 29, 2014 8:25 am

jetspeed219 wrote: As far as I know the sleep quality is good. My wife does say that I move around quite a bit in my sleep though. She says sometimes I will have my legs up and bent from time to time which is a little odd. I don't wake often at all. Usually once I'm asleep that's it until morning.
This sounds like possible RLS (Restless Leg Syndrome) which can disturb sleep despite good AHI/CPAP #s.
Did your PSG (Polysomnography) test show any incidence of periodic leg movement?
On your blood panels, was iron ferritin within normal range? That can be *one* cause of RLS.
Everyone moves and shifts in their sleep, but excessive movement or kicking of the legs is suspicious.
jetspeed219 wrote: You mention sleepy and tired. Which is it or is it both? They aren't the same thing. Fatigue doesn't always equal sleepy.
I guess I'm not sure what the difference is. I have that "head fog" feeling, like I didn't get enough sleep. I have no issues staying awake during the day, just feel "foggy".
Have you been tested for allergies, or food sensitivities? A friend of mine complained of 'brain fog' and headache for years, then was tested at the age of 31 for gluten intolerance and was found to have celiac disease. Cutting wheat and gluten resolved her brain fog completely.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Complex Sleep Apnea, mainly CSA, with UARS. RDI of 30 w/o xPAP.

jetspeed219
Posts: 6
Joined: Tue Jul 29, 2014 6:12 am

Re: Why am I still sleepy?!?!?

Post by jetspeed219 » Tue Jul 29, 2014 8:48 am

This sounds like possible RLS (Restless Leg Syndrome) which can disturb sleep despite good AHI/CPAP #s.
Did your PSG (Polysomnography) test show any incidence of periodic leg movement?
No it sure didn't.
On your blood panels, was iron ferritin within normal range? That can be *one* cause of RLS.
Yes it was within the normal limits.
Everyone moves and shifts in their sleep, but excessive movement or kicking of the legs is suspicious.
Exactly what I was thinking.

Have you been tested for allergies, or food sensitivities? A friend of mine complained of 'brain fog' and headache for years, then was tested at the age of 31 for gluten intolerance and was found to have celiac disease. Cutting wheat and gluten resolved her brain fog completely.[/quote]

I was tested when I was very young for allergies and the only thing at the time was hay fever. Never thought about that, great idea though I will look into it.

jetspeed219
Posts: 6
Joined: Tue Jul 29, 2014 6:12 am

Re: Why am I still sleepy?!?!?

Post by jetspeed219 » Tue Jul 29, 2014 8:50 am

Pugsy wrote:Google UARS Upper Airway Respiratory Syndrome for more reading but this one will get you started.
http://en.wikipedia.org/wiki/Upper_airw ... e_syndrome
Please note that I am not saying that is what your issue is but it wouldn't be impossible given your history and the fact that your diagnostic AHI wasn't really horrible. It did pop into my head when I saw the RERAs though.

Regarding the "foggy" symptom. That's not really fatigue and it's not really sleepiness either. I do understand that it's often difficult to put a name to what we are experiencing.
PSG is a sleep study
ASV is a special type of machine that is usually used to treat central sleep apnea but sometimes is used for other reasons.
EPAP is simply exhale pressure which might be different from IPAP which is inhale pressure. Your machine doesn't offer marked different settings for EPAP and IPAP. You can get a little reduction during exhale phase by using the Flex exhale relief.

Your Flex exhale relief...if you haven't tried it you might give it a try. Even though your pressures are relatively low the change in breathing rhythm using Flex might be something your body likes and anytime your body likes something there is a greater chance of it resting better and resting better gives us a greater chance to feel better during the day.

For more acronyms you can go to the Wiki at the top of the main forum page and take a stroll through definitions.

Pain...even low level pain will definitely affect the quality of our sleep and anything that affects the quality of our sleep can affect how we feel the next day.

While it would be really nice if all our unwanted daytime symptoms were related to OSA and could be fixed with the CPAP machine, the cold hard facts of life is that not everything we don't want can be eliminated by using the CPAP machine and getting really nice AHI numbers on those reports. The machine can't fix stuff that isn't related to sleep apnea no matter how much we want to think it will or those unwanted symptoms can be blamed on sleep apnea.

A little more minimum pressure would be worth a try though. Since aerophagia issues could rear their ugly head you want to go up slowly and carefully. If you wanted to try cpap mode again then I would avoid where you were in the past and start lower and maybe work up...like start at 6 ish in cpap mode and see what happens. Or use a really tight apap range like 6 to 7 or 8.
If there is a UARS component going on with you...xpap is still the preferred treatment but you have to go on how you feel because UARS doesn't really show itself in the software data with AHI...and RERAs and FLs are only maybe indicators and not something that tells us definitively that UARS is a factor. Seems like historically people who do have the UARS diagnosis need more pressure past the good AHI pressures but with your history of aerophagia you don't want to get to aggressive with those pressures because you could end up feeling worse with the aerophagia and we don't know for sure that UARS is going on here anyway.
Thanks for the reply Pugsy. Wow, that is a lot of info. There are so many things that can effect sleep I just don't even know where to start. Very overwhelming. I am going to start with the sleep doc and talk with him about changing my settings and seeing if that does anything. Next will be testing for allergies.