Help! Still Sleepy, MyEncore Reports, etc.

carla · Post by **carla** » Fri Dec 08, 2006 12:35 pm

I was diagnosed with apnea a year ago. 122 episodes a minute, prescribed a pressure of 13. I was bad...fell asleep uncontrollably every afternoon, would almost pass out after the least bit of exertion, etc.

Spent several months on my dad's old cpap and a new Swift Mirage. Saw a definite improvement, but there were lots of issues causing compliance problems. Finally got an apap with humidifier (respironics m series) and a hybrid mask which reduced the aerophagia, and fixed the mouth leaks that chin straps and tape didn't help.

I've been feeling some backsliding for some time now. Finally got Encore Pro up and running and then got MyEncore. My AHIs do get above 5.0 quite often, which I've gleaned from the board does indicate there needs to be some tweaks, but I'm not sure where to start.

My doc is pretty useless in helping. For example, when I complained that the aerophagia was way beyond "uncomfortable" the doc's solution was to dial back the pressure b/c "some pressure is better than nothing". Now I'm drifting off while driving and just dead tired by afternoon, and his solution is to come for a daytime sleep study to get a prescription of ProVigil. Why, so I can mask the symptoms of unresolved apnea? He refuses to do another night study even though I've lost about 30 pounds (190 to 160). Let's not even get into how he walks out of the room after only 15 minutes while I'm still asking questions--that would just be venting. ;>

Ok, I know I need a new doc, but in the meantime while I'm going crazy this month...could some of you savvy users take a look at my charts and lmk what advice you can offer to help me understand this more?

Maybe offer a good sleep doc reference for the Nashville area? ;>

I'll post my charts at http://family.wiseoak.com/carlacharts.html
sorry for the holes...didn't realize the card only held 5 days at a time...

I would really appreciate any help!
-Carla

curtcurt46 · Post by **curtcurt46** » Fri Dec 08, 2006 12:50 pm

You have some spikes where you show a high AHI with NR(non resolved apneas). I have experienced this a couple of times and could only figure out that my allergies had me congested just enough to cause worse breathing problems. Do you think you might have allergies or asthma?

What do you have your apap set for now?

I can't speak to the aerophagia, but I am sure some folks here will comment.

Keep at it and you will get results.

SelfSeeker · Post by **SelfSeeker** » Fri Dec 08, 2006 1:02 pm

Welcome to the boards Carla,

I am sure you will get a lot of info here.

I will start by asking you some questions which may help us help you.

Does your hybrid leak?

Do you have a copy of your sleep study and titration study.

Were you having a lot of central apnea in your sleep study. I see some centrals at the higher pressure.

You said you have the software. From the software can you tell were the apneas and hypoapneas are happening.

Do you know how with the Encore pro get a detailed summery of your night?

What pressure is your auto set to. It looks like it is set from 4 to 20 cm H2O.

Have you been "backsliding" since being on auto, or were there other changes as well?

I see data upto the 12 Nov, then again the 23 Nov until now. What happened in between. You were having less apneas hypoapneas and centrals before the 12 Nov and many more after the 23rd. What was the change from before the 12th and after the 23rd.

Without know more, and by what you said about a titration study at 13, I would suggest a pressure of about 10 to 15 or 16 and see how you do on that.

Also I may I suggest you remove your name from the charts.

Wulfman · Post by **Wulfman** » Fri Dec 08, 2006 1:09 pm

Looks to me like you have the machine set "wide open" (5 - 20). By setting it that way, you might be having alot of events at the lower pressures.
It also looks to me (from these charts) like your best pressure MIGHT be around 9.
I would suggest setting your machine in CFLE mode at 9 for about a week and see how the reports look.

Best wishes,

Den

greyhound · Post by **greyhound** » Fri Dec 08, 2006 1:13 pm

I'm guessing that your APAP is set for a 5-20 range which is much too wide. Where is your 90% pressure? (You can find it in either your Encore Pro "Full Details" report and/or in James Skinner's Encore Pro Analyzer).

For starters, I suggest setting your APAP range at 2 below and 2 above your 90% pressure. After a week at that level, you can test other settings.

Guest · Post by **Guest** » Fri Dec 08, 2006 1:53 pm

Does your hybrid leak?

not noticeably...occasionally out the side, but it usually whines then so I (or dh) notices and I correct it.

Do you have a copy of your sleep study and titration study.

Were you having a lot of central apnea in your sleep study. I see some centrals at the higher pressure.

the study shows "-" for Central Apnea Events...does that mean 0 or not recorded I wonder? The chart page does not have a Central Apnea graph, just Obstructive Apnea and Obstructive Hypopnea

You said you have the software. From the software can you tell were the apneas and hypoapneas are happening.

Do you know how with the Encore pro get a detailed summery of your night?

I can run the reports...just not always sure what it all means!

What pressure is your auto set to. It looks like it is set from 4 to 20 cm H2O.

7-20, with ramping up starting at 5

Have you been "backsliding" since being on auto, or were there other changes as well?

things weren't so good to begin with...that's why I wanted to switch. I've been on apap a few months now...it's gotten much worse in the last few weeks

I see data upto the 12 Nov, then again the 23 Nov until now. What happened in between. You were having less apneas hypoapneas and centrals before the 12 Nov and many more after the 23rd. What was the change from before the 12th and after the 23rd.

i was without computer access for awhile and my card only stores the last 5 days. Grrrrr.

at one point I upped the min pressure to 7.0 from 5.0, and I do know I've been successfully side-sleeping more (I hate back sleeping, but never could do anything else with the mask). Of course I can't remember when either of those occurred. I feel like an idiot--the longer this goes on the more cloudy-brained I get. I'll have to set up a system for recording all these variables.

Also I may I suggest you remove your name from the charts.

oops! didn't see my last name there...and we tried so hard to keep our last names off the site....thanks!
-Carla

Guest · Post by **Guest** » Fri Dec 08, 2006 2:01 pm

I'm guessing that your APAP is set for a 5-20 range which is much too wide. Where is your 90% pressure? (You can find it in either your Encore Pro "Full Details" report and/or in James Skinner's Encore Pro Analyzer).

It's set at 7-20. I was thinking that I'd leave it open to start and then see where tweaks should be. Of course by now I'm foggy-headed and that's not as simple as it seemed! ;> I think the 90% is usually 9, but sometimes much higher.

For starters, I suggest setting your APAP range at 2 below and 2 above your 90% pressure. After a week at that level, you can test other settings.

And if I keep a good journal detailing all my other variables, it should make that analysis easier...
Thanks!
-Carla

Guest · Post by **Guest** » Fri Dec 08, 2006 2:09 pm

curtcurt46 wrote:You have some spikes where you show a high AHI with NR(non resolved apneas). I have experienced this a couple of times and could only figure out that my allergies had me congested just enough to cause worse breathing problems. Do you think you might have allergies or asthma?

I definitely had some allergy issues going on when I started, but the Flonase has really helped with that. Frankly it's another reason I'd like another sleep study...to see what the results would be now that air can actually make through my nose!

But congestion is another item I'll need to track in my journalling....
Thanks!
-Carla

JohnD · Post by **JohnD** » Fri Dec 08, 2006 2:47 pm

Hi Carla,

I can relate to some of your problems, they were the same for me.

I have a Respironics M series auto with the CFlex and the Encore Pro software. When I first got the machine about a month ago, it was set from 4-20. I left it there and my AHI's were over 5.0 for those first few nights.....I posted those results here, and the concensus was to raise the min, since the best pressure was between 9-10...As soon as I raised the pressure to 8.5 and left it at 20, my ahi's came down to 1.0-2.0. I was obviously having a lot of the events at the pressure below 8.5. Also of interest, was the fact that when I also lowered the top pressure of 20 to 15, I had an increase in events, but not close to the 15, which is strange, so I am not sure what was going on there. In any case, I now have it set at 8.5 - 20 and my AHI's are in the 1.0-2.0 range, with a Cflex setting of 2.

Another factor for me, is my chronic nasal congestion. I posted what I do to take care of that, but some folks did not agree. I have been doing it this way for over 7 years without any negative consequences.....I use a cotisone nasal spray, Nasacourt. In that new bottle of Nasacourt, I add about 3/4 tsp of Afrin. That's the only way I can have my nose completely clear in order to use cpap. The amount of Afrin I use is so diluted, it takes about 7-9 months to go through a normal size squeeze bottle of Afrin. The negative affects of using Afrin full strength are not there. I have also tried the Breathe Right nasal strips, and those seem to help a bit as well.

Good luck and I hope you can get it straightened out to where you are feeling better!

carla · Post by **carla** » Fri Dec 08, 2006 2:58 pm

Ok, I've reposted my charts, this time without my last name. And I did it with Encore Pro Analyzer, which I downloaded today, so there should be more info.
http://family.wiseoak.com/carlacharts.html

After a week of new settings and good journaling <fingers crossed>, I'll post another set.
-Carla

Snoredog · Post by **Snoredog** » Fri Dec 08, 2006 3:00 pm

Your leak is HIGH, it may be skewing your results but your ideal pressure seems to be 6.0cm to 10.0cm Maximum. The machine is also "misreading" your central sleep apnea events as obstructive. LIMIT your Max. pressure to 10.0cm!!!

Set your M series to:

Mode=AFLE
Min=6.0cm
Max=10cm
CFlex=2

AutoRamp=6.0cm, 30 minutes (use when pressure wakes you during the night).

Based upon your reports there is NO reason for you to allow your pressure to increase higher than 10.0cm (AHI vs pressure report). To change the machine, just hold down the <- -> arrows while plugging in the power cord in the back of the machine, then press the + key to enter setup, change the settings accordingly. +/- keys change values, arrows move to next field, On/Off button exits setup.

You may have other underlying disorders which can also cause you to be tired besides OSA such as allergies, hormones etc. You would need to get out your original PSG to see if any other disorders where noted that were seen by the PSG.

Can you put on your website a typical Auto-Daily report from EncorePro? You can save the report in PDF format. I'd really like to see Dec 4th's EncorePro report if you have it.

Try and control your leak rate, the central events you are experiencing is why you feel so lousy (guarantee it).

cillakat · Post by **cillakat** » Fri Dec 08, 2006 3:27 pm

caaarrrrrrllllllllaaaaaa! I'm so impressed with you getting around to posting this so quickly. Glad we talked this am - it was clearly motivational for both of us:) I'm here now to getting up to speed b/c you know and I both know that this level of attention to detail will hold absolutely *zero* of dh's interest.

katherine

carla · Post by **carla** » Fri Dec 08, 2006 4:05 pm

Snoredog wrote:Your leak is HIGH, it may be skewing your results but your ideal pressure seems to be 6.0cm to 10.0cm Maximum. The machine is also "misreading" your central sleep apnea events as obstructive. LIMIT your Max. pressure to 10.0cm!!!

My bloated belly loves you for saying that!!

You may have other underlying disorders which can also cause you to be tired besides OSA such as allergies, hormones etc. You would need to get out your original PSG to see if any other disorders where noted that were seen by the PSG.

I only have a 2 pager of my sleep study. The only other thing I can see is Periodic Limb Movements. My PLM Index was 20.4, and PLM Arousals per hour was 1.2. Anyone know what that means in context?

My thinking was that I wanted to at least try and get my AHI down under 5 before my doc put me on ProVigil. I really want to make sure the apnea is treated as well as possible before doing drugs. Maybe a new doc will be more open to helping me explore the big picture before heading to drugs.

Can you put on your website a typical Auto-Daily report from EncorePro? You can save the report in PDF format. I'd really like to see Dec 4th's EncorePro report if you have it.

Check it out at http://family.wiseoak.com/images/CarlaCarla.pdf
It's the last few days.

Try and control your leak rate, the central events you are experiencing is why you feel so lousy (guarantee it).

If I'm not waking with leaks to know when they happen...do I just experiment with different fittings and then check the chart the next day?

Will lowering the max pressure help with this too? Or is it leaks at 10 and less that are still the problem?

Thanks!
-Carla

Snoredog · Post by **Snoredog** » Fri Dec 08, 2006 4:43 pm

carla wrote:
Snoredog wrote:Your leak is HIGH, it may be skewing your results but your ideal pressure seems to be 6.0cm to 10.0cm Maximum. The machine is also "misreading" your central sleep apnea events as obstructive. LIMIT your Max. pressure to 10.0cm!!!
My bloated belly loves you for saying that!!

You may have other underlying disorders which can also cause you to be tired besides OSA such as allergies, hormones etc. You would need to get out your original PSG to see if any other disorders where noted that were seen by the PSG.
I only have a 2 pager of my sleep study. The only other thing I can see is Periodic Limb Movements. My PLM Index was 20.4, and PLM Arousals per hour was 1.2. Anyone know what that means in context?

My thinking was that I wanted to at least try and get my AHI down under 5 before my doc put me on ProVigil. I really want to make sure the apnea is treated as well as possible before doing drugs. Maybe a new doc will be more open to helping me explore the big picture before heading to drugs.

Can you put on your website a typical Auto-Daily report from EncorePro? You can save the report in PDF format. I'd really like to see Dec 4th's EncorePro report if you have it.
Check it out at http://family.wiseoak.com/images/CarlaCarla.pdf
It's the last few days.

Try and control your leak rate, the central events you are experiencing is why you feel so lousy (guarantee it).
If I'm not waking with leaks to know when they happen...do I just experiment with different fittings and then check the chart the next day?

Will lowering the max pressure help with this too? Or is it leaks at 10 and less that are still the problem?

Thanks!
-Carla

rested gal · Post by **rested gal** » Fri Dec 08, 2006 8:06 pm

Carla, thank you for putting the PDF of several nights of "Daily Details" from your Encore Pro report up on your website.

I'm not a doctor. Just guessing. I would strongly suspect GERD as the culprit interfering with smooth treatment from your autopap.

It was most interesting that the last "detailed" night (Dec 7 -8) showed a night of very smooth treatment and low AHI. If GERD is a problem for you, I'd think that was a night of not much acid reflux activity. And I'd wonder if the other nights were when GERD was acting up badly. Even if you have never noticed any signs of "heartburn", there's such a thing as "Silent GERD" with no symptoms that you'd notice. Can really wreck cpap treatment.

I'd look very, very seriously into untreated and/or undertreated GERD (gastroesophageal reflux disease.) If that is the problem, it isn't going to matter what mask you use, what machine, what settings. Positive Air Pressure is not able to push aside swollen, rigid tissues or spasming vocal cords. GERD (if that's an underlying problem) would have to be treated first.

Like I said, I'm not a doctor. Just my two cents.

Check out these topics:

Nov 05, 2005 subject: SUCCESS AT LAST-GERD,420E, PRILOSEC AND BENADRYL -SWS's thoughts on loonlvr's massive clusters of events and loonlvr's followup post.
viewtopic.php?t=5551

Oct 09, 2006 subject: My Sinus problem cure Kazoo's allergist doctor spots continued acid reflux problems despite Kazoo being on the "Purple Pill" (Nexium)
viewtopic.php?t=14189

Apr 28, 2006 subject: Articles about Acid Reflux, Sinus and Nasal congestion. Links posted by RestInSeattle
viewtopic.php?p=95185

Help! Still Sleepy, MyEncore Reports, etc.

Help! Still Sleepy, MyEncore Reports, etc.

Some of the same problems.....

Re: Help! Still Sleepy, MyEncore Reports, etc.