CPAPtalk.com

Posted: **Fri Dec 09, 2022 5:55 pm**

Hey all!

First, thank you for all that you do. I've lurked on these boards for years and have always been highly appreciative of the work that you do seeing as so many of us are out on our own when it comes to dealing with OSA and CSA.

That said - it's my time to ask for help. I'll try to be concise as can be on my side... But it's been years so it's a lot.

My current equipment profile: Phillips Dreamstation (refurbished from recall) w/ rotating array of masks. Graphs from last night were using dreamwear nasal pillows. I always use a chin strap and mouthguard for bruxism when I sleep as well.

Current settings: APAP mode 9 - 14

I also have a Resmed Airsense 10 I bought during the recall. (I have never been a fan)

Primary Complaint

Excessive daytime sleepiness. Muscle fatigue with exertion. Frequent arousals; occasional periodic insominia episodes. (I actually feel more groggy if I sleep through the night; ironically)

I am fully compliant and never sleep w/o my machine. It provides some relief compared to how awful I feel w/o it; but the daytime sleepiness has NEVER abated.

The situation:

F, 39 years old, 5;7"; approx 158 lbs. Relatively active.

Family history of OSA. Was well aware I had developed apnea; after a 9 month wait was able to get a sleep study done in house. (Happy to post those results if requested) Had turbinate reduction and sinus surgery completed while waiting for sleep study. My (significantly overweight) brother successfully treats his OSA w/ CPAP therapy.

Diagnosis was that my apnea was mild; but it should be noted my symptoms NEVER WERE MILD. They gave me a 4 - 20 APAP setting and told me it would take 9 months or a year to get back in to do a titration study.

The pandemic happened; further delaying things. I noticed I would constantly wake up choking and never getting into deep sleep so I began experimenting w/ settings.

It's now been three years, i moved states; went through several insurance companies; two sleep doctors; and am waiting to get a titration study done in lab.

Over the years I have tried extremely high settings (gave me headaches); I tried extremely low variance in APAP settings (sort of helped w/ the frequent arousals; but never with the unrefreshing sleep or chronic daytime tiredness) B Vitamin Shots; Mondafanil; Adderall; Every kind of mask; blood tests galore; heavy metal detoxes; LDN; treating my insulin resistance; etc.

There is very little that I haven't tried in an effort to solve the problem.

Unfortunately I live in areas that have poor access to care. Generally the Doctor's will see a low AHI and say that I'm fine. While I can fully admit that there might be other health problems at work that aren't showing up in labs; I KNOW the poor settings have something to do with this. It's an extremely frustrating situation as my quality of life continues to slip away. If anyone can read these results and give me any insights whatsoever, I would be very appreciative.

Any information helps - especially when it comes to inept sleep doctors and technicians!

If you need addl graphs or info please let me know.

Posted: **Fri Dec 09, 2022 6:06 pm**

Where is last night's report?

Do you take any medications of any kind? If so, what?
Any other physical or mental health issues going on?

What are your primary complaints that you wish were resolved?

Posted: **Fri Dec 09, 2022 6:19 pm**

Aye, I'm getting error messages when I try to attach to the board. Hosting it on imgur instead.

https://imgur.com/paxVGvr

I take low dose adderall and nalextrone around 6:30 AM. Both of those are recent additions. (Problem has been going on for years)

No other major medical issues. I do have an old back injury that prevents me from side sleeping. Back sleeper only.

Primary complaint is the constant daytime tiredness. It always feels like the apnea is half treated if that makes sense. It's a constant struggle to make it through the day; I spend more time in bed than should be necessary. (9-10 hours on occasion) It is affecting my personally, socially, and professionally

I occasionally nap during the day for 20-40 minutes; which will somewhat help.

Posted: **Fri Dec 09, 2022 6:39 pm**

Your report from last night is really not all that remarkable but I do see 2...maybe 3...breaks in therapy where you woke up and turned the machine off briefly.

How's your general overall sleep quality??? Do you have multiple wake ups most nights?

I don't think the lack of an official titration study is the cause of your problem or in other words I don't know that a titration sleep study would work a miracle and alleviate your unwanted symptoms.

I think that maybe your report from last night would be a good one to use Sleephq on so we can zoom in on the flow rate and check out arousals and the few flagged events we see.
Sleephq is interactive....you post a link to the report and then we can zoom in closer.
Just do the free version. Don't do the paid for versions.
https://www.sleephq.com/memberships/

Posted: **Fri Dec 09, 2022 9:30 pm**

I don’t understand. That’s an odd looking pressure chart, zero large leak chart showing high levels of leaks (am I seeing that correctly? newbie me may be way off base), minimum pressure setting (bottom left) says 9.5 but elsewhere 9.

weird

Posted: **Fri Dec 09, 2022 9:41 pm**

lynninnj wrote: ↑
Fri Dec 09, 2022 9:30 pm
I don’t understand. That’s an odd looking pressure chart, zero large leak chart showing high levels of leaks (am I seeing that correctly? newbie me may be way off base), minimum pressure setting (bottom left) says 9.5 but elsewhere 9.

weird

That is how the Respironics algorithm works. It raises the pressure by 1.5cm to see if that helps you and if it does not then returns to where it was previously.

Posted: **Fri Dec 09, 2022 9:43 pm**

lynninnj wrote: ↑
Fri Dec 09, 2022 9:30 pm
I don’t understand. That’s an odd looking pressure chart, zero large leak chart showing high levels of leaks (am I seeing that correctly? newbie me may be way off base), minimum pressure setting (bottom left) says 9.5 but elsewhere 9.

weird

It's a Respironics machine leak report and Respironics machines report leaks differently than your ResMed machine.
There are NO large leaks happening here despite the looks of the leak graph. If those increases in leak line were large enough to hit large leak territory it would be flagged as such. Large leak territory for this machine at these pressures is probably up around 100 L/min or so.
I know it looks weird but for this Respironics machine it's not showing massive leaking. It shows maybe 3 times where there is a bigger leak but it still wasn't enough to trigger the large leak flag.

Top leak line includes the intentional leak that all masks have along with any excess leak.
The bottom leak line probably is most like excess leak only that you see on your ResMed machine. It's not exact but real close.

So it looks ugly compared to your ResMed leak graph but for a Respironics machine it is quite normal.

As for the pressure discrepancy....looks like the OP started out with a minimum of 9.5 and then changed to the 9.0 not long after going to bed. No big deal.

The little spikey 1.5 cm increases are the normal pressure probes that Respironics machines do.

Posted: **Fri Dec 09, 2022 9:48 pm**

Thanks pugsy. Boy- I guess I have gotten so used to the resmed views. learning a lot here.

Posted: **Fri Dec 09, 2022 9:58 pm**

lynninnj wrote: ↑
Fri Dec 09, 2022 9:48 pm
Thanks pugsy. Boy- I guess I have gotten so used to the resmed views. learning a lot here.

Actually the ResMed machine is the only one that reports excess leak only.
All the other brands report total leak which is the vent rate plus any excess leaks.
Or at least I have never seen another brand show excess leak only like ResMed does.
The pressure probes are normal and if someone zooms in on them they really aren't as rapid of an increase as the chart makes it out to be.
For a Respironics report....not hugely exciting despite the weird appearance and its really only weird when compared to the ResMed reports.
All the other brands will tell you that the ResMed is the odd man out.

Posted: **Sat Dec 10, 2022 7:17 am**

Pugsy wrote: ↑
Fri Dec 09, 2022 6:39 pm
Your report from last night is really not all that remarkable but I do see 2...maybe 3...breaks in therapy where you woke up and turned the machine off briefly.

How's your general overall sleep quality??? Do you have multiple wake ups most nights?

I don't think the lack of an official titration study is the cause of your problem or in other words I don't know that a titration sleep study would work a miracle and alleviate your unwanted symptoms.

I think that maybe your report from last night would be a good one to use Sleephq on so we can zoom in on the flow rate and check out arousals and the few flagged events we see.
Sleephq is interactive....you post a link to the report and then we can zoom in closer.
Just do the free version. Don't do the paid for versions.
https://www.sleephq.com/memberships/

Hey thanks all for replying.

I'm in the process of trying to upload to Sleep HQ - It's in a processing loop with my data and keeps resetting. I'll keep trying to work with it so I can post those results.

To answer the questions - sleep quality is moderate. I rarely get into "deep sleep" stages and I typically have several arousals. I almost always wake up 1 - 2 hours after falling asleep. Sometimes I can fall right back asleep afterwards; sometimes not.

More alarmingly; when I am able to sleep completely throughout the night I am MORE tired throughout the day than normal.

Honestly, I am / was hoping that a titration study might indicate I need a different machine (ASV? Bi-Pap) or SOMETHING that would help seeing as I have tried to address this issue from every angle.

EDIT: I think I got it now:

https://sleephq.com/public/ebb55f6d-5ab ... dc03f05ae4

https://sleephq.com/public/092396e6-7fd ... 69945cfac6

Posted: **Sat Dec 10, 2022 8:10 am**

How long have you been taking the Adderall and Nalextrone?

Now I realize that your fatigue issues predate the meds but they do affect sleep and have some unwanted side effects so while we most likely can't blame 100% of the problem on the side effects they probably are affecting sleep quality.

The half life for nalextrone is between 4 and 13 hours and we have no way to know which you are....
The half life for adderall is 9 to 14 hours and again we have no way to know which you are.

at 13/14 hours half life it means quite a bit of the drug is still in the system at bedtime even with taking the drug first thing in the morning.
Both come with unwanted baggage. Now I do realize why you were given the adderall and maybe sort of have an idea why you were given nalextrone.....send me a private message if you don't want to go public about the nalestrone but maybe they offered it for chronic fatigue which I see is sometimes offered.
Did you know that a well known side effect to nalextrone is indeed fatigue??? It can cause the very thing it is sometimes given to help try to reduce.

I haven't had time to research what effects on sleep quality itself might be with the 2 meds but adderall is legalized speed and for sure it messes with sleep quality.

Lillypie345 wrote: ↑
Sat Dec 10, 2022 7:17 am
To answer the questions - sleep quality is moderate. I rarely get into "deep sleep" stages and I typically have several arousals. I almost always wake up 1 - 2 hours after falling asleep. Sometimes I can fall right back asleep afterwards; sometimes not.

It is normal to wake up after a completion of a REM sleep stage cycle. Usually we cycle through the sleep stages at approx 90 minutes of sleep so maybe part of your arousals/awakenings are end of REM arousals. Normally we don't wake up long enough to form a memory of the wake up but maybe you are just waking up more completely.

Lillypie345 wrote: ↑
Sat Dec 10, 2022 7:17 am
More alarmingly; when I am able to sleep completely throughout the night I am MORE tired throughout the day than normal.

Obviously this defies logic initially but people need to realize that when it comes to sleep it's more about quality than it is about quantity.
Plus when people sleep a large number of hours (say more than 9) feeling worse the next day is quite common. I will be honest....that complaint is something I haven't looked into any reasons as to why we feel worse because I haven't experienced that myself.
I can't stay in bed that long myself....pain prevents it.

Lillypie345 wrote: ↑
Sat Dec 10, 2022 7:17 am
Honestly, I am / was hoping that a titration study might indicate I need a different machine (ASV? Bi-Pap) or SOMETHING that would help seeing as I have tried to address this issue from every angle.

From what is shown on the report you shared above.....I see nothing that would point to ASV being a viable option or needed.
Typically ASV is for central apnea issues but it can also treat obstructive apneas. It will do a good job fighting obstructive apnea only problems but the insurance companies simply won't pay for that high dollar machine just to treat obstructive apneas. They won't pay the money because cpap/apap is a less expensive option and for most people it does a very satisfactory job.
I certainly understand your desire to try it or something else though because you need relief from the fatigue.
And I do understand fatigue.....sometimes it is simply bone crushing fatigue and we just desperately want to be rid of that fatigue.
I have personal experience with that sort of fatigue myself so I feel your pain. While I know why I sometimes have such fatigue.....it's not always an easy fix even when we know what the problem is.
You don't even know for sure what the problem is. Would ASV help you???? In all honesty I don't know but I have my doubts because it's not the miracle machine a lot of people think it is when it comes to airway issues that aren't central in nature. I know a few doctors want to treat other issues with ASV (Dr Krakow for one) but they are outliers and the rest of the profession don't agree with him and that includes insurance companies who pay for these machines.

I will assume that you have already had a detailed work up trying to find the cause of your fatigue......the usual labs which include thyroid function tests....but did they also do vitamin D levels as well as hormone levels???
There is a mile long list of causes for fatigue out there and sleep apnea is but one item in that very long list.
There is also a mile long list of causes for crappy sleep quality and sleep apnea is but one item on that list as well.

Are they thinking maybe chronic fatigue as a possibility? Have you tried any other meds and got no relief so you discontinued them?

Lillypie345 wrote: ↑
Fri Dec 09, 2022 5:55 pm
was able to get a sleep study done in house. (Happy to post those results if requested)

Yes please....maybe it will give us a clue somewhere....interested especially in the number of arousals...both airway related and spontaneous.

More thoughts later as they come to me. I will be brutally honest here.....I don't think the magic fix you desire can be found with a little machine setting tweaking or even a different machine. Doesn't mean we won't try though but it's really hard to try ASV due to cost ....plus ASV machines are little beasts that aren't always so easy to sleep with how they go about doing their jobs anyway.
I hope I am wrong though. Nothing would make me happier than being wrong here.

Posted: **Sat Dec 10, 2022 8:32 am**

Pugsy wrote: ↑
Sat Dec 10, 2022 8:10 am
How long have you been taking the Adderall and Nalextrone?

Now I realize that your fatigue issues predate the meds but they do affect sleep and have some unwanted side effects so while we most likely can't blame 100% of the problem on the side effects they probably are affecting sleep quality.

The half life for nalextrone is between 4 and 13 hours and we have no way to know which you are....
The half life for adderall is 9 to 14 hours and again we have no way to know which you are.

at 13/14 hours half life it means quite a bit of the drug is still in the system at bedtime even with taking the drug first thing in the morning.
Both come with unwanted baggage. Now I do realize why you were given the adderall and maybe sort of have an idea why you were given nalextrone.....send me a private message if you don't want to go public about the nalestrone but maybe they offered it for chronic fatigue which I see is sometimes offered.
Did you know that a well known side effect to nalextrone is indeed fatigue??? It can cause the very thing it is sometimes given to help try to reduce.

I haven't had time to research what effects on sleep quality itself might be with the 2 meds but adderall is legalized speed and for sure it messes with sleep quality.

Lillypie345 wrote: ↑
Sat Dec 10, 2022 7:17 am
To answer the questions - sleep quality is moderate. I rarely get into "deep sleep" stages and I typically have several arousals. I almost always wake up 1 - 2 hours after falling asleep. Sometimes I can fall right back asleep afterwards; sometimes not.
It is normal to wake up after a completion of a REM sleep stage cycle. Usually we cycle through the sleep stages at approx 90 minutes of sleep so maybe part of your arousals/awakenings are end of REM arousals. Normally we don't wake up long enough to form a memory of the wake up but maybe you are just waking up more completely.

Lillypie345 wrote: ↑
Sat Dec 10, 2022 7:17 am
More alarmingly; when I am able to sleep completely throughout the night I am MORE tired throughout the day than normal.
Obviously this defies logic initially but people need to realize that when it comes to sleep it's more about quality than it is about quantity.
Plus when people sleep a large number of hours (say more than 9) feeling worse the next day is quite common. I will be honest....that complaint is something I haven't looked into any reasons as to why we feel worse because I haven't experienced that myself.
I can't stay in bed that long myself....pain prevents it.

Lillypie345 wrote: ↑
Sat Dec 10, 2022 7:17 am
Honestly, I am / was hoping that a titration study might indicate I need a different machine (ASV? Bi-Pap) or SOMETHING that would help seeing as I have tried to address this issue from every angle.
From what is shown on the report you shared above.....I see nothing that would point to ASV being a viable option or needed.
Typically ASV is for central apnea issues but it can also treat obstructive apneas. It will do a good job fighting obstructive apnea only problems but the insurance companies simply won't pay for that high dollar machine just to treat obstructive apneas. They won't pay the money because cpap/apap is a less expensive option and for most people it does a very satisfactory job.
I certainly understand your desire to try it or something else though because you need relief from the fatigue.
And I do understand fatigue.....sometimes it is simply bone crushing fatigue and we just desperately want to be rid of that fatigue.
I have personal experience with that sort of fatigue myself so I feel your pain. While I know why I sometimes have such fatigue.....it's not always an easy fix even when we know what the problem is.
You don't even know for sure what the problem is. Would ASV help you???? In all honesty I don't know but I have my doubts because it's not the miracle machine a lot of people think it is when it comes to airway issues that aren't central in nature. I know a few doctors want to treat other issues with ASV (Dr Krakow for one) but they are outliers and the rest of the profession don't agree with him and that includes insurance companies who pay for these machines.

I will assume that you have already had a detailed work up trying to find the cause of your fatigue......the usual labs which include thyroid function tests....but did they also do vitamin D levels as well as hormone levels???
There is a mile long list of causes for fatigue out there and sleep apnea is but one item in that very long list.
There is also a mile long list of causes for crappy sleep quality and sleep apnea is but one item on that list as well.

Are they thinking maybe chronic fatigue as a possibility? Have you tried any other meds and got no relief so you discontinued them?

Lillypie345 wrote: ↑
Fri Dec 09, 2022 5:55 pm
was able to get a sleep study done in house. (Happy to post those results if requested)
Yes please....maybe it will give us a clue somewhere....interested especially in the number of arousals...both airway related and spontaneous.

More thoughts later as they come to me. I will be brutally honest here.....I don't think the magic fix you desire can be found with a little machine setting tweaking or even a different machine. Doesn't mean we won't try though but it's really hard to try ASV due to cost ....plus ASV machines are little beasts that aren't always so easy to sleep with how they go about doing their jobs anyway.
I hope I am wrong though. Nothing would make me happier than being wrong here.

I appreciate your brutal honesty - it's what I came here for!

The adderall and nalextrone are recent additions - I began both within the last two months. (the issue itself has persisted for years) Low Dose Naltextrone can be prescribed off-label to assist w/ fatigue, pain, and sleep quality. (It appears to be hit or miss; I would say it has helped me 20% or so.) The idea is that nalextrone in small dosages will stimulate an endorphin dump in the brain. (as opposed to standard dosaging protocols; which DO increase fatigue as you mentioned!)

It's currently being researched for fibro / CFS / and MS patients. I'm on the fence and will probably give it a few more months to see how much it has hepled.

Basically; I'm beyond the point of natural intervention helping w/ the problem and turned to pharmaceuticals to help make it through the day.

I also tried mondafanil but alarmingly found it only was helpful for a day or two at a time and I stopped taking it.

I do believe CFS (chronic fatigue syndrome) might be at play here - I've explored all avenues because honestly; I don't really see the end result of that being a life worth living. (I've also done mold detox protocols; heavy metal detoxes ... You name it and I have tried it!)

My general hope is that a combination of things might alleviate or help the problem and give me quality of life back - tweak the meds; tweak the machine; etc etc.

Having this information verified on the board is very helpful - If is truly ISN'T a sleep machine problem; then I need to know so i can stop fixating on that and look at other potential solutions and alternatives.

I appreciate your thoughts and concern and for reading my responses so intently. I will post my original sleep study results shortly once i dig them out.

Posted: **Sat Dec 10, 2022 8:39 am**

Pugsy wrote: ↑
Sat Dec 10, 2022 8:10 am

It is normal to wake up after a completion of a REM sleep stage cycle. Usually we cycle through the sleep stages at approx 90 minutes of sleep so maybe part of your arousals/awakenings are end of REM arousals. Normally we don't wake up long enough to form a memory of the wake up but maybe you are just waking up more completely.

This is intriguing! The last sleep technician I spoke to said he thinks I might not be getting enough REM sleep; and that is why I continue to be symptomatic despite having a low score and a diagnosis of "mild sleep apnea."

Perhaps the low REM + arousals are part of the on going daytime fatigue... Especially if you consider that I am now 39 years old and the problem has persisted for nearly half of my life. (I've only been on CPAP for the last four years)

Very interesting just to know potential causes or implications; even if there is no "cure."

Thank you again!

Posted: **Sat Dec 10, 2022 8:42 am**

Pugsy wrote: ↑
Sat Dec 10, 2022 8:10 am

I will assume that you have already had a detailed work up trying to find the cause of your fatigue......the usual labs which include thyroid function tests....but did they also do vitamin D levels as well as hormone levels???
There is a mile long list of causes for fatigue out there and sleep apnea is but one item in that very long list.
There is also a mile long list of causes for crappy sleep quality and sleep apnea is but one item on that list as well.

Are they thinking maybe chronic fatigue as a possibility? Have you tried any other meds and got no relief so you discontinued them?

Yes, I say almost sadly I have had all the workups done and thyroid / hormone / vitamin levels are all within normal ranges at least by conventional medicine standards. Blood tests, cancer screenings; you freaking name it and I have had it done!

I recently started taking Vitamin B shots - my levels were low / normal so I thought I would try it... It's only been a week so way too soon to tell if there's been improvements.

Posted: **Sat Dec 10, 2022 8:48 am**

Keep trying with SleepHQ....I need to see the flow rate zoomed in a lot...if you can't get it to work there is another alternative but it involves your getting your entire SD card contents to me so I can plug it in to OSCAR and look at a lot more stuff than you could maybe try giving us screen shots. Way too many screen shots would be needed and way too much work for you.

If I tell you to zip/compress an entire SD card in one step....do you know how to do that? If not...I can explain in detail should we end up needing to do that.

Oh....you said you got a ResMed machine???? The AirSense 10....which model and what about it made you not a fan?
Do we have any OSCAR data from using that machine and when was it you last tried it?

Lillypie345 wrote: ↑
Sat Dec 10, 2022 8:32 am
If is truly ISN'T a sleep machine problem; then I need to know!

I have always said that to fix any problem (or have a snowball's chance in hell of fixing) we have to first identify the problem.
It's not always easy though to figure out the underlying root cause of a problem and sometimes even when we can identify the root cause we can't always do a good job fixing things. Been there and done that myself.

I might know of a source for you to get an older ASV (ResMed) to at least try though....used and I don't know how much it will cost to try it.
Are you willing to buy an older ASV yourself to try? Something to think about.

BTW....I have used an ASV myself and just for obstructive sleep apnea as I have never had a problem with centrals. So I do have experience with that model machine. I did it just for grins. Someone was selling one here on the forum and I got to try it because they let me make monthly payments on it. I was curious and just did it.

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