What should I be talking to my doctor about?

[LisaSch]

Sorry for the second post, but I just figured out how to do my images. I see my doctor today and need to know how to talk to him considering the report below. I was diagnosed with sleep apnea last year with severe sleep apnea. But I am still tired. While my AHI looks good on the report, I was hoping there might be some clues in here or you experts...Thank you!!!

[zoocrewphoto]

Perhaps somebody else can answer this, but does sleepyhead show you the length of events? When I check my graphs in ResScan, I can see how long how my events are, and that could possibly be an issue.

Otherwise, your numbers look great, so there may be something else that is still keeping you tired.

Are you sleeping straight through or waking up a lot? Have you had any bloodwork done recently? Did your sleep study find anything else, like leg movements or anything? How many hours per night are you sleeping total? Are you using the machine for the whole night?

[LisaSch]

I am not sure how long the events are. I do wake to turn over. I do not have the leg movement thing. I sleep about 7 hours per night. I have blood work 2x per year. Nothing in there...healthy otherwise.

[Pugsy]

SleepyHead does show event duration on the S9 machines. It's under the Events tab (next to detailed tab over by the statistics on the left)...just click on the events tab and the various categories of events will show up and then to see event duration click on one of the categories to see each individual event. Number in parentheses for OAs and CAs (centrals) is the number of seconds. Click on one of the single events to see the graphs on the right change and zoom in for breath by breath view.

Though I doubt that event duration is a problem with your situation.
You look good on paper but don't feel those good numbers.
Not everything can be fixed by nice low AHI and boring looking reports because not all feeling like crap is solely related to OSA and the machine can't fix stuff unrelated to OSA.

Been on therapy 23 nights...that's not very long and it may just be that you need to give it some more time.
While giving it time (like you don't have much of a choice anyway) you might use that time to investigate other possible culprits in why we don't feel so great. There's a long list to sort through.

Meds...
hours of sleep
fragmented sleep
other health conditions
bed comfort
etc, etc
that's what I would be talking with the doctor about.

[LisaSch]

I have been on therapy since October and very compliant. I sleep an average of 7 hours. Only take Armor thyroid and at that only 30 mgs. I take Vit. D and other vitamins and have no other health issue at this time. My bed is of high quality and I sleep comfortably. I only wake slightly to turnover a few times or to pull up a cover. Not restless, no issue falling or staying asleep. I am not home now so I cannot check the duration. Thank you so much for your reply.

[Pugsy]

I was going by the 23 days of use showing in your SleepyHead Statistics.

There's nothing on the reports that stands out as needing fixing and you will feel better.
You aren't alone...a lot of people report that they don't feel as good as the reports says they should.
Sometimes it is just a matter of time and sometimes its a LOT of time. We don't know why.
We do know that we can't stop using the machine just because we don't feel like we expected or got the miracle that we read other people get lucky enough to have.

I noticed a huge improvement in terms of daytime needing to nap when I started averaging nearly 8 hours of sleep instead of 7 hours and this was 2 years after start of therapy...an extra 45 minutes for me makes a huge difference.

So you may need to dig deeper into the other possible causes of daytime fatigue.
Routine labs don't normally check for vitamin D levels...you might ask about that.
Also I don't know your age but hormone levels aren't a routine lab either.
Start looking for outside the norm culprits for fatigue.

The mask and machine does a great job when the only issues are sleep apnea events and related things...it's not useful at all when there are other things going on and there's a lot of other things that can be going on.
Someone recently reported long standing chronic fatigue from Lyme's disease.

People who have arthritis or some other chronic pain issue find that the pain affects the quality of sleep....and that affects how we feel during the day.
Go over your sleep study with the doctor to see if you are getting optimal amount of time in each sleep stage..there's a sleep cycle the body has to go to in terms of sleep architecture that needs to be met for optimal chance of feeling better.
People have sleep disorders who don't have sleep apnea and they feel like crap too.
Take a hard look at sleep hygiene to see if there is any room for improvement in that area.
Do you wake up often during the night? If so that affects that sleep architecture. How many times during the night do you think you wake to turn over? Why? Pain?

[LisaSch]

Yes, I have been fighting Vit. D for years now. My highest level even when taking 10k units was still only 27. I am not sure what to do other than go outside for 20 minutes a day…

Interesting you said you wanted to nap more after 8 hours. I have spent a lifetime avoiding naps. I was the kid who would not sleep during nap time in kindergarten. I was hyperactive then, but I did sleep from 8 to 7 back in those days…I got a good 8 to 10 as a child. I never fall asleep, but I get the 3 PM blues and yawn. Put me in a meeting and I feel like I can't keep my eyes open…and yawn continuously…but this is at the end of the day.

I can see why arthritis folks have sleeping issues. Pain meds wreck havoc with my sleeping.

I had a knee replacement and breast cancer in 2012, no chemo, but a big surgery. I feel recovered from all that…my tiredness predates those big surgeries.

Thank you so much for your thoughtful insight. I figured if there was something weird in my pictures you guys would spot it. The only thing that stood out to me was the fluctuating in each night's episodes as shown in the pie charts and bar charts. I would have thought most nights would be about the same.

What I do see as very strong improvements is I no longer get up at night to pee. I also am not in one long never ending dream at night, which I was in before I got on the machine. I feel so much better using the machine, but I still suffer from tiredness. Like there is a group of things that is definitely better, and another group that is not.

Do others wake slightly to turn over? Do most people just sleep solid and not aware of anything until they wake? I have no concept of normal.

Lisa

[Pugsy]

Interesting you said you wanted to nap more after 8 hours

No, I guess I didn't make myself clear..the need to nap rarely pops up when I get 8 hours of sleep.

I do wake often when I turn over in bed ...in my case it's usually due to the arthritis pain...so I have to deal with the pain some how so that the wake ups are limited. When I first started cpap therapy I wasn't really addressing the pain issues and would wake 30 to 40 times a night with turning over pain. So even though cpap therapy was looking good on paper I was feeling like total crap from simply poor sleep quality.

The only thing that stood out to me was the fluctuating in each night's episodes as shown in the pie charts and bar charts. I would have thought most nights would be about the same.

Actually the variances you see are within normal ranges for variables. We simply don't sleep the same each night.
I might have AHI of less than 1.0 one night and the very next night have AHI of 5.01 (did that a couple of weeks ago) and then the next night AHI was less than 0.5 and nothing changed and I didn't feel one bit different.

Maybe a person sleeps more on their back on some nights than others...maybe a person has more REM stage sleep some nights than others. Both of those can and will impact the AHI and how we sleep as OSA is known to often be worse with supine sleeping or REM stage sleep.

[robysue]

Do most people just sleep solid and not aware of anything until they wake? I have no concept of normal.

Seems to me that this would be a very good topic for you to bring up with the sleep doc. Lots of people who have had bad sleep for years really have no idea what normal sleep feels like. And one critical part of PAP therapy is reasonable expectations, and that includes what a normal, decent night's sleep actually consists of and feels like.

There are people with normal sleep patterns who do wake up a few times each night, but the wakes are brief and much of the time, the person doesn't even remember them. Sometimes the best thing you can do for a few wakes in the night is to learn how to NOT worry about them.

Yes, I have been fighting Vit. D for years now. My highest level even when taking 10k units was still only 27. I am not sure what to do other than go outside for 20 minutes a day…

This is something you need to talk to your PCP about. The Vit. D levels may explain the ongoing problem with tiredness (fatigue) in spite of what looks like optimal or near optimal CPAP therapy.

Interesting you said you wanted to nap more after 8 hours. I have spent a lifetime avoiding naps. I was the kid who would not sleep during nap time in kindergarten. I was hyperactive then, but I did sleep from 8 to 7 back in those days…I got a good 8 to 10 as a child. I never fall asleep, but I get the 3 PM blues and yawn. Put me in a meeting and I feel like I can't keep my eyes open…and yawn continuously…but this is at the end of the day.

Some of that could be circadian rhythm stuff. And does eating a big lunch make the afternoon sleepies even worse?

Also do you eventually start to wake up during the evening???

Thank you so much for your thoughtful insight. I figured if there was something weird in my pictures you guys would spot it. The only thing that stood out to me was the fluctuating in each night's episodes as shown in the pie charts and bar charts. I would have thought most nights would be about the same.

There's no obvious culprit in your data. The fluctuating is not really a surprise; we don't sleep exactly the same each night.

What I do see as very strong improvements is I no longer get up at night to pee. I also am not in one long never ending dream at night, which I was in before I got on the machine. I feel so much better using the machine, but I still suffer from tiredness. Like there is a group of things that is definitely better, and another group that is not.

Focus on the fact that you ARE starting to feel better. You've likely had OSA for a long time and sometimes it just takes people a while to "heal" from the damage the OSA has done. If you are still feeling excessively sleepy and tired in the afternoon after another 2-3 months of PAP therapy, you might find the sleep doc has something to say other than "It's still pretty early; just give it more time."

Do others wake slightly to turn over?

Lots of folks find they have to wake up more than they'd like at the beginning of PAP just to turn over. It takes a while to figure out how to gracefully turn over in bed with a six foot hose attached to your nose: You've got to avoid getting tangled in the hose; you're conscious of the need to not jostle the mask too much; and there's the common newbie fear of pulling the machine off the night table. Eventually your brain and body straightens it out and learns how to do all this without fully wakening. So if this pattern started when you started CPAP, then chances are it will diminish with time.

But if you were needing to wake enough to remember waking just to turn over before you started PAP, then it could be that there are some issues you're not fully aware of that are going on. Pain perhaps? Or leg movements of the kind in PLMD?

[echo]

Lisa, look into taking Vit K2 together with the vit D. I resisted for a year but it's made a big difference in my vit D levels.

[LisaSch]

Thank you all again for the thoughtful replies. I will look into the vit k2.