APAP response time not fast enough

[jnmv1969]

I am a bit stuck. I'll explain the problem I am running into. If anyone has any ideas or thoughts, please let me know, since I am due to see my doctor tomorrow. I am going to ask her to prescribe a different machine. I am thinking of either a BiLevel Auto with Bi-Flex or a VPAP 25. But even after reading several descriptions of each on this site, I'm not sure which to ask for, or if I understand the difference between the two other than the Auto feature. Below is my current situation, so if anyone has any ideas, please let me know.

But first, what kind of machine I wish existed:

My “magic, dream machine” would do the following: it would be a machine that remembers my last pressure need rather than taking me back to the lower end of my range, because by the time my machine responds to my throat closing, it is too late, I end up with an apnea event. Yet, it would “know” that I need the higher end of my pressure the first two hours, and the lower end of my pressure range once two hours of sleep time have passed. In a way, instead of working it’s way up the pressure ladder, it would work it’s way backwards. It would also be a bi-level machine, since trying to breathe out against a high pressure of 18cm even with aflex set at 3 is really hard.

So now, my situation:

I am currently on an APAP. I'm embarrassed to say that I have been trying on and off for the last 5 or 6 years to get XPAP to work for me. The only thing that keeps me coming back to trying to use it, is feeling miserably drousy. I have moments when if I am standing still on line in the supermarket, I feel myself fall asleep for a split second and feel my body falling through space. I've never fallen asleep on my feet but it is happening more and more. I am glad to have discovered this site. I signed up a long time ago, but I didn't start using it in earnest until about 4 months ago. I am determined to get myself treated, and this site helped me realize this stuff takes a lot of trial and error for some of us.

Here's my problem/issue that I keep running into is that with the APAP, it doesn't seem to respond fast enough. As soon as I drift off to sleep, my throat starts to close, the APAP responds (I can see spikes in pressure by 1cm in my software report), but my throat gets half way closed before the pressure is enough to open it back open. This sensation of the pressure opening my throat back up wakes me up each time.

I have experimented with both high and low pressures, and run into the same problem. With lower pressures (9 - 12), my throat completes closes and the air blows up my cheeks. With higher pressures, I do better, I don't get the puffing and I can drift off for a bit longer, but I run into the issue above. Last night, I tried my pressure at 18cm (after trying 14, 15, and 17cm), and I probably got the furthest I ever got in terms of staying asleep, but still the same issue. I kept nicely drifting off, but then there would this rumbling feeling at the back of my throat with the pressure pushing back open my partly closed airway. That would wake me up each time. I also know that I was still choking because my heart started skipping beats, which is what happens when I have an apnea event. These events sometimes get recorded on my software and sometimes don’t, depending on how quickly I wake up. I also tape, by the way, which has helped but not solved the above issues.

Any and all input is appreciated.

[JeffH]

Some of us don't tolerate pressure changes well. I don't. My APAP is set on CPAP mode and that has eliminated my problems. What you describe is exactly what was happening to me. Run it on straight CPAP for a while and I bet that makes you problems go away. APAP's aren't for everyone.

JeffH

[cinco777]

JeffH wrote

Some of us don't tolerate pressure changes well. I don't. My APAP is set on CPAP mode and that has eliminated my problems

I 2nd Jeff's recommendation. I tried APAP with different pressure ranges for a month before finally switching to CPAP with a constant pressure as APAP did not allow me to get a restful sleep. I have been running my APAP with Min & Max pressure set to 8 (happily, I do not need a high pressure to keep my airway open).

I suggest that you pick a pressure that best works for you in APAP mode and use that pressure as your starting CPAP pressure. Try it for a week and let us know your results. I am not a medical person so check with your doctor first if you are not comfortable with following this recommendation.

[Velbor]

My experience, having been using both Respironics and ResMed AutoPAP machines, is that ResMed tends to respond faster, raises pressure higher, and stays at elevated pressure longer, than does Respironics, when presented with a trigger event. This may or may not be desirable in all cases, but it sounds as though it may be beneficial for you. If you can get access to a different brand machine, it might be worth a try.

[cinco777]

Please post some "Sleep Therapy Daily Details" graphical reports for a few nights so we can see what is happening re sleep events, leaks, and pressure while you are falling asleep, sleeping, and waking up. Some of us may be more helpful with our analyses and recommendations if you supply us a picture!

[jnmv1969]

I would post my data, except that I have very short little bits. At most, I have been able to use my APAP for 50 minutes. In those 50 minutes, I usually have about 3 apnea events - not always recorded or caught by the machine, because I wake up so quickly. (My apnea has made me an extremely light sleeper - I guess that's my body's way of trying to keep my airway open.) After about 3 apnea events, I usually have a lot of adrenaline running in my system and my heart is beating fast and skipping some beats. My leak rate has been consistent with the information I have found that shows what is acceptable.

[GumbyCT]

I think the bilevel is the Ultimate in Exhale Relief, esp. at high pressures. Tell your doc you have trouble exhaling and don't be shy about it. Adding that you have to remove the mask to breath may help.

Fact is, if you are not exhaling completely you may be having centrals as a result. Not breathing results are the same whether obstructive or central, so don't panic.

[jules]

what is your titrated pressure?

what is your current range on the apap?

[Wulfman]

Here's my problem/issue that I keep running into is that with the APAP, it doesn't seem to respond fast enough.

That's what we've been trying to get across to APAP users for years. But, if it did, it would probably jolt you out of your sleep.

In addition to what jules asked......in what position do you sleep? If you sleep on your back, you need to try to change that.


Den

[jnmv1969]

I am about to go for a new sleep study in 10 days or so, so I will post those numbers once I get them. I have not had one since 2004, and my doctor wants me to have a new one. This one is plain, no titration. I agree with her that I need a new one, but I usually have an awful time trying to sleep during them, because they'll ask me to sleep on my side or back. I almost never can fall asleep in either position because of the apneas. I always have to sleep on my stomach to keep my airway open (this all being without a mask). With all of the attached wiring at the study, I cannot sleep on my stomach. After about the 4th apnea, I can forget about sleeping the rest of the night because by then I have so much adrenaline running in my system and my heart is pounding. I feel like I've been running on a race track. After about 2 hours, I can start to fall asleep again, but then the same scenario happens all over again. All of the sleep studies were the same for me, which is that I basically finally feel asleep sometime around 4am.

I have had an even harder time with a titrated study because they start with such low numbers with the pressure. I totally feel like I cannot breathe at a pressure of 9 or so. I had one titration and basically kept waking up when my throat started to close. The machines didn't capture that, all they captured was that my sleep was very fragmented. Finally, around 4am, I fell asleep and it was determined that my pressure should be 9. But then my doctor told me in my last visit that my sleep was even more fragmented with the mask at this pressure than without it.

How do they even determine where to start on the scale? Why do they start so low?

[GumbyCT]

I am about to go for a new sleep study in 10 days or so, so I will post those numbers once I get them. I have not had one since 2004, and my doctor wants me to have a new one. This one is plain, no titration. I agree with her that I need a new one, but I usually have an awful time trying to sleep during them, because they'll ask me to sleep on my side or back. I almost never can fall asleep in either position because of the apneas. I always have to sleep on my stomach to keep my airway open (this all being without a mask). With all of the attached wiring at the study, I cannot sleep on my stomach. After about the 4th apnea, I can forget about sleeping the rest of the night because by then I have so much adrenaline running in my system and my heart is pounding. I feel like I've been running on a race track. After about 2 hours, I can start to fall asleep again, but then the same scenario happens all over again. All of the sleep studies were the same for me, which is that I basically finally feel asleep sometime around 4am.

I have had an even harder time with a titrated study because they start with such low numbers with the pressure. I totally feel like I cannot breathe at a pressure of 9 or so. I had one titration and basically kept waking up when my throat started to close. The machines didn't capture that, all they captured was that my sleep was very fragmented. Finally, around 4am, I fell asleep and it was determined that my pressure should be 9. But then my doctor told me in my last visit that my sleep was even more fragmented with the mask at this pressure than without it.

How do they even determine where to start on the scale? Why do they start so low?

I am confused...

This one is plain, no titration.

I almost never can fall asleep in either position because of the apneas.

If you are having apneas - why No titration?

Why bother? You already know you have OSA.

[JeffH]

He's been given a solution, but isn't listening.

[jnmv1969]

I'm not sure, either. My doctor feels that my situation may have changed, and she wants to use more recent data. Plus my sleep study never got transferred to her new hospital, just the report did even after it was officially requested a few months ago. She also seems concerned about me having central apneas. I don't think I have centrals, I never had them in my first sleep study. She doesn't understand why I need such a high pressure (I told her that the pressure I have been able to get furthest on in terms of falling asleep is 18, I have not tried anything higher yet but everything lower and I still choke and wake up). She worries that I am getting centrals on 18, even though I have explained that the lower I go on the pressure, the faster the OSA kicks in. I tried to explain to her that what I really think I need is a bi-level machine. The only thing I find hard about 18 is breathing out, which is why I want the bi-level machine. I guess because I am thin and relatively young, I don't seem like someone who would need a high pressure?? (My dad was skinny his whole life, yet he had really bad OSA and heart disease.)

Overall, the visit and outcome were not what I was hoping for. Partly it was because there was a new doctor there that I had to first meet with, then I got to see my my regular sleep doctor while the new doc stayed in the room. I had to spend a lot of time filling in the new doctor, which I can't say I was happy about since I am already on my 3rd sleep doctor (not by choice, but by doctors moving, leaving, etc.) but I have gotten very good at being able to explain my entire situation in about 5 sentences (just what the docs have time for.) I have already built a repoire with my regular sleep doc, and the new doc (while nice and polite) seemed to just throw things back to the starting point. I think it would have made more sense for my doc to put me on a bi-level machine at 18 (with a much lower exhalation rate), and then do a sleep study at that point to see if I have centrals. I was hoping to get the conversation to that point, but instead it was like being thrown back to the beginning of this whole process. It was really frustrating.