Failing at CPAP

[alical]

...so I've been struggling with CPAP for over a year now, but although I have persevered with it, only not putting the mask on when I've had a really bad cold, I have not cracked it yet.

I usually find it difficult to fall asleep anyway, let alone with Lord Vader clamped onto my face. When I do fall asleep, I wake up when the pressure suddenly increases, so I wake up several times an hour...much like I did before getting the CPAP machine. In recent months I've been getting very painful stomach cramps from swallowing air. I was told that I had no significant leak and that aerophagia passes, but mine didn't and got to the stage where I couldn't get up for a few hours some mornings and so had to go to work later. As for the CPAP pressures, they commonly peak at 13, I think, so not particularly high, although once or twice they have gone up to 16. I am now taking Omeprazol morning and evening, which seems to have helped a little. The AHI fluctuates between about 2 and 19, according to the machine.

At my recent follow up sleep clinic appointment, the sleep physiologist said that the CPAP treatment was clearly not working and said that she had 2 options: either to refer me back to the consultant or to try me on a different machine. I am now using a Respironics Sestem One Auto, whereas for the past year I have been using the ResMed S9 Auto. She also gave me a Quattro Air mask in medium, instead of the small I was using.

If this doesn't work and they refer me back to the consultant, are there any other options - my understanding is that CPAP is not only the 'gold standard' treatment, it is the only treatment.

So, Girls and Boys, your thoughts and advice please!

[Grumpy]

me too!

I have tried numerous different masks (Quattro Air and Mirage Liberty being the best ones) and even bought my own S9 Auto to replace the clinic supplied S8 fixed. But a combination of asthma and repetitive nose bleeds has defeated them all.

However...

Buying an adjustable bed has been my saviour. Sleeping with the head raised a good 6 inches or so gives me a better night's sleep than cpap has ever managed. When I stay in a hotel (I play in a lot of Bridge tournaments) I simply ask for some extra pillows and put them UNDER the mattress at the top of the bed. Its not quite as good but better than nothing. Might be worth trying at home.

I bought a Sherbourne bed which comes with a 5 year guarantee and can support up to 25 stone. I have the double model (two 3ft wide singles joined together) which is shown on the front page of their website:

http://www.sherborneupholstery.co.uk

[alical]

Thanks Grumpy - I shall look at the beds. I informed the Loving Husband ages ago that I would like an adjustable bed, but he might take some convincing, as we've only recently bought a new one. I shall be working on it!

The Respironics machine is doing ok so far - I haven't suffered aerophagia for over a week, but the AHI was 17.8 last night and 'large leak' was 11%...I'd like to get that AHI down, but it fluctuates widely from day to day.

Perseverance.

[symmit]

It sounds like you've been fortunate to get an automatic CPAP machine, but that it is set to the default minimum pressure, so it's rising as you need more.

I'd talk to your clinic about increasing it, if it rises to 13 from a minimum of 4 then it's likely to wake you, if you're feeling brave I'd be increasing it myself a little at a time until you get to a point when it's not rising automatically by such a large amount.

Good luck!

[alical]

Thanks Symmit. The clinic took away my auto CPAP machine last November when they deemed me compliant, however, I couldn't cope with the fixed pressure of 12 - I felt as though I couldn't breath - so they gave me back the auto CPAP. It took a lot of asking before they'd give me a humidifier too, but that cold air up the nostrils is a killer! (I sleep with the window open.) I wish I could just take a sleeping pill to knock me out sufficiently to breath without noticing the pressure. But as I've had difficulty falling asleep and/or staying asleep for years, I tend to indulge in a lot of wishful thinking!

My next follow-up appointment at the sleep clinic is in late August, so I'll discuss it again then. Some of the sleep physiologists are more patient and understanding then others of course...

[martin]

Its really really worthwhile persevering with the little windy beast. I can't think of any other treatment that has changed my life as much. No drugs, no knives and no cauterisation, tried them all and no blepping help. Despite the occasional night when we have a falling out and she refuses to sit properly and blows wind in my eyes there is no comparison to the fat, balding tired wreck that i was about 4 years ago compared to the fat balding bright eyed bushy tailed bundle of energy that I am today...ok , slight overstatement but 6-8 hours sleep with cpap (including occasional fights with the hose mask) leaves me with full energy for the day as opposed to ten hours of snorting like a gasping water buffalo and being a zombie throughout the day. I also find my ribs don't hurt as much as my better half doesn't poke me as much. Finding a mask you can work with has been my trickiest bit and that needed a few goes until I found a system I was happy with. Stick with it, Gail (as in gale force wind) and her travel friend Baby Gail are my best friends and if it was a choice between them and the wife then alas the wife loses, fortunately she likes the absence of my snoring and even the little whispering whoosh has become a tune to go to sleep to.

[dravidio]

The NHS is great, and if you really can't afford anything else, then you are stuck with it. £495 would buy you a DeVilbiss Sleep Cube APAP with exhale relief - and it's an extra £150 for the humidifier. I have just had to replace my older Sleep Cube after 5 years solid use. I still have the old humidifier. The new cube gives you instant feedback... It took me nearly two years (and a variety of masks) to get used to APAP but now I could not sleep without it and it has made an amazing difference to my health. £650. Less than a fortnight's holiday in Spain...

[dravidio]

And I know how to get into the clinician's menu to adjust the machine myself, and you can access the full reports from the codes via a simple web link. Take control - don't let the NHS fob you off with inferior equipment and poor advice.

[alical]

I agree Dravidio, the NHS is great, but waiting times are long and the staff are too busy to spend ages with needy patients. On the one hand they say that we should come back if we have problems with CPAP, on the other some of them suggest that one just has to get on with it. While i appreciate that the cost of a good machine and is not particularly high, I am reluctant to spend such an amount until I know that I am tolerating the treatment - otherwise it's merely an expensive Objet d'Art. I am still at the point at which I would KILL for a good night's sleep.

I have been reluctant to use SleepyHead, as I already obsess about my sleep problems and don't wish to become completely fixated by them - it's easy to develop a 'woe is me' thing. I thought I could understand the display on my Respironics System One, but last night I managed only 0.18 hours (far too hot and sticky last night) and the AHI was 36.7...which I don't understand at all. I assume that because I toss and turn (probably trying to sleep on my stomach as before) I must be dislodging the mask.

I haven't yet experienced any of the health benefits of CPAP use that I've read so much about, but I live in hope!

[dravidio]

Don't give up - as I said it took me two years before I got it right and there were times when I felt like you do. If you would KILL for a good night's sleep would you invest a few hundred pounds? 1.) You need a good APAP machine - with the correct settings - not all machines are equal 2) I would also recommend a heated tube to warm the air. 3) You need the right mask. Personally I use the DeVilbiss Sleep Cube with exhale relief and humidifier and a nasal only Sleepweaver mask. I am not saying that is the best thing for everyone. If you don't get on with the machinery - there is a second hand market here for such things..take control - My AHI index was 35 - 40 before treatment and now averages 2.5 - which is normal. If you are used to sleeping on your stomach - well you will have to change. I thought I was a mouth breather - but convinced myself to only breathe through my nose...The sleep cube can tell you if your mask is leaking or comes off in the night. The medical opinion is that you should not take sleeping pills and use APAP or CPAP - so your doctor will not prescribe them. My opinion is to tell them to fuck off - they can be useful. You can get Zopiclone online and half a 7.5 mg tablet will help you to tolerate CPAP now and again. If you die doing that I am not responsible. I am only relating my experience - I do use them now and again and have had no problems....you have to balance risks and benefits....don't let the medics tell you what you have to do - they don't know you

[alical]

Well, Girls and Boys, at my last sleep clinic appointment I dared to suggest that I was considering investing in my own APAP machine, specifically the new ResMed Airsense 10, which I've had a look at in their London clinic...you'd have thought that I'd made an indecent proposal!

I said that I would need my prescription, at which they pointed out that they don't yet know my prescription, because 16 months on I'm still not doing that well with the treatment (my AHI is usually around 13-15). They then said that the new data card might not be compatible with their software, to which I replied that it is the same as that used by other ResMed machines, such as the S9 that they had previously given me. They explained that their contract for the next 2 years has gone to Respironics and that would I be making it difficult for them to treat me if I bought a different machine (ignoring the fact that until recently they were handing out ResMed machines, which I doubt they've exchanged for new Respironics ones).

So I'm left wondering where I stand...and how I get my prescription if I do decide to buy and even whether I shall end up have to go for private treatment, which is not the way I wish to go.

Your thoughts, Forumites?