Philips Respironics Launches BiPAP autoSV Advanced Sleep Sys

[JohnBFisher]

I have been using the Respironics BiPap auto SV Advanced for approximately 2 months. When I first go to sleep the machine and I get along fine, but sometime during the night I wake up because of a constant flow of air rushing thru the hose causing noisy leaks around my FFM. If I turn off the machine a few minutes and restart, the flow is "normal" but later the constant rush of air again. Anyone have a suggestion as to what gives here?

See my reply to the "stand alone" post you made to CPAPtalk. It sounds as if you are losing the "seal" on your mask. The solution is to not decrease the upper pressure, but decrease the tendency to leak. Hope that helps.

[Mr Bill]

Hello all, I found this bulletin board useful when I was trying to make sense of my sleep apnea and I've decided to join.
I realized in July of 2010 that I was not sleeping. It was freaking hot summer, humid, and I started sleeping out on the couch on my back and then eventually sitting up because I felt like I was not breathing. I kept waking up realizing that I had not been breathing and it did not feel to me like I had been making any effort to breath. I decided I would bring it up with my Doctor at my annual physical and ordered a pulse oximeter from Amazon. Well, my pulse oximeter data showed alternating one hour of good oxygenation then an hour of ~40 second pulses down into the 70% and as low as 60% oxygen saturation with synchronized heart rate swings. So, my doctor looks at this and says classic sleep apnea and you have just the body type for it. I thought he meant I was fat, but I found out later from a tech, that he was referring to my 18-19 inch neck. I told my doctor I was sure I had central sleep apnea and he scoffed. Its about 5pm on a friday 9/19/10 and he turns me over to his physicians assistant be scheduled for a sleep study. He is a very upbeat guy and said he has a ton of people on CPAP's and soon I would be right as rain. The physicians assistant calls the sleep lab and the next available slot is over a month away. I am desperate for sleep at this point and so I ask if there is possibly a cancellation list. She says sure, do I want to be on it? She does some typing and then says, can you be there tonight? Yippee!

The sleep lab here is in the Mariott Residence. Its very nice, I get the complete wiring up chest and belly bands, several nasal cannula, microphones, cameras, leg electrodes, heart, head, face, electrodes pulse oximeter and the whole works, and we start me trying to sleep. After a few hours he comes in and tells me he know what is wrong but we have to try this nasal mask and attempt to fit me for CPAP or BIPAP even though he is sure I will have to have something called an ASV. I am like h3ll no! but give me a few minutes, let me put it on loosely and get used to I wearing something that looks like it will suffocate me in my sleep. He tells me its always the big guys who are the ones to react this way. He also tells me then its my neck size that makes me the typical CPAP candidate. I have mild asthma and have become sensitive to confined spaces, which make me fear I may not be able to breath. So we strap on and try all the settings. After hours of sleeplessness. He comes back in and tells me the diagnosis. I have profound, severe, complex, sleep apnea. I would need to come back for a second sleep study to fit me for an ASV.

During this first study, there was an observation period of 4.5 hours during which I actually only got 75 minutes of no REM sleep (24% sleep efficiency). I was having a respiratory disturbance index of 76 events per hour and apnea/hyponea index of 67.7 events per hour. 59 of the 84 events during actual sleep were central events and persisted during the titration period between 7cm (51 CA/hr) and 10cm (68 CA/hr) of CPAP. Lowest oxygen saturation during that first study was 81%. The next sleep study was scheduled for 11/12/10, so I had a couple months to survive till then. This was a low point for me. I was super tired and not at all sure there was any hope. Now, I have no idea if my little wrist pulse oximeter was accurate and I did not wear it that night. But at home I was seeing desaturation down to less than 60%.

So, I found a couple mechanisms for coping while I waited for the next sleep study. I skimmed many papers linked off the wikipedia site for sleep apnea. and found one that said that central events decreased if pulmonary insufficiency was induced. So, if I was reading it correctly, what I needed to do was scrunch up my lungs to decrease the breathing volume and I might actually breath on my own due to greater accumulation of CO2 in the smaller lung volume. I was wearing my pulse oximeter each night. I did this scrunching thing sleeping upright or on my side or leaning upright against a pile of pillows and scrunching to reduce my ability to take a breath. Sure enough it worked, instead of totally stopping breathing when I fell asleep I breathed shallowly and rapidly and my oxygen saturation stayed above roughly 70% and mostly above 80%. So, that makes me wonder. Before I started sleeping on my back to combat GERD, I slept on my stomach which if not for heartburn may have restricted my breathing. Maybe thats why this central apnea problem had not previously been apparent.

So the next sleep study with the ASV was 11/12/10. This time, I show the tech my pulse oximeter data and he opines that it looks like REM specific sleep apnea which is typically obstructive rather than central. Its a trying night, he felt we had to try titration with oxygen first. This was because I brought along a sleep study from my mother (done in that lab a year before) which showed that she also had central apneas and that an oxygen cannula was sufficient to fix her problem. He said we had to spend the first part of the night trying oxygen. I get all wired again and this time I brought a camera so I could get a picture of at least the wiring job. I was praying at that point that a simple oxygen cannula would be all I needed. But after a couple hours the tech comes back in and tells me there is no setting that does not make it worse.

So, its mask on and try try to fall asleep for the second half of the night using the ASV. So uncomfortable, and the ASV kept waking me up as it tried to learn my pattern. It would get ahead of me or fall behind me and finally it began to gently puff air just as I stopped breathing but without waking me up. So, in the wee hours of the morning, I finally fell fully asleep. The tech was elated, he got 1.5 hours of data, including REM sleep, which he needed to be able to make the final diagnosis. I can't tell you how profoundly good I felt for the next whole week. Um, I don't know much about stages of sleep but 26% was stage N1, 28% was stage N2, 36% was stage N3, and 10% was stage REM. That was more rest that I had gotten all fall! The tech apologized for being excited about me but said not only is central sleep apnea rare but I seem to have a rare response he said the brainwaves showed I have full arousal from each central event and that they become worst during rem sleep. He said most people are unaware they are having central events But that because I was having this arousal after each event, was not surprising that I was aware I had not been attempting to breath. He tells me that my apparent good pulse oximeter data is the reverse of what a doctor would think looking at it. When I have good oxygenation and heart rate, I was lying there awake, each time I fall into rem sleep, the apneas start and they are almost all central events.

The tech was puzzled about why I should be developing sleep apnea so suddenly in my 50's and asked if I had made any lifestyle changes. Well, as it happens, I suffered from this little cough all the time and worse when I was tired for at least 25 years and even back when my 5'11" frame only had 170 pounds on it. I got diagnosed with asthma in 1994 and nothing seemed to be able to stop this coughing when I was tired. Now, I was not particularly a snorer and preferred to sleep on my stomach. In May of 2008 my nephew had been getting migraines and crazy asthma like symptoms and he was not at all chubby. When they did an allergy panel on him, he was not allergic to anything! The Dr said it was GERD. I ticked off the symptoms and in a blinding Mentat moment realized these were mine. That same day, I bought three 2"x6"x4' boards and stacked them under the head of my bed to elevate just the head of my bed by 6 inches and I made myself sleep on my back instead of my stomach. After three days my heartburn and my asthma symptoms nearly disappeared!. I no longer have a sinus drainage problem. Apparently the vagus nerve gets stimulated by GERD and in turn it switches on your sinuses which give you allergy symptoms or make mild asthma worse. But interestingly, at the end of the summer, in October I suddenly became nearly sleepless for a couple months and jumped from 235 to 255 pounds then it abated. Then this all came back in spades in July of 2010 perhaps because of the high temperature and humidity (we have a swamp cooler). Personally, I think these events are related. The sleep tech said I might have never had obstructive apnea before because I was sleeping on my stomach and then when I started sleeping on my back, I started getting obstructive apnea. When this apnea started in July my weight again went up and has peaked at just over 265.

I got my ASV on 11/19/10 and its been interesting adapting. My unit is set wide open with the exception that after a few weeks of having problems first getting asleep, we decided to add a back up rate of 8 breaths per minute (an initial attempt of 12 was too high and the unit was pounding me as I tried to drop off to sleep). I seem to be doing pretty well now with min EPAP setting of 6, 90% of EPAP at 7.0. Min Pressure support is 3 and average pressure support is 4.1. Those settings limit my AHI's to around 1-3/hour. I can always tell on the pulse oximeter data if I take the mask off while asleep. The unit prefers to have me breath very quickly 17-18 bpm with minute volumes of 8-9L/min The really cool news is that my morning blood pressure had steadily dropped from 150-160 over 100-110 down to under 120 over under 80 and my pulse had dropped from mid 80's down into the low 70's. So far, my average hours per night are only 5 but I am working on getting more long nights of sleep. I am still waiting for my weight to begin dropping. It has dropped down from a peak of 264 (gasp!) to 258 over the last two weeks, I hope it becomes a trend, the Dr says there is a very good chance I will loose weight rapidly.

Costs so far, two $2500 sleep studies, two $600 sleep interpretations, But after insurance juggling, those costs became $4000 out of pocket.
$8750 for the ASV unit which I realize can be had on line for $5800 but again my insurance company prefers to use a provider and rent the unit so my cost after out of pocket is $121/month.

6/22/11 I just learned my DME was "renting" me this unit assuming my insurance was covering 70%. Heck no says my insurance and now I find the true "rental cost" is $467/month! I called my insurance provider and noted that I had nearly met my $5000 deductible in 2010 when they decided to "rent" my ASV presumably to avoid paying for it. They said "we would never do that" and told me to tell my DME to re submit the entire cost as of the day I got my ASV in 2010. So, now it should be mostly paid for. Yippie! I certainly cannot afford $467 a month for the ASV, $100 a month for my asthma and blood pressure RX, and $320 a month for my insurance!

I've added or corrected a few details to this post as I recalled them.

[rested gal]

What a great story and wonderful outcome, Bill.

Hope you'll keep us posted on how it continues to go for you!

[Mr Bill]

Thank you rested gal,

Its been very interesting. I'm a geochemist and currently work in an environmental lab so I love being able to measure things. My doctor and the techs were fairly surprised when I showed up with spreadsheets and plots of data. I bought the Encore Viewer 2.0 software after seeing here that you guys were using it.

I have a question. Does Encore Viewer 2.0 software drop all but the last few detailed reports? I got the software Jan 25 and suddenly all I can see in detail is Feb 14 to present. Whats up with that.

I need to get to sleep but I've always been a night owl and having gone for so long without sleep its hard to go to bed and put on the mask. But its getting better.

[mdboze]

Does Encore Viewer 2.0 software drop all but the last few detailed reports?

The smart card holds one week of detailed data.

Things to remember:
Continue to come here for support and advice. I would have given up out of frustration without all the support I got here when I started about a year ago.

Stick with it! Eventually it will seem so normal that it becomes part of your bedtime routine helping you get to sleep faster. Mask on = sleep time.
Learning to adjust my own settings really made a difference for me.
Try different masks if necessary.


Good luck.

[JohnBFisher]

... The tech was puzzled about why I should be developing sleep apnea so suddenly in my 50's and asked if I had made any lifestyle changes. ...

It also could be there might be a genetic factor in this. Since you indicated your mother also had similar issues. It could be something that just happens in your family as you age.

... I got my ASV on 11/19/10 and its been interesting adapting. My unit is set wide open with the exception that after a few weeks of having problems first getting asleep, we decided to add a back up rate of 8 breaths per minute (an initial attempt of 12 was too high and the unit was pounding me as I tried to drop off to sleep). ...

Believe it or not, you will reach the point where you do not even notice when the machine kicks up the pressure. I know this from personal experience. When I start to fall asleep, I stop breathing. Period. Though some central apneas as you fall asleep or awaken is really normal, my central apneas last a minute or more at a time. Try holding your breath that long. It's not long before your body is screaming for you to BREATHE ... NOW !! But with this machine, the pressure just ramps up and as I drift to sleep my normal breathing returns. The machine is providing adaptive servo-ventilation (ASV) during these times when I stop breathing. The theory (and it seems to work) is that by sustaining breathing during a central apnea, it helps break the cycle of undershoot (not breathing or very shallow breathing) and overshoot (slight hyperventilation that occurs afterwards). Essentially the hyperventilation to compensate for the hypoventilation tends to take too much of the CO2 out of the blood. That then sets the stage for another cycle. Because the CO2 is low, the body then does not have the drive to breathe ... and the cycle repeats ... over and over and over again. That used to make going to sleep almost impossible for me.

It sure sounds as if the same thing is happening to you. The good news is that the ASV unit you have is one of the best available to help address your problems during sleep. Yes, it's expensive, but it is worth every penny.

Thanks for posting your adventure during your journey toward better sleep. As you can see there are several of us that use ASV units in this forum. So, welcome to the crew! And may your dream of more dreams become a reality for you!

[Mr Bill]

... The tech was puzzled about why I should be developing sleep apnea so suddenly in my 50's and asked if I had made any lifestyle changes. ...

It also could be there might be a genetic factor in this. Since you indicated your mother also had similar issues. It could be something that just happens in your family as you age.

Yes, the sleep tech told me central apnea can run in families and that I should encourage my younger brother and sister to get tested. My sister checks out OK on the pulse oximeter and my mom does when she is using oxygen while sleeping. My brother refuses to be tested and says its "your condition". He snored quite loudly at Christmas but is in denial. My youngest brother died 4 years ago of a heart attack. His wife after learning of my condition says he probably had sleep apnea and that grieves me. I think you are correct that it could be age related. But, being a geochemist, I do not rule out exposure to fumes or solvents in the many labs I have worked in over the years.

I think I am pretty fortunate, the sleep therapist who takes care of my machine settings is specialized only in sleep therapy has a good working relationship with the sleep doctor who wrote the prescription, my doctor, and a cardiologist. The therapist told me that cells in my blood vessels, heart, and brain all need to be reset to expect higher blood oxygen and respond more quickly to CO2. He said this could take months.

[Mr Bill]

... The theory (and it seems to work) is that by sustaining breathing during a central apnea, it helps break the cycle of undershoot (not breathing or very shallow breathing) and overshoot (slight hyperventilation that occurs afterwards). Essentially the hyperventilation to compensate for the hypoventilation tends to take too much of the CO2 out of the blood. That then sets the stage for another cycle. Because the CO2 is low, the body then does not have the drive to breathe ... and the cycle repeats ... over and over and over again. That used to make going to sleep almost impossible for me.

It sure sounds as if the same thing is happening to you. The good news is that the ASV unit you have is one of the best available to help address your problems during sleep. Yes, it's expensive, but it is worth every penny.

Thanks for posting your adventure during your journey toward better sleep. As you can see there are several of us that use ASV units in this forum. So, welcome to the crew! And may your dream of more dreams become a reality for you!

So are those of us who have strong central component experiencing something that looks likeCheyne-Stokes respiration or periodic breathing?

[tonycog]

I have a question. Does Encore Viewer 2.0 software drop all but the last few detailed reports? I got the software Jan 25 and suddenly all I can see in detail is Feb 14 to present. Whats up with that..

You can still see the detailed data, but you need to tell the software which dates you want to see. If you run a report, simply change the dates of the report that you want detailed data for. If you want to see details for January 1 through 5, choose those dates to get a report from. But, if you choose, for example, January 1 through February 28, you will get details for Feb. 22 through 28, along with totals for then entire two months of dates you requested.

Best wishes,
Tony

[Mr Bill]

....But, if you choose, for example, January 1 through February 28, you will get details for Feb. 22 through 28, along with totals for then entire two months of dates you requested.

That part is as you say.

However...

....You can still see the detailed data, but you need to tell the software which dates you want to see. If you run a report, simply change the dates of the report that you want detailed data for. If you want to see details for January 1 through 5, choose those dates to get a report from.

Say, I do that. I see a shorter initial summary range, but the detail stuff is still Feb 22 through 28 (the most recent 7 days). So the detailed stuff for anything earlier than the most recent 7 days is apparently lost in the sands of time. Or maybe my card data is corrupted?

[Pugsy]

Say, I do that. I see a shorter initial summary range, but the detail stuff is still Feb 22 through 28 (the most recent 7 days). So the detailed stuff for anything earlier than the most recent 7 days is apparently lost in the sands of time. Or maybe my card data is corrupted?

With EncoreViewer 1.0 (and maybe 2.0) we could select 7 days from the calendar other than the most recent 7 days and get detailed reports for those days. Example Dec 1 thru 7.

With Encore Pro 2 I have not been able to isolate any detail data from the Therapy Data tab that is over 7 days old despite changing the time parameters and even excluding the most current data. When I do that I get summary for old days but no detail data. This is while in the "Therapy Data " tab BUT if I go to the History tab there are all the days that the data has been downloaded and choices for Summary, Trend, & Detail. If you click on a single download date and time DETAIL, it will show the old reports. Example, I just clicked on the Feb 3 date of download and I just saw 1/28 report in detail as well as the summary stuff.

[tonycog]

So the detailed stuff for anything earlier than the most recent 7 days is apparently lost in the sands of time. Or maybe my card data is corrupted?

I just realized that I am using Encore 1, so this may be different in version 2. In Encore 1 I just tried this to be sure I had it right. I asked it for a report for November 22 through 27, 2010. I got all 6 of those days with detailed data for each sleep session. At least in Encore 1.X, the details are still there.

Tony

[Mr Bill]

Sounds like I might need to get a copy of version 1. There are no 'tabs' in version 2. I will first try reinstalling the software; maybe the installation had been corrupted.

[Pugsy]

Mr Bill,
Oops my bad. I misread which software you have. The tabs are only in Encore Pro 2.

I don't have EncoreViewer 2.0.

I do have EncoreViewer 1.0 and what Tony says will work.

They may have taken the feature out of EncoreViewer 2.0 where we could go back on the calendar and choose old dates. Heck, we could even choose a single night for a report, no need for multiple nights. This was EncoreViewer 1.0 though.

[JennyJones]

Wonderful sharing thanks