The sleep clinic went well, but can't replicate at home!

Hi All,

About a year ago I was diagnosed with Mild Sleep Apnea and prescribed a CPAP machine with Nasal Pillows. After a few weeks of failed nasal pillow use I, stupidly, gave up. It's now a year later and I recently underwent a full sleep study and, surprise surprise, I still have sleep apnea and in fact, it's gotten worse!

So after my sleep study I decided to give CPAP another shot and was prescribed a full mask (specifically a Resmed Airfit F-10 full face mask). This is used alongside my Resmed APAP machine which my physicians assistant configured on my behalf. I tried this setup for about 10 days and am disappointed to say I had very little luck and never awoke with the rested feeling I was hoping for.

In parallel to this my physician decided to send me on for a further 'titration' sleep study. This was performed two nights ago and...I had the best nights sleep ever! I only slept for around 5.5 hours but when I awoke I felt different. I was switched on, happy and tuned into life. I went about the day like a breeze and had one of the most productive days I'd had in years.

In the morning I begged the tech for details on my result and all he could remember, although he wasn't even sure of this, was that my pressure was set to roughly 9. He said I'd need to discuss the results and any further settings with my physician, however I unfortunately can't see him for a number of weeks.

As you can imagine I returned home last night desperate to achieve the result I'd managed at the sleep clinic. Looking at my APAP machine I stumbled across the results section for previous nights and was surprised to see the following:

Average Pressure: 9.2 (roughly matches the pressure identified by the tech. The machine is configured in 'Autoset Mode' with a minimum of 9 and maximum of 14)
AHI: 0.5 (a very good score)
Leakage: 4L/min (according to the Internet, not a bad score)

According to the above results I should be sleeping really well! Yet this morning, after sleeping 6.5 hours, I've awoken feeling tired and groggy again. Is there something I'm missing?! Is there something special they do in sleep clinics that I need to be doing? Might the level of humidity, or the EPR setting, the place where my CPAP sits whilst being used (currently under my bed, perhaps in taking dust), or something else be affecting my results in a way that the machine can't recognize?? One other difference was the mask - during my test they used a Resmed Mirage Quattro (the one with the green outline) which I felt gave a slightly better fit with slightly less leaks. However, given my relatively mild leak rate (according to the above results) it seems unlikely that his could so drastically affect my sleep quality.

I hope that my physician will have answers to some of the above, however I'm really desperate for some reassurance, and perhaps some insight, on why I can still feel so rough when my machine indicates that I should feel otherwise.

Thanks in advance for any help you can provide.

Robin,

Was the titration done at another place? Was there any difference in the machine you used for the titration.

Can you borrow the mask at home for a couple of days and see how you do on it with the machine you have at home. Sometimes a mask can make a difference.


Are you waking up at all during the night?

If the mask, machine and the settings are the same, start looking at the environment: bed, pillows, temperature of room etc.

Are you taking any meds of any kind even OTC? If so, what are they?
Do you find that you wake up very much during the night?

Those nice numbers from the machine (and yes those are really good numbers) don't guarantee that we will feel those good numbers. Getting good numbers is easy. Feeling them is a whole other story ...unfortunately.

Thanks for both of your notes.

The titration was done at the same place as my initial sleep study, however my initial sleep study was just for measuring the apnea and did not involve any therapy. The CPAP machine they used for the titration study was certainly very different to the one I have at home, my understanding is that it captures additional data beyond the typical consumer CPAP metrics. Does anyone know if they're better, or different in some way?!

For masks, my plan is to ask my physician for one of the Quattro masks when I see him in a few weeks time.

I typically wake up once during the night, usually around 2AM (I go to bed around 10PM), but I also woke up when I had the titration.

The only meds I take are Dymista nasal spray, twice a day, for allergies. I'm just about to start allergy drops which I hope will resolve this longer term.

I'll certainly have another look at my environment. We've recently bought a newer, more comfortable bed, I've taken steps to cool the room and have bought dust mite proof pillows for allergies, however there may be other things I need to do?

Very frustrating that good numbers don't necessarily lead to good sleep! Are there metrics that the machines don't capture, or are they perhaps miss-capturing the information? Any other insights or experiences that people can share would be greatly appreciated...I'm desperate to get some more of that magically deep sleep! Thanks.

Robin.lewis wrote:Hi All,

About a year ago I was diagnosed with Mild Sleep Apnea and prescribed a CPAP machine with Nasal Pillows. After a few weeks of failed nasal pillow use I, stupidly, gave up. It's now a year later and I recently underwent a full sleep study and, surprise surprise, I still have sleep apnea and in fact, it's gotten worse!

So after my sleep study I decided to give CPAP another shot and was prescribed a full mask (specifically a Resmed Airfit F-10 full face mask). This is used alongside my Resmed APAP machine which my physicians assistant configured on my behalf. I tried this setup for about 10 days and am disappointed to say I had very little luck and never awoke with the rested feeling I was hoping for.

In parallel to this my physician decided to send me on for a further 'titration' sleep study. This was performed two nights ago and...I had the best nights sleep ever! I only slept for around 5.5 hours but when I awoke I felt different. I was switched on, happy and tuned into life. I went about the day like a breeze and had one of the most productive days I'd had in years.

In the morning I begged the tech for details on my result and all he could remember, although he wasn't even sure of this, was that my pressure was set to roughly 9. He said I'd need to discuss the results and any further settings with my physician, however I unfortunately can't see him for a number of weeks.

As you can imagine I returned home last night desperate to achieve the result I'd managed at the sleep clinic. Looking at my APAP machine I stumbled across the results section for previous nights and was surprised to see the following:

Average Pressure: 9.2 (roughly matches the pressure identified by the tech. The machine is configured in 'Autoset Mode' with a minimum of 9 and maximum of 14)
AHI: 0.5 (a very good score)
Leakage: 4L/min (according to the Internet, not a bad score)

According to the above results I should be sleeping really well! Yet this morning, after sleeping 6.5 hours, I've awoken feeling tired and groggy again. Is there something I'm missing?! Is there something special they do in sleep clinics that I need to be doing? Might the level of humidity, or the EPR setting, the place where my CPAP sits whilst being used (currently under my bed, perhaps in taking dust), or something else be affecting my results in a way that the machine can't recognize?? One other difference was the mask - during my test they used a Resmed Mirage Quattro (the one with the green outline) which I felt gave a slightly better fit with slightly less leaks. However, given my relatively mild leak rate (according to the above results) it seems unlikely that his could so drastically affect my sleep quality.

I hope that my physician will have answers to some of the above, however I'm really desperate for some reassurance, and perhaps some insight, on why I can still feel so rough when my machine indicates that I should feel otherwise.

Thanks in advance for any help you can provide.

In my opinion, you're sabotaging your therapy by using a range of pressures (among other possibilities).
The sleep lab would NOT have used a range of pressures and came up with a fixed pressure of 9 cm.
You should be using software (like Sleepyhead) and seeing what your pressures are doing all night long.
If you're using EPR (exhale relief) with that ResMed machine, that would be dropping your "effective" therapy pressure on exhale by the number of your EPR setting. Your sleep lab would NOT have used exhale relief.
If your pressure is bouncing around all night long, it's probably keeping you from getting into or staying in the deeper and REM sleep stages. Your low AHI could be because you slept in lighter sleep stages much of the time.

Try setting your APAP to straight 9 cm. with no EPR and see how you feel.


Den

.

Robin.lewis wrote:Very frustrating that good numbers don't necessarily lead to good sleep! Are there metrics that the machines don't capture, or are they perhaps miss-capturing the information?

The machines don't know if we are asleep or not so they are limited in that way. They measure our breathing/air flow and that's how they come up with event flags or respond (if using auto adjusting pressure) based on what they are sensing is happening.

It's possible that the variations in pressure are causing micro arousals that we have no way to measure.
So you might consider doing what Den suggests and try a fixed pressure.
But if your minimum is 9 cm and your average is 9.2 then it may not be moving around all that much.
Worth trying though to see if it helps or not.

It may simply be that you need more hours of sleep too.

You might also get SleepyHead software (or ResScan) and see if anything stands out that might be a factor.
ResMed machines do a flow limitation graph that might be useful in your situation. Sometimes the AHI is nice and low and the leak is nice and low and the flow limitation graph is ugly...and it might be a potential culprit in not feeling the good numbers and it's something that can only be seen with software use.

http://sleepfiles.com/SH/index.html?TestingVersions

https://sleep.tnet.com/equipment

And, if you don't look at the software reports, you won't know. Get some software (like Sleepyhead) to see what's happening.

I can still remember how great I felt after my first (and only) sleep study back in March of 2005. I hadn't slept or felt that good in years.
Kind of like a drug. "Can you bottle that?" Nope, and that's why people supposedly get hooked on illegal "drugs"......they keep chasing the first "high" they experienced and can't replicate it no matter how long they keep trying. (at least that's what I've read and have no first-hand experience with those kinds of drugs)

Get and use the software.


Den

.

Thanks for the responses everyone.

So I'm going to push ahead with a fixed pressure of 9 tonight and disable the EPR. On top of that I'll look into obtaining the relevant software to track my progress. One potential limitation here is that I don't currently have a laptop! (I work in IT during the day so am sick of them by the time I'm home!). I've been thinking of buying one for a while though so I'll probably just pick up a cheap one down at BestBuy.

Until you can get a computer to use if you have some way of uploading the contents of your SD card so that I (or someone else) could snag it we could get you some reports.
It has to be a mirror copy of the SD card though.
Send me a PM if you want to try it. I don't mind...have done it often for various reasons.

Hi all!

Firstly, Pugsy - many thanks for the offer. One complication right now would be finding a way to get the data onto a computer as I still don't have one, and my work laptop is locked down for any external drives/sources/software. I believe they have a shared computer in my apartment complex so I'll see if I can use that to copy the data. Either way, many thanks for the offer, it's greatly appreciated.

So, following my previous post I pushed ahead with the fixed pressure of 9 and disabling of the EPR. Unfortunately the results weren't too good. Without the EPR I found it much more difficult to get to sleep. It's probably all in my head, but it felt like it was quite hard to breathe out properly and that I was having shallow breaths. Consequently I slept pretty poorly. The following night I decided to switch back to APAP but to lower my EPR level...and I finally had a good night! It's a little more difficult to brethe out than the full EPR setting, but not enough to make it difficult to drop off and I got a good 6.5 hours of solid, low AHI sleep, but this time with a positive feeling to match

Unfortunately last night wasn't so great. Firstly, I've noticed that I'm frequently getting leaks on or around the top of my nose. I'm going to speak to my physician about this and see what other mask may improve it (I'll probably push for the Quattro that I had a good experience with). Secondly, I've developed an oral ulcer under my upper left lip which is quite uncomfortable. I've never had anything like this before so I'm 99% sure it's related to CPAP. I'd guess that my straps are too tight and that it's pushing my lips towards my teeth (it feels like I could have easily bitten into it). Finally and interestingly, I've noted that the last two days my average APAP pressure has increased to 11.6 (this may be the reason why my previous pressure of 9 didn't provide a restful night). I suspect that this is caused by me lying on my back more recently which I've used as a technique to lessen the mask leaks.

So, the plan going forward is to try and get the data over to Pugsy, or alternatively buy a new laptop. I'll then speak to my physician about my mask tomorrow. If any of you have any recommendations concerning the ulcer, or indeed any of the other complications I'm having, I'd be greatly appreciative.

Robin.lewis wrote:Hi All,

...that my pressure was set to roughly 9.

Average Pressure: 9.2 (roughly matches the pressure identified by the tech. The machine is configured in 'Autoset Mode' with a minimum of 9 and maximum of 14)
AHI: 0.5 (a very good score)
Leakage: 4L/min (according to the Internet, not a bad score)


Thanks in advance for any help you can provide.

Your average pressure is sitting right on top of your minimum pressure. If these were my numbers I would lower your minimum pressure to 8 or even 7.75. The lower the pressure, the better the compliance with CPAP. My first experience with an APAP machine was waking up and thinking the machine was not working. It was, but the pressure of 9 was so low that the machine was quiet.

The S9 Autoset will only use high pressure when you need it and then back off. I've had my max pressure at 18 for 6 months. Just recently and for unknown reasons my S9 Autoset hit 17.85 briefly and then backed off. So, I will raise the maximum to 20. My average pressure is now 9.xx.

Robin.lewis wrote:Hi all!

Firstly, Pugsy - many thanks for the offer. One complication right now would be finding a way to get the data onto a computer as I still don't have one, and my work laptop is locked down for any external drives/sources/software. I believe they have a shared computer in my apartment complex so I'll see if I can use that to copy the data. Either way, many thanks for the offer, it's greatly appreciated.

So, following my previous post I pushed ahead with the fixed pressure of 9 and disabling of the EPR. Unfortunately the results weren't too good. Without the EPR I found it much more difficult to get to sleep. It's probably all in my head, but it felt like it was quite hard to breathe out properly and that I was having shallow breaths. Consequently I slept pretty poorly. The following night I decided to switch back to APAP but to lower my EPR level...and I finally had a good night! It's a little more difficult to brethe out than the full EPR setting, but not enough to make it difficult to drop off and I got a good 6.5 hours of solid, low AHI sleep, but this time with a positive feeling to match

Unfortunately last night wasn't so great. Firstly, I've noticed that I'm frequently getting leaks on or around the top of my nose. I'm going to speak to my physician about this and see what other mask may improve it (I'll probably push for the Quattro that I had a good experience with). Secondly, I've developed an oral ulcer under my upper left lip which is quite uncomfortable. I've never had anything like this before so I'm 99% sure it's related to CPAP. I'd guess that my straps are too tight and that it's pushing my lips towards my teeth (it feels like I could have easily bitten into it). Finally and interestingly, I've noted that the last two days my average APAP pressure has increased to 11.6 (this may be the reason why my previous pressure of 9 didn't provide a restful night). I suspect that this is caused by me lying on my back more recently which I've used as a technique to lessen the mask leaks.

So, the plan going forward is to try and get the data over to Pugsy, or alternatively buy a new laptop. I'll then speak to my physician about my mask tomorrow. If any of you have any recommendations concerning the ulcer, or indeed any of the other complications I'm having, I'd be greatly appreciative.

I've found that it can take a night or three to adjust to a different pressure, even going up one or two. But, in reality, using a range of settings, it's bouncing around all night long.
So, it sounds like you're essentially giving up trying to replicate what you experienced in the sleep lab and go back to "whatever". Like I said before, they wouldn't have used a range of pressures in the sleep lab.
Hope your lip gets better.


Den

.

Wulfman... wrote: I've found that it can take a night or three to adjust to a different pressure, even going up one or two. But, in reality, using a range of settings, it's bouncing around all night long.
So, it sounds like you're essentially giving up trying to replicate what you experienced in the sleep lab and go back to "whatever". Like I said before, they wouldn't have used a range of pressures in the sleep lab.
Hope your lip gets better.


Den

.

They do use a range of pressures. They keep increasing the pressure until the AHI is under 5, usually well under 5. CPAP (constant pressure) is the way many sleep clinics automatically run and the lousy compliance results are from using the highest pressure needed during the entire night to keep the AHI under 5. They set up the machine to use this high pressure all night long, even when it is not needed.

The S9 Autoset monitors your breathing minute by minute adjusting the pressure when needed. It took a year on the S9 for my average pressures to start dropping. I was at 12.xx and now I'm at 9.xx. I'm curious to see if I decline even further. But, if I need a pressure of up to 18, the S9 can go there.

ResMed touts 60% better compliance with the S9 Autoset. The AirSense waits until it detects that you are sleeping before even kicking into its routine.

Sleep studies are very profitable. Sleep centers recommend coming back once a year for a new titration. This is needed if you are setup in CPAP mode on your machine. The S9 in APAP mode does a sleep study every night and you can view the results yourself.

I used CPAP set at 13 for years. I finally managed to borrow an APAP machine. It was the best sleep I had ever had. I woke up to a pressure of 9, not the 13 on my CPAP machine. I got an APAP machine as soon as I had done my homework.

CPAP is not best practice in my opinion. Has not been for many years. Ask your doctor if APAP is better than CPAP.

ChicagoBrownBlue wrote:

Wulfman... wrote: I've found that it can take a night or three to adjust to a different pressure, even going up one or two. But, in reality, using a range of settings, it's bouncing around all night long.
So, it sounds like you're essentially giving up trying to replicate what you experienced in the sleep lab and go back to "whatever". Like I said before, they wouldn't have used a range of pressures in the sleep lab.
Hope your lip gets better.


Den

.

They do use a range of pressures. They keep increasing the pressure until the AHI is under 5, usually well under 5. CPAP (constant pressure) is the way many sleep clinics automatically run and the lousy compliance results are from using the highest pressure needed during the entire night to keep the AHI under 5. They set up the machine to use this high pressure all night long, even when it is not needed.

The S9 Autoset monitors your breathing minute by minute adjusting the pressure when needed. It took a year on the S9 for my average pressures to start dropping. I was at 12.xx and now I'm at 9.xx. I'm curious to see if I decline even further. But, if I need a pressure of up to 18, the S9 can go there.

ResMed touts 60% better compliance with the S9 Autoset. The AirSense waits until it detects that you are sleeping before even kicking into its routine.

Sleep studies are very profitable. Sleep centers recommend coming back once a year for a new titration. This is needed if you are setup in CPAP mode on your machine. The S9 in APAP mode does a sleep study every night and you can view the results yourself.

I used CPAP set at 13 for years. I finally managed to borrow an APAP machine. It was the best sleep I had ever had. I woke up to a pressure of 9, not the 13 on my CPAP machine. I got an APAP machine as soon as I had done my homework.

CPAP is not best practice in my opinion. Has not been for many years. Ask your doctor if APAP is better than CPAP.

What a pile of garbage.
Sleep labs use single pressure......incrementing it in intervals of time until the proper therapeutic pressure is reached.
That's not using a RANGE like using an APAP in a range of pressures.

Just because SOME people can tolerate ranges of pressures, doesn't mean EVERYONE can. On this forum, we've always advocated for users getting APAPs because they offer more options. Many of the users find that the changing pressures during the night disturb their sleep and leave them feeling unrested. These pages are full of examples. The user's breathing can change when they enter deeper or REM sleep stages which can trigger pressure increases.......which may bump them out of their needed sleep stages and into lighter ones. SO, they spend all night sleeping in lighter sleep stages, with "good" AHI numbers, but lousy sleep.

The only time APAPs in a range of pressures may be used for sleep titrations would be for in-home studies if the potential user couldn't tolerate an in-lab study. In reality, that's why APAPs were created to begin with......."Auto-titrating Positive Air Pressure". Then, the data was analyzed to determine a better single pressure setting.

Here's a little "light" reading for ya.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2335396/

.pdf version of the above

http://www.ncbi.nlm.nih.gov/pmc/article ... .2.157.pdf

http://www.aastweb.org/Resources/Guidel ... ummary.pdf

http://www.aastweb.org/Resources/Guidel ... tNight.pdf

http://www.sleepdoc.com/images/linkfiles/split.pdf

http://www.molinahealthcare.com/provide ... CG-159.pdf

This particular article points out some of the advantages and disadvantages to both methods.

http://respiratory-care-sleep-medicine. ... etter.aspx


Den

.