introduction, and a history of apap->bipap->central apneas?

Hi, might as well take a moment to introduce myself - I've been lurking on this site for a while, trying to understand various aspects of my treatment. The more I understand, the better a patient I am. I also am just a generally extremely curious person who gets excited by learning in general.

That sort of went away with the development of sleep apnea. I just had a constant feeling that something was not right, and wanting to sleep all the time, and no one really understood and told me to just go to the gym, or that we all get tired sometimes, or that it must be in my head, or had I tried a change in diet or getting my iron/thyroid/b12 levels checked and the answer of course was that I had tried all of those things for many, many years, but of course it rarely ever helped because I was suffocating in my sleep every night.

So while I love them, my friends and family don't really understand how much sleep apnea destroyed my life and I feel very much alone in this endeavor.

I got my auto -cpap December 2017, and after 3 days, I felt a new lease on life. My memory worked, my brain worked, I felt like a person. And then after that initial good week, I had some good and bad times but mostly my sleep was still all over the place, and I was blaming myself for things not working, because I always blame myself first, until I realized maybe I wasn't the problem, maybe the problem was with my apap or mask.

So last October, I went back to my ENT (who had initially suggested the UPPP surgery or a mouthpiece instead of xpap after my sleep study, so I should have known to run!) and said I still didn't feel very well and wondered if maybe he was willing to do a titration study or if I needed bipap. He said no, the auto-cpap should take care of everything, and no reason for bipap because "nearly no one I've ever treated has needed one"

I told him I was desperate to feel better, and I really felt my sleep was getting worse, and so his final suggestion was to watch a netflix documentary on some health fad, then suggested I try seeing a psychiatrist, as I seemed very anxious (of course I was, my machine wasn't reacting quickly enough to my events because the minimum pressure was 4).

These were the results of my first sleep study - basically my takeaway was AHI overall of 29.7 events per hour -

20 / hr in NREM

78 / hr in REM

Luckily I found another sleep doctor who said it was definitely strange my previous doctor had recommended the UPPP and explained why it wouldn't be a good option for me, and also said it was strange that my previous doctor hadn't done a titration, and left me on pressures of 4-20.

I explained to him that I had downloaded sleepyhead, with which he was familiar, and that I had played with increasing my minimum pressure to about 12 thanks to cpaptalk.com folks and reading some of your old struggles, and that had helped me feel significantly better for a bit, before I started to feel like crap again.

The new sleep doctor got me into his sleep lab the same day I saw him for a titration study, and the result of that titration was that I needed a bipap, because I did best on IPAP 14-15 and EPAP of 7.

In the interim between when I had the titration study and when I got my bipap, I was using my apap.

I forgot to mention that during my titration study, I had also had a pressure esophageal manometry measurement - so as I understand it, the PES as doctors call it, is a measure of the pressure required to overcome my airway resistance.

The PES showed a base pressure differential of 12 cm H2O, but maximum pressure differential of 18 cm H2O.

So I set my apap at a minimum pressure of 14 cm H2O (because that had been the titration pressure from my titration study) and then I set the maximum pressure at 18 cm H2O, per the PES results.

After 3-4 days at these pressures, I took a look at Sleepyhead and saw that I was having obstructive events at 14 cm H2O, which coincided with when I was waking up from nightmares that I was dying. (I always take my mask off when I have a dream in which I am dying, just to see if it lines up with an obstructive event or hypopnea and it usually does).

So I kept bumping my minimum pressure up until I felt comfortable that my obstructive events were being taken care of, and ended up around 16-20 cm H2O. The only downside was the aerophagia from both ends.

However, I did feel better, and even cooler, this acid reflux that I had been suffering with for years, went completely away.

I was excited for bipap to help with the aerophagia and went to pick it up when I realized my bipap was an AirCurve S, not an autobipap. and the DME was setting it only to 14/7 and warned me not to change it.

So i tried IPAP 14/ EPAP 7 for 2 weeks like a good patient. and of course the acid reflux came back. And drop in mood and energy and concentration. 15/8 I did much better.

I think my concern is that I maybe spent 20 minutes in REM sleep during my titration sleep study and since is REM where my AHI increases from 20 to 79, I'm pretty sure that I need more pressure in REM sleep? Just brief bursts. I mentioned this to my sleep doctor.

his response was to just bump up my bipap pressure to IPAP 17, EPAP 8.

He also told me that he doesn't believe in autobipap, ever. because in his experience, if you set the pressure support and then the pressure is varying significantly, you can have significant issues on the EPAP? (I'm sure I'm not explaining that right, but it was some variation of that)

At the higher Bipap pressure he set, I ended up with a crap ton of centrals (I guess whether they were true centrals or just many, many arousals I don't know) - See my sleepyhead charts below (edited one for better clarity per palerider's comments, and tried to give an example of breathing during a CA and OA)

Some background information - not on any medications. I take a Vitamin D supplement every so often when I remember. I try to get and get some sun and stay fairly active by walking my dog 30-40 minutes a day. I had severely high blood pressure that went down with xpap, and also had some blood sugar issues that went away with xpap (though neither is quite down to where I remember them being)

I guess I'm just looking for information and experiences.

1)Would it be best for me to increase my epap and lower my ipap?

or Go to another doctor to push for autobipap, which my doctor (who I generally like and trust actually) was vehemently against?

2) I've read a bit about Pugsy saying - if you have had a titration, try to stick with those pressures for a while (I stayed with my results about a month), and also that if you have centrals that sometimes they can just be from arousals, but surely with so many that's not the case with me at the IPAP of 17? Has it been the case that there are those who looked to have a lot of Clear Airway events that it was just from arousals all night long (since I don't have a prior record of central apnea from my sleep study)

3) And then, where exactly can I donate? I've donated to sleepyhead to thank Mark for creating his software but would like to donate to cpaptalk.com to thank those who maintain this site and create the community.

It looks like you are having the same problem my wife had when she first started. She started having a lot of central apnea events at her required pressure. They backed her pressure way down. The first month, they had her at IPAP 11 with a PS of 4. The second month, they put her on EPAP 11-12 with PS of 4. The third month they put her at 12-15 IPAP with PS of 4. They then raised her IPAP to 12-19 with IPAP of 4. Her final setting, which she currently uses is IPAP of 16-25 with PS of 4. Every time they raised her pressure, the number of central apnea events would go up, then diminish over a two or three week period. She still has a few central apnea events, but normally less than two per hour. A schedule similar to this may work for you. All of her settings were prescribed by the sleep clinic we use. She has used the machine for a little over 19 months at her current pressure and is doing quite well on it. To be truthful with you, I didn't think it would work when she first started treatment, but they were trying to make sure she did not need an ASV machine. Hopefully, your number of central apnea events will diminish over a short period of time.

dogsarelife wrote: ↑

Tue Feb 05, 2019 11:59 am

3) And then, where exactly can I donate? I've donated to sleepyhead to thank Mark for creating his software but would like to donate to cpaptalk.com to thank those who maintain this site and create the community.

One way to support CPAPTalk.com is to support its host, CPAP.com. Should you have any equipment or supplies needs, give them a look.

dogsarelife wrote: ↑

Tue Feb 05, 2019 11:08 am

it was strange that my previous doctor hadn't done a titration, and left me on pressures of 4-20.

Not strange, altogether too common to have lazy/incompetent doctors leaving machines at the min/max settings.

dogsarelife wrote: ↑

Tue Feb 05, 2019 11:08 am

I explained to him that I had downloaded sleepyhead, with which he was familiar, and that I had played with increasing my minimum pressure to about 12 thanks to cpaptalk.com folks and reading some of your old struggles, and that had helped me feel significantly better for a bit, before I started to feel like crap again.

The new sleep doctor got me into his sleep lab the same day I saw him for a titration study, and the result of that titration was that I needed a bipap, because I did best on IPAP 14-15 and EPAP of 7.

That much PS would make most people dizzy, and induce central apneas in a some of them.

dogsarelife wrote: ↑

Tue Feb 05, 2019 11:39 am

He also told me that he doesn't believe in autobipap, ever. because in his experience, if you set the pressure support and then the pressure is varying significantly, you can have significant issues on the EPAP? (I'm sure I'm not explaining that right, but it was some variation of that)

Well, your doctor's a fertilizer factory.

Anybody with positional or REM apnea does better with an auto machine, that can adjust to their changing needs throughout the night.

At the higher Bipap pressure he set, I ended up with a crap ton of centrals (I guess whether they were true centrals or just many, many arousals I don't know) - See my sleepyhead chart below.
[/quote]

high PS will do that to people.

Also, whenever you've got a chart with a lot of blank space in it, because of a nap or something, turn off that short session (bottom of the left panel) so your night isn't all scrunched up into half the space.

dogsarelife wrote: ↑

Tue Feb 05, 2019 11:59 am

1)Would it be best for me to increase my epap and lower my ipap?

or Go to another doctor to push for autobipap, which my doctor (who I generally like and trust actually) was vehemently against?

2) I've read a bit about Pugsy saying - if you have had a titration, try to stick with for a while (I stayed with my results about a month), and also that if you have centrals that sometimes they can just be from arousals, but surely with so many that's not the case with me at the IPAP of 17? Has it been the case that there are those who looked to have a lot of Clear Airway events that it was just from arousals all night long (since I don't have a prior record of central apnea from my sleep study)

3) And then, where exactly can I donate? I've donated to sleepyhead to thank Mark for creating his software but would like to donate to cpaptalk.com to thank those who maintain this site and create the community.

1) probably, and I sure would... any doctor that closed minded doesn't need my money.

2) It's possible.. but without seeing the actual breathing, ... who knows.

3) Mark is having another paranoid episode, posting long rants about how everybody is against him, everybody wants to destroy sleepyhead, how he hates what everybody says, and hates how people want to see progress, while he does nothing to help people. I wouldn't donate until he wises up about the reality of the world.

To Okie bipap -

Okie bipap wrote: ↑

Tue Feb 05, 2019 3:47 pm

Every time they raised her pressure, the number of central apnea events would go up, then diminish over a two or three week period.

Thank you for your kindness and responding about how your wife had issues with centrals on Bipap every time she increased pressure. I also appreciate your sharing how she resolved it with her sleep clinic. It gives me some hope.

To DogSlobber - thank you for directing me to how I can support cpaptalk.com. I will add cpap.com to my bookmarks to support this site.

To Palerider- I'm chuckling to myself at

palerider wrote: ↑

Tue Feb 05, 2019 4:57 pm

Well, your doctor's a fertilizer factory.

I reformatted my sleepyhead chart above per your comment. and attached a chart that is zoomed in on breathing per your request (or at least, I think this is what you are requesting).


Thanks for your kindness and input on my questions. and also that's too bad about Jedi Mark. I still wish to send a message saying thank you for how much Sleepyhead has helped me and wish him the best.

I think for tonight I will go back to IPAP of 15 and EPAP of 8 or 9 since that is where I was before I erupted in central sleep apneas, and at least there I was ok, even if I suspect my REM incidents weren't being fully taken care of by those settings.

Palerider, some of what you wrote shows me I don't understand nearly enough about Bipap. I have been searching cpaptalk.com to understand pressure support and aspects of my bipap and keep on coming across posts by you and Pugsy.

This is one I found by you, that makes me think I need to investigate my flow patterns and then possibly trigger setting and TiMax.

VAuto mode *may* help, if there's some benefit to a little tweaking, (like there was with me). basically, you can adjust how sensitive the machine is to your breathing, I'd notice, while looking at some of my apneas, that it looked like I was *trying* to breathe as my throat was closing up, I'd see these little inhale bumps in the flow, but the machine wasn't saying "oh, inhale, I'll bump the pressure", so I adjusted the Trigger setting, making it more sensitive (very high), so the machine would raise pressure when I'd start to inhale.. and that brought my AHI down further. I also noticed that it looked like it was cutting off my inhalations sometimes, so I adjusted the TiMax setting to let me inhale longer when I wanted to in my sleep... I don't know that helped anything, but ... why not

and here is another post I found by Pugsy on centrals (she has a lot) where I am trying to remind myself not to panic about centrals:

Centrals..even if real and occurring during sleep...aren't normally a problem. It's normal to have a few. Even people without any sleep apnea diagnosis can and will have them happen from time to time.
How many is too many? Hard to say but if you are seeing 5 per hour...every hour...every night that you can't explain away by being awake maybe...see your doctor. It may not be anything but whenever in doubt about something you see on your report....go see your doctor.

So...when evaluating your AHI....make sure that what you are wanting to fix is fixable.

Oh..while talking about "centrals" and the "higher pressures can cause centrals" thing.
Well, yes they can but not nearly as frequently as you might think. If it were there wouldn't be all these people using CPAP with a pressure of 18 cm and over 20 and not having any centrals.
There is a small % of people who can have centrals (actually a form of breathing instability) triggered by cpap pressure in general and it doesn't have to be a "high" pressure..it can happen at much lower pressures also like 6 cm. Sometimes there is a pressure where above so and so pressure the centrals will emerge and below it they don't. It isn't nearly as common as people think. Should it happen there are things that can be tried to fix it and there is a special machine for those that can't reduce the centrals to an acceptable level by trying the easy stuff first.
So there's a lot of unnecessary panic about "centrals"....don't get sucked in.

Just thought of some other questions -

1) Please, can someone help me understand why higher pressure support can trigger central apneas -if anyone can help direct me to a thread that discusses this, I would be full of gratitude.

2) How do you learn about things like Timax, trigger, etc? is this in a book on bipap?

Thank you all for your time and responses and sharing your experience and knowledge.

Pressure Support causing Central Apnea. I've many cases where a pressure difference and Pressure Support is a pressure difference cause Central Apnea to occur. Why? I haven't seen a study saying why but it seems logical that the deeper breath caused by the larger pressure difference would wash more CO2 out and put more O2 into the lungs thus impacting the balance of blood gasses to the point that says you don't need to breathe. This does not occur with everyone.

I hope this helps.

Fred

dogsarelife wrote: ↑

Tue Feb 05, 2019 6:17 pm

and also that's too bad about Jedi Mark. I still wish to send a message saying thank you for how much Sleepyhead has helped me and wish him the best.

Certainly no harm in that, It's just remotely possible an outpouring of support will convince him to seek treatment, or it might drive him further over the cliff, who's to say? He goes through these phases where he's convinced everyone on the internet is out to get him, even his long time friends.

dogsarelife wrote: ↑

Tue Feb 05, 2019 6:17 pm

I think for tonight I will go back to IPAP of 15 and EPAP of 8 or 9 since that is where I was before I erupted in central sleep apneas, and at least there I was ok, even if I suspect my REM incidents weren't being fully taken care of by those settings.

Palerider, some of what you wrote shows me I don't understand nearly enough about Bipap. I have been searching cpaptalk.com to understand pressure support and aspects of my bipap and keep on coming across posts by you and Pugsy.

just for reference, 'bipap' is a trademark of Philips Respironics for their various "bilevel" machines. Resmed uses different terms. Unless you have a PR machine (system one, Dreamstation, or earlier), you don't have a 'bipap'.

This is one I found by you, that makes me think I need to investigate my flow patterns and then possibly trigger setting and TiMax.

VAuto mode *may* help, if there's some benefit to a little tweaking, (like there was with me). basically, you can adjust how sensitive the machine is to your breathing, I'd notice, while looking at some of my apneas, that it looked like I was *trying* to breathe as my throat was closing up, I'd see these little inhale bumps in the flow, but the machine wasn't saying "oh, inhale, I'll bump the pressure", so I adjusted the Trigger setting, making it more sensitive (very high), so the machine would raise pressure when I'd start to inhale.. and that brought my AHI down further. I also noticed that it looked like it was cutting off my inhalations sometimes, so I adjusted the TiMax setting to let me inhale longer when I wanted to in my sleep... I don't know that helped anything, but ... why not

Yup, that was me. they say the devil is in the details, with cpap, it's in the breath shapes. I'm impressed with your level of digging

Most people do no use more pressure support than 4 or 5 cm. When I first started treatment, my IPAP was set at 20-25 cm with PS of 5.