Energized After Sleep Study But Not With Home CPAP?

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Joyful Sleeper
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Energized After Sleep Study But Not With Home CPAP?

Post by Joyful Sleeper » Sun Sep 07, 2014 6:11 pm

Hi All!

I’m curious if any of you have any ideas for me.

On the morning after my initial sleep study (4/2/14) I felt very energized and clear (as if the “mental fog” had lifted). I was excited that I might be able to feel this way on a regular basis using CPAP. I was fitted with an Auto CPAP machine on 5/15/14 and have used it on a regular basis since, but haven’t felt that same feeling of energy and clarity using CPAP at home. In fact, I’ve actually been sleeping more hours and feeling more tired WITH the CPAP than I did before I had the CPAP. My sleep doctor is satisfied that CPAP is working for me because my AHI with home CPAP is in the normal range (<5), but I’m questioning the efficacy of my treatment.

Here are more details:
After the split night sleep study I was diagnosed with severe Obstructive Sleep Apnea (OSA), Obstructive Hypopnea Syndrome (OHS) and moderate to severe snoring which were associated with mildly reduced oxygen saturation (98% awake to a low of 87%). The study said I had rapid sleep onset, rapid REM onset, high sleep efficiency and severe sleep fragmentation.

During the first 2.75 hours of the study (without CPAP treatment), my AHI was 50. The respiratory disturbances occurred at 15-20 second intervals and had durations of 15-33 seconds (mean respiratory duration 18 seconds); there were no central apneas and the obstructive events were 75% hypopneas and 25% apneas.

During the next 4.25 hours of the study I was given nasal CPAP treatment with pressures ranging from 4-8 cm (pressures was briefly at 4 & 5 and then at 6, 7 & 8 respectively as the night progressed). My AHI during that period was 13; there were no central apneas or obstructive apneas but there were 57 obstructive hypopneas (mean respiratory duration was 15 seconds; maximum respiratory duration 23 was seconds). My oxygen saturation ranged from 92-97%.

On 5/15/14 I was fitted with a ResMed S9 Autoset CPAP with H5i humidifier that was set for a pressure range of 5-8 cm. I used a Fisher & Paykel Eson nasal mask and a Resmed Quattro Air full face mask for the first 2.5 months. I had some difficulties with the masks leaving marks and causing skin irritation and breakouts so after the first 74 days I briefly tried a Respironics Comfortlite 2 nasal pillow mask (I had awful nostril pain that lasted for days but low AHI) and yesterday got the Resmed AirFit P10 nasal pillow mask.

According to the compliance report from my DME (I’m guessing from ResScan), after the first 30 days of home Auto CPAP use my average maximum pressure was 7.9 cm, my 95th percentile pressure was 7.9 cm & median pressure was 6.9 cm. My median leaks were 1.7. My AHI was 3.4, Total AI was 2.9 (Central AI was 0.2, Obstructive AI was 2.1 and Unknown AI was 0.6) and HI was 0.5.

My doctor changed my top pressure to 7 cm on 7/25/14 after 72 days of use because I was having stomach pain and burping, presumably from aerophagia/swallowing air.

After the first 77 days of home Auto CPAP use (5 days after top pressure being lowered to 7 cm) my average maximum pressure was 7.7 cm, 95th percentile was 7.6 cm & median pressure was 7 cm. My median leaks were 3.1. My AHI was 4.6, Total AI was 3.8 (Central AI was 0.2, Obstructive AI was 3.1 and Unknown AI was 0.5) and HI was 0.8.

My sleep doctor was satisfied that the CPAP therapy was working because my AHI was under 5, but I was feeling less rested (more tired) than I did before beginning using the CPAP and I wasn’t feeling the mental clarity and energy that I felt on the morning after the sleep study. My doctor suggested I should take 180 mg of Allegra in the morning and use 2 puffs of Nasacort each morning because I had swollen turbinates. I don’t usually take any medications and I don’t have any obvious symptoms of allergies besides the swollen turbinates (that don’t bother me) so I wasn’t excited about taking medications; the turbinates were also swollen before the sleep study (it was noted on the indications my primary care doctor gave for the sleep study) so I didn’t see why that would be the issue causing the difference in experience between the sleep study and home CPAP use. My sleep doctor also suggested I could try a mandibular advancement device (MAD), which I’m open to, but it still didn’t explain to me why I would feel really wonderful after using CPAP during the sleep study and not feel similarly when using CPAP at home.

At that point I got online and found this group. I downloaded the SleepyHead software (I have a Mac so can’t use ResScan) and began to look at my data each morning so I could correlate the data with how I felt, sleeping position, dreams and mask type. Overall, my numbers look excellent. My AHI has been less than one on 71% of the nights that I’ve used the CPAP and between 1-2 another 10% of the time. The AHI for the night has only been over five on 5% of the nights. So if the numbers are accurate, my apnea should be generally well controlled.

That said, while my overall numbers look excellent, there are some nights when I’m still having many obstructive events; while the overall AHI of the night may be low, if I look at the AHI for the period of the events, the AHI for that period is quite high (for example, according to SleepyHead my peak AHI on 7/20/14 with home CPAP use was 46). There has also been one night (8/18/14) when I woke up with a nightmare in which I couldn’t scream in the dream until I eventually woke myself up actually screaming out loud (this was one of the initial indications for which I did the sleep study) and the report showed NO apneas at the time of or before the nightmare (during which I’m assuming I was having an apnea). So I’m questioning if my pressure range is wide enough to give the machine the ability to stop apneas when they are happening and if the machine is accurately picking up on all my apneas. I’ll do my best to attach a screen shot of three of the nights with many apneic events for your reference. For 7/20/14 & 7/21/14 the top pressure was still 8 cm & I don’t have detailed flow graphs because I downloaded SleepyHead later; 8/14/14 had a maximum pressure setting of 7 cm and a lower peak AHI but has a detailed flow graph. I’ll also include a screen shot of the night (8/18/14) I woke up at 5:39 am with the nightmare during which I couldn’t scream for your reference.

July 20, 2014 (peak AHI 46):
Image

July 21, 2014 (peak AHI 28):
Image

August 14, 2014 (peak AHI 19; 16 OA's between 8:48-9:08 am & 19 OA's between 11:24-11:51 am):
Image

August 18, 2014 (awoke from nightmare not able to scream at 5:39 am but no apnea recorded):
Image

I’m wondering what steps I can take now? What can I ask my sleep doctor to do for me? Do I need a home or lab study that checks the efficacy of my CPAP machine? Do I need a new lab titration study? Do I need a different machine (that uses a different algorithm)? Do I need a higher top pressure? If so, is there a way of increasing the top pressure while avoiding the burping/stomach pain (aeroophagia) I had when the pressure was at 8 cm? Do any of you have any additional suggestions of what might be happening or what to investigate or try?

Thanks so much in advance for any insights or help you might have !

Joyful Sleeper

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Wulfman... » Sun Sep 07, 2014 6:47 pm

I would suggest a straight CPAP pressure (not a range of pressures). It may help clear the "fog" and possibly help eliminate the aerophagia.


Den

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Pugsy » Sun Sep 07, 2014 6:55 pm

What is your primary sleeping position?
If you look at the pressure line during the time where the ugly clusters occurred it was maxed out. Other parts of the night not as much pressure is needed.
The 2 most common causes for higher pressure needs are supine sleeping (on your back) or REM stage sleep or maybe a combination of both.
Unfortunately we cannot exactly determine sleep stages with the data from the machine because it can't even tell if we are awake or asleep. Typically REM sleep occurs about 90 minutes after sleep onset and then as the night goes on REM cycles around more frequently and lasts longer with the greatest amount of REM sleep occurring in the wee hours of the morning.

You can go here and look at the hypnogram and see where REM normally occurs and compare it to your ugly cluster to see if you think there might be a correlation.
http://en.wikipedia.org/wiki/Sleep
Or it might be that you are on your back and in REM sleep....or maybe just on your back.
For some reason there are periods of time during the night when your max pressure is being reached and the machine wanted to go higher (how much higher we don't know) and the airway collapsed.

Normally the suggestion would be more maximum but more maximum will increase the aerophagia issues.
If you normally sleep on your back a lot you might try staying on your side if you can and see if that helps the situation any.

These clusters are ugly enough that they could impact how a person feels the next day but if most of your nights you don't see these ugly clusters I don't know if we can totally only blame the clusters. If most of your nights everything looks good on paper then we have to fall back on the other usual suspects..hours of sleep, are those hours of sleep fragmented and any meds being taken that might impact sleep quality.

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Joyful Sleeper » Sun Sep 07, 2014 7:06 pm

Hi Den,
Thanks for your reply! Can you tell me why a straight CPAP pressure might possibly help clear the fog and eliminate aerophagia? If I go with a straight pressure, what might it be?
Thanks!
Joyful Sleeper

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Wulfman... » Sun Sep 07, 2014 7:18 pm

Joyful Sleeper wrote:Hi Den,
Thanks for your reply! Can you tell me why a straight CPAP pressure might possibly help clear the fog and eliminate aerophagia? If I go with a straight pressure, what might it be?
Thanks!
Joyful Sleeper
Pressure changes can disrupt a person's sleep. For some it doesn't bother, but for some (and that includes me), the changing pressures really mess with one's sleep. What happens is that as a person goes into a deep or REM sleep stage, their breathing changes (and that's all these machines have to base their "decisions" on.....air flow) and the machine's algorithm may decide that they're having a flow limitation or snore......then, they bump the pressure and the user gets bumped out of that needed sleep stage and into a lighter one or actually awakened. Consequently, they're not getting the good restorative sleep they need.

As far as a straight pressure, if you have an idea of the pressure "threshold" that causes your aerophagia, I'd try that or slightly below, till you see how it goes.
No "guarantees", but it may be worth a try.

Also, as Pugsy mentioned, sleep position can make a big difference. I sort of looked when I was reading your post, but didn't see if you mentioned what yours is, but people with aerophagia or GERD may see better results if they can sleep predominately on their left side, as the opening to the stomach would be in the top position in that position.


Den

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by library lady » Sun Sep 07, 2014 7:33 pm

I can't speak to the technical stuff, I don't know enough about it... but you mention your mask issues. When I started CPAP on Feb. 3 with Quattro Air, I had leaks up the wazoo and massive face farts all night! When all else fails, mask liners will often take care of them, as well as protect your face from red marks and irritation. They were a game changer for me, and I use one every night. Many forum members use either Pad-A-Cheeks, http://www.padacheek.com, or RemZzzs, available from most DMEs and online at https://www.cpap.com. Others make their own liners from old t-shirts.

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Joyful Sleeper » Sun Sep 07, 2014 9:09 pm

Hi Pugsy,

Thanks for responding:)!

I have traditionally generally slept on my side. That said, due to a 2011 car accident my physical therapist suggested training myself to sleep on my back due to (still existing) chronic shoulder & back pain issues. Since the OSA diagnosis I have been aware that OSA is generally worse with supine (back) sleeping so have been focusing on sleeping mostly on my side, but I do sometimes sleep on my back (sometimes accidentally because I roll there in my sleep & sometimes on purpose for comfort). I also occasionally use the "Falcon" position (or modified Sims' position here: http://pixgood.com/sims-position.html) but I can't stay in that position for long periods of time. Since these screenshots were done I've been trying to record what position I was sleeping in and correlate sleeping position with AHI. I've had nights when I've slept on my back the entire night and had an AHI of less than one, so the supine position isn't necessarily always an issue. I was definitely on my back when I had the 8/18/14 nightmare (with "no apnea") but don't know for sure the sleeping position of the earlier screenshots (they are from before I started recording but I'm pretty sure that on 7/20/14 I was mostly on my side). I do agree with your theory that the clusters of apneas could have been from supine sleeping position and/or from REM sleep periods. I also agree that a higher top pressure is probably indicated for those times when my body needs it, but am not sure how to do that without the stomach pain and burping I got with the (relatively low) top pressure of 8 cm.

Most of my nights I'm NOT having clusters of apneas like this and I still feel more tired than I felt pre-CPAP and not energized like I did after the sleep study. I'm not on any medications (pretty much my whole life I've never taken any medications). I exercise regularly, eat well and maintain a normal body weight. My sleep schedule IS inconsistent due to my work which requires occasional nights of limited or no sleep after which I sleep long hours to catch up, but this was true before the sleep study and before using CPAP as well (I'm working on trying to maintain a more consistent sleep schedule). My average hours of sleep are HIGHER since using CPAP and probably less fragmented for work reasons because I've been paying attention to that and I still feel more tired.

Thanks for your help!

Joyful Sleeper

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Pugsy » Sun Sep 07, 2014 9:37 pm

You've done your homework for sure.
Did you drop the max from 8 down to 7 in one drop or have you tried like 7.2 or 7.4 max and still had aerophagia issues?
Normally we tell people to add in EPR to help with aerophagia issues but it looks like you are already using EPR at 3.
The drop in the max along with the drop during exhale phase with EPR and combined with whatever has changed to require the higher pressure shown by maxing out at 7 with the ugly clusters...could possibly be allowing the airway to collapse in conjunction with EPR exhale phase...meaning that 4 cm minimum might be allowing some events to occur for whatever reason they are occurring in such large numbers for large blocks of the night.

If it was a short block might just let it slide if the aerophagia was more of a problem than a couple of little clusters are but those are big prolonged clusters.

If your stomach will tolerate it...how about trying cpap mode at 6 or 7 without EPR and see what happens? Or turn off EPR with current settings or reduce it and maybe increase the minimum to say 5.6 or so.
Find some way to maybe increase that baseline pressure to maybe do a better job preventing whatever is causing those ugly clusters and higher pressure needs without actually increasing the pressure beyond 7 cm if that is your line where you can keep the aerophagia issues at bay.

I don't know why you had the energized day after the titration study and can't get it again since you don't feel so great even after the nights where you don't have the ugly clusters. It happens though and often we can't come up with a good reason. Most of the time people say they feel great for a week or so then backslide...we call it the honeymoon stage. Unusual to just have one honeymoon night though. My titration sleep study was the night from hell. Probably the worst I have ever felt in my life was after that night but then the tech I had was a total dufus and I didn't sleep much and I didn't get but very limited REM sleep anyway and that was with the whole 8 hours being devoted to the titration.

It's worth a try to consider using fixed pressures like Den suggested. Maybe the changing pressures are a disruptive factor to your overall sleep quality. Your range is tiny but it's still a range and maybe it's part of the issue. Worth trying fixed pressures to see if it helps or not.

Those ugly clusters ...you are going to have to decide what you want to do about them and if you want to do anything about them.
If you simply can't increase the pressure from 7....maybe try bringing that minimum up and see if that helps or not. Maybe CPAP mode at 6 or 7 with and without EPR to see how it goes. Several different ways to try to bring up that base pressure. Pick one and try it a few nights and if no luck...pick another and try it a few nights.

For aerphagia sometimes a bilevel machine is often used. Your S9 with EPR works like a bilevel machine but it is limited to max of 3 cm difference between inhale and exhale. The real bilevel machines will let you have greater than 3 cm difference and sometimes that's need to deal with aerophagia issues when dropping the pressure can't go any lower due to airway collapses happening.

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Joyful Sleeper » Mon Sep 08, 2014 10:19 am

THANK YOU, THANK YOU, THANK YOU Den, Library Lady & Pugsy ! I soooooo appreciate your suggestions and having some strategies to experiment with!!!
Joyful Sleeper

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Joyful Sleeper » Thu Sep 11, 2014 2:54 pm

So here's an update:

As a first experiment I opened up the top range of my pressures (to 20 just to see where the machine would go if left to its own devices) & left the bottom pressure at 5. That definitely reduced the apneas & hypopneas...in the past four nights I've had two nights with NO obstructive events (apneas or hypopneas) and two nights with just two obstructive events. The maximum pressures have ranged from 9.08 to 11.72 so it does appear that my original top pressure (8) was too low to stop the apneas. I tried raising the bottom pressure to 6 on the third night (with the idea that less auto adjustment might help me sleep better and feel more energized more like using a straight CPAP pressure) and I woke up with VERY bad aerophagia stomach pain & gas that lasted for 6-7 hours. On the fourth night I moved the bottom pressure to 4 to try to avoid the aerophagia pain. On the three nights when the bottom pressure was 5 or 4 I didn't have bad aerophagia even when the machine occasionally used the higher pressures to stop apneas (which gives me hope that I might be able to handle the higher top range if I keep the bottom range low). My central apneas did not increase with the higher top pressure. Am wondering if a bi-level machine that had a greater range than my current EPR of 3 could help me to have high pressure when needed but without aerophagia pain?

The first three of the last four nights I was using the AirFit P10 nose pillows--I got a lot more congestion with nose pillows than with a nasal mask and woke up and had to switch out that mask for my FFM because I was so congested. I suspect that the congestion may have led to higher pressures than I might have needed without congestion (and perhaps this added to the aerophagia pain on night three). Last night I tried the nasal rinse for the first time but went back to the Eson nasal mask because I just wanted to be able to breathe without difficulty and see what would happen without congestion...

Last night I made a trial mask liner from an old (95% cotton + 5% spandex) t-shirt and tried it over my F&P Eson nasal mask and it was very comfortable--for the first time since using that mask my nose didn't itch! Yahoooieee:)! I liked the comfort of the cotton on my skin rather than the silicone:).

I will try the straight CPAP mode and other experiments suggested (removing EPR, etc.) with time, I just wanted to experiment first with opening up top pressure to have an idea of what might really be needed to stop the obstructive apneas.

I still don't feel the energy I did after my sleep study, but perhaps with time I will get the various elements sorted out and it might come...

Thanks to all for your replies & suggestions:)!

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Joyful Sleeper » Mon Sep 29, 2014 11:51 am

Here's a new update:

Since my original posting I've used a higher top pressure range (I started with opening it up to 20 but have now brought it down to 13 since the maximum pressure the machine has used so far is still 11.72), I've tried turning off EPR (had HORRIBLE aerophagia so turned it back on to 3), and have tried straight CPAP (couldn't get pressure high enough to stop obstructive events without aerophagia). I've elevated the head of my bed 6" (hoping to help aerophagia) and am now very slowly increasing bottom pressures to see how high I can get the bottom pressure without aerophagia symptoms. My AHI numbers are good on paper but I still don't feel great and the machine is "chasing" the obstructive events I'm having (raising the pressure after the events & not before), thus am trying to raise the bottom pressure.

Just FYI, I found a new sleep doctor and the new sleep doctor is aware and very supportive of my adjusting the pressures to figure out what works. The new sleep doctor is suggesting bi-level might help get higher pressures without aerophagia.

Thanks for your help & suggestions!

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Re: Energized After Sleep Study But Not With Home CPAP?

Post by Krelvin » Mon Sep 29, 2014 12:15 pm

Your question about using a bi-level and going back.


With a Bi-Level Auto, you can set it to be used as a Cpap without bi-level.

The auto allows you more control if you need it and gives you full data access to see what is happening.

ref:
Joyful Sleeper wrote:Hi All,

My doctor is considering prescribing an auto bi-level machine with the hope that it will allow me to have higher minimum pressures without aerophagia symptoms.

I've read extensively on the board about the bi-level machines (thank you RobySue & Pugsy in particular but also to the others who've contributed to the various discussions of pros & cons and how the different brands work differently!) and am interested in trying bi-level.

That said, if I switch machines (through my DME & using insurance), I have to start over with a new rent-to-own contract (I won't get credit for the 5 months I've already paid for my current ResMed S9 Autoset), and if I switch back, I have to start over again with month #1 on a non-bi-level machine. So I'm wondering, ARE THERE ANY DISADVANTAGES TO BI-LEVEL?

It seems to have a lot of potential upsides for my situation, but just wondered if there would be any downsides.

I'm also curious if any of you have suggestions regarding:

*Air Curve V10 Auto or S9 VPAP Auto? Should I wait a month (according to cpap.com the estimated release of the Air Curve series is the end of October) to get the new ResMed Air Curve V10 Auto Bi-Level or take the current ResMed S9 VPAP Auto Bi-Level?

*PR versus Resmed: My doctor and the DME have both said that ResMed machines break down less than PR machines so they are recommending ResMed and I'm already using a ResMed machine so I'm used to it. I'm curious about the PR machine because of the fact that the IPAP can increase without increasing EPAP and wondering if that is enough of an advantage for me (given aerophagia issues and relatively low pressures) to go with PR instead of ResMed?

If you're curious & haven't read about my personal journey on APAP you can see my previous post here:
viewtopic/t100510/Energized-After-Sleep ... -CPAP.html

Thanks for any feedback and advice!

Joyful Sleeper
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Re: Energized After Sleep Study But Not With Home CPAP?

Post by jnk... » Mon Sep 29, 2014 12:45 pm

I am sure that if you end up with a ResMed autobilevel, Pugsy will be of great help to you in your figuring out how to dial in the optimal settings for you.

Our brains are designed to notice changes more than constants. That's why the brain noticed especially the difference between previous nights of nonCPAP sleep and that night of CPAP sleep the morning after your sleep study. Your brain experienced something it may not have experienced for many years, so it rewarded you with the good feeling. After that, somewhat better sleep became a constant that the brain saw no reason to reward you for. (I love ending sentences with a preposition. YES!) That's an oversimplified description of it, but it is my opinion nonetheless.

Once you get sleep working a little better, you have to take advantage of that by upping your daily exercise and your diet and all that jazz. You can't do it all at once. But you can incrementally make adjustments here and there to start feeling better. CPAP is merely one small piece of the overall puzzle that is our day-to-day health and how we feel over time.

In my opinion.

And boy do I have a lot of them.

I'm sure you are gonna find your way to further solutions. Keep at it!

-Jeff
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Accounts to put on the foe list: Me. I often post misleading, timewasting stuff.