Minimal AHI ... Still DEAD Tired! - 10 years in.

[Pugsy]

How to improve the crap IS the question

I never said it was a question that had an easy answer. In fact it takes a lot of time and hard work and even then the rewards can be elusive.

But...what are the results if you don't at least try something?

I would suggest trying fixed cpap mode or if you really want apap mode then try a tiny range and just see if it helps or not.

When you have a chance can you post a recent detailed nightly report?
With these graphs
Events
Flow rate
Pressure
Leak
Flow limitation

And the SleepyHead statistics on the left with AHI and the event category breakdown.
new screen shot thread that is better with Imgur stuff viewtopic/t103468/Need-help-with-screen-shots.html
IMGUR instructions from Kelvin https://sleep.tnet.com/reference/tips/imgur
The above links tell you how and also there are some examples of how we like to see the graphs and which ones are the main graphs.

I am particularly interested in the flow limitation graph and the pressure graph but it's better to see those graphs with the other graphs for better reference.
Don't need the AHI graph or the mask pressure graph (you can turn those graphs off in Preferences/Graphs)

And I do understand how difficult it is to try to isolate a cause for poor sleep quality and then to fix it.
Flow limitations aren't part of the AHI and there's a chance that flow limitations play a factor in poor sleep quality so let's see what yours looks like.

[kaiasgram]

deadtiredcanadian -- What do your Flow Limitation numbers and graphs look like?

zoocrew makes a good point about the subtleties of sleep-disordered breathing, like events that last under 10 seconds but might still be affecting your sleep. Flow limitation and snore graphs might also contain some info for you to consider. And working to narrow your pressure range sounds like a good idea in case you are a sensitive sleeper whose sleep is disturbed by wide pressure swings -- you wouldn't necessarily be aware of or remember those kinds of disturbances.

On the "other sleep issues" front, it really does sound like a new sleep study is in order. You mentioned being on this therapy for almost 15 years -- how long ago was your last sleep study? If there's a question about PLMD, that alone would be a good enough reason to have a new study. Other things could be looked at too, like sleep stages (sleep efficiency) and what's going on during REM.

I had another thought and I'm not asking you to speak to this, but depression -- even mild depression -- can interfere with quality sleep. There have been studies documenting the atypical patterns associated with depression, including atypical REM characteristics. These kinds of problems can compromise sleep quality.

Edit: I see Pugsy was typing while I was typing -- looks like we're on the same page re the SleepyHead reports.

Edit 2: For as long as you've been using your machine, has there ever been a period of time where you recall feeling generally better?

[OceanBlue]

I'm not sure if this applies to you, but in my experience, being diagnosed with sleep apnea means (to doctors) that my fatigue must be related to sleep apnea. Before that, when I had depression, suddenly all my symptoms were caused by depression. They don't look into other issues because of the diagnosis. Meanwhile, after switching healthcare systems, I had several undiagnosed medical conditions that were causing my symptoms (severe OSA per my initiation of a sleep study, anemia, etc). They give the basic lab tests, and if those come out ok, symptoms are dismissed.

Glucose problems can cause fatigue-even if your fasting blood sugar is ok. Like someone else mentioned, fibromyalgia.

I'd get another sleep study at this point, and see if you are getting enough slow wave sleep. If you are, I'd ask your primary care doctor to look into other issues.

Best of luck to you.

(sorry if I sound jaded-the last few years of my life has been hell because of walking around for years with the missed diagnoses and getting worse because antidepressants were my only treatment before I was diagnosed-they can cause permanent damage as many raise your blood sugar and kill pancreatic cells after so long.)

[robysue]

deadtiredcanadian,

Piggybacking on what Kaisgram has said: It really does sound like you need to have another sleep study done. Clearly PLM needs to be checked out. Possibly some kind of REM disorder might also need to be checked out. It could be that you also are simply experiencing far too many spontaneous arousals---unfortunately there's not an easy fix for that problem.

My own guess is that your xPAP is indeed managing the OSA quite well. Your long term AHI numbers indicate that the PAP has been preventing the almost all of your sleep disordered breathing events for quite a long time, but as you say in your original post---you've never felt any better on PAP than before PAP. So I don't think there's been a recent change in your APAP data that would explain the on-going fatigue.

The fact that you are using your APAP wide open (4-20) does mean that it's possible that the pressure variations may be causing some spontaneous arousals. That's why several members have suggested either tightening the APAP range or trying straight CPAP for a week or two. Those are ideas that are worth trying. My guess is that you're not going to see much difference in the AHI data, but if pressure fluctuations are causing some spontaneous arousals, then less fluctuation may allow you to get better quality sleep.

Another thing that has not yet been suggested is keeping a sleep log for the purposes of gathering data on non-CPAP related aspects of your sleep. Sometimes the sleep log data can help you figure out the next step. What I'd suggest doing for a sleep log would be keeping track of the following things:

• Bedtime. (Can be written down or established from the SleepyHead data)
• Wake up time---as in when you get out of bed.
• Estimated time it took to get to sleep at the beginning of the night.
• Estimated number of wakes during the night
• Estimated total sleep time.
• Sleep efficiency = (Time in bed)/(total sleep time)
• Notes on how restless you remember being---i.e. how much did you toss and turn during the night? A lot more than you normally do? About the same as usual? Less than you normally do?
• Notes on any dreams you remember when you wake up in the morning.

It's important to understand that the estimated time it took you to get to sleep and the estimated total sleep time should be based on your mental impressions rather than staring at the clock and trying to remember actual numbers.

Keep a log for a couple of weeks to see if any patterns emerge. Patterns may help you and your doctor(s) figure out what the next step actually is.

[deadtiredcanadian]

When you have a chance can you post a recent detailed nightly report?
With these graphs
Events
Flow rate
Pressure
Leak
Flow limitation

I will upload this when I get access to my laptop, which is where I have the software

[deadtiredcanadian]

zoocrew makes a good point about the subtleties of sleep-disordered breathing, like events that last under 10 seconds but might still be affecting your sleep. Flow limitation and snore graphs might also contain some info for you to consider.

I don't want to declare victory so quickly, but I can tell you that after making the change of upping by bottom pressure from 4 to 6 last night, today I felt way more refreshed... I was still quite tired, but at least I didn't feel that a truck had ran over me like I feel most mornings. So here's hoping that it makes a difference. I will monitor what happens throughout the week but there's hope at the end of the tunnel.

On the "other sleep issues" front, it really does sound like a new sleep study is in order. You mentioned being on this therapy for almost 15 years -- how long ago was your last sleep study? If there's a question about PLMD, that alone would be a good enough reason to have a new study. Other things could be looked at too, like sleep stages (sleep efficiency) and what's going on during REM.

I guess I will have to bite the bullet on that one and just do it again. My first, last and only one was 15 years ago. Since then I have been pretty compliant with the therapy and have used the machine perhaps 90% of the time. I never really have felt like it has truly worked for me. Can I feel the difference when I don't use the machine? sure I can, i feel that much worse --- and yet with the machine I do not feel better. I guess I have accepted it as status quo or simply awaiting for that one time when I am going to be feeling better.

[quote[I had another thought and I'm not asking you to speak to this, but depression -- even mild depression -- can interfere with quality sleep. There have been studies documenting the atypical patterns associated with depression, including atypical REM characteristics. These kinds of problems can compromise sleep quality. [/quote]

Well, yes. I am extremely functional but it seems that my dopamine receptors are out of whack as few things actually give me a feeling of reward or satisfaction. On top of that, I've lived a life full of stress, which is why I have intense, vivid or dramatic dreams virtually every night. These seem to be beyond traditional therapy as I've spent tens thousands on it with multiple people and that hasn't helped.

Edit: I see Pugsy was typing while I was typing -- looks like we're on the same page re the SleepyHead reports.

Edit 2: For as long as you've been using your machine, has there ever been a period of time where you recall feeling generally better?[/quote]

[deadtiredcanadian]

Glucose problems can cause fatigue-even if your fasting blood sugar is ok. Like someone else mentioned, fibromyalgia.

I'd get another sleep study at this point, and see if you are getting enough slow wave sleep. If you are, I'd ask your primary care doctor to look into other issues.

(sorry if I sound jaded-the last few years of my life has been hell because of walking around for years with the missed diagnoses and getting worse because antidepressants were my only treatment before I was diagnosed-they can cause permanent damage as many raise your blood sugar and kill pancreatic cells after so long.)

I have basically seen the same things: most doctors dismissing the exhaustion and not seeking to investigate further. All of my blood work appears to be fine, year after year. I've asked for extensive testing and nothing has come explicit. I will go ahead and bring fibromyalgia and see what else I can be screened for.

Related to this, I have a very (very) hard time losing weight. I do high intensity exercise twice a week and have been on very restrictive diets and my weight loss rate is very slow. This has motivated me to seek further cures for my sleep as I am now realizing that as long as I have this severe sleep problem my body is going to be in ultra conservation mode making it extremely hard to lose weight.

[Guest]

Piggybacking on what Kaisgram has said: It really does sound like you need to have another sleep study done. Clearly PLM needs to be checked out. Possibly some kind of REM disorder might also need to be checked out. It could be that you also are simply experiencing far too many spontaneous arousals---unfortunately there's not an easy fix for that problem.

I appreciate everyone's suggestions and now I've made up my mind to do this again, as much as I loath the, we've all been there and it's worth further investigation. Thank you to everyone. I am keen on seeing what the outcomes would be around the restless leg or the REM disturbances and spontaneous arousals. The fact that I toss and turned like 1000 times on a given night and that I have the twitches and jerky movements "every 5 minutes" (per my wife) is an indication that something else is brewing there.

My own guess is that your xPAP is indeed managing the OSA quite well. Your long term AHI numbers indicate that the PAP has been preventing the almost all of your sleep disordered breathing events for quite a long time, but as you say in your original post---you've never felt any better on PAP than before PAP. So I don't think there's been a recent change in your APAP data that would explain the on-going fatigue.

That has been my conclusion as well

The fact that you are using your APAP wide open (4-20) does mean that it's possible that the pressure variations may be causing some spontaneous arousals. That's why several members have suggested either tightening the APAP range or trying straight CPAP for a week or two. Those are ideas that are worth trying. My guess is that you're not going to see much difference in the AHI data, but if pressure fluctuations are causing some spontaneous arousals, then less fluctuation may allow you to get better quality sleep.

Yes. Thank you I followed through. As described a few minutes ago, last night was the first time that I tried a tighter pressure and to my surprise I felt a very qualified "noticeable difference" --- meaning, I was still tired but didn't feel that a train has ran over me. I've actually noticed my mood being much better today and I am hoping this is a trend. I will continue to monitor throughout the week.

Another thing that has not yet been suggested is keeping a sleep log for the purposes of gathering data on non-CPAP related aspects of your sleep. Sometimes the sleep log data can help you figure out the next step. What I'd suggest doing for a sleep log would be keeping track of the following things:

• Bedtime. (Can be written down or established from the SleepyHead data)
• Wake up time---as in when you get out of bed.
• Estimated time it took to get to sleep at the beginning of the night.
• Estimated number of wakes during the night
• Estimated total sleep time.
• Sleep efficiency = (Time in bed)/(total sleep time)
• Notes on how restless you remember being---how much did you toss and turn during the night? A lot more than you normally do? About the same as usual? Less than you normally do?
• Notes on any dreams you remember when you wake up in the morning.

It's important to understand that the estimated time it took you to get to sleep and the estimated total sleep time should be based on your mental impressions rather than staring at the clock and trying to remember actual numbers.

Keep a log for a couple of weeks to see if any patterns emerge. Patterns may help you and your doctor(s) figure out what the next step actually is.

Another great suggestion. I Have kept a intense/vivid dream/nightmare log but what you suggest sounds like a much better detective work to figure out what's wrong. I will do it.

[Julie]

Couple of things - apnea is now believed to cause weight gain, not the other way around... but if your C/Apap is set up properly and you feel better, that should improve... maybe back off the high intensity exercise for a while in favor of just walking a lot, etc. for now (and watch your intake afterward because any exercise will make you hungry).

[kteague]

Since it has been so long since your last sleep study, I'm pretty sure most docs would require starting from scratch with a diagnostic study. I know I suggested not doing that as far as the limb movements are concerned, but in view of the time passed, I doubt you can (or even should) avoid it. Just don't want you to butt heads with your doctor at my suggestion, when a current diagnostic study is probably in your best interest as well as a requirement. Talk to your doctor about any possibility of not starting the titration over from the ground up. Not sure what's allowable there but those who do this for a living would know that. Good luck going forward.

[Enchanter]

This is why I'm worried. I hope you get better. I'm worried because if the CPAP doesn't work, do I have to wait another 10 years? What is causing him to be tired? Why doesn't he know?

[kaiasgram]

zoocrew makes a good point about the subtleties of sleep-disordered breathing, like events that last under 10 seconds but might still be affecting your sleep. Flow limitation and snore graphs might also contain some info for you to consider.

I don't want to declare victory so quickly, but I can tell you that after making the change of upping by bottom pressure from 4 to 6 last night, today I felt way more refreshed... I was still quite tired, but at least I didn't feel that a truck had ran over me like I feel most mornings. So here's hoping that it makes a difference. I will monitor what happens throughout the week but there's hope at the end of the tunnel.

This is good news. The increased pressure may be helping some of those more subtle breathing issues that are not reflected in the AHI but can make a difference in your sleep quality. It's great that you can feel some hope now.

On the "other sleep issues" front, it really does sound like a new sleep study is in order. You mentioned being on this therapy for almost 15 years -- how long ago was your last sleep study? If there's a question about PLMD, that alone would be a good enough reason to have a new study. Other things could be looked at too, like sleep stages (sleep efficiency) and what's going on during REM.

I guess I will have to bite the bullet on that one and just do it again. My first, last and only one was 15 years ago. Since then I have been pretty compliant with the therapy and have used the machine perhaps 90% of the time. I never really have felt like it has truly worked for me. Can I feel the difference when I don't use the machine? sure I can, i feel that much worse --- and yet with the machine I do not feel better. I guess I have accepted it as status quo or simply awaiting for that one time when I am going to be feeling better.

I agree with the wisdom of a new sleep study, especially after 15 years and unresolved questions about limb movements and REM issues.

[I had another thought and I'm not asking you to speak to this, but depression -- even mild depression -- can interfere with quality sleep. There have been studies documenting the atypical patterns associated with depression, including atypical REM characteristics. These kinds of problems can compromise sleep quality.

Well, yes. I am extremely functional but it seems that my dopamine receptors are out of whack as few things actually give me a feeling of reward or satisfaction. On top of that, I've lived a life full of stress, which is why I have intense, vivid or dramatic dreams virtually every night. These seem to be beyond traditional therapy as I've spent tens thousands on it with multiple people and that hasn't helped.

Ah yes, low grade depression can really do a number on us. It's a tough thing to treat, and unfortunately antidepressant medication can sometimes make those vivid stressful dreams worse. Sorry therapy hasn't been so helpful. I think that doing what you can to identify the sleep issues that can be worked on and improved is definitely worth it. Better sleep can help improve mood, even when mood issues are making good sleep a challenge. Kind of a feedback loop there.

I hope you'll join the forum and keep us posted. I've been on PAP for three years and my story is very similar to yours. Being in this discussion with you has been helpful for me (a reminder of the need to pay attention to all the influences on our sleep and health and not just sleep apnea/cpap), so thank you for that. Hopefully it will also help others who have not been lucky enough to experience miracles with cpap.

[deadtiredcanadian]

How to improve the crap IS the question

When you have a chance can you post a recent detailed nightly report?
With these graphs
Events
Flow rate
Pressure
Leak
Flow limitation

And the SleepyHead statistics on the left with AHI and the event category breakdown.
new screen shot thread that is better with Imgur stuff
IMGUR instructions from Kelvin
The above links tell you how and also there are some examples of how we like to see the graphs and which ones are the main graphs.

I am particularly interested in the flow limitation graph and the pressure graph but it's better to see those graphs with the other graphs for better reference.
Don't need the AHI graph or the mask pressure graph (you can turn those graphs off in Preferences/Graphs)

And I do understand how difficult it is to try to isolate a cause for poor sleep quality and then to fix it.
Flow limitations aren't part of the AHI and there's a chance that flow limitations play a factor in poor sleep quality so let's see what yours looks like.

As promised, I got the screenshots required:
imgur[dot]com/K26RHH2
imgur[dot]com/cLEnFGi
imgur[dot]com/GjzUrZM

[deadtiredcanadian]

Couple of things - apnea is now believed to cause weight gain, not the other way around... but if your C/Apap is set up properly and you feel better, that should improve... maybe back off the high intensity exercise for a while in favor of just walking a lot, etc. for now (and watch your intake afterward because any exercise will make you hungry).

It's a relief to know this. I've even gone as far as my own personal streak of 200 days in a row of exercise or completely eliminate carbs and my ability to loose weight is so stubborn. As I now look at still being dead tired after my sleep I am seeing causality there.

[deadtiredcanadian]

Since it has been so long since your last sleep study, I'm pretty sure most docs would require starting from scratch with a diagnostic study. I know I suggested not doing that as far as the limb movements are concerned, but in view of the time passed, I doubt you can (or even should) avoid it. Just don't want you to butt heads with your doctor at my suggestion, when a current diagnostic study is probably in your best interest as well as a requirement. Talk to your doctor about any possibility of not starting the titration over from the ground up. Not sure what's allowable there but those who do this for a living would know that. Good luck going forward.

Thank you, I really appreciate your suggestions