CPAP can I help it along?

DomP · Post by **DomP** » Wed Jun 13, 2018 4:57 pm

That's a very informative video. However, I followed that one with another that told of a basketball player? Who died at 43 because he didn't use his CPAP. Because his body was used to wearing it. is this a consideration or should I stop watching videos? lol

DomP · Post by **DomP** » Wed Jun 13, 2018 5:06 pm

Thank Rick, I will certainly be posting what is said, the appointment isn't for another 10 days or so, so I have some time to experiment with positions and settings. Having watched the video above, I am going to try and sleep on my side, but more over the edge of the bed so that my face is downward. That is a normal position for me as I go to sleep before CPAP started, exception being a bloack behind me to stop me rolling. I'm hoping that the airways have a better chance of staying open that way and see a significant drop in the OA reading. Report back in the morning before work.

palerider · Post by **palerider** » Wed Jun 13, 2018 9:28 pm

DomP wrote: ↑
Wed Jun 13, 2018 4:57 pm
That's a very informative video. However, I followed that one with another that told of a basketball player? Who died at 43 because he didn't use his CPAP. Because his body was used to wearing it. is this a consideration or should I stop watching videos? lol

The take-away is that choking in your sleep is *bad*, so do something to prevent that from happening. Lest you choke to death.

poppi2 · Post by **poppi2** » Wed Jun 13, 2018 10:54 pm

DomP wrote:.... I am going to try and sleep on my side, .....exception being a bloack behind me to stop me rolling. ....

Just have the missus sleep while spooned against your back. She may have a miserable night, if your sleeping self insists on rolling to your back. Good luck, Earl

ps, keep asking questions. I’m still learning.

DomP · Post by **DomP** » Thu Jun 14, 2018 3:11 am

Last night I strapped my motorcycle helmet to my back (May as well use it for something, right?). I looped my dressing gown belt through the hoops and tied at my front. Pretty much stayed on my right side all night until morning where I unhooked myself and woke up cuddling it with my back right on the edge of the bed. It was an intentional turn over as being a larger type I do suffer a bit with back ache. I'm stiff this morning between the shoulder blades. I know that weight is an issue, so this is already on my radar. I got my gym fob this week, so I'm going to find a P.T. Anyway, that's beides the current point.

Guess what....

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DomP · Post by **DomP** » Thu Jun 14, 2018 3:14 am

I'm very relived to have found the problem, and all thanks to you guys. I'm going to continue side sleep for as long as my back can take it, but importantly I now know the cause. Or at least have a strong feeling of. the next few days of the same will further confirm what I have learned from you all. Thank you. I now feel vindicated in my search for self help and will feel less bad speaking to the clinician and telling her I've been fiddling with the machine settings.

DomP · Post by **DomP** » Thu Jun 14, 2018 3:19 am

Looking a little closer at the sessions of use, I can see that the first session closed on few Hypopnea, the second I can't see a reason and the third ended same as the first. There's no great jumps in the numbers for each session on it's own, just where they are positioned. I'm also seeing the red pressure line hitting it's ceiling. Surely my clinician should have been seeing the same thing?

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rick blaine · Post by **rick blaine** » Thu Jun 14, 2018 6:45 am

Hello again, DomP,

We can only guess what deductions your consultant makes.

With regard to changes of pressure - PR auto machines have an algorithm that looks at a moving four-minute window. And depending on what the software 'sees', it raises the pressure by 1.5 cm - and then 'looks' to see what effect that has.

If that takes care of things, fine. If not - as shown by the next 'window' - it raises the pressure by 1.5 cm again. And so on.

(The algorithm also reduces the pressure in much the same way - after it has 'seen' a period with no troubling events.)

In your case, the machine is already at 19 cm. It can't go any higher that the ceiling, the maximum.

In a sense, you are running pretty much in fixed-pressure mode. Another reason for saying: it would be worth trialing you on an auto bi-level.

Pugsy · Post by **Pugsy** » Thu Jun 14, 2018 7:47 am

Now you know who the culprit is.
The reason I suggest the auto at 19 and max at 20 instead of cpap mode at 20 was because in cpap mode the FL flagging is turned off.
If the FLs were happening I would want to know about it.
You could also try min of 20 and max of 20 in auto mode. It will pretty much make the machine function like cpap mode at 20 cm but still keep the FL flagging turned on. FLs are important enough to be part of the driving force of the algorithm for pressure increases.
Why Respironics turned off the flagged in fixed mode is beyond me. At least people should know if they have the FLs in fixed mode even if the machine can't do anything about them in fixed mode. It's always been a pet peeve of mine. I think it is a stupid idea. But then I must have missed the email where Respironics asked my opinion about their FL flagging system.

I don't think a min of 20 and max of 20 is going to be enough to keep your OAs down enough when on your back.
But it is something worth trying while you are trying stuff.

Yes, when we have various aches and pains we can't easily stay in one position all night. Some of us need to move to relieve aches and pains (and I am one of them myself) and if we can move around we will invariably end up on our back even if we meant to just turn over to the other side. That's part of the reason I say it is easier said than done. Staying in one position can cause pain and eventually the pain will start being a factor in sleep quality and disturb our sleep. Just trading one sleep disturbing problem for another.

I am with Rick still....I vote for an auto bilevel if at all possible. Probably would let you use lower (a little bit) when not on your back and increase when needed on your back to probably above 20 cm. The you could sleep in any position that you want or need to sleep and not worry about it.

Jas_williams · Post by **Jas_williams** » Thu Jun 14, 2018 12:42 pm

I am with the NHS in Somerset,

I will be getting a BILevel trial next month one month long then followup if that does not solve the periodic breathing then a special application the the commissioning unit will be required for an ASV (It's now 9 months since starting CPAP and six months since the last hospital overnight study confirming periodic breathing).

I suffer from Periodic Breathing (AHI varies from 0.1 -33 depending on the night average whilst using the Resmed Autoset machine AHI of 6)I have purchased my own ASV and get 0.0-0.1 AHI every night but I am still following the NHS protocol as I have not been able to get to see anybody since my 30 day checkup last september, as I have yet to see a consultant only a sleep nurse everything else is done by tests and letters but it does show a bilevel will be issued if medical need is proven.

DomP · Post by **DomP** » Thu Jun 14, 2018 2:22 pm

Hi Rick, That 4 minute window is great info in helping me understand what the machine is doing and when, thank you.

Pugsy, having (hopefully) confirmed my culprit, I'm fairly relieved it isn't (yet to be fully confirmed) mostly REM as I am able to treat it now. Interesting that they have switched off the FL in static mode, certainly and always will be a consideration regardless of mode you use your machine at. Perhaps a strongly worded letter from us may make them see sense and consult you on any future changes. haha On a serious note, you are clearly of a level in this subject that your opinion is always very welcome. I know I'm not the first you've helped and surely won't be the last. People like yourself and Rick, who on this thread have helped me, are a special kind. You give up your own time to help others for no gain. I can't thank you enough. I would never have got this far (or at least not for a long period, and certainly not with the understanding I have gained of the ailment) without your help and guidance, both of you.

I called St Georges today and asked for a call back. I was actually called by the consultant, not my clinician/nurse. It was a positive conversation where I fessed up to my research and entering of the clinician setting and tampering with the auto min settings as well as the side sleeping experiment. She did not seem too bothered as I did use the terminologies I have learnt these past few late nights so she could see I have taken an active interest in getting my problem sorted, rather than just leaving it to 6 weekly appointments for the tweaks. I told her of my experiment and findings and talked along the lines of issuing a humidifier and is open to discussing a bilevel machine too. Hopefully they will see for themselves that bilevel is what I need. At this time I have no idea what machines are available but they have moved my appointment forward as there was a cancellation. This means I will be seeing them Monday morning at 10:30 instead of 27th, which is great news. They want to see the readings and make a decision from there so wouldn't commit anything until then, which I can understand. They are not going to take what i say, someone who has done a weeks worth of research, over casting their own professional eye on the data. I completely understand that. But, knowing what I do now know, and taking them the data to see for themselves, does give me hope that a bilevel machine will be issued. I will of course be reporting back after the appointment to let you know. I will be pushing them towards the ResMed as advised if at all possible. I think I prefer the "all built in" style rather than having initial tests without parts of it as with the Respironics not having the humidifier and heated pipes.

In the meantime, I will do what you suggest regarding the auto min 20 and auto max 20, just to see if that makes a difference to the readings. It may have a slight effect. Again I will be making use of my crash helmet as a means of keeping myself on my side.

Jas, good to hear further options are available. I will need to have a read around ASV as I have not got that far yet. Good luck with your appointment though.

The end goal from here, once issued with the correct machine, is to lose some weight and steadily, if possible, reduce the reliance on a machine to help me breath. I have read that some people have completely come off of theirs just by losing weight and others by dietary changes too. My journey is a long way from done yet, but I feel I have come further in the last few days since being here than I did in the first near 2 months being blindly led down a path which I had no clue about.

D.

rick blaine · Post by **rick blaine** » Thu Jun 14, 2018 2:59 pm

Hi Domp,

Good news.

A procedural point: take your machine with the SD card in it on Monday. They will plug the SD card into their PC and read it using the Encore software from Philips Respironics.

You can, if you wish. take print-outs from Sleepyhead with you - and your consultant might look at them - or they might not.

What you want is for the choice of software not to be an issue. If they're more comfortable, or can get to the info they need quicker, using the system they already know, let them use it.

The key point - your improved AHI numbers show up the same in any language.

DomP · Post by **DomP** » Thu Jun 14, 2018 3:03 pm

And that is exactly why I feel so relieved. I can't tell you how down I was getting at every tweak making little to no difference. It really was affecting nme mentally although in the tiredness stakes I felt great, I was getting down about not getting my life back completely.

Yes, I have to take the machinbe with me for each meeting. For some reason they can't log in and see my data on the Phillips platform. No idea why, but the consultant did say today she will be contacting them. All the details (email etc) are correct.

DomP · Post by **DomP** » Fri Jun 15, 2018 3:24 am

3 sessions last night with distinct differences. First session I woke on my back. Second I was side sleeping and third I was cuddling my helmet. I think I love bikes! lol To be fair, I was awake for quite a large part of the final session, but there was a sleep moment in that 2 hours.

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DomP · Post by **DomP** » Fri Jun 15, 2018 3:27 am

Can someone help me understand and or calculate the leak rate please?

CPAP can I help it along?

Re: CPAP can I help it along?

Re: CPAP can I help it along?

Re: CPAP can I help it along?