BiPAP? Met with the sleep doc's PA and didn't expect this

[robysue]

It's eight weeks today since I started CPAP/APAP therapy. And I apologize in advance for the length of this post. But I need a place to reflect and talk about what I've been through so far. I've had no problems adjusting to the Swift FX nasal pillows mask: I have no real problems keeping the mask on all night and I've learned how to get to sleep with the mask on if I am sleepy enough. No problems with leaks either: Median leak is always 0.0, 95% is most commonly between 0.0 and 3.5, with occasional readings in the 5.0-6.0 range, and max is always well below the red line in ResScan.

But overall, my CPAP/APAP therapy has not been going very well in many ways:

First I was titrated at 9cm and the S9's over night numbers showed really good AHI's (mostly below 1.0). But I also suffered severe problems with air getting into both my stomach and my eyes through my sinuses and tear ducts. Also the pressure and newness of the CPAP machine and a particularly bad night with aerophagia (complete with a dream of being a goose being force fed for fattening up for foie gras) triggered some really severe bedtime insomnia to kick in. And within a week of starting CPAP, I was more exhausted and more sleepy (in the daytime) than I have ever been in my adult life. [Pre-CPAP, daytime sleepiness had never been a problem for me.] The sleepiness actually got to the point where I felt like I was unsafe driving and I was completely out of it mentally most days at work. So a call to the doctor's office resulted in a meeting with his PA. She ordered a week of auto-titration.

A week later, at the next followup appointment, I was still extremely tired and sleepy during the day and still felt much worse than I did pre-CPAP. But I also felt much better than I had felt one week earlier. During the autotitration, I had no problems with air in the tummy or eyes, and for the most part, the AHI's continued to look about the same. Although there was one day that it was above 2.0 for the first time. The PA ordered a change from CPAP at 9cm to APAP at 4--8cm. That was back on Oct. 19.

Since then, I've had a few problems with aerophagia (but nothing as bad as those first two weeks) and the insomnia has stablized and is under control through paying major attention to sleep hygiene. But I have still not regained my pre-CPAP strength, energy, or overall quality of (daytime) life. And I still am having real problems concentrating on things during the day. I'm sleepy most of the day and find myself yawning continually. And yet, I still can't get to sleep before 1:00 or 2:00 in the morning on many nights. In the last week or two, I've started waking up (for no reason that I can determine) several times each night. So far, I've been able to get back to sleep pretty quickly. In the morning I wake up with a headache that is different than the headaches I used to wake up with, and it usually hangs around all day long---it kind of reminds me of my TMJ headaches from a couple of decades ago, but I'm wearing my night guard every night and I don't think I'm grinding my teeth anymore than I normally do and the night guard is in good shape. And in the last three weeks, my AHI's have started to fluctuate: I'll have AHI's below 1.0 for a day or two, and then I'll have AHI's above 3.0 (one was 5.6) for 2 or 3 days. When I looked at the data, I also noticed that on those bad days, there times where I was having 10 or 20 apneas in no more than an hour or an hour and a half. [And I only had 14 apneas during the entire diagnostic sleep study---my pre-CPAP problem was mainly with "hypopneas with arousal".] And I've developed a hoarseness that is deep in my throat---below my larynx really---that doesn't feel like anything I usually get from a cold or post nasal drip. And overall, I just don't feel like I am sleeping very well. I don't know how to describe it---it's just that my sleep feels "wrong" like I'm still having too many arousals in spite of the APAP and the (usually decent) AHI numbers the S9 reports.

After a couple of really bad nights in a row, I called the sleep doctor's office to report all of this on Tuesday. The receptionist called back after relaying my concerns and asked if I wanted to come in on Thursday. I thought about it, and decided, what the heck, I might as well go in and speak to the PA in person instead of playing phone tag. Of course, Tuesday night and Wednesday night were both good nights, and so today I was feeling decent enough---almost back to my pre-CPAP normal.

In the meeting with the PA, I gave her summary data for each week since she last saw me as well as the events graphs for the four or five worst nights in the last 2 1/2 weeks. (She said thank you, looked at them, asked if they were for her to keep, and said they'll be useful. She didn't ask how/where I got them or the software.) I told her what's about the same and what's different (both good and bad) and said that my sleep just doesn't feel "right". Among many other things, the PA said that she and the doctor have talked about my case. They're impressed with my compliance (100% right from the start). And since I couldn't tolerate CPAP at 9cm due to aerophagia and eye problems, the AHI's are starting to increase, I'm beginning to have clusters of 10-20 apneas on the APAP running 4--8, and I am still feeling worse (on most days) and no better (on any day) than I did pre-CPAP, the doctor wants to schedule a BiPAP/VAP-S titration to see if I'll do any better on that kind of a machine since "aerophagia is less of an issue with BiPAP". She also indicated that for insurance purposes, my failing to adjust to CPAP/APAP will need to be documented---apparently they have everything they need for this, including "trying alternate mask styles" since I couldn't even get a nasal mask on my nose during my original titration without uncontrollable sneezing. And that they'll have to prove that I will do better on BiPAP/VPAP-S, hence the need for another sleep study.

BiPAP? I really didn't see this coming. At any rate, I've got the BiPAP/VPAP-S titration study scheduled for Tuesday and a followup appointment with the PA on Nov. 30.

Why BiPAP? Would it allow me to tolerate a bit more pressure on inspriration as a way to keep the number of apneas down? Would the lower pressure on expiration help prevent the problems I had with air in my stomach and eyes?

And how is BiPAP/VPAP-S different from simply using the EPR feature on the S9? My EPR setting is 3 right now. From what I remember about EPR, at my current pressure range (4--8), the EPR is lowering the exhale pressure to 4 until the pressure rises to above 7. And then the exhale pressure should be 3cm less than the inhale pressure. So how would BiPAP or VPAP-S be any different given that I've never been titrated above 9cm.

[Slinky]

I may not know what I am talking about - but a VPAP S is more than "just" a bi-level PAP. I'm pretty sure the S stands for Spontaneous and what that means, I think, is that if you don't start to breathe on your own or take too long to take a breath, the PAP will initiate the breath for you. Did you have many Central Apneas during your sleep evaluation or titration?

[rested gal]

And how is BiPAP/VPAP-S different from simply using the EPR feature on the S9? My EPR setting is 3 right now. From what I remember about EPR, at my current pressure range (4--8), the EPR is lowering the exhale pressure to 4 until the pressure rises to above 7. And then the exhale pressure should be 3cm less than the inhale pressure. So how would BiPAP or VPAP-S be any different given that I've never been titrated above 9cm.

BiPAP is Respironics' trademark name for their bilevel machine.

VPAP is ResMed's trademark name for their bilevel machine.

Bilevel machines are set for two separate pressures -- a lower pressure for exhaling, and a higher pressure for inhaling.

"EPR" (ResMed's trademark name for its pressure reduction when you exhale) is not quiiite like true bilevel pressure reduction when exhaling. EPR doesn't drop the pressure immediately to whatever reduction level its set for (EPR "1" for a 1 cm drop, EPR "2" for a 2 cm drop, EPR "3" for a 3 cm drop.) EPR does drop the pressure, but it goes down as the exhalation progresses. A bilevel machine, on the other hand, drops the pressure immediately when you begin to exhale...dropping it immediately to whatever the lower EPAP (the exhalation pressure) has been set for.

That may sound confusing, but the difference in how EPR winds the pressure down as the exhalation continues, and how a true bilevel machine drops the pressure down completely at the beginning as well as throughout the exhalation, could very well make a big difference in how your therapy goes.

I think the physician's assistant is smart to suggest having you try a bilevel machine. It may or may not give you improved therapy, or help with the aerophagia, but given the problems you've been having, it's certainly worth a try.

I don't need bilevel therapy, but I use a bilevel machine anyway. I really like the complete pressure relief bilevel gives when I exhale...feels more like natural breathing to me than either ResMed's "EPR" or Respironics' "C-Flex." That's not true for everyone, of course. If bilevel suits you, I think you'll find it very comfortable to use.

I may be wrong, but I think "S" (yes, that stands for "Spontaneous") means the machine will simply follow the person's breathing. I don't think it will switch on its own the way an "S/T" machine set for a timed backup rate, does.

Of course, any bilevel machine is going to deliver the higher IPAP pressure for only so long. There's a built-in maximum amount of time that any bilevel, even the plainest of the plain bilevels, will blow the higher IPAP pressure at the user. After so many seconds, any bilevel will revert down to the lower EPAP pressure, even if the person has not started to breathe out. But unless it's a bilevel with "timed" capability (an S/T machine, or an ASV machine) and is set with a backup rate of so many breaths per minute, it's not going to switch up to the higher IPAP pressure until the person actually starts to breathe in again.

[JohnBFisher]

Great summation of your situation. No need to apologize that you provided the detail.

Rested Gal's response is, of course, spot on. So, let me add some detail in answer to your questions

... Why BiPAP? Would it allow me to tolerate a bit more pressure on inspriration as a way to keep the number of apneas down? Would the lower pressure on expiration help prevent the problems I had with air in my stomach and eyes? ...

Yes, it is much more natural the CPAP for many people. In my own case, a sleep technician noted that I had a lot of spontaneous arousals while using a CPAP. This is why I *know* that just the numbers from a xPAP machine are not enough for doctors. What was happening in my case is that while using CPAP I would arouse a little bit. That is when you look at the sleep stage progression I would go down to stage 2 non-rem sleep and then back to stage 1 and then back to stage 2 and then down to stage three and back to stage 2 and back to stage 1 and down to stage 3 and back to stage 2 ... Along with that, even when I stayed at the same stage, I would have a lot of intrusion of alpha wave activity (signifying wakefulness) in the middle of my various sleep phases. They were not tied to any pain, or movement, or ... They were spontaneous and unexplained.

So, the sleep tech tried BiLevel therapy. And guess what? The spontaneous arousals dropped dramatically. And the sleep stage progression became much more normal.

My sleep doctor at the time (and the sleep tech as well, based on that report) felt that when breathing against the constant pressure was causing my body to fight more than it should. But using two different levels of pressure meant that I could breathe more easily and attain better sleep.

I speculate that your doctor and PA think that you may also sleep better and might be having similar issues with spontaneous arousals. Also remember, there is no way to record those spontaneous arousals without the EEG. So, you will need the second sleep study to show how you do using BiLevel therapy.

And the benefit is the difference in the inhalation and exhalation pressure means you tend to have less air going into the stomach. And you tend to have less problems with eye irratation and ... Since it is much more like normal pressure while breathing, the body tends to work more naturally.

... And how is BiPAP/VPAP-S different from simply using the EPR feature on the S9? My EPR setting is 3 right now. From what I remember about EPR, at my current pressure range (4--8), the EPR is lowering the exhale pressure to 4 until the pressure rises to above 7. And then the exhale pressure should be 3cm less than the inhale pressure. So how would BiPAP or VPAP-S be any different given that I've never been titrated above 9cm. ...

With BiLevel therapy you probably can be titrated higher than 9cm H2O. In fact, the difference between the two can be quite high (10cm H2O or more), though it tends to be in the range of 4 to 6cm H2O between inhalation and exhalation. I would expect you would be fine with a smaller gap. And the difference between EPR and BiLevel is quite remarkable. Though EPR reduces the pressure, it is not the same as BiLevel. BiLevel actually provides breath support during both the inhalation and exhalation cycles. EPR does not provide breath support during the exhalation. This difference can cause arousals in some people.

Here's hoping your adventure continues well. And as a note you appear to have a great medical team. Keep us posted!

[jbn3boys]

Thank you for the informative responses to this question. I've been questioning bilevel, since I found out that I was actually on bilevel during my sleep study. You have helped to answer some of the questions that I have had regarding the differences between bilevel and auto with the ERP (or Aflex, in my case). I'm certainly still learning.

[robysue]

I want to give a great big THANK YOU to both Rested Gal and JohnBFisher for your thoughtful and informative responses to my post. The information has helped me to begin to understand why my PA wants the Bi-level titration done. [It's already scheduled for Nov. 23, and I've got a followup appointment scheduled on Nov. 30.]

Rested Gal's explanation of the difference between Bi-level and EPR makes a whole lot of sense---it's not confusing at all to me now. The critical differences seem to be in the time the pressure goes down (relative to the breathing pattern) and the more obvious ability to set the pressure difference to a number greater than 3cm. It was that first part that I was missing.

I also appreciate both Rested Gal and JohnBFisher pointing out that breathing with a bi-level might feel more natural to me. Even with the 4--8cm range I'm currently using, I don't find breathing with the APAP to be particularly "normal" in any meaningful way---even with EPR set to 3. At 4cm, it's fine enough since the pressure is so low that I don't notice it, but when I wake up with the Pressure above 7cm, I really don't feel like I'm breathing in anything that passes for feeling "normal" either on inhale or exhale.

Yes, it is much more natural the CPAP for many people. In my own case, a sleep technician noted that I had a lot of spontaneous arousals while using a CPAP. This is why I *know* that just the numbers from a xPAP machine are not enough for doctors. What was happening in my case is that while using CPAP I would arouse a little bit. That is when you look at the sleep stage progression I would go down to stage 2 non-rem sleep and then back to stage 1 and then back to stage 2 and then down to stage three and back to stage 2 and back to stage 1 and down to stage 3 and back to stage 2 ... Along with that, even when I stayed at the same stage, I would have a lot of intrusion of alpha wave activity (signifying wakefulness) in the middle of my various sleep phases. They were not tied to any pain, or movement, or ... They were spontaneous and unexplained.

John---thanks for mentioning this to me: I too had a large number of spontaneous arousals, that like yours, were not tied to anything identifiable ane were unxplained, during both my diagnostic sleep study and my titration study. And in fact, both the raw number of these spontaneous arousals and the Spontaneous Arousal Index in the titration study were both basically double the numbers from the diagnostic study. And I never did get to Stage 3 in the titration study, even though I did have some Stage 3 in the diagnostic study (about 10% of total sleep time, if I recall correctly).

And while there's no way to clearly identify whether those spontaneous arousals are continuing to bother me without an EEG attached to my head while I'm asleep, maybe the fact that I simply don't feel my sleep is "right" in some hard to describe way is an indication that I'm having arousals of some sort even on the nights where the AHI numbers are great.

As for last night: It was a real mixed bag. On the plus side, my AHI numbers were great: AHI = 0.9, AI=0.3 [which given that I had the machine on for about 6 1/2 hours, means that I had somewhere around 7 or 8 events all night. On the negative side, I woke up about really frequently---I think the longest I actually slept was about a two hour or 2 1/2 hour period. And on two of the times I woke up, it took a long time to get back to sleep. So the insomnia is raising it's ugly head and at the same time trying out a new insidious strategy for keeping me from getting a good night's sleep. So overall, I've felt about the way I felt pre-CPAP on a night where I tossed and turned all night long: Plenty tired and somewhat groggy as well, with a pretty nasty headache.

So in immortal words of Scarlet O'Hara: "Tomorrow is another day!" and maybe tonight I'll finally get some sleep that allows me to function in the daytime. And your responses have also helped me start thinking of this latest turn of events in a positive and more optimistic light: Maybe there really is a reason that my sleep still seems disturbed and unrestful and maybe there will be a treatment for my apnea that doesn't create so many additional side affects as to adversely affect my quality of life. Again, thanks for taking the time to give me some insight into what my PA and doctor are talking about.

[jnk]

Your questions were already answered perfectly, in my opinion. But that never stops me from throwing in my 2 cents!

As has been said, bilevel can be more comfortable, so you may sleep better. Bilevel may allow your breathe-in pressure (IPAP) to be high enough to stabilize your airway without causing aerophagia, since EPAP can stay lower. (A few people, I believe, have found their aerophagia has worsened with bilevel, but that is by no means the rule, so it is well worth a shot.) Autobilevel (a bilevel that can automatically titrate) is what I use. Just so you know they exist.

And don't feel bad about being surprised at the suggestion of bilevel from the PA. The thought didn't even cross my mind as I read your earlier threads, and I USE one!

Dang, but those professionals DO come in handy sometimes!

I hope the titration and use of bilevel go well for you. You deserve some good nights.

[Slinky]

jnk, I GOTTA ask .... are these self-portrait sketches you have used from time to time as your avatar?? I believe this is the second one?

[jnk]

jnk, I GOTTA ask .... are these self-portrait sketches you have used from time to time as your avatar?? I believe this is the second one?

Well, yes and no, Slinky. They are computer-generated images made from photographs of me, made to look like sketches.

[robysue]

jnk,

Thanks for your two cents too---both on this thread and on others that I've posted. You also say:

Dang, but those professionals DO come in handy sometimes!

Yep, seems to me just when I'm ready to write off the professionals, one of them actually listens to me, thinks about what I've reported, and then comes up with something to try to make things better.

[Slinky]

Neato, jnk!

[spinifex]

robysue, i wish you well and hope it works out for the better for you.

Jon

[Muse-Inc]

Thanks RG & John F, esp regarding spontaneous arousals...quite interesting, will tuck it away in case I need it later. 1/6 of my arousals were spontaneous and my index was 30, very fragile sleep at best. Still have wakeups, usually go back to sleep but since falling on that shoulder, the number is higher as the pain wakes me up & sleeping on my back very uncomfortable let alone the increase in my AHI... ah well, it is improving. But thanks again yiu 2, great info!

RobySue, wish ya the best in this next adventure...maybe it'll really help!

[JohnBFisher]

As I understand it, doctors like to try CPAP therapy first to address the spontaneous arousals. As with central apneas, sometimes when you handle the obstructive events the central events go away. The same apparently happens with spontaneous arousals. So, the protocol is to try CPAP first. If that does not do the trick, our medical teams generally try BiLevel therapy next.

And sometimes the spontaneous arousals can be triggered by others issues, such as chronic pain or neurological issues. My neurologist warned me that my own issues will continue to cause further dysregulation of sleep. Some nights I sleep very well. Others I sleep very poorly. Often there is no connection to anything external, so I assume it's just some sort of waxing and waning of my symptoms. Bad sleep is one of them. This is apparently fairly common with people who have Parkinsons (as an example). As the disease progresses, sleep regulation decreases (hence the "dysregulation"). And of course poor sleep tends to magnify any neurological disorder.

Of course, just because I have a neurological disorder does not mean that anyone with spontaneous arousals has a neurological disorder. You might just be very sensitive to sleep. Or you might have always been a "light" sleeper. Or ... there must be a thousand reasons.

My point is that generally the obstructive apneas are first treated, because that therapy often decreases the spontaneous arousals. Essentially, if you are sleeping better, your body may not be trying to keep you awake. Since the original poster was so faithful at staying complaint, the doctors knew that was not the case for her. So, it's now time to try the next type of therapy.