Airsense 10 Elite: can't breathe in

[vometia]

Hmm, studying the results further, the polysomnography says I have about 17 arousals per hour on average, and the motion detector is picking up about 25-35 full awakenings per night (I mean long enough to have some memory) which is in line with my experiences; as is the about six hours' sleep in total. My blood oxygen is typically 96% or more so that shows the CPAP is working as intended, and my arousals when untreated were about 55 per hour.

But 17 per hour is not awesome and I guess it's not surprising that I feel utterly knackered and depressed all of the time. The reason behind it is unknown and sadly the clinician seems to not be showing any inclination to find out: well, I guess that much is obvious given that it's taken 13 months since referral just to get these results. It seems her general assessment is that my sleep is adequate, though it's hard to understand why anybody could arrive at that conclusion, let alone the senior sleep consultant in my area. Sigh.

Anyway, it seems that no matter how effectively (or even not) my CPAP works, with such disjointed sleep it's ultimately not going to make much difference. Which is what I've been telling them for over 10 years but it's very hard to get my voice heard.

[rick blaine]

Hi vometia,

You say you're posting from Oxford. I assume you mean Oxford, England – just a few miles along the A40 from me.

It does help in this US-based forum if you add in that 'England' bit. There are 20 US states with an Oxford in them. And speaking for myself, if I know which place you're from, then I can better tailor the advice I give you.

You mention a number of things across several posts which suggest you and the UK system aren't quite dovetailing. Here's some background info that may allow you and the system to interface better.

1. There are 150 foundation trust hospitals in the UK. Not all of them have a sleep medicine department, but most do.

Each sleep medicine depart has its own policy on which machine to issue. Since NICE guidelines say a fixed-pressure is fine for routine cases, that's what some departments go with.

But across the country some departments do better than the NICE guidelines and issue an auto-adjusting machine - to everybody. Not just the 'more complex' caees, and not just to 'the people who make a fuss'. Everybody.

I agree that's a bit unfair. But it's better, I think, if you know the wider context.

2. Some departments issue machines with a cellular phone chip in them – so they can monitor and manage patients' progress without the patients having to come in to 'the clinic'. That's another variation from the NICE guidelines.

3. You mention asking for a different brand of machine. Without you changing sleep medicine department, that's unlikely. Most sleep medicine departments in the NHS plump for one or other of the two main manufacturers, Philips Respironics and ResMed. They then buy in bulk.

If you're not getting the optimum treatment from the machine you've been issued with, you might consider buying your own machine (plus humidifier). It's not, IMO, a huge sum of money - especially is you spread the cost over the average lifetime of the machine (a conservative figure is 10,000 hours – roughly six years). A ResMed auto plus humidifier direct from them is £720 in round numbers – and there is no VAT. The PR equivalent is £100 or so cheaper.

4. If you buy direct from Philips Respironics UK (0800 130 0844) or from RedMed UK (0800 907 7071), you will need a prescription. Your sleep medicine department can and should provide this. And nowadays, they can fill in the 'scrip' electronically and send it to either Philips Respironics UK or ResMed UK for you.

If you have your own machine – like I do – your sleep medicine department should still see you as a patient - and provide masks, and replacement mask parts – even the temporary loan of a back-up machine if yours ever fails (altho' that's a very slight possibility: these machines are generally reliable. I mention it just so you'll know you're covered.)

5. There is an advantage in buying the same brand as your sleep medicine department has standardised on – they will have the proprietary software for it. NHS hospitals do not use SleepyHead.

One more thing for now. Neither Resmed nor PR will respond to your e-mails about your treatment because they are legally bound not to. You are under the care of your consultant: if the manufacturers were to start treating you (as opposed to selling you a machine) then they would be breaking UK law.

I may add more later. See how you get on with this.

[vometia]

Oh yeah, I'm in Oxford in Oxfordshire, in Englandshire. I should interfere with my profile again.

I have noticed that in general, the standard of care in Oxford is extremely poor. I put this down to the number of clinicians trying to climb up the greasy pole of academia and getting into the university through the back door. I've encountered a lot of clinicians in various disciplines who clearly have zero interest in treating patients, some of whom can get actually very nasty indeed if they feel pressured to do their job. I should add that I have encountered some excellent clinicians and medical staff in general, but the good ones seem unsurprisingly over-worked and over-booked to pick up the slack. A lot of the budgets do seem to be, erm, alternatively prioritised in this area which is probably why CPAP with no maintenance and a replacement schedule which is "when the patient complains loudly enough" is a thing. The nurses I've seen try their best to keep patients like me involved (and seriously, they're very good) but it's what they have to work with.

From my own experience, the head consultant in the respiratory sleep department seems excellent, very personable and knowledgable, but clearly has a case load way in excess of her ability to cover. As it is, I've only seen an actual consultant once in the 15 years I've been a patient.

Then there's the neurological sleep department at the JR which is so bad that even the GPs openly criticise them in front of their patients which... well, it's not surprising and actually it's a good thing that patients don't get their hopes up because they're crap. About the only thing they offer is CBT which is so often used in the "blame the patient and maybe they'll go away" approach to medicine. A former GP said about my neurological consultant that to date he'd yet to refer a patient to her who'd actually received any treatment at all but her position seems to be unassailable.

I'm not sure about buying an APAP: partly as I'm not sure if it would help as I don't think breathing is the source of my problems; partly as I'm also a bit resentful as there's the gender stuff I mentioned which has already cost me upwards of £20,000 over the past five years. Yeah, it's supposed to be covered on the NHS but they often won't pay or will otherwise side-track patients for years until they give up and fork out for it themselves, as I did. So yeah, feeling kinda miffed that I'm paying hundreds of pounds every month for both national and private insurance and then have to pay 100% of the cost of treatment myself anyway! Grr.

Sorry. Severe tiredness has brought my bad mood back again. Sometimes I do feel a bit Jekyll and Hyde.

[palerider]

Thanks so much for the clarification! I'm actually not desperately keen on pink so I don't feel I really missed out there. Having said that, I'm also not especially keen on the S9's standard silver

How 'bout mine?

[palerider]

With the A10 that's something for me to bear in mind if they decide to randomly offer me an APAP:

I recommend the AS10 Autoset 'For Her' for everybody, just because I think it's better to have the option to give the extra treatment mode a try, It works better for some women, and some guys, and doesn't work well for some other women or men... just depends on the individuals needs.

[vometia]

How 'bout mine?

I spend way too much time on Facebook given how long I spent scrabbling about trying to find the "love" reaction. That is really awesome.

[palerider]

It does help in this US-based forum if you add in that 'England' bit.

Says the guy without a location tag in his profile

[palerider]

How 'bout mine?

I spend way too much time on Facebook given how long I spent scrabbling about trying to find the "love" reaction. That is really awesome.

I haven't personally seen anybody doing wraps for the air10 series, but they would be easy to do... all flat planes and simple curves.

[vometia]

I haven't personally seen anybody doing wraps for the air10 series, but they would be easy to do... all flat planes and simple curves.

Now I want a sort of tie-dye A10 that lulls me to sleep with Hawkwind songs.

Oh, and also nice to see Beastie doing the rounds! Speaking as someone who spent a lot of the week swearing at her FreeBSD box, though I have to admit a lot of that was my own fault (out of date ports, and also using -current definitely counts as, er, misadventure).

[palerider]

Oh, and also nice to see Beastie doing the rounds!

You're my new bff..

[zonker]

Oh, and also nice to see Beastie doing the rounds!

You're my new bff..

you two aren't going to start speaking to each other in binary, are you?

[palerider]

Oh, and also nice to see Beastie doing the rounds!

You're my new bff..

you two aren't going to start speaking to each other in binary, are you?

"course not, hex is more compact.

57 65 65 21 20 4c 65 74 27 73 20 63 6f 6e 66 75 73 65 20 5a 6f 6e 6b 65 72 21

[vometia]

"course not, hex is more compact.

57 65 65 21 20 4c 65 74 27 73 20 63 6f 6e 66 75 73 65 20 5a 6f 6e 6b 65 72 21

Of course being ex-DEC I'm kind of duty bound to prefer octal. Even though I don't. Unless it's 36 bits' worth.

[vometia]

So, back to the subject... well, almost, I'm thinking more sleep in general than CPAP or the A10, but it's my topic and I'll cry if I want to. Or something.

I'm seeing my GP (er, regular doctor, for non-UK types) a week Monday and wondering what to say to her about the results of the sleep study which she's also been getting increasingly exasperated about for the past several months due to the lack of progress.

The main problem is that the results say that my sleep is appalling; but the letter from the consultant isn't congruent with them at all and IMHO pretty much entirely glosses over them and trivialises my sleep to basically just say I'm getting up once in the middle of the night so it would be fixed by spending less time in bed. Which is not at all what the results say, my layman's opinion that, even with 100% successful CPAP, I'm still having on average four major awakenings per hour and another dozen or more minor awakenings. Nobody is going to feel refreshed after that. As an aside, I'm wondering if the consultant even knows that all of my diagnostic information was enclosed or if it was courtesy of another staff member who's aware of the problem: I mean the technician who dealt with me was excellent and the nursing staff I've encountered seem a lot more sympathetic than the consultants.

I'm not sure what's the way forward: it can be quite difficult being referred to a different department (though probably not impossible) which is slightly compounded by my GP not being quite assertive enough with other professionals. I mean she's an excellent doctor and a lovely person... but a bit too lovely to shout at people when they need it.

As far as the neurological sleep clinic is concerned, I'm still undiagnosed after all this time but not yet discharged: they've asked for a number of blood tests which they say is to determine if I have narcolepsy. I wasn't even aware that narcolepsy could be diagnosed by a blood test but I do have my suspicions that some of their screening is less to do with investigating the nature of the problem and more to do with attempting to screen me out so they can say "not our problem to deal with."

As things stand, I feel they really suck at the moment and I feel thoroughly demoralised. The situation with the neurological sleep department has been going on actually for several years now and it feels that they are repeatedly asserting that I'm just a time-waster and, well, not their problem. Interestingly, the previous consultant I saw there, the one who suggested I try CBT (guffaw) and also that I may as well stay on zopiclone basically forever, which was terrible advice as it just made me more depressed, is also the partner of another specialist in mental health whose disorganisation caused me to have an autistic meltdown and who then phrased the letter to my doctor implying I'd just had a strop and stormed off. Not directly relevant but these are the sort of people I'm dealing with.


Edit: oh, and about the breathing problem, had it again last night even with EPR on: breathing in just caused the mask to basically collapse and totally block up. I'm fairly sure it's not a mask problem as the reason I'm breathing in that hard is because the airflow just isn't there; I restarted the machine twice, same problem, unplugged it from the mains to give it a proper reset and tried again at which point it behaved. But also by that point I'd taken the mask off and put it back on, but I'm fairly sure I'm not wearing it in a sufficiently weird way to obstruct airflow and it never happened with the S9. Haven't looked at the data on SleepyHead but I know there's no point as it always just indicates everything is normal in terms of pressure (even though it's obviously not), just that my breathing got slightly erratic.

[palerider]

even with 100% successful CPAP, I'm still having on average four major awakenings per hour and another dozen or more minor awakenings.

.... 4 awakenings per hour isn't anywhere close to "100% successful cpap".

Edit: oh, and about the breathing problem, had it again last night even with EPR on: breathing in just caused the mask to basically collapse and totally block up.
[/quote]

Get some tubing, a ruler, some water, and an oxygen connector.. make a manometer, see if the machine isn't putting out pressure it is supposed to... if it's not, take it back.