still struggling after years of treatment

[dreamsofsleep]

Hi everyone. I'm hoping to get some advice because I'm really struggling right now. I am 28 years old and was diagnosed with mild sleep apnea and moderate upper airway resistance (AHI ~11, RAI/RDI ~30) about 6 years ago. Prior to that I had struggled with significant fatigue and sleepiness since I was about 15. Over the past 6 years, I've kind of switched back and forth between an oral appliance and CPAP/APAP, giving each a year or more at a time to figure out whether they were working. Sleep studies with the oral appliance said it was reducing but not completely eliminating my events, so I switched to CPAP, which, at least according to the numbers, reduces my total events to below 5. However, I've continued to feel really exhausted with both treatments (haven't noticed a real difference between them either). I've tried CPAP at various fixed pressure settings, as well as APAP, without noticing a real difference there either. And I've been really compliant with treatment. This summer, since I'm on summer vacation from my job in a public school, I've been using CPAP for at least 8 hours a night, often more like 9 or 10. I use a chin strap and the numbers show low to no leaking. My sleep studies have tended to show a lot of spontaneous arousals, but I'm not sure whether that's just due to sleeping in a different environment and being hooked up to a lot of wires. I do feel like I tend to wake up pretty easily, and usually get up to go to the bathroom at least once a night. I've had a lot of blood work over the years, including having my thyroid checked and everything has come back "textbook normal." The only other medical diagnoses I've had are mitral valve prolapse and moderate scoliosis. I struggle a bit with anxiety, but keep it pretty under control with yoga and meditation. Anyway, I'm just hoping someone might be able to point me in the right direction or have some suggestions as to where to go from here. I am so sick of feeling this way!

Another more specific question concerns how much I should be letting myself sleep. As I mentioned, I'm not working at the moment, and am finding it really hard to get up even at 9 or 10 a.m, having gone to bed usually between 11 and 12. I feel like I could sleep for hours more. Should I be letting myself sleep as much as I want? I tend to actually feel worse and just want to sleep more and more if I do that (not to mention it leaves me less time to get things done during the day). I also then gravitate toward staying up really late and sleeping really late, which is a hard pattern to get out of when I have to go back to work in a few weeks. However, I wonder whether I just have a lot of sleep debt to pay off and eventually I might feel better if I just allow myself to sleep 12, 14, 16 hours a day. Any thoughts? Thanks in advance, and sorry for the long post!

[Wulfman]

What machine, mask and pressure?

Are you actually using CPAP now?
I'd venture to guess that you're leaking more than you think.....and/or your pressure isn't right.

Den

[dreamsofsleep]

Thanks for the response, Den. I'm currently using a Resmed S8 APAP at a fixed pressure of 8, with a humidifier and Respironics Comfort Gel nasal mask. I've also used the same machine in auto mode, but worried that it wasn't catching all of my non-apnea/hypopnea respiratory arousals. I've also used previous machines at fixed pressures between 7 and 11. My most recent study showed that fixed pressures beyond 8 led to a drastic increase in respiratory arousals (again, non-apnea/hypopnea). I'm wondering if this UAR makes it difficult to get things just right. I have a call in to my doctor to request another sleep study at this fixed pressure of 8 (with adjustments if it's clear they're needed), since at my titration study they only had me at this setting for about an hour. Really, what does an hour tell you? But given that I've tried so many different settings and pressures, I'm worried that I'm running out of options.

[Wulfman]

Are you getting data from the LCD screen on your machine? (sort of sounds like it)

If so, what kind of "numbers" are you seeing?


Den

[Guest]

I was told I had to download the data onto a card and send it in to get that info . I don't know how to get it myself. But I did recently send it in and actually I'm a little confused by the numbers. They gave me a printout of all the data from 11/20/07 (which was before I even got the machine) through 5/13/08. I actually started using it as an APAP in late December, then switched to a set pressure of 8 at the end of February/beginning of March (I had to send the card in to have that done, too). However, the printout lists a median pressure of 6.4, 95th percentile as 6.6, and maximum of 6.9. Now, even if they averaged all the data, shouldn't the maximum pressure still say 8 if that's currently what I'm at? Is it possible they didn't actually change my pressure and it's still working as an APAP? As for the "events," Apnea Index was 0.1, Hypopnea Index and AHI were 1.9. That really doesn't tell me much, though, since the data doesn't include non-apnea/hypopnea respiratory arousals, which is mostly what I have. My AHI even without CPAP is only around 10. As for leaks, the median was 1.2 L/min, 95th percentile was 3.6 L/min, and maximum was 16.8 L/min. Thanks in advance for any input on this!

[Wulfman]

Sounds like you need to find out for yourself how your machine IS configured.

Den

Here's some instructions that are available in various places on the Internet:

--------------------------------------------------------------------------------------

1. Accessing the Clinical Menu

Turn on the device and wait until the standby (RAMP/SETTLING) screen appears on the LCD.
At this stage you can adjust the ramp/settling time.

Press the DOWN and RIGHT keys simultaneously for 3 seconds to access the clinical menu.


2. Changing Options and Settings.

Press the LEFT (menu) key to access the SETTINGS menu screen.

Use the UP and DOWN keys to scroll through the RESULTS, OPTIONS and SERVICING menu screens.

From a menu screen, use the LEFT (enter) key to access the parameters in that menu.

Use the UP and DOWN keys to scroll through menu parameters.

Use the LEFT key to view or change each parameter setting as required.

Press the RIGHT (exit) key until you return to the standby (RAMP/SETTLING) screen.


--------------------------------------------------------------------------------------


ResMed S8 Series
To get into the provider setup mode in a ResMed S8 CPAP machine - such as the S8 Compact, S8 Elite or S8 AutoSet Vantage - follow these steps:

1. press the right and down arrows simultaneously for about 3 seconds until the "Clinical Menu" appears on the screen

Use the up and down arrows to cycle through the settings and use the left "soft key" to select "Change" or use the right "soft key" to "Exit" from the Clinical Menu. Below is a list of settings you can cycle through on an S8 AutoSet Vantage automatic CPAP machine. There are four groups of settings which have adjustments and data within them.

* Settings
o CPAP Mode
o Minimum CPAP Pressure
o Maximum CPAP Pressure
o Maximum Settling / Ramp
o Mask Type
o Tube Length
o Humidifier
o Smart Start
o Leak Alert
* Results
o Efficacy Data
o Usage Data
* Options
o Smart Data
o Reminders
o Factory Defaults
o Erase Data
o Date
o Time
o Menu Type
o Language
* Servicing
o Run Hours
o Serial Number
o PCV Number
o SW Number
o BR Number

[Guest]

Wow, thank you so much! So, it says it's set in CPAP mode, with a pressure of 8. It ramps up starting from a pressure of 4. However, in the "efficiency data - results" section, it lists the pressure from the last week and month as 6.6. Is that the median pressure? Shouldn't it be 8, or close to it if it takes ramping into consideration? Also, what's considered an acceptable leak rate? I feel like I'm starting to get somewhere now! Thank you - much more helpful and accessible than my doctor or DME!

[Wulfman]

Wow, thank you so much! So, it says it's set in CPAP mode, with a pressure of 8. It ramps up starting from a pressure of 4. However, in the "efficiency data - results" section, it lists the pressure from the last week and month as 6.6. Is that the median pressure? Shouldn't it be 8, or close to it if it takes ramping into consideration? Also, what's considered an acceptable leak rate? I feel like I'm starting to get somewhere now! Thank you - much more helpful and accessible than my doctor or DME!

I know my limitations on ResMed machines........so, some other knowledgeable users will need to come forth to give you some further info.


Den

[dreamsofsleep]

Oooh, I'm so mad! I just called my DME provider and it turns out that instead of changing my APAP to a fixed pressure of 8, they just changed the maximum pressure to 8 and kept it in auto mode, even though my prescription clearly specified a fixed pressure! I wanted it at a fixed pressure because I was concerned that it wasn't catching all of my respiratory events. Wasn't there just a posting on here recently about how much we trust out DME?! Yeah, not very much anymore. Anyway, they said I can bring it in tomorrow and they'll fix it for me, but at this point I'd just prefer to fix it myself if I can figure it out. I'm a little confused because it says it's in CPAP mode with a pressure of 8. I tried changing the "start CPAP" pressure to 8, but it seems like that just changes the starting ramp pressure. I'll play with it a little more, or if anyone else knows, please let me know! Thanks!

[RiverDave]

dreams,

If you are in CPAP mode, are you using EPR?. that will lower the pressure number you see on the LCD.

If you are still in APAP mode, it may be that your starting pressure is too low. I can't speak for anyone but me, but when I began treatment I couldn't breathe properly until my pressure was at least 7 (actually, that's what brought me to this forum).

[Guest]

Thanks, RiverDave. It does show the EPR is turned on, at a setting of 3. Would that lead the data to show pressures (even 95th percentiles) in the 6s at a fixed pressure of 8? It does also show that I'm in CPAP mode, not auto mode, so maybe the DME was wrong. Maybe they did set it properly. I'm so confused and frustrated. If this is not my issue, then I'm back to square one and have no idea why I'm so exhausted all the time.

[ozij]

An EPR of 3 drops your pressure 3cm each time you exhale. The pressure your machine reports is the average pressure.

8 is not very high, and a drop to 5 each time you exhale might well explain how bad you feel.

Try cancelling EPR (Exhale Pressure Relief).

O.

[Snoredog]

Oooh, I'm so mad! I just called my DME provider and it turns out that instead of changing my APAP to a fixed pressure of 8, they just changed the maximum pressure to 8 and kept it in auto mode, even though my prescription clearly specified a fixed pressure! I wanted it at a fixed pressure because I was concerned that it wasn't catching all of my respiratory events. Wasn't there just a posting on here recently about how much we trust out DME?! Yeah, not very much anymore. Anyway, they said I can bring it in tomorrow and they'll fix it for me, but at this point I'd just prefer to fix it myself if I can figure it out. I'm a little confused because it says it's in CPAP mode with a pressure of 8. I tried changing the "start CPAP" pressure to 8, but it seems like that just changes the starting ramp pressure. I'll play with it a little more, or if anyone else knows, please let me know! Thanks!

Do you have any copies of your old PSG? I don't think leaving your machine in the auto mode caused by DME caused any real problems with your sleep, by limiting your Max pressure to 8 that would avoid the pressure that supposedly caused unstable sleep. You have mentioned a few key words, so considering that and:

you have already tried various other ways of therapy without much success, you now need to remove some of your blinders and be a bit more open minded for suggestions.

1. I would set the Minimum pressure to 6.5 and the Maximum to 15.0 cm. You have to have a little faith in the machine, that machine won't respond to apnea above 10 cm so it will only chase Flow limitations and snore above that pressure, but by "always" avoiding that 8 cm barrier you have no idea how you would do above it

Note: the worst that can happen is you wake up, how is that any different than the fatigue you now feel??

Now there is logic and reason behind these suggestions, you mention spontaneous arousals? Can I bet you also snore?

while they don't know exactly what causes the spontaneous arousals (reason they are called spontaneous) they ARE important. They are the very same arousals that are associated with like an apnea. Only difference is they can't correlate any respiratory effort to classify them as such. But those arousals are just as bad at destroying your sleep architecture as a frank apnea.

Now we know how to address snores, but sometimes when you address snores it can cause disturbed sleep even a few centrals to show up. That is probably what they seen in the lab, they took you to 8.0 tried to go higher and sleep fell apart, well in the lab you wake up and sleep study is over, they try and avoid that at all costs as you will have to come back and start over.

But NOW you are NOT in the lab if you wake up well it may leave you tired but you don't have to go back and do a bunch of paperwork. You are at home, if you wake up you can always go back to sleep, we are not trying to set any records here we are trying to sleep.

So what happens if you let the machine go above 8.0 cm to take care of snore? I bet some of those spontaneous arousals are no longer spontaneous arousals. Sure it may not reduce them by any but you don't know that until you try. You know if you feel BETTER it had to have eliminated some.

Now, I am NOT going to introduce CPAP mode and EPR into this because it simply isn't going to help you ANY. You have basically been on CPAP mode with your current settings and still suffering.

So here is what I suggest:

Mode=AutoSet (yes, put the machine in Auto mode)
Minimum Pressure=6.5 (make it comfortable, make it so you can sleep, if you need a bit higher go for it).
Maximum Pressure=15 cm (give the machine an honest chance of treating you, you can set it to 20 if you want it isn't going to hurt you).
Settling Timer=30 minutes
Setting Pressure=6.5 (set to same as Minimum pressure or even lower if you wish).

Now with the above settings set, follow your regular routine, after turning on the machine hit the "Settling button" and go to sleep.

Next morning check your last Session AI and HI and leak info. AI will be the only number I will be wanting to see, that and leak.

Sleep with those settings 1 night, then go into clinical menu and give the session AI and HI and leak and 95% found pressure.

You want to observe where your AHI is and at what pressure. We'll adjust from there and get your AI down to acceptable levels then work on HI. Once those two indices are within acceptable limits (less than 5) you have done all you can do with that machine.

Now understand once we get your AHI down to acceptable levels and you remain fatigued getting adequate sleep (which you appear to be getting) and you still feel no relief from CPAP, you have to pull out that PSG and go over it with a fine tooth comb, mainly you want to look at sleep architecture found, micro arousals or those classified as "spontaneous".

If you can, you want to post your RDI, sleep architecture (Stage1-4 plus REM) and microarousal count from the PSG.

Now with this machine we can only address "obstructive" events. Once you eliminate the obstructive events you have to look at the other disorders seen on your PSG. Those "Spontaneous" arousals are or can be artifacts from another disorder, they can be from almost anything including muscle-skeletal pains, medications you may be taking for another disorder, to SSRI's to even UARS.

UARS is more difficult to address here, it is thought to be resistance in the upper airway even smaller than what we see as Flow Limitations. Theory goes these flow limited breaths are so small the lab may have difficulty detecting them with out a probe in your esophagus. Only place I know that does that is Stanford and probably the only place you will hear about UARS. But if not mistaken those tiny FL's as I call them can lead to those arousals they called "spontaneous" on your PSG. IF they did that, your lab most likely couldn't detect UARS but only "suspect" that is what you had. Otherwise they woulda/shoulda titrated you for UARS using bilevel, then you have to use a 425 bilevel from a certain lab. But the theory goes if titrated properly on that PB425 they can eliminate the UARS and much of those current spontaneous arousals. With those gone, sleep architecture returns to normal and you finally get the rest you need. That is if you buy into that theory, but yours truly hasn't seen any evidence of that yet and I've had 4 PGS's chasing it.

SO that is my guess, and if you don't want to waste more time and money going through all this with your doctor, you get your ducks in a row and when you go in to see them you say look PSG says I have OSA, machine says i am effectively being treated for OSA. That treatment has eliminated all the arousals associated with it. What is left is the spontaneous events seen "here". You need to send me to Stanford and let them work their magic on UARS. Either that or you have something else going on like lupus, some other blood disorder or even cancer. It is all about elimination. Eliminate the OSA part, then go after the next possible cause. They can take your blood while they are chasing down any other aspect.

[Guest]

Would that lead the data to show pressures (even 95th percentiles) in the 6s at a fixed pressure of 8?

Just confirming what Ozij said (and a possible clarification) An EPR of 3 drops the exhale pressure by about 3 cm, so at a fixed inhalation pressure of 8 and an exhalation pressure of 5, the average reading would be about 6.5 give or take.

I think the machine still reports the 95% pressure, but because the pressure is nearly constant (at about 6.5), the average and 95% tile pressure are about the same. But I could be wrong.

RiverDave

[dreamsofsleep]

Thanks everyone. Sorry - haven't had much time to be on the computer the last couple days. So the EPR was on and that was what was resulting in lower pressures in the results section. I tried turning it off a couple nights ago, but woke up with a really dry mouth and figured I had been leaking through my mouth, so I turned it back on. Sure enough data the next morning showed almost double the leak rate as usual. I was titrated with an EPR of 3, so I'm thinking that may not be the issue, but thanks O.

Snoredog, thank you for your suggestions, too. I'm excited to be able to control the pressure on my machine now, so I will play around with different ranges, starting at the 6.5 to 15 you suggested. However, the data my machine provides me with is not much help, as my AI and AHI are very low to begin with. The vast majority of my arousals are RERAs, not full apneas or hypopneas. My AI has always been close to 0 and AHI around 10 without CPAP, and always under 5 at any pressure on CPAP. So it will be hard to tell whether a different pressure or range of pressures is working aside from my subjective experience of how I feel.

You asked whether I have a copy of a past sleep study. I have several. My most recent, which was the latest attempt at titration from February 2008 showed the following:

Sleep Efficiency: 87.9%
Sleep Onset Latency: 4.5 minutes
# of Stage 1 Shifts: 42
Number of State Shifts: 127
Number of Awakenings: 21
Number of REM periods: 3
REM latency: 113.5 min.
REM latency minus awake: 110.0 min.

Stages (minutes/percentage/latency):
Wake After Sleep Onset: 51.5
Stage 1: 33.0/8.1/0.0
Stage 2: 225.5/55.4/2.0
Stage 3: 40.0/9.8/21.5
Stage 4: 47.0/11.5/24.5
REM: 61.5/15.1/113.5

Apnea events (obstructive and central): 0
Hypopnea events (" "): 0

Respiratory events by body positions (index/total):
Apneas and hypopneas: 0.0/0
RERAs: 8.4/57
Supine Resp. Events: 4.8/19
Non-supine Resp. Events: 13.4/38

Respiratory Arousals (index/total):
Total events: 8.4/57
Non-REM events: 4.0/27
REM events: 4.4/30

No PLMs

Spontaneous EEG Arousals (index/total):
Total events: 17.7/120
Non-REM events: 15.8/91
REM: 28.3/29

Oxygen Saturation: all between 92 and 100%

Titration:
Pressure / Duration (min.) / REM (min.) / Non-REM (min.) / RERAs / RDI
4 / 21.9 / 0 / 16.4 / 4 / 14.6
6 / 26.6 / 0 / 25.6 / 1 / 2.3
7 / 19.4 / 0 / 18.9 / 1 / 3.2
8 / 54.4 / 4.4 / 49.0 / 1 / 1.1
9 / 190.4 / 34.4 / 114.0 / 28 / 11.3
10 / 150.2 / 22.7 / 121.5 / 22 / 9.2

Although it doesn't list a breakdown of the spontaneous arousals at different pressures, based on the graph of sleep stages over time and from subtracting the REM and non-REM sleep from the duration spent at each pressure, it looks like they were scattered throughout the night. A spontaneous arousal index of 17.7 seems high, and if that's typical for me, it makes sense that I'm tired. I just don't know what's causing them or what to do about them. The esophageal pressure monitor is something that's come up with past doctors, but from what I understand it's really difficult to tolerate. Is the PB425 considered the best machine currently available for UARS? Maybe I'll request a trial of that. Any other thoughts? Or anything I'm missing in looking over my sleep study? Past studies have been comparable.