CPAP can I help it along?

Hi all, firstly so glad I have found this forum. I'm getting a little (understatement) with my treatment as it doesn't seem to be moving along and is all over the place.

A little background

I'm a 42 year old (UK) male who has likely had OSA for quite some time. I have a 17.5 inch neck and a bit over weight at approx 17 or so stone and 5ft 10". A typical candidate I hear you say. Long time hard snorer with shock wake ups through the night. My Dr of 10 years ago advised that he wouldn't send me to a sleep clinic because I have hiatus hernia which causes acid reflux. He said that the reflux is more likely to be waking me up but the op for that doesn't last more than 10 years, so I asked if it would be better to have that at a later age when sitting up quickly to burp or drink water would be harder. He agreed. Fast forward 10 years and I have seen another Dr who immediately sent me to hospital for a check. Obvious conclusion is I have severe sleep apnoea. Since using CPAP I have not had a single reflux! I was told severe was around 30 episodes an hour. My readings were 85. I was waking every 20 minutes for 2 years and was at the very end of my ability to function. I have had to report my condition to DVLA (driving authority in UK) and they have revoked my licence until my condition is under control.

I have been seeing the NHS at St Georges hospital in Tooting and was given a Philips resprionics CPAP machine with full face mask as I am a mouth breather. I am on my third mask now as the case worker for me said I had night leakage. The current mask I have is a mouth cover and my nostril sit on a soft gel. I had a 98% on the mask on the app, but I woke and saw it had slipped in the night. I generally feel this one is the best fit out of 7 I have tried so far. I have no problems getting to sleep with the machine on and don't need the ramp although did use it for the first 6 weeks. My readings can range from a 2.1 (only once)(great) but anything up to 20 odd through the night. From what I understand it's an average per hour over the period of use? So, if I wake at 4 or 5 am, it may be at 18, but by the time I get up, it could drop to 10. I ride a motorcycle so I am eager to get back on the road! Our summers don't last long here! haha. I'm now near 3 months of treatment and finding no consistency. I have tried eating light, eating early, eating heavy (even getting drunk!), that was a 5.5 night, but I'm not prepared to become an alcoholic to get better sleep! lol

I'd like to know in anybodies experience, are there any things they do or do not do that affect the readings? I have the dreammapper app but have read on here about sleepyhead software. I'm going to try figure out if there is leak or "vibration" as my therapist mentioned in my last appointment. I already have a reader so I'm going to get that and download to date to see what I can see. When visiting my therapist I always ask questions, I'm the type that likes to know what's happening rather than just letting them change whatever and having no clue why. She has said that my episodes are during the night, just before I am waking and also in the morning. My settings from the first week trial set at 18. my therapist who I have been back to 4 times now has changed that from 18 constant to flex 15-18, then again 16.5 - 20 but I am still getting readings all over the place. I am no longer snoring (according to my wife) so in part it is working, but my readings are not low enough for them to sign me off. I feel a million times better and no longer sleepy in the day at all. But I guess considering where I have come from the improvement is still considerable.

Does anyone have any nuggets of info that may help me get the readings I need? I'm eager to self help because each time there is a month between appointments because they are so busy, so helping myself get it right will hopefully see them sign me off sooner than having to wait a month between any change.

Thank you for your time and apologies for the essay.

Dominic

edit: I have the cover for the tube which has helped with dry mouth, but the new mask is drier than the full face one that went over my nostrils. Not too bothered about that though. In nearly 3 months I have slept a whole night 3 times. I average wake up one or two times, max three on a bad night.

First of all, please fill in your profile with your exact equipment. You only put the brand name in the text (and it's better in the profile anyhow).

If your machine is data capable (it probably is), you should download SleepyHead and you can analyze your own sleep. As far as I know, nobody had ever had a compliance issue because of changing any of the settings. In the U.S., compliance is a matter of private insurance in the majority of cases. It's public in the U.K., but I don't think you'll have an issue there either.

BTW, it seems that you're getting better support (once you got your machine) than most of us do here in the U.S.

Hi there, I only have the name and serial number which I have got from the sleepyhead software I have downloaded tonight. I will ask my specialist at hospital for the other info and fill it in when I know more. I likely won't be changing anything just yet, my specialist is still my go to person to do that, but understanding everything first is key for me before I try anything. I'm just getting a little downhearted because it's about 9 weeks now and still I'm consistently up over 10 AHI a night. Having come from the mid 80s though, I can say that I feel so much better.

I'm doing plenty of reading on here now as well. Glad to have found a good source of info and help to be honest.

Found a picture of my mask on google. It's the Amara view with headgear. I have updated my profile.

These are my last 6 days since changing the latest mask, the Amira View Full Face.

First of all you have chosen the wrong machine in your equipment profile. You might want to correct that error to avoid confusion later...like people telling you that your machine is a brick when it obviously is not.
You have chosen DreamStation CPAP machine and instead you should have chosen DreamStation AutoCPAP machine.

Secondly....your pressure settings are sub optimal...some nights much worse than other nights.
The nights with high OA count...those clusters of OAs the pressure can't hold the airway open well enough to prevent the collapse.
You need more pressure but there really isn't much more available with your machine.

As to why some nights it's really bad and some nights not so bad...either you are on your back more or more REM stage sleep is causing the OSA to be worse and need more pressure.

So if you were asleep when those dense OA clusters happened...you need significantly more pressure during those times for whatever is causing the OSA to worsen.

Make them give you the humidifier to help with the dry mouth...you will have to request it probably.
The NHS doesn't usually dispense the humidifier unless someone complains. I might just help and is worth trying.

As for the wild variations...and the fact you are in the UK and they frown on you messing with things.
You might try staying on your side all night long (build a wall or whatever that won't move) and see what happens with the results.
You might get lucky and this machine and these settings will work if you stay off your back.

If it's REM related we can't do anything about REM...and/or if you already know with 100% certainty you never ever sleep on your back then you need a different machine that can go higher than this one when it needs to.

FWIW....I know one person who needs pressures of 19 cm when on their back...and 9 cm when on their side.
I normally say sleep in whatever position you want and let the machine sort it out but in that situation I can't say as I blame someone for doing whatever to stay off their back. I would do the same thing given that circumstance.
I don't think you could get by with 9 cm...but you might be able to use this machine and not have the really high OA clusters at these pressures now.

Thank you for your reply and also your sticky post.

I'm pretty sure I'm mostly on my side. I wake up in the morning pretty stiff because of it.

I will see over the next few nights by sleeping back to the edge of the bed.

Got a bit of learning to do to read these properly.

Also updated machine. Thank you. I'll keep reading and have another look at results in a few days.

All these readings are a tremendous improvement over your original 85. However, the current medical guidelines say you should be under five. Note that 5 means an event every twelve minutes (on average). Ideally, it should be under 1.

Yes that 5 seems very elusive to me right now. Last night I recorded 6hours with a reading of 6.2. My wife tells me that when she gets up I am always on my back. That's surprise to me. So today I am looking at anything that can keep me on my side.

Is this a good solution or should I be looking at controlling the episodes even when on my back?

I suspect that to control the episodes when you are on your back you will need a different machine that will go to pressures above 20 cm (which your current machine can't).
You could maybe try a higher minimum with the current machine but you don't have much room for more minimum since you are already starting at 16.5 and the machine can only go to 20 cm.

Staying off one's back is often easier said than done. I don't hold to the advice to do the tennis ball thing so that the pain of laying on the tennis balls when on our backs will wake us up and make us turn back on our side. Just what I need with fragile sleep is to add something to wake me up more often. Besides, I have a friend that tried it. Put 16 tennis balls in a back pack to keep her off her back...woke up flat on her back and from the looks of the report spent 80% of the night there. How she slept through that was amazing to me.

For myself I would want something that would stay put and not slide out from under me that was also comfortable and wouldn't cause discomfort that would wake me up. I tried the foam wedges but they would slide out from under me...so would trying to build a wall with bed linens or regular bed pillows. I needed something with more weight that wouldn't slide and still be comfortable if I ended up against it. When I was doing the "stay off my back experiment" I finally had success with a buckwheat hull pillow. It has enough weight so it doesn't move out from under me very easily and it is very comfortable against my back if I end up leaning on it a lot. Sort of half on my side and half on my back kind of thing.

Eventually with the experiments I learned that my pressure needs being so high at times were related to REM stage sleep...because even when I was on my side all night I still had those pressure needs. So since not related to sleeping position I abandoned further experiments to stay off my back. The machine was needing higher pressures anyway because of REM.

I don't know which it is with you....back sleeping or REM but it's worth trying to avoid back sleeping to see if it changes anything or not and figure out just how much of an impact the back sleeping is having on your pressure needs. We can't do anything about REM and doing something about back sleeping is easier said than done but it is worth trying.

Yes, seemingly staying off the back was a bit of a failure last night. I woke at one point and knew I was on my back, then again in the morning. Wife says I'm almost always on my back when she gets up. So tonight I'm going to make it a bit more difficult by adding a wall of pillows. I'm pretty convinced it's a back sleeping problem over an REM one, or at least going to attempt to rule out the REM at the least. My appointment is at the end of this month and if I am still consistently in and around 5 I am going to be asking about a more powerful machine. I think the mask is a decent fit. I have no idea if NHS does others or not, a quick look shows they are quite pricey. Got a bit of reading to do around biPAP and APAP to really understand the difference in the machines but ultimately you have confirmed what I thought, that the machine doesn't go to the heights I require.

I think really, although I'm going for sub 5's before my appointment, it's not going to stop here. I would rather a machine that meets my needs no matter how I sleep, but getting those sub 5's in the meantime means I get my licence back. All the more important now because my wife has just broken her foot and can't drive for 6 weeks. I seem to have taken to the machine no problem and don't use the ramp at all, starting at 16.5 without any problems getting to sleep. I feel I can take more pressure on that as well.

thank you for your time and advice once again, so very helpful.