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Do CPAP/ APAP machines really work?
#31
RE: Do CPAP/ APAP machines really work?
Ah OK, thanks for your replies.... i suppose thats the good old British health service for you.... beggars can't be chooses I suppose. And at the end of the day as long as it improves my sleep I'll be happy.
I'll go back if I'm not getting the results i was hoping for and see what they say.

Thanks again.
Mick.
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#32
RE: Do CPAP/ APAP machines really work?
(07-10-2015, 01:57 AM)MickD Wrote: I was having a few leaks so I changed the mask from medium to large, What a mistake, it was much worse last night, I had to have the mask so tight to stop the leaks it was painful... so I think I'll ask for a medium mask again and persevere with that.

Call them and tell them what happened with the mask. Don't go back to the medium. Ask for something entirely different.

Quote:Over the last week my average pressure was 17 so they swapped the AutoSet for an Escape and set the pressure at 17.

I'm not familiar with how the medical system works in the UK, but do whatever you can to get the Autoset back. The Escape collects no data except for hours used. It's unacceptable.

Try this approach. Tell them the high pressure is not only causing leaks but is so uncomfortable you can't stand it. This may get you the Autoset back again as patients who can't tolerate the high pressure are more compliant with the Autoset as it only raises the pressure to a higher setting when you need it. It spends a lot more time at lower pressures and makes you more comfortable.
Sleepster

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#33
RE: Do CPAP/ APAP machines really work?
OK well been persevering with the machine, Hospital said if I want an Auto machine I would have to buy it myself...!!

I still think I'm getting a good nights sleep as I'm only waking up once during the night, but throughout the day I'm still so tired... I've had a blood test as they thought it may be thyroid related but that came back OK. So I'm not sure what the next step is, I will be going to the doctors to see if they have any ideas but for now it seems I'm an enigma..!!

Has anyone any ideas ( I understand it will be a best guess ) just want other avenues to explore.

Mick.
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#34
RE: Do CPAP/ APAP machines really work?
Hang in there MickD.
The machine is going to keep you alive.
Gain some experience with it and you can tune it up to
work best of you.
(The folks here will teach you. The docs will usually just throw a machine at you and
tell you to use it. )

Sleep-well
"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
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#35
RE: Do CPAP/ APAP machines really work?
(08-07-2015, 01:58 AM)MickD Wrote: OK well been persevering with the machine, Hospital said if I want an Auto machine I would have to buy it myself...!!

Hi MickD,
If they won't go for the Auto, try asking them for the Elite which is an upgraded version of the escape but is FULLY DATA capable and can distinguish between obstructive, hypopneas and clear airway( central) apneas.
3
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#36
RE: Do CPAP/ APAP machines really work?


Did they base that fixed pressure (17) on your PSG study?

With the APAP (the AutoSet) you list 4-20 as your settings. That is the full default range of the machine. While it is sometimes the way they first prescribe (?!), most folks do better with a tighter range. You can study this here on the site and learn how to do that yourself, and we can advise.

Sadly, we know how to do this IN SPITE of the medical community, which often seems to not really care about this. Do not interpret their lack of care for this as it not being important and quite effective. It is. The APAP is a powerful tool, when configured and tweaked properly, and the CPAP is a dumb blower, which cant be configured beyond a fixed setting, so there are good reasons everyone is saying dump the Escape and get the APAP back.

One other thing that can happen with a wide open range, is that sometimes leaks will be enough to fool the machine into raising pressure too high, and this can wake you. Ironically, the entire idea of a xPAP is to get you better sleep and more consistent O2 saturation, not to wake you up rudely, so tightening the range can corral that errant behavior as well. Too much pressure can actually cause more CA events, too. Narrow the range and help minimize those events.
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#37
RE: Do CPAP/ APAP machines really work?
Hi Mick, and all the others identifying as newbies in this thread.

I'm not around as much as I have been in the past, so a readers digest version... I've been on cpap for 5 years, started on an autoset, Dr and Rt chances me a month in to a fixed cpap, for a similar reason. In Canada, they have to provide justification to prescribe apap, and they couldn't be bothered. I went from an apap set at 12 to 20, to a cpap set at 19, and from there, down to 14 after not being able to tolerate the higher pressure.

On the initial apap, first night, I slept 9 hours straight for the first time in 5 years, woke up refreshed, lost my restless legs, stopped kicking in my sleep, and stayed awake for the entire day for the first time in 3 years. After 4 weeks collecting data, they gave me a fixed cpap set at 19, the first night the mask blew off my face, second night I flung it across the room, and went back to the rt in the morning. Told them I wanted the apap back but my Dr would authorize it. Said to set it at 16. Hated it, but suffered through until my titration, where they told me my new pressure was going to be 14. At 16 I was already relapsing so I absolutely refused. Bought my own S9 autoset, and got the ResMed software from here. Set the machine up at 12 to 20. My ahi for the last year is less than 2. Pressures vary widely from 13 to 19, but average 16.5.

That, to me, justified the price I paid, and the obstinate refusal to accept 14 as therapeutic.

So, to answer the original question, yes, apap and cpap work. An autoset machine, in my opinion, is critical. Not only do they provide the data and feedback that you require to feel comfortable that the treatment is working, the address flexible enough to react to changes in your sleep patterns. With my first month, my average pressure was 19, but I couldn't tolerate 19 as a fixed setting. Why? Because in the early stages of sleep, I didn't need it. Ramp settings helped, but the fact was that after 45 minutes of ramp, I still might not need 19. And as I start t to wake, that pressure is too much, my apap slackens and lets me wake normally... Or stay asleep.

Mick, you mention that the pressure was high in the morning. It can be, that's the machine doing what it's designed to do. You'll get used to trusting it, and that pressure will reduce on its own (if you go back and insist on apap) as you adjust.

In Canada, there's are a few ways to justify autoset machines, like pressure variance of 5 cm h2o - this is what happens to me. In a week's data I see nights with averages of 19, averages of 13, and everything in between. I see nights that average 13 with a 95th percentile of 20. Fixed cpap would not meet my requirements. It might provide the minimum necessary therapy, but is that what you want? I didn't.

Another justification is compliance. Fixed 17 pressure might be something you find intolerable, so you don't use the machine 8 hours a night, don't feel less tired, don't get the full benefit. An autoset machine increases your compliance. Fight for one.

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#38
RE: Do CPAP/ APAP machines really work?
(07-01-2015, 07:21 AM)MickD Wrote: Hi,
I'm new here, I've just been diagnosed with Sleep apnea and have been provided with a ResMed S9 Auto, last night was my first try with it.... it went OK but I was still waking up, I know it may take a while to get used to it but just wondering how bigger difference the machine makes, at the moment I feel exhausted throughout the day and I'm really hoping this improves how I feel.
I have an appointment next week with the sleep clinic to see how I get on and to fine tune things if needed.

Anyone have any advice for a newbie?

Thanks,

Mick.

It seems, reading here, that CPAP is very effective, but with mechanical issues, at overcoming aponea.

Insomnia is a different problem. I too have no improvement in sleep patterns using my machine for a couple of months but the sleep specialist, in passing almost, said that it takes time for your brain to trust that you are not going stop breathing, permanently. So "give it a good go" would be my advice.

Dr Jacob Tietelbaum is an American MD specialising in CFS/FM and insomnia is a major issue there. Aponea is a separate one and he does not mention CPAP but there is a lot of good advice here. I hope I can post this link.

All the best, you are not alone.

[commercial link removed, instead, please do a Google search for "Getting a Great Night's Sleep with Fibromyalgia vitality 101"]






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#39
RE: Do CPAP/ APAP machines really work?
(08-07-2015, 01:58 AM)MickD Wrote: OK well been persevering with the machine, Hospital said if I want an Auto machine I would have to buy it myself...!!

I still think I'm getting a good nights sleep as I'm only waking up once during the night, but throughout the day I'm still so tired... I've had a blood test as they thought it may be thyroid related but that came back OK. So I'm not sure what the next step is, I will be going to the doctors to see if they have any ideas but for now it seems I'm an enigma..!!

Has anyone any ideas ( I understand it will be a best guess ) just want other avenues to explore.

Mick.

When you wake up that once during the night, do you sleep again? I'm just wondering why you're so tired during the day. I wake up in the night, and then take a pill that I've found to work without side-effects. Otherwise, during the second phase of sleep, I'm never able to sleep with CPAP on. And if I either don't sleep with CPAP, or sleep without CPAP, I start spiraling down pretty fast.

Does CPAP work? Yes, in a way that almost nothing else does. For those like me with more severe sleep apnea, it's given extra fully functioning years (perhaps decades). In years gone past, they would have otherwise just tagged me... "due to stress", "premature heart failure", whatever, as I'm sure they did for so many people.
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#40
RE: Do CPAP/ APAP machines really work?
(09-15-2015, 07:48 PM)WakeUpTime Wrote: I wake up in the night, and then take a pill that I've found to work without side-effects. Otherwise, during the second phase of sleep, I'm never able to sleep with CPAP on. And if I either don't sleep with CPAP, or sleep without CPAP, I start spiraling down pretty fast.

I agree with you. Do whatever it takes to always always always sleep with the CPAP machine. You can never get adapted if you sleep, for however short a time, without it.
Sleepster

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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