Please help! Newbie - big problems adapting to CPAP

[Waynefb2002]

Hi, I desperately need some help & advice from you all on getting used to CPAP. I'm having terrible trouble adapting to it and wondered if anyone else had a similar experience?
Basically, I can get to sleep with CPAP and I stay asleep for many hours, but I wake up absolutely completely exhausted - far far worse than without it. I feel like I have flu - completely devoid of energy, hardly able to walk, can't regulate my body temperature, can't focus my vision etc. I can hardly describe how bad I feel. This exhaustion persists until the next time I can get to sleep again (without CPAP).

I don't feel great when I sleep normally but with CPAP it's a million times worse.
I don't know what to do - I need to control my sleep apnoea and the clinic only seems to have CPAP as the solution so I need to get used to it somehow.

My AHI without CPAP was 27 (so almost into the 'severe' bracket). After getting the pressure adjusted up to 20cm, the machine does control the apnoea, getting AHI down to about 3, so on paper, it is working, but I always feel so awful.
I don't feel suffocated or panicky whilst wearing it. The clinic kindly tried several different masks so there's no leaks and is about as 'comfortable' as possible, although I do have thick red marks on my face for about 3 days after wearing it for a night.

Because it has such a devastating effect on the quality of my sleep, I have not been able to use it on many subsequent nights. If I have any appointments in my diary the following day, I could not use the machine that night, otherwise I simply would not be able to keep that appointment.

Now, I have been told by the clinic that CPAP causes you to sleep very deeply at first while your body attempts to make up all the sleep debt. This phenomenon can, apparently, make you feel worse at first. I don't know how likely this is. However, the way to get through it is apparently to keep using it every night. This for me will be pure hell, but I intend to try it.
I will cancel all my appointments for a whole week, explain to friends/colleagues etc that I won't be contactable, order in enough provisions for the week, and just do it, even if I can hardly walk or see straight.
Hopefully, by the end of 'hell week' I will have broken in the machine and be able to use it every night..... hopefully.

To be honest, I am terrified of doing this. I know how awful I feel after 1 or 2 nights, so the thought of a whole week really frightens me.

I would be extremely grateful for any advice/tips on getting through this. Thank you.
Regards
Wayne

[Julie]

What are your min. and max pressure settings? And if you have marks after 3 days you have to be wearing it way too tight, which is not good because the silicone needs to inflate and can't do it if it's mashed onto your face. Loosen up a little.

[Janknitz]

After getting the pressure adjusted up to 20cm, the machine does control the apnoea, getting AHI down to about 3, so on paper, it is working, but I always feel so awful.

If you regularly need a pressure or 20 you may need more pressure and perhaps the machine you have is not optimal. Can you download Sleepyhead and post your charts?

Julie is correct that the mask sounds way too tight. See my “Taming the Mirage Quattro if it’s a full face mask and Swift Fx fitting guide for nasal pillows.

[Waynefb2002]

Thank you both.
I will search for that post & play around with the mask again. To be honest tho, I'd be surprised if that was causing the extreme fatigue that follows after a night of use. At this point tho I will try anything!

I can't access any of the data from my machine. The data are beamed directly to the clinic and I'm not allowed to touch the SD card. However, the clinic said they were happy with all the data & set up. The only one that isn't happy....is me!

[rick blaine]

Hi Waynefb2002,

You don't say where you're from, but from the fact that you call it 'the clinic', the fact that you have a fixed-pressure machine, and from your use of English, I'm guessing that you're posting from somewhere in the UK, and are being treated by the NHS.

Is this the case?

The reason I ask is that some of the options open to you - and some of the information you will need - will be shaped by that.

On the other hand, the process of getting used to, and adapting to, this form of treatment is pretty much universal. And yes, it does take time. And yes, for many people, the first few weeks can feel like - as you put it - hell'.

Another two questions - just so I'll know - apart from the sleep apnea, are you otherwise in good health, or are you on medication for any other on-going medical condition?

The second question is: do you talk a lot (teaching, sales) or play a wind instrument for a living?

And lastly, a fixed pressure of 20 cm is quite high. Can you tell us how 'the clinic' established that?

Did they, for example, give you an auto-adjusting machine to use at home for a week, or two weeks - and then take back so they could read its data? Or did they ask you to spend a night in their 'sleep lab' while a technician varied the pressure?

[Waynefb2002]

Hi,
Yes, you are quite correct - I am in the UK and being treated by a specialist sleep clinic under the NHS.

I am on quite a lot of medication. With respect, I don't really want to publish all of my other health problems online as some are sensitive/personal. However, I don't have any breathing problems, other than the fact that I am overweight. I am not diabetic. I don't drink or smoke (but use an ecig thingy). My blood pressure is controlled with medication.
I don't talk a lot. I used to play wind instruments and sing, but haven't done for many years.

I did do an overnight polysomnograph sleep study. After that I was issued with an auto-adjust machine for a few weeks (I believe they called it APAP).
They then issued me with my current machine. I think it's quite a good modern machine - it ramps the pressure, and also lets off the pressure a bit each time you breathe out.
My AHI was then monitored at the clinic by remotely accessing the data, and they adjusted the pressure accordingly to get the lowest AHI. Again, they do all that remotely - I can't access the data or adjust the pressure.

Phew! I hope I have answered your questions as fully as possible.
Regards
Wayne

[rick blaine]

Yes, thanks for the answers.

The reason I asked about the talking for a living and/ or the wind instrument is that some of symptoms you mention suggest that you might be hyper-ventilating, and that hyper-ventilation syndrome is quite common in those professions.

Obviously, if you are hyper-ventilating while you are asleep, that's a slightly different problem - altho there's a suggestion that people who over-breathe in one context may be more likely to over-breathe in another context.

And the treatment for both is pretty much identical.

But let's assume that isn't a factor for the moment.

OK, there are two processes going on with you at the same time - which is how it is for most people.

One is the business of adapting to the process - which can include the 'making up for the years of poor sleep' phase and the 'habituating to the point of no conscious awareness' phase - which will come eventually - and replace the current stage of autonomic hyper-awareness.

The other is getting the right machine and pressure for you.

The NICE guidelines say that a fixed-pressure machine is recommended treatment for cases of uncomplicated sleep apnea.

in my personal opinion, that 'recommended' should say 'adequate'. And certainly not 'gold standard'. But that's just me.

The position at the moment is that there are roughly 150 foundation trust hospitals in the UK, each with its own budget, and each with its own priorities. Which is why, now, in some parts of the country, people are being issued with fixed-pressure machines, but in other parts of the country, people are being issued with auto-adjusting machines.

In some parts of the country, people are on the latest generation of machines (both fixed-pressure and auto) - the ones with the cellular, 'phone home' chip in them. And in other parts of the country, the sleep medicine departments are still using the previous generation of machines (both fixed-pressure and auto) and are relying solely on the SD cards for patient monitoring.

I have even heard recently of an NHS patient who was issued with a bi-level - or BiPAP - machine - an option that used to be unheard of in the NHS (because of the cost).

You are in an area where the hospital has bulk-bought a bunch of fixed-pressure machines, the latest generation - the ones with cellular link - which option lets them manage a lot more patients in the same amount of time - and with the staff they've currently got in their sleep medicine department.

Now, what's the point of me telling you all this? Well, given the very high pressure you've been assessed as needing, you might be better off with an auto-adjusting machine, or even a bi-level one. But that might not be possible 'on the NHS' in your area.

First, your doctor would have to make an 'individual funding request' on your behalf. Then, that would have to be assessed as being clinically justified. But even if it were clinically justified, your sleep medicine department might not be able to supply - because it isn't in their budget.

This is where we get to options. You are free to buy an auto-adjusting machine - or even a bi-level machine - with your own money.

The staff at your sleep medicine department - if they're like the staff at mine - will quite happily write you the necessary prescription. And I can give you the phone numbers of the two main manufacturers' bases in the UK. (In the UK, you can buy direct from them.)

One of the benefits of an auto-machine is that overall, it is more comfortable.

A benefit of owning your own machine is that you can adjust the pressures to bring them closer to what you need.

Please note that: for both clinical and UK legal reasons, NHS clinics discourage this. Some of them go even further, and forbid it.

So ... that's the first of the two parallel processes. Making sure you and the mechanical side are a match.

Other members will no doubt come in with their ideas for the human-adaptation part. I might even add a few myself in a later post.

This for now.

[Waynefb2002]

Hmmmm. There is much to digest inwardly. Thank you.
I will certainly have a play with mask fitting again now that I know that it's supposed to 'float' (rather than be mashed!) - I have read that recommended post and also watched a few videos. Getting the mask comfortable would be a good start.

I don't know whether I'm hyperventilating. Have never even thought about that.
As for buying a variable pressure machine with my own money, unfortunately I don't have any...money that is. So that's not really an option for me unless I win the lottery or something! Well, you never know.

Certainly, the clinic have never offered that option. They don't seem to be questioning whether the pressure is right or not. I have told them how wretched I feel but they never took that as a prompt to reconsider pressure or other set up. I get the impression that thats a 'done deal' as far as they're concerned and I don't have the technical expertise to question these things.

[Julie]

.

[Pugsy]

Read this manual explaining the various features on your machine.
https://sleep.tnet.com/home/files/resme ... -guide.pdf

There is data available on the machine's LCD display and how to see that data is explained in the manual.

You can use the SD card and view the more detailed data with available software if you wish.
https://sleep.tnet.com/equipment

No one at the "Clinic" needs to know you looked unless you just want to tell them.

Go look at the therapy results. I know someone over in the UK having an AHI of 15 to 20 and he's being told everything is all hunky dory...and of course it isn't.
Verify for yourself.

[Waynefb2002]

Ok. I'll access the 'clinical menu' tomorrow and see what it's set to.

[Waynefb2002]

Hi,
First, just to say that I did discuss medication with the consultant last time I saw her (end of January) and she said she didn't want to alter anything just yet.

Secondly, I've been thinking about APAP and how I might be able to save up, sell things etc to raise the cash - it wouldn't be easy, but would APAP definitely give me a better experience? If so I will think further about getting the cash together (or asking the clinic - worth a try I suppose!).

Thirdly, I accessed the 'clinical menu' settings/data on my machine. Bear in mind that I haven't been able to use it very often due to how bad it makes me feel but there are around 100 hours worth of data I think.

There are three things from these data that surprised me:
1) average AHI is around 7, which doesn't seem brilliant. (They told me it was 4).
2) there are instances of Central apnoea, not just OSA - no-one ever mentioned that so I don't know if it's important.
3) EPR (lowering pressure on breathing out) is set to 'ramp only'. Does this mean that for the bulk of the therapy, there is no relief for breathing out? And if I'm breathing against 20cm of pressure, isn't that going to be very difficult and uncomfortable?

Anyway, the data:

Mode: CPAP
Set Pressure: 20
Mask: Full face.

Comfort.
Ramp time: 10 mins
Start pressure: 4.0
EPR: on
EPR Type: Ramp only
EPR level: 1
Humidity: 4

Accessories.
Tube: slimline
AB filter: no

Options.
Essentials: on
Smart start: off

Sleep reports:

Last 1 month:
AHI: 6.8
Total AI: 4.2
Central AI: 1.9

Over 3 months:
AHI: 7.6
Total AI: 4.4
Central AI: 1.7.

(Over 6 months = similar figures.)

Thanks again for all your help.
Regards
Wayne

[Pugsy]

EPR set to "ramp only" yes...it means that it only applies to the time the ramp is used. Once you are past the time limit for ramp there is no EPR exhale relief. Ramp time 10 minutes...it takes 10 minutes to go from the starting pressure of 4 to 20. That's pretty fast for that big of an increase.

Don't go selling everything to buy an apap....your pressure is already set to the maximum of 20 cm and it's not doing a good job.
Getting an apap machine that can only go to 20 cm...isn't going to make you not need 20 cm. At best you would maybe be able to use less pressure for part of the time but I suspect it would quickly go to 20 and stay close to the max even if you were using an apap.

Go in and change the "essentials" menu choice to "Plus" instead of on. This will let you see the AHI at a glance on the machine instead of having to go into the setup menu area.

I suspect you need a different machine...one that will go above 20 cm. It's no wonder things aren't going so great.

Go get a SD card somewhere...any generic SD card will work and plug it into the slot where the SD card sits and then use the machine and the next morning pull that SD card and use SleepyHead to see when those events are happening.
The "clinic" won't ever know unless you tell them and they have no reason to be told anything at this point.

Where to find SleepyHead.
https://sleep.tnet.com/equipment

How to use it
http://www.apneaboard.com/wiki/index.ph ... d#pid73182
and I have a tutorial at the top of the Announcements section on main forum page.

AHI....it's composed of 3 category of events.
Apnea index plus Hyponea index and index meaning hourly average over the entire night.
Apnea Index or AI....has 2 categories of events....Central apnea and Obstructive apnea.
Add all 3 together
Central index
Obstructive index
Hyponea index...and you get AHI
I think the 4 that the clinic reported was probably just the obstructive part of that AI index and they didn't include the centrals.
Bad follow up IMHO and unfortunately doesn't surprise me.

[Waynefb2002]

Ok Cool, thanks.
There is already an SD card in there so I will sort out that software and have a look see what's on there. Might take me a few days to get my laptop back off my mate and sort it out but will defo do that.

So do you think I should change that EPR setting? My instinct is telling me that I should, but would value your opinion.
If it stops me feeling so terrible I don't care if the clinic get cross with me!
I know it won't lower the AHI but if I can at least use the machine on a regular basis it would be a good start.

[Pugsy]

You could change the EPR setting but to be honest I don't know that it will help or not.

Using EPR effectively lowers the pressure during exhale and there's a strong indication that you might need more than 20 cm if we are to assume that those flagged events are real and not awake breathing false positives. So lowering the pressure might allow more events to happen.

It's worth trying...heck at this point anything is worth trying. You will know real quickly if it wasn't a good idea...the AHI will increase instead of decreasing.

Just change it to full time instead of ramp only and while you are at it change it from 1 to 2 or 3 (whichever feels good). Like maybe try different EPR settings on different nights just to see if one might work out better than the other.

Using EPR effectively will make the machine function like a bilevel machine and it wouldn't be impossible for your body to actually like the way bilevel works and feels and you might sleep better and if some of those events flagged are more related to arousals than actual airway collapses and if you sleep better the arousals decrease...might end up feeling better with a lower AHI because of better sleep quality. It's a big maybe though...I can't promise that it will work for you but at this stage of the game I think anything that you can try is worth trying.
Some people really like what bilevel does (one of those people is myself) but others hate it. No way of knowing how your body will react to something is to try it.

Don't tell your Clinic though...they think they walk on water and won't like it. It's better to ask forgiveness than permission. At least that is what my husband is always telling me.
Only ask for forgiveness should the topic ever come up.

When I can see what the software details actually show and when those events are flagged and are there dense clusters...then I will have a better feel for what to offer in terms of ideas to maybe help.