Respiratory rate

[Pugsy]

Yes, a bilevel machine would/could help no matter what the cause is.
If it's REM sleep that is the culprit then you can't control it anyway.
Plus as you have found out it isn't always so easy to control position...and that's IF (big IF) position is the primary culprit and I don't think it is. It may be a factor but I don't think it is the sole factor here.
I am not so sure 20 cm will do the job even if it didn't trigger the aerophagia monster anyway.
Bilevels can go over 20 cm plus hopefully they can do it in a manner that doesn't cause the aerophagia to come calling.

You can also look at it this way....if you had that many apnea events with the pressure at 18 just imagine how many you would have without cpap at all.
I know this is ugly the way it is but I bet it would be a lot uglier if you didn't use cpap.

For sure if you can get a bilevel machine get one that will auto adjust. That way you can at least use lower pressures when the higher pressures aren't needed.

About the cervical collar. Some people do well with it and find that it helps keep the airway open and they can get by with less pressure but for some people trying to wear one simply causes more sleep issues and if a person can't sleep well then it doesn't really matter what the pressure is does it?
We gotta get the sleep first. I couldn't use one myself. I already hate what little I have to wear on my face and head with the mask and I sure don't want to add a hot itchy cervical collar into the mix.
The best cpap pressure settings in the world along with the best AHI doesn't mean squat if we can't sleep.
So the collars are worth trying. Relatively inexpensive and there's always the chance that it might help as long as they don't cause more problems than they are trying to fix. They aren't likely to help REM related stuff though....now maybe if there was REM and position involved you could get some relief in terms of those higher pressure needs but again that's a big IF plus you have to be comfortable with it and if we aren't comfortable we can't sleep so great and that means crappy sleep quality which of course means feeling crappy.

[Fenelon]

Pugsy - thank you so much for taking the time to write again, it really is greatly appreciated!

You can also look at it this way....if you had that many apnea events with the pressure at 18 just imagine how many you would have without cpap at all.
I know this is ugly the way it is but I bet it would be a lot uglier if you didn't use cpap.

It is ugly, but it is a wonderful point and one of the main reasons I keep strapping the mask to my face every night. I am also very heartened by what you have written about bi-level machines and this gives me hope. And the hope coupled with the wonderful support on this forum gives me strength. And before I go all Confucius on you I'll just say thank you again, you really are being a great help!

[Fenelon]

http://imgur.com/a/94aqZ

I changed the maximum pressure to 20 and although it was a little bit better than the previous night I'm still feeling quite shattered this morning. I see the sleep doctor tomorrow and will talk to him about his thoughts on a bi-level machine. I will also request a copy of my sleep lab results. Thank you to everyone who has posted on this thread!

[Fenelon]

Dejected, depressed and despondent here in Germany.

I had a meeting with the sleep doctor this morning, which turned out to be a meeting with the sleep nurse, who was suggesting my sleep problems were psychological by using the analogy of measuring your blood pressure while worried about your blood pressure and thus getting a result that was higher than normal. Then she suggested that my numbers were ok and that we should LOWER the pressure.

I became a little exasperated at this point and the nurse went to fetch the doctor, who never came. Now they want me to spend another night there (tonight) and they are going to measure me again but still with the pressure on my machine lowered (my German girlfriend has subsequently spoken with the doctor on the phone and confirmed these were his instructions), despite a different doctor telling me that 5-12 was not enough, after testing me in the lab the last time.

The nurse was running out of patience with me and the doctor was quite short with my girlfriend on the phone, so I am not exactly brimming with delight about going back there tonight.

I haven't looked at the sleep report from my last study yet, but it seems most events occurred when I was on my back. But even this information is difficult for me to take in. We have just spent a fortune redesigning the bedroom to try and tackle insomnia issues, the bed alone cost $7000, and with new wall units and heating system, it is positioned in the middle of the room. I have no idea logistically - or from a being able to fall asleep point of view - what to do about the sleeping on my back problem. It would have also been nice if they had told me about this a month ago.

I'm very sad about it all.

On the plus side I can report that the AirTouch F20 mask is still exceptionally comfortable and of low leakage after several nights

[Pugsy]

I can share with you what I did when I was trying to determine if my higher pressure needs were related to sleeping on my back if they were solely related to REM stage sleep.

I knew my OSA was worse in REM but I also wondered if sleeping on my back played any part in the pressure swings.
I also knew that for me to try something to wake me up from discomfort when I was on my back was going to trash my already fragile sleep and didn't want to do that for obvious reasons. That's why I don't like the "sew tennis balls in your shirt" or "wear a back pack" type of solution for keeping a person off their back.

So I started out trying various more comfortable ways of staying off my back. First try was bed pillows stacked up against my back but that didn't last long because they moved out from under me too easily and I would end up on my back. Then I tried one of those wedge pillows and sometimes it would work but most often it would also slide out from under me.
Then I got to thinking about the bed pillow that I was using at the time. It was a buckwheat hull pillow which is much heavier than a regular bed pillow.
So I moved it from under my head to alongside my back. It didn't move nearly so easy and was actually quite comfortable against my back when I would end up laying against it. Felt good actually. I have a bad back and the support felt good. I might not be totally on my side but I wouldn't be totally on my back either...sort of maybe a 45 degree angle.

Your sleep is already fragile...don't do anything that is going to make it more fragile like increase the chance of pain or discomfort happening.

What did you try when you tried to stay on your side? And what did it cause to become painful?

As it turned out for me once I used the buckwheat hull pillow to keep me on my side more or less, I discovered that my pressure needs were unchanged...they would still sometimes go 6 to 8 cm higher in probable REM stage sleep. So supine sleeping really didn't affect my pressure needs and I ended up deciding if I was going to have the pressure needs anyway then I might as well sleep in any position I wanted and let the machine sort it out.
I was lucky though in that those higher pressure needs didn't seem to cause me any problems like the aerophagia monster coming to visit.

I am not 100% sure that 100% of your pressure needs are sleeping on your back. I still think that some are likely REM related and maybe they are made worse when you are on your back. Until you are actually able to sleep the bulk of the night on your side you won't know for sure.

Having another sleep study tonight with lower pressures....recipe for disaster IMHO. It's already painfully obvious that there are times when the pressures you are going to isn't enough. Makes no sense to lower the pressures.

If you want to get a bilevel machine...that's fairly easily done and you can even get one that will fit with your existing humidifier. You just have to pay for it yourself. They aren't cheap but deals can be found if you want to go that route.

[Fenelon]

Pugsy, as always thank you for your time.

I've been looking at my sleep lab report and there are 0 events during REM sleep. On the night with the machine set to the low pressure there were 33 apneas (26 OA, 4 CA, 3 mixed) and 6 HA, with RERA being 0. Of these 39 events 29 occurred when I was on my back. Most occurred during N2, with a few N1. More worrying for me is my SPO2 dropping into the 80s for what looks like 30 minutes but the graph is too imprecise for me to see what was going on (pulse rate unaffected in low 60s). Definitely a few OA events and what looks like a lot of movement and changing sleeping positions at the time. (My SpO2 went down to 70% the previous night (one brief spike) and spent a bit more time in the 80s but they gave me a sleeping pill both nights, so I hope that's the reason.) (My two home SpO2 tests seemed ok).

Well, I shall endure tonight with the thought that at least I can speak to a doctor in the morning and see where we go from there. I'll ask about a bi-level and see what the doctor says. My only concern would be if the doctor advised against it, it's a big investment against a doctor's advice but I'll cross that bridge when I come to it.

As for back sleeping - I tried to make a wall of pillows/cushions but it was either too weak that I'd topple it or too fixed that it was unnatural and I couldn't get comfy. I move from side to side when falling asleep and this is going to be a problem for me. And long term I would prefer to sleep in the bed I've just bought with my girlfriend, but I don't know if she'd be willing to prop me on my side all night and act as a wall

Thanks again for your input!

[Pugsy]

0 events in REM is unusual. How much REM did you get?

[Fenelon]

0 events in REM is unusual. How much REM did you get?

15.5% REM sleep. (The graph is imprecise, I can't see exact lines so it is difficult to be certain but if any events 'might' be in REM it would only be 2 out of the 39!).

Edit to add: on the night without therapy there were a few more in REM sleep (REM Sleep was 22%) but it was still a minority of events scored then.

[Pugsy]

Over how many hours were those 39 events?
How much time asleep?

[Fenelon]

Over how many hours were those 39 events?
How much time asleep?

Over seven hours. I was maybe awake roughly one hour during that (mainly at the beginning of measurements and then a bathroom break).

Edit: to clarify awake for one hour during the seven!

[Pugsy]

39 events over 7 hours ends up with AHI of about 5ish.
Something doesn't compute....you are having worse nights with cpap than you did without.

[Fenelon]

39 events over 7 hours ends up with AHI of about 5ish.
Something doesn't compute....you are having worse nights with cpap than you did without.

The time span is definitely 7 hours, though I'm awake for at least 30 minutes at the beginning. Maybe I am misreading something? The first set of results was with a machine.

The report states Apnea 33
Hypoapnea 6
Periodic Breathing 0
AHI 8.5, AI 7.2, HI 1.3, RERA 0, RDI 8.5 (no idea what RDI is).

This was with a machine! My first night with a machine (second night in the lab). The machine was set 5-12, which is what they are returning it to tonight.

The previous night, without a machine was as follows:
Apnea 26
Hypoapnea 173
Periodic breathing 0
AHI 28.4, AI 3.7, HI 24.7, RERA 0, RDI 28.4

[Pugsy]

RDI is Respiratory Disturbance Index...basically the AHI (centrals/obstructives/hyponeas) plus whatever caused arousals where the sleep was disturbed.

Sorry...I thought the 39 event night was without cpap.

[Fenelon]

RDI is Respiratory Disturbance Index...basically the AHI (centrals/obstructives/hyponeas) plus whatever caused arousals where the sleep was disturbed.

Sorry...I thought the 39 event night was without cpap.

Sorry Pugsy, I may not have reported the time correctly, my German is, to be kind to myself, a work in progress. I think I have the following: Time in bed 323 minutes, total sleep time 274 minutes, Wake after sleep onset, 49 minutes.

My maths is worse than my German but I think the figures probably add up now

As always thanks for your time. Anything we haven't covered that you'd be asking the doctor in the morning?

[Pugsy]

I would be asking what to do about the aerophagia issues that seem to come with the higher pressure needs.

To me it is unacceptable to not offer bilevel as an option because it can very likely allow you to use the pressures you seem to need no matter what sleeping position or sleep stage you are in and get that AHI down to acceptable levels. While 10 AHI is better than 28...it's still far from ideal and while sometimes we have to make compromises...I don't believe in doing that until all other potential solutions have been tried without success and that includes bilevel.

This therapy is supposed to help us and not make things worse in terms of sleep quality and life in general.

Tell him that you can't sleep well if not allowed to be on your back and the name of the game is sleep. Yours is already fragile from other insomnia issues.