[CPAP] Guidance required, 10+ months and no progress!

[Spy Car]

One thing I noticed looking at antstevenson's charts (which may or may not be of any significance) is that every single CA came on during a time of falling pressure. Sometimes it was a during a very slight decrease in pressure, other times it was during times of steady fall off.

I'm not sure this has any significance, but it jumped out at me.

Bill

[antstephenson]

Hey guys, reaaaaaaaaally appreciate all of the comments! lots of people to reply to so here goes ..

Hi AntStephenson

Welcome to the forum. You will get great guidance here from the Gurus here.

Whilst there is a sticker on my CPAP which says it belongs to the NHS, I really do not see anyone coming to my house to confiscate it. My dealings with Guys in London took a much much longer time. All of the medical people are absolutely great in person when I do see them but due to the NHS being over subscribed and soaring costs, the patient to medical personnel ratio is very high with far too long wait time.

You have good access to the doctors but the Gurus here will help you fine tune your personal requirements.

Do you have a heated tube and humidifier? I was not given one to start with on my home titration trial of 2 weeks which made therapy very difficult. I was told humidified air with the trial APAP would make it personal to me and the APAP was for general home titration trials. after that I was then given a CPAP with the humidity tank and heated tube. I struggled with the CPAP to start with with aerophagia and huge leaks through a full face mask. You have pillows which I have found to be better.

Are you a mouth breather? If so, you might find that an open mouth is causing leaks which may be an irritant to sleep. I found that it was the leaks whoosing onto my face, my pillow, my hands that irritated and woke me up. Many here recommended a soft cervical collar which I bought online from the Complete Care shop. This helps obstructions by aligning the neck, preventing chin tuck and also helps with keeping mouth shut. Try pressing your tongue against the roof of your mouth to prevent leaks and also to prevent air escaping into your gullet, causing aerophagia. Some use a chin strap. I got one online but it became loose after one use and was not helpful. Resmed's chin strap may be better for this purpose.

My therapy was really broken as well to start with and I was in bits. Slowly but surely, with a lot of encouragement and personal help, it all dropped into place for me, much thanks to all.

Keep with it, as you know, restful sleep draws rewards.

The best

AI

Thanks for the comments - I'm required to take my machine to the NHS check-up every 8 weeks or so, I guess during this they can choose to take it from me and discharge.

So I have a humidifier, which I just got recently at my checkup, told him my mouth was pretty dry on the odd occasion, but not really uncomfortable, but he was fine to give me one. I just have the standard one that clips into the machine. I have a chin strap, my doc was happy to provide one, but he thinks that firstly my leakage is fine, nothing abnormal without using it and he feels they're a bit of a gimmick and if you want to open your mouth during your sleep, you will. I would prefer not to wear it, I'm a pretty sensitive sleeper, so the extra stuff on my face would just be uncomfortable. 

I'll be totally honest, I feel I've hit a brick wall and that it'll never improve. I really appreciate the kind words!

Great job of posting the charts.  That sure looks pretty good while you're on the machine.  Your pressure is averaging around 7.5 cm and in these two charts, goes up to between 9 and 11 cm.  What we want to do is get you as comfortable as possible so you don't quit during the night.  So, I think you should consider raising your minimum pressure and adding some exhale pressure relief (EPR).  This will do two things.  Pressure will be less variable, and breathing should be more comfortable with less effort. 

So for starters, if you're game to try some changes, I think a pressure of 7.0 to 7.4 would be a better minimum.  I also suggest you add EPR full time with a setting of 1.  That will make your exhale pressure lower by 1-cm.   It sounds like you have a good relationship with your doctor, and if you feel better asking him about trying these settings, that is fine.  I think you will find them just a bit more comfortable, and might get you over that 1.5 hour hump.

I'm totally up for trying anything, BUT.. I did try this for a night or so, I can't recall what pressure I chose, but it was similar to your suggestion, I woke up at my usual time with a lot of trapped wind. I can try this again tonight and use the EPR. He's fine with me changing settings, I even apologised about it, he said don't worry and try whatever I'm comfortable doing.

(edit, I don't disagree with sleep rider...we posted about the same time)
The machine isn't the issue, it's you not wearing your mask. Taking it off every night is still at week one. You really haven't started yet
You have to sleep with the mask on, if you wake up and want to take it off. sit up and do so, so you don't fall back to sleep without it. If need be, get up, read till you are tired again.

Put the chin strap over the headware, to make it harder to remove, half asleep. wrap bandages around your head, do whatever it takes.

You will get use to it, it takes time and persistence. none of us adapted to it in one night and it's normally counted in weeks or months till it's just part of you.

I wouldn't really say I'm at week one, I've been trying to resolve this through another, albeit bad machine (as you can see from the original post) for some time now, probably close to 1 year. I honestly right now feel the advice you're giving is great, it's pretty much what my Doc said, I'm hoping for a huge breakthrough and one day I'll wake up and see 6+ hours on my machine! See my comments above with respect to the chin strap..

I remember when SarcasticDave was having a problem with removing the mask.  I commented to him at that time he had developed a bad habit, and he needed to develop a new habit of keeping the mask in place.  Old habits die hard, and that is all this is. It takes a fresh, determined attitude to overcome and replace the habit of removing the mask with a resolve to push through.  If we can teach children not to wet the bed, or pets to have accidents in the house, we can surely teach ourselves to leave a CPAP mask on.

Yeah, depends on the mask for me. So, if I choose something more obstructive, I'm generally more likely to remove it, so full face masks are a no-go and I've also got this comfortgel nasal mask, I forget the brand, but I tend to remove that too.

Edit: Silly me.. it appears Comfortgel is the brand.

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One thing I noticed looking at antstevenson's charts (which may or may not be of any significance) is that every single CA came on during a time of falling pressure. Sometimes it was a during a very slight decrease in pressure, other times it was during times of steady fall off.

I'm not sure this has any significance, but it jumped out at me.

Bill

Hi Bill!

Thanks for the post, I'm not entirely sure if this is significant at all. Hoping someone else could make an assessment   I'm wondering if I could email my chart and ask my doc to take a look.

[antstephenson]

Sorry to revive an old thread. But even over 6 months after my initial post I was getting nowhere, my doc put me on a full polysomnography last month and I got the results today... It turns out that despite the charts from my machine indicating I was treated using the machine, it was due to the limited data (since I was removing the mask quite often). During the polysomnography I forced myself to keep the mask on for 9 hours straight and it revealed I was having ~ 12 episodes per hour of central apneas. These episodes were documented in part on my original study nearly 2 years ago, but from what I understand they expect them to disappear in the average patient.

So, right now, I'm awaiting a call to decide which direction they will go in. From what I understand from my doc the logical treatment is to prescribe an ASV machine, but he needs to present his findings to his colleagues and see if they agree with the diagnosis, but he also suggested that they may say ~ 12 per hour is OK. I'm not sure if the cost will play an important factor here, as I understand from him the ASV machine is considerably more expensive (~ £4000) compared to my current AutoSet.

[Sleeprider]

I hope you get the ASV you should have. We really never got much of a view of your data between the time you had the Escape brick and the Autoset, you only posted once with a 2-hour sleep session. ASV can make a big difference for you if the problem was CA, but your ability to stick with therapy and keep the mask on will still be a challenge. It takes some time to adapt to ASV.

Don't get lost. If you want help with ASV we have a lot of experienced users.

[antstephenson]

Yeah the problem is I generally find the machine uncomfortable to wear (feels quite stuffy), and with waking up regularly it means I'm more likely to take it off. With the limited data that was presented at my check ups, it didn't show the centrals for some reason. It's also why I didn't post anything here, the charts were roughly the same, 1h - 1h30m of run-time and everything seeming OK.

I got confirmation today that my ASV has been ordered and I should have it within a few weeks. Counting down the days almost and really hoping its the final leg of this "journey".

[Sleeprider]

It's going to take effort and determination to get over the adaptation hump. If you can get your mind around the challenge, i think we can help you get life-changing results. It is really up to you, and you should do what you need to to psych up and make this work.

[antstephenson]

Hi,

Another follow up, I finally got my ASV and a Dreamwear gel pillows mask yesterday, it took longer than expected as the clinic wasn't comfortable with setting it up, they felt their information was a little outdated so a guy from Resmed visited the clinic and helped which delayed things a little. Haven't done any sleepyhead analysis yet, but I've set MyAir up and it reports a score of 80/100 for my first night. Here's some photos of the data:

https://photos.app.goo.gl/5HkPAKN2yRX2Td9W7

Some observations; I woke up several times as you can see from the above pics, those were concious wake-ups where I sat up, took the mask off for a bit, then put it back on. No subconcious removal at all.

New mask is nice, love the gel feel, way better than the previous pillows I had.

One major pain point for me, I've learned not to use the ramp feature on my previous AutoSet, I've been told it's almost like training wheels. But I've had to enable them on this new machine, for some reason when I'm about to drift off to sleep, the machine ramps up the pressure as it presumable detects the shallow breathing and it kind of startles me a little and wakes me back up.

In short I feel like 80/100, probably because I just didn't use it long enough, I probably feel like anyone else who's had 5-6 hours sleep, instead of 8. Although interestingly enough, my machine's interface reports a slightly higher usage of 6h45m, presumably it's able to detect when I was actually asleep, at the beginning of the night I had a 45 minute session where I lay awake for a while and got up for an hour as I just couldn't sleep, so it probably excluded that.

[Sleeprider]

We're not going to learn much from your MyAir results. What settings did you end up with? EPAP min, EPAP max, PS min, PS max?

[antstephenson]

Hi,

EPAP = 4.00 - 15.00
PS = 1.00 - 15.00

They told me I can fiddle with the EPAP for comfort (sometimes 4 is too low if I have a slightly stuffy nose, feel like I can't breath), but I need to leave PS as is.

[antstephenson]

Hi SleepRider,

I've posted a chart here:

https://photos.app.goo.gl/cY9QBSa4J6LnDvUB8

Let me know what you think!

Edit: sorry about the overlapping text, running a 4K monitor and the scaling isn't great so I've had to increase the text size so the side-bar is readable, but it makes the other text bigger too.