Still waiting to wake up refreshed

[flyingwithoutwings]

If it were not for this forum I probably would’ve quit xPAP therapy. I have been on this journey for 8.5 months now and I have yet to wake up refreshed. I have tried nasal pillows (Swift FX, Pilairo Q, Airfit P10) which don’t work for me. Nasal masks (Wisp, Mirage FX) I could fall asleep and sleep thru the night but all of a sudden I started feeling like I’m suffocating the minute I put one on. I tried the Swift Nano, too many leaks, AHI 5>. So, now I’m comfortable with the Quattro Air FFM. I usually don’t have a problem falling asleep, as long as I don’t go to bed too early, nor do I have a problem staying asleep. I’ll wake up once or twice during the night but I just look at the clock and go right back to sleep, but then I don’t want to get up in the morning and I’m always so tired during the day. On weekends I’d rather just vegetate. The one good thing is that I’m not falling asleep at stop lights anymore, but still extremely tired at work.

Every night when I’m getting ready to go to bed I want to forget about the mask and just snuggle into my pillow and ‘sleep like a baby’ like I used to, before xPAP, before I knew what OSA was doing to my body, before I even knew what OSA was. My husband used to tell me that I would gasp for air in my sleep but I didn’t believe him because, to me, I slept like a rock and woke up ready to attack the world, although I would start to wind down fast and even doze off at work, at stop lights and even once while driving. Now, I find it so hard to get up in the morning.

When I was diagnosed with severe OSA all I could think was ‘Finally, I’ll soon have my energy back.’ I’m still waiting.

Do I need another sleep test?

[BlackSpinner]

Post your sleepyhead data so we can see what is happening.

[Pugsy]

How many hours of sleep are you averaging?
Are those hours of sleep fragmented with very many wake ups?
Pain issues?
Do you take any meds (even OTC) for any reason? If so, what, dose and when do you take it?
Any other health issues at all?
Last labs...probably the routine stuff but what about vitamin D...thyroid?
What symptoms specifically do you want to see an improvement on? Still wanting to nap during the day? Daytime fatigue? They aren't the same thing.

There's so much more to feeling better during the day than just treating OSA and getting good AHI and leak numbers.
Wish it were that easy.

[flyingwithoutwings]

How many hours of sleep are you averaging?
Between 6.5 - 7

Are those hours of sleep fragmented with very many wake ups?
No, I only wake up twice and just look at the clock & go back to sleep. Even on the days where I have a large leak, I'll go right back to sleep.

Pain issues?
Only pain is my lower legs due to venous insufficiency.

Do you take any meds (even OTC) for any reason? If so, what, dose and when do you take it?
I take HBP meds Losartan 50mg 1 morning 1 evening, HCTZ 25 mornings, Thyroid meds Tirosint 75 mcg & Liothyronine Sodium 15 mcg, first thing in the morning.

Any other health issues at all?
No other health issues that I'm aware of

Last labs...probably the routine stuff but what about vitamin D...thyroid?
I have an appointment with my PCP on 7/14 for the results of my last labs. I take D3 4,000, B12 & DHEA

What symptoms specifically do you want to see an improvement on? Still wanting to nap during the day? Daytime fatigue? They aren't the same thing.
I'm always so tired, my 89 year old mother has more energy than I do. I've started taking naps, which I never did before, because I can't stay awake in the afternoon.

There's so much more to feeling better during the day than just treating OSA and getting good AHI and leak numbers.
Wish it were that easy.

[Pugsy]

So fatigue is primary complaint.
Not everything is related to OSA and thus the machine can't fix fatigue that isn't caused by OSA sleep issues.

When we look good on paper (nice software reports and nothing just stands out screaming "fix me") then we really don't have much choice but to look at other possible factors.. Often it isn't just one thing but a combination of things.
First thing to check up on...look at all your meds for any with possible side effects that would include fatigue or sleep disruption of any kind.

Also look at the 2 health conditions themselves.
Pain...even in small amounts it will/can sure mess with the restorative powers of sleep.

Hours of sleep...you may simply need more sleep time which is easier said than done.
Fragmented sleep is obvious problem but you say that doesn't seem to be an issue with you.

Definitely some things to talk over with your doctor next month.

FWIW....I notice a big difference in my energy levels when I get 7 1/2 to 8 hours of sleep vs 6 to 7 hours.
I have some significant arthritis issues so sometimes pain levels are minor and sometimes way above minor...even the "minor" pain impacts my sleep and my energy. It took me 2 years to find a suitable med combination that allowed me a more restful sleep and to feel much of those good numbers I was seeing on the reports.
My killer AM headaches and nocturia went away pretty much immediately but that energy thing took a lot longer and is a work in progress always.

[flyingwithoutwings]

I would give anything to be able to sleep more than the 6.5 - 7 hours I sleep. If I go to bed any earlier, it takes me longer to fall asleep and I end up falling asleep later than my usual time. If I do manage to fall asleep earlier, then I'm awake by 2 am and can't go back to sleep.

I still don't know how to upload the screenshots (very frustration since I've never had problems before), below are links for Thursday & Friday. I forgot to put my card back last night.

https://dl.dropboxusercontent.com/u/816 ... 6.14.1.png
https://dl.dropboxusercontent.com/u/816 ... 6.14.2.png
https://dl.dropboxusercontent.com/u/816 ... .26.14.png
https://dl.dropboxusercontent.com/u/816 ... .27.14.png
https://dl.dropboxusercontent.com/u/816 ... 7.14.1.png
https://dl.dropboxusercontent.com/u/816 ... 7.14.2.png

What's frustrating is that my doctor hasn't been able to figure out what my problem is either. Hoping this last lab work will tell us something.

[Wulfman...]

Try a straight pressure (CPAP mode) of about 9 cm. and see what things look like.


Den

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[Tatooed Lady]

I have a friend who was recently diagnosed with Chronic Fatigue Syndrome...tired all the time, barely able to hit the bathroom without needing a nap. Maybe some of your issues lie in a similar direction to a lesser extent?

[flyingwithoutwings]

Try a straight pressure (CPAP mode) of about 9 cm. and see what things look like.


Den

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I just might try that.....see what happens.

I have a friend who was recently diagnosed with Chronic Fatigue Syndrome...tired all the time, barely able to hit the bathroom without needing a nap. Maybe some of your issues lie in a similar direction to a lesser extent?

No sense wondering why my PCP hasn't suggested that, I've been complaining about my tiredness & daytime sleepiness for YEARS and was only tested for OSA last year. But then again, I don't have any of the other symptoms of CFS.

[flyingwithoutwings]

Try a straight pressure (CPAP mode) of about 9 cm. and see what things look like.


Den

.

Well I took your advice and put my machine on CPAP mode - started at 8.5 and had a not so good night. Lowered it to 8. Still wasn’t doing that great so I switched from the FFM back to the Wisp and I've been sleeping straight thru the night, even waking up right before the alarm on occasion. Last night my AHI was .30 - a first. I'm still tired most of the time and will fall asleep on the couch as soon as I sit down but there are other issues going on that have to be tweaked (like my Thyroid meds), before I blame it all on OSA. For now, I’m a happy camper.

[Luthie2006]

Flyingwithoutwings: I think using the CPAP successfully is a great treatment of sleep apnea, but from what my sleep doc just told me the other day, it doesn't cure tiredness or fatigue; just sleep apnea. One of the benefits that we all would like to see is refreshing wake-ups. It has not happened for me either, and may never happen. I have come to that realization but at least using the CPAP, I am not putting my brain or heart or kidneys through any stress. I have to wake up at 5:00 am each morning for work and it is horrible. I do get up in the middle of the night for at least one bathroom trip, and I wake up too "for no good reason" and look at the clock a few times in the middle of the night. The sleep doc said the CPAP treatment is working, so I guess that's the best I can ask for. What time do you wake up each morning? I do have to say that when I was off on vacation last week, I actually slept until
8:00 am which is late for me because I didn't have to go to work. I still had awakenings in the night, but I felt so much more refreshed not having to wake up at 5:00 am. Unfortunately, I have to work! Do you get up early in the morning for work? I know for me, like I said, even with my awakenings all night, being able to sleep 3 more hours in the morning for me was heaven.

[flyingwithoutwings]

Flyingwithoutwings: I think using the CPAP successfully is a great treatment of sleep apnea, but from what my sleep doc just told me the other day, it doesn't cure tiredness or fatigue; just sleep apnea. One of the benefits that we all would like to see is refreshing wake-ups. It has not happened for me either, and may never happen. I have come to that realization but at least using the CPAP, I am not putting my brain or heart or kidneys through any stress. I have to wake up at 5:00 am each morning for work and it is horrible. I do get up in the middle of the night for at least one bathroom trip, and I wake up too "for no good reason" and look at the clock a few times in the middle of the night. The sleep doc said the CPAP treatment is working, so I guess that's the best I can ask for. What time do you wake up each morning? I do have to say that when I was off on vacation last week, I actually slept until
8:00 am which is late for me because I didn't have to go to work. I still had awakenings in the night, but I felt so much more refreshed not having to wake up at 5:00 am. Unfortunately, I have to work! Do you get up early in the morning for work? I know for me, like I said, even with my awakenings all night, being able to sleep 3 more hours in the morning for me was heaven.

Yes, I have to work too. Weekdays I get up at 6:15 to get ready for work. On weekends I sleep till 7:00, maybe 7:15, I've never been a late sleeper. Prior to PAP I would wake up once or twice for bathroom breaks but not anymore, just wake up and go right back to sleep but for the past two nights I've slept straight thru the night. YAY.

[Wulfman...]

Try a straight pressure (CPAP mode) of about 9 cm. and see what things look like.


Den

.

Well I took your advice and put my machine on CPAP mode - started at 8.5 and had a not so good night. Lowered it to 8. Still wasn’t doing that great so I switched from the FFM back to the Wisp and I've been sleeping straight thru the night, even waking up right before the alarm on occasion. Last night my AHI was .30 - a first. I'm still tired most of the time and will fall asleep on the couch as soon as I sit down but there are other issues going on that have to be tweaked (like my Thyroid meds), before I blame it all on OSA. For now, I’m a happy camper.

Glad to hear that. Hang in there.
It can take awhile to repay the sleep debt. And, if you weren't sleeping well before, you may just be at the "starting point" NOW.


Den

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