Excessive Daytime Somnolence - Help, please!

[lullaby]

Oldern,

I also suffer from excessive daytime sleepiness even though my CPAP treatment is optimal and my stats are great. Basically, i'm now on stimulants (dexamphetimine) to get me through the day. I'm going to talk to my sleep doc about trying the newer 'wakening' meds such as Modafinil or Provigil. Whilst i really didn't want to go down the stimulant road, it has made a big difference with getting through the day.

Unfortunately, i seem to be one of those 20% (or whatever the figure is) that still suffer from eds even though cpap is working. I've had 5 sleep studies and 5 mslt studies in the last 2 years to try and get to the bottom of what is going on. The problem is that every test i did was completely different to the last! One study had me sleeping soundly with plenty of rem sleep. The next study showed no rem sleep. One study showed plmd symptoms. I was put on medication which made the leg movements worse. The next study showed no leg movements and the last study showed some leg movements but with no arousals as a result.

My sleep doctor is great but he seems to have run out of answers hence the stimulants. He's also recommended that i get a second opinion from another sleep doc just in case he has missed something.

I'm still searching for answers. Hope you find yours.

[Oldern]

jdm2857
Certainly you are right. I'm aware that it is the reporting, In my case when the apneas increase when I sleep on my back, I have been assuming they are OSAs. I'm hoping that tweaking the pressure a bit will stop some of the apneas which occur when I sleep on my back. Maybe my physiology has changed somewhat over the past three years. Who knows? This might allow me to alternate occasionally and sleep on my back and give my shoulders some relief.

I noticed that for many months starting around August, 2010, the average pressure was consistently 7.2. At some point in time, it started showing 7.0, not always but a good many times. I'd like to know what could cause a need for less pressure, if there is. Or, is the machine malfunctioning. The RT at my DME checked the pressure and it appeared to be OK.

Thanks,
Oldern

Edited out comment about whether OSA or CSA

[Oldern]

Oldern, when you do sleep, is it deep or light and restless?

I move very little and I would say overall, fairly deep and not restless.
Oldern

[Oldern]

Hi - if possible, you could use someone there to tell you if your naps are in fact 'naps' or just relaxation - the older we get the more common it is to catnap, and if you do it enough, without your machine, you could be setting your therapy back.

I would describe most of the naps (10-15 Minutes in length) as consisting of deep, deep yawns for several minutes. I have guessed often that I don't always go to sleep because I seem to be aware of sounds. But this period is often no more than a couple, three or four minutes at most.

But for the most part, they are definitely naps, demanding naps I might add. Again, not much change over a long period of years, I would say. Even though I have been retired for several years, it is still definitely a battle to stay awake more than 3/4ths of the day.
Oldern

[Oldern]

My machine VPAP Adapt SV (Enhanced) doesn't distinguish between CSA and OSA.

Adaptive Servo-Ventilation machine like yours absolutely distinguish between central and obstructive apneas.

They treat obstructive events with pressure similarly to the way an ordinary bilevel machine does. But
when a central event occurs, they increase pressure swiftly to stimulate breathing.

ASVs are complicated to properly set up. You really need an expert to get things right.

Oldern
No changes whatsoever in almost three years, and any changes will be with Doc's approval-at least for the foreseeable future. Like I have questioned several times here in multiple posts, I'm curious why my Doctor ok'd an increase in EPAP from 5 to 10. I thought the max PS would have been increased from 10 to 15. (Any change will be in small amounts) Settings are: EEP 5; IPAP Min pressure of 5 and IPAP maximum pressure 10.

[Oldern]

I'm guessing you've probably already been asked this but I figured I'd bring it up anyway so feel free to ignore it if it's an annoying comment.

But have you tried every way possible to sleep on your sides?


But I find that whenever I sleep on my back, my apneas get significantly worse and . . . .

From your comments it seems that the choice is between shoulder pain or good CPAP therapy. Maybe you're making the wrong choice?

Oldern

I'm going through this process to see if tweaking the pressure will lessen the Apneas , sleeping supinely. Since my best results were obtained sleeping non-supine, I told the Doctor at the end of my sleep study that I would (and could) sleep on my sides. However, the pains in the shoulders and a numbness in the arms and wrists are becoming a problem.

But, if push comes to shove, I'll take the therapy. Plus, I have the excessive daytime sleepies pretty bad and want to see if better and longer sleep can be obtained and, if so, at what price. Things can change over 3 years, so I guess this "stuff" has to be constantly monitored.

Thanks
Oldern

[avi123]

With all due respect …

This is a very strange thread.

The discussion seems to be broken up into two different threads,both open and being added to with comments, this one and another one at:

viewtopic/t80568/viewtopic.php?f=1&t=90 ... 01#p828601

called Tweaking pressure to fight OSA when sleeping supine

You are discussing questioning your settings and your Rx in both threads with no resolution.

This thread jumps 10 months with little or no indication as to what was happening.

I have tried to jump back and forth to try to figure out what exactly is going on, and nowhere do I see what your - Oldern's - AHI is, unless I have missed it inadvertently while jumping around. All I see is one hour of apneas from a month ago even though your concerns cover a period of more than a year.

I understand that you are having daytime sleepiness and your doctor would like you to avoid sleeping on your back but it is painful to sleep on your side(s). But I haven't been able to ferret out the extent or quality of your received therapy. Maybe I've missed it. Your numbers are from ten (10) months ago.

Can you give us a few screen shots of your Statistics page(s) over this period of time in either ResScan or SleepyHead?

What is your most recent AHI; your last 7 days average; last 30 days,last 6 months, etc.??? Ditto for how many hours of sleep you are getting on the machine?

Best wishes, Nate

Nate, I agree with you that Oldern has not shown any data of his machine sleep treatment such as Stats or Graphs and keep complaining about shoulders pain without going to orthopedic docs to find out about it.

add: I see Oldern's data on another thread here:

viewtopic.php?f=1&t=90146&st=0&sk=t&sd=a

[Somnolence]

Hi Oldern,

I only skimmed this topic and apologize for potentially missing any details I'm about to go over.

1. Have you looked into CO2 Re-breathing? It's a treatment approach that modifies traditional CPAP circuits to include lengths of deadspace which allow you to re-breathe some of your exhaled air. You might consider exploring that route before considering any surgery.

2. What's going on with your sleep-disordered breathing? How are you doing on ASV? Assuming this isn't going well, I urge you to revisit my first suggestion. ASV treatment is the end of the traditional road for Complex Sleep Apnea treatment. Mechanical ventilation and/or addition of O2 might be more common modalities than CO2 re-breathing. That does not make them more appropriate, however.

3. Here's some tough love advice. Forget about acclimating to sleeping on your back. If your apnea is like mine, your obstructive events will jump through the roof. Attempting to chase those events with higher pressures will only yield more respiratory instability (see 1). The instability will translate to more arousals, clinical and sub-clinical per the AASM. These arousals can undermine your body's efforts to get restorative sleep.

4. An inability to get restorative sleep can exacerbate other pain issues. If you're absolutely convinced your shoulder problems stem from sleeping on your side, you may be better served by investing in a new/better mattress.

[Oldern]

I'm guessing you've probably already been asked this but I figured I'd bring it up anyway so feel free to ignore it if it's an annoying comment.

But have you tried every way possible to sleep on your sides?
I'm guessing you are asking have I tried to lessen the pain by trying different ways of side-sleeping. I would love to find a way to side-sleep w/o the shoulder pain-carpal-tunnel surgery both wrists, ulnar nerve transposition, left elbow-may mean no way to side sleep comfortably. (I don't have any difficulty going to sleep and staying asleep on my side but I think this aggravates the pain in my shoulder. My GP is recommending I see an orthopedist who works a lot on shoulder problems)

I only mention it because I suffer from a similar issue with the shoulder. I'm not sure it's because I sleep on my sides or because of something else but my left shoulder is constantly painful as if a nerve is being pinched. When I walk for long periods of time, the entire arm goes numb. Various doctors have said it's various things but none seem to have figured it out 'cause it's still affecting me even after seven years since I started noticing it.

But I find that whenever I sleep on my back, my apneas get significantly worse and I find breathing with the CPAP significantly harder. Often when I wake up due to the CPAP therapy, it's because I've turned on my back in my sleep and the mask (pillows) are leaking and I'm getting a face full of air and I've gone back to mouth-breathing, ie. choking and suffocating. Readjusting the mask, pressing the ramp button, and going back to my side and I generally am able to get back to sleep again and continue therapy.

From your comments it seems that the choice is between shoulder pain or good CPAP therapy. Maybe you're making the wrong choice?

I asked the doctor to tweak the pressure in the hopes that something may have changed in my physiology in the past 2.5 years-long shot, I realize. But if I were able to sleep satisfactorily some on my back, that ought to improve my overall sleep and time in therapy

Oldern

[Oldern]

With all due respect …

This is a very strange thread.

The discussion seems to be broken up into two different threads,both open and being added to with comments, this one and another one at:

viewtopic/t80568/viewtopic.php?f=1&t=90 ... 01#p828601

called Tweaking pressure to fight OSA when sleeping supine

You are discussing questioning your settings and your Rx in both threads with no resolution.
I apologize for all the confusion. Let me try to simplify. I included a good bit of data in my first post here 8/12. Since then, leaks improved with Pad A Cheek Anti-leak strap. Very long term (all my life) Excessive Daytime Somnolence continues requiring naps. I asked doctor about changing pressures to see if that might allow me to sleep on my back some because of pain in my shoulders which I think are aggravated by side-sleeping. I figured this would maintain therapy quality while giving me some relief from the shoulder pain. He agrees. I questioned the folks here about his orders to increase EPAP rather than increase Max PS and Max IPAP. Nate addressed that by reciting what he did in a good and adequate manner with his details. One graph I provided to simply show the apneas increased dramatically when I went to sleep on my back caused some confusion.

This thread jumps 10 months with little or no indication as to what was happening.

I have tried to jump back and forth to try to figure out what exactly is going on, and nowhere do I see what your - Oldern's - AHI is, unless I have missed it inadvertently while jumping around. All I see is one hour of apneas from a month ago even though your concerns cover a period of more than a year.

Actually not much difference. Leaks actually better after Anti-leak strap. I simply don't get enough sleep. That's why the reference to EDS was posted.

I understand that you are having daytime sleepiness and your doctor would like you to avoid sleeping on your back but it is painful to sleep on your side(s). But I haven't been able to ferret out the extent or quality of your received therapy. Maybe I've missed it. Your numbers are from ten (10) months ago.
Actually, I'm asking the doctor to ok to change the settings some which may (hopefully) allow me to sleep on my back some. And he has agreed.

Can you give us a few screen shots of your Statistics page(s) over this period of time in either ResScan or SleepyHead?
I will get these posted as soon as I can.

What is your most recent AHI; your last 7 days average; last 30 days,last 6 months, etc.??? Ditto for how many hours of sleep you are getting on the machine?
7days: AHI 5.3, Sleep 5.28hr; 30 days: AHI 3.4, Sleep 4.46hr; 6 mos: AHI 1.6, Sleep 5:49hr
Best wishes, Nate

Nate, I agree with you that Oldern has not shown any data of his machine sleep treatment such as Stats or Graphs and keep complaining about shoulders pain without going to orthopedic docs to find out about it.
Sorry. carpal tunnel surgery both wrists, ulnar nerve transposition, left elbow. My sleep doctor, a neurologist, did all the nerve conduction tests in connection with the surgeries a couple of years ago. My GP has suggested I see an orthopedic doc and he is arranging a appointment. (As an aside, he is closing his office next month and joining a hospital and will no longer be available as a GP. My Urologist, who was tracking Prostate Cancer, in remission, is no longer available. Thanks to our new Healthcare System.)

add: I see Oldern's data on another thread here:

viewtopic.php?f=1&t=90146&st=0&sk=t&sd=a

Edited

[Somnolence]

I asked the doctor to tweak the pressure in the hopes that something may have changed in my physiology in the past 2.5 years-long shot, I realize. But if I were able to sleep satisfactorily some on my back, that ought to improve my overall sleep and time in therapy

No. Please do yourself a favor and go do more research into this hypothesis.

You would be well-served to read my post and take it to heart.

[Oldern]

I asked the doctor to tweak the pressure in the hopes that something may have changed in my physiology in the past 2.5 years-long shot, I realize. But if I were able to sleep satisfactorily some on my back, that ought to improve my overall sleep and time in therapy

No. Please do yourself a favor and go do more research into this hypothesis.

You would be well-served to read my post and take it to heart.

Will you explain why you say this. Tell me which post you are referring to and I certainly will reread it. I'm looking for possible solutions, not absolutes. Are you saying this is just a waste of time. Sorry, my bad. I was going to go back and read your post. And I will read it carefully. Just haven't had time yet.
Thanks.

Oldern

[Somnolence]

My post immediately preceded yours, the one which I quoted a piece from. I interpreted your adherence to the hypothesis and lack of acknowledgement as though you disregarded my post.

As for absolutes, there are few when it comes to health. However, I know that my own symptoms of nerve damage are resolving since beginning my EERS treatment.

[Oldern]

Hi Oldern,

I only skimmed this topic and apologize for potentially missing any details I'm about to go over.

1. Have you looked into CO2 Re-breathing? It's a treatment approach that modifies traditional CPAP circuits to include lengths of deadspace which allow you to re-breathe some of your exhaled air. You might consider exploring that route before considering any surgery.
I have read something about it over the past three years but not in terms of applying it to my situation. I will revisit the topic.

2. What's going on with your sleep-disordered breathing? How are you doing on ASV? Assuming this isn't going well, I urge you to revisit my first suggestion. ASV treatment is the end of the traditional road for Complex Sleep Apnea treatment. Mechanical ventilation and/or addition of O2 might be more common modalities than CO2 re-breathing. That does not make them more appropriate, however.
How am I doing? This is a tough question. I believe being able to take deep satisfying breathes throughout the night when I wake up is wonderful. I keep looking for corroborating evidence that I am sleeping better, that I feel better. I'm not sure I see any. My early waking hours are good. I can concentrate better. But unfortunately, like right now, I am desperate to get a short nap-five to ten minutes maybe 15. I believe if I could increase good sleep time another hour per night, about 15%, that would make a huge difference. But most of the time, I'll wakeup between 3 and 6:00am and can't go back to sleep.

3. Here's some tough love advice. Forget about acclimating to sleeping on your back. If your apnea is like mine, your obstructive events will jump through the roof. Attempting to chase those events with higher pressures will only yield more respiratory instability (see 1). The instability will translate to more arousals, clinical and sub-clinical per the AASM. These arousals can undermine your body's efforts to get restorative sleep.
I am not trying for acclimating to sleeping on my back. I can sleep on my back at the drop of a hat. But the apneas come back. I guess I was hoping for an outside chance that my body may have changed or that the last sleep study didn't completely rule out sleeping supine. There was a lot going on that night and it could have been that the slice of time on which they based their interpretations about the settings allowed for some leeway.


4. An inability to get restorative sleep can exacerbate other pain issues. If you're absolutely convinced your shoulder problems stem from sleeping on your side, you may be better served by investing in a new/better mattress. I don't think the lateral sleeping bothered my shoulders in the beginning. But the pain seems more pronounced now-well actually not pain but a numbness that doesn't seem to go away. I would hate to see it continue to deteriorate.

Oldern

[NateS]

4. An inability to get restorative sleep can exacerbate other pain issues. If you're absolutely convinced your shoulder problems stem from sleeping on your side, you may be better served by investing in a new/better mattress. I don't think the lateral sleeping bothered my shoulders in the beginning. But the pain seems more pronounced now-well actually not pain but a numbness that doesn't seem to go away. I would hate to see it continue to deteriorate.

Oldern

Oldhern, I tried sleeping on my sides and I can't tolerate it for more than 10-15 minutes. Like you, I love to sleep on my back and I do it 95% of the night, yet as you will note below with VPAP Adapt treatment and a new iComfort Genius mattress my AHI has gone down from 62.6 to between 0 to 1.3!

So Somnolence may well be on to something with regard to getting a new mattress.

I have significant spine damage and upper leg muscle damage which hurts like hell during various parts of the day, but when I lay down on my back on our mattress I am pain-free and sleep like a baby with the VPAP and my mask on. When I try to sleep on my left or right sides, I thrash around because it is so uncomfortable for me, and my AHI goes up. And then is when I lose sleep and get spells of sleepiness during the day. I note that your 6 month average AHI is/was much better than your current AHI, so the advice to not sleep on your back may be a case of "the cure being worse than the disease"

You might consider this.

Best wishes, Nate