Sleep Apnoea and CPAP

storker · 05-08-2020 8:38am

Dtoffee wrote: »

Always......

What happens during Sleep Apnea was described to me as someone puling the plug out of a computer without closing it down first, not something to want to keep doing as it eventually takes its toll. This could be total BS but it made sense to me as you are starving your brain/body of oxygen and that cant be good.

As I understand it, it also interferes with restorative sleep and the processing of information during sleep, meaning that tiredness isn't being reduced, and learning is impaired. It was explained to me like this: the good sleep happens at sleep Level 3, but sleep apnoea kicks in at Level 2, so you can sleep for several hours but actually spend very little time at the level of sleep you really need, because you're spending far too much time at Level 2 and Level 1.

I get drowsy behind the wheel if I have a bad night's sleep, so my CPAP goes everywhere with me if I'm not going to be sleeping in my own bed. If staying at a hotel I'll always pack an extension lead too, because hotels never seem to put power sockets where you actually need them.

Yes it's a pain taking it with you, but for me it's much more of a pain not to have it. And I'd miss its noise...

storker · 05-08-2020 8:40am

jesus_thats_gre wrote: »

Every single night for me. I love the bloody thing to be honest.

My wife loves my CPAP too.

nibtrix · 05-08-2020 12:12pm

looksee wrote: »

I use that machine and full mask, I have just had the pressure reduced to 17 from 19. I had to contact the consultant and get a prescription sent to the firm that manage my situation (I am connected by wifi to their system so they have a full record of my sleep patterns and results. This seems a bit intrusive, but it works.) Prior to that it was set at maximum 24 and indeed it is impossible to keep the mask on your face at that. I had it reduced to 20 then 19 and now 17 and it is now more manageable. I also have the memory foam masks and they are worlds better than the others, but they have to be changed frequently.

24!?! :eek: Even 17 is very high. From what I've seen online most people are set between 6-14, with 10 being the most common setting.

How long do you get out of the memory foam masks? I'm considering trying them out.

looksee · 05-08-2020 9:35pm

nibtrix wrote: »

24!?! :eek: Even 17 is very high. From what I've seen online most people are set between 6-14, with 10 being the most common setting.

How long do you get out of the memory foam masks? I'm considering trying them out.

The pressure was increased and increased with no improvement, then I was put onto a bipap machine instead (it could use higher pressures), but that was horrible and I could not cope with it - and it didn't improve the situation and I went back onto the CPAP. Then we accidentally (pretty much) discovered that it had more to do with the position I was lying in and when I adjusted for that the situation improved very considerably. I had to fight to get the pressure reduced though and the 17 was granted reluctantly.

The memory foam masks seem to last about 6 weeks, possibly a bit more. They claim they need to be changed every month but I think you can get a bit more out of them, depending on how sweaty or oily your skin might be. They cannot be washed and they do tend to deteriorate.

Clare Kat · 05-08-2020 10:59pm

shoegirl wrote: »

Wondering if any of you guys can help with useful suggestions here. We are at our wits end.

My elderly mother is 75 and has been using the CPAP for about 15 years. She leased her first machine from a local supplier (who for will remain nameless) after she leased it for a few years they sold it to her for a small sum. She kept in touch with them for occasional masks and tubes etc. Anyway her machine broke down because of an electical fault in the house. When she went to get it repaired she had a bad experience with the supplier and somehow she told the guy in the office she had a medical card and he gave her a second hand replacement machine instead of a repair and somehow put her back on a rental plan.

So that was fine until they sent a letter a couple of months ago saying they needed a new prescription or Mother would start being charged rental for the machine. She couldn't really explain why but says its something to do with the HSE. Her annual visit to the consultant was posphoned due to the current crisis, and there was no changes directed from her doctors. So she was under the impression that all she had to do was get her consultant in the Hermitage to send them a prescription and everything would be fine. So, she has been playing telephone ping pong with the constultants secretary who only answer the phone 3 days a week. The secretary last said she thought the situation was "sorted out" but so far she has had 2 monthly bills for 50 euro plus VAT. Of course mother being mother she went down to the supplier (as it was in the middle of the crisis they were a bit surprised to have a caller) but they said don't mind it everything is fine.

It gets better from here on in, even though nobody has directed otherwise, the supplier called last week to say they were coming to deliver a temporary machine. The father got onto the phone, and unfortuantely he is even more vulnerable than her and couldn't actually explain what they said at all. So Thursday a lady arrived with yet another CPAP machine which from what I can see, nobody has ordered. Mum says the lady says it is just for 2 weeks and it has automated settings so they can work out the correct setting for the other one. This is all very upsetting and bewildering for my parents as they cannot afford to start paying 61 euro a month for a machine they and their doctors didn't ask for. Can anybody suggest why this is suddenly happening? Before I get onto the phone with all guns blazing?

There's a few things
- suddenly looking for a prescription
- the mother having being switched to renting a machine without fully explaining it
- sudden bills with no valid explanation
- none of this being directed by the consultant (and or whatever reason they don't seem to have responded to repeated calls from my mother asking for a prescription to be sent either)
- the company showing up out of the blue with new machines

I'd be interested to hear if anybody else has had recent similar dealings, and how you dealt with it? I'm concerned that the company is trying to take advantage of an elderly patient to extract additional rental income, and I'm not convinced there was a genuine need for her machine to be suddenly changed with no direction from her or her doctor.

OMG... situations like this really make my blood boil especially when medical companies prey on the elderly and vulnerable!!! Contact your local district nurse which should be easy enough if you call the local health center. He/she should be able to sort this out. If this doesn’t work ou please contact citizens information - they are wonderful advocates. Makes no sense asking for a new prescription seeing as your mother has been wearing a CPAP machine for 15 years!! If she needs a replacement machine due to an electrical fault ( as opposed to a change in medical status) then the original prescription should suffice! Having to bypass The Berlin Wall ( consultant’s secretary) shouldn’t even come into it. Neither your mother or your father should have to deal with this rubbish!! Sounds like such a bloody scam!!! Best of luck, let us know how your poor Mam gets on.

Clare Kat · 05-08-2020 11:02pm

Boulevardier wrote: »

Do people always bring their CPAP with them when they spend a night away? I find doing so an awful hassle. My rule of thumb now is that if I am away for just 1 night I do not bother. However, some of my non-CPAP sleeps have been poor and so I am wrecked the next day.

Have you looked into a portable machine? They are much smaller and easy to manage. Better than being wrecked the next day

shoegirl · 06-08-2020 12:49am

Clare Kat wrote: »

OMG... situations like this really make my blood boil especially when medical companies prey on the elderly and vulnerable!!! Contact your local district nurse which should be easy enough if you call the local health center. He/she should be able to sort this out. If this doesn’t work ou please contact citizens information - they are wonderful advocates. Makes no sense asking for a new prescription seeing as your mother has been wearing a CPAP machine for 15 years!! If she needs a replacement machine due to an electrical fault ( as opposed to a change in medical status) then the original prescription should suffice! Having to bypass The Berlin Wall ( consultant’s secretary) shouldn’t even come into it. Neither your mother or your father should have to deal with this rubbish!! Sounds like such a bloody scam!!! Best of luck, let us know how your poor Mam gets on.

Thanks - it seems that there was a contractual change between the CPAP suppliers and the HSE last December and if there was any paperwork issues HSE might stop paying. The CPAP supplier claim to have "lost" her prescription so that might explain it. I spoke to Dan of the Sleep Apnea Association and he has been helpful. It sounds like it is something to do with the contract change, and similar to the scenario with another poster saying they had issues with prescription after moving house. So it looks like I might need to intervene with the "Berlin Wall" or the consultants secretary. Unfortunately I am crazily busy at work otherwise I'd simply ring both companies first thing every day until they get it sorted out. I might try next week if work calms down a bit.

Field east · 06-08-2020 6:55pm

I was on a C-pal for over 12 years. I rented initially but I later bought one as it make much more sense financially . It had a moist air facility.. my Daughter, who is in the medical field suggested that if I lost some weight that I might not need a C-Pap. At around the same my job changed and it was significantly more physical. I noticed that I was starting to lose weight as a result. So I started to track my weight and over a period of 18 mts I went from 94kg to 82 kg. I stopped using the machine at around 85kg and I have effectively STOPPED apnoeing. So now I watch what I eat and try and get in about 2 two 3 hours of physical work a day. Brisk walking might do the same thing . I eat well 3 times a day and don’t snack

Boulevardier · 07-08-2020 11:12pm

I have noticed in recent nights that very little water has gone out of my water box during the night. Up to a few weeks ago, the water box was usually empty when I woke up. The indicators on the machine do not indicate that anything is amiss.

Does anyone know what might be the cause of this?

Daisy78 · 08-08-2020 12:52pm

So my machine arrived, second night of using it. I know it’s early days yet but how long did it take for people to adjust to it and start to feel better? My sleep apnea is mild going by my test results but my symptoms don’t feel mild. I don’t feel particularly rested or less foggy after two days of use but I presume it will take time to feel the benefit of the machine?

tnegun · 08-08-2020 6:06pm

Boulevardier wrote: »

I have noticed in recent nights that very little water has gone out of my water box during the night. Up to a few weeks ago, the water box was usually empty when I woke up. The indicators on the machine do not indicate that anything is amiss.

Does anyone know what might be the cause of this?

Is the humidifier working ok? Mine does this if I turn it down accidentally

Daisy78 wrote: »

So my machine arrived, second night of using it. I know it’s early days yet but how long did it take for people to adjust to it and start to feel better? My sleep apnea is mild going by my test results but my symptoms don’t feel mild. I don’t feel particularly rested or less foggy after two days of use but I presume it will take time to feel the benefit of the machine?

2/3 weeks but it will be worth it! What machine have you? I had a regular CPAP with a nasel mask and struggled for a few months with it, took things in my own hands and got a full face mask with APAP machine and haven't looked back in almost 8 years.

Drumpot · 09-08-2020 11:26am

Boulevardier wrote: »

I am a CPAP user with sleep apnoea and a BMI of about 35. However, I do not have heart disease or diabetes.

I was a bit worried when I heard a public health expert mention sleep Apnoea and obesity in an item about Coronavirus this evening.

Does anyone know if sleep Apnoea and obesity, in and of themselves, count as "underlying conditions" for Covid 19 purposes?

Has anybody heard anything more concrete on sleep apnea with regards to whether or not it’s a danger as an underlying condition when paired with COVID?

09-08-2020 12:14pm

This a a pre-print awaiting peer review

https://www.medrxiv.org/content/10.1101/2020.05.14.20098319v1

The research indicates sleep apnea is a risk factor

Daisy78 · 09-08-2020 5:12pm

tnegun wrote: »

Is the humidifier working ok? Mine does this if I turn it down accidentally

2/3 weeks but it will be worth it! What machine have you? I had a regular CPAP with a nasel mask and struggled for a few months with it, took things in my own hands and got a full face mask with APAP machine and haven't looked back in almost 8 years.

I’ve got an AirSense 10. Pulled off the mask last night, got to sleep with it on but woke up and felt air wasn’t getting in. Think the mask isn’t big enough for my nose! Anyway will keep going with, I’ve made a commitment to myself that from now on I’m not going to take it off at all, even if that means I only get a couple of hours sleep for the next couple of nights.

nibtrix · 11-08-2020 8:15am

Daisy78 wrote: »

So my machine arrived, second night of using it. I know it’s early days yet but how long did it take for people to adjust to it and start to feel better? My sleep apnea is mild going by my test results but my symptoms don’t feel mild. I don’t feel particularly rested or less foggy after two days of use but I presume it will take time to feel the benefit of the machine?

I agree with tnegun that 2-3 weeks of fairly solid usage should be enough to get used to it. The main issues I found in the early days were getting the straps right so that there wasn't any leakage, as I found the occasional leaks around my eyes quite distressing and impossible to ignore. Once I finally found the sweet spot it was much easier from then on.

I didn't notice for ages that it was having a positive effect, it's one of those cumulative things where you suddenly realise that you've actually been feeling better for a while already! For me, about 5-6 weeks in I didn't use it for a night, and I woke up feeling crap, sitting on the side of the bed trying to wake myself up, and suddenly thought "this is how I used to feel every day"! I hadn't noticed that feeling slowly going away, but I sure noticed it when it suddenly came back!

11-08-2020 9:32am

Does anyone suffer from neck and shoulder pain with sleep apnea, particularly bad in the morning?

Daisy78 · 12-08-2020 1:11pm

nibtrix wrote: »

I didn't notice for ages that it was having a positive effect, it's one of those cumulative things where you suddenly realise that you've actually been feeling better for a while already! For me, about 5-6 weeks in I didn't use it for a night, and I woke up feeling crap, sitting on the side of the bed trying to wake myself up, and suddenly thought "this is how I used to feel every day"! I hadn't noticed that feeling slowly going away, but I sure noticed it when it suddenly came back!

Thanks, gives me some hope! Felt dreadful this morning even after using it the whole night, perhaps I was expecting a major change more immediately. Guess il just have to stick it out for another couple of weeks before I start to see any difference.

tnegun · 12-08-2020 6:41pm

Have you access to the machines reports? You need to make sure you've no major leaks and if possible see what your AHI is.

Daisy78 · 12-08-2020 7:07pm

tnegun wrote: »

Have you access to the machines reports? You need to make sure you've no major leaks and if possible see what your AHI is.

No leaks and AHI (think that’s what it is called?) is really good, down at about 1.1. Would have thought I’d be feeling better given the score.

FaganJr · 12-08-2020 10:33pm

Daisy78 wrote:

No leaks and AHI (think thatâ€™s what it is called?) is really good, down at about 1.1. Would have thought Iâ€™d be feeling better given the score.

Takes time, will take more than a couple of weeks.
I've never had below a 3.0, and I'm buzzing after that.

tnegun · 12-08-2020 11:24pm

That looks really good I average 2 but suffer from leaks as I roll onto my face all the time pushing the mask off! Give it some more time I noticed initially then thought it wasn't working and went without it a couple of nights and that was awful! I find if I miss a night I wake up like Ive been out drinking and had one or two too many!

Field east · 18-08-2020 10:48am

Boulevardier wrote: »

I have noticed in recent nights that very little water has gone out of my water box during the night. Up to a few weeks ago, the water box was usually empty when I woke up. The indicators on the machine do not indicate that anything is amiss.

Does anyone know what might be the cause of this?

Maybe ‘element ‘gone in heater mechanism

Davexirl · 24-08-2020 6:16pm

I am going in to Vincents this evening for my sleep study.

corwill · 24-08-2020 6:20pm

Davexirl wrote: »

I am going in to Vincents this evening for my sleep study.

Good luck!

24-08-2020 8:17pm

Davexirl wrote: »

I am going in to Vincents this evening for my sleep study.

The best of luck.

FaganJr · 24-08-2020 9:33pm

Davexirl wrote:

I am going in to Vincents this evening for my sleep study.

Happy Zzzz's coming

Boulevardier · 24-08-2020 10:35pm

My CPAP rental company addressed my issue about the water filter.

Apparently my airpipe was not being "recognised" by the machine, and so they posted me a new air pipe.

There has now been an improvement. Thanks to all for your replies.

Real Psycrow · 25-08-2020 3:41pm

Hi folks,

Just wondering does anyone have any experience with backup batteries for your CPAP machines. We had no power here the night of the storm last week and I couldn't sleep without the machine. If the power had stayed down for any longer, as it did in a number of places, I'd have been goosed. I'm looking into batteries, but I want a portable one and want to make sure it's compatible with my machine.

Does anyone out there have one?

25-08-2020 3:50pm

Real Psycrow wrote: »

Hi folks,

Just wondering does anyone have any experience with backup batteries for your CPAP machines. We had no power here the night of the storm last week and I couldn't sleep without the machine. If the power had stayed down for any longer, as it did in a number of places, I'd have been goosed. I'm looking into batteries, but I want a portable one and want to make sure it's compatible with my machine.

Does anyone out there have one?

Hi

Sorry to hear about that. I've not heard about a battery sorry.

You probably know about requesting for vulnerable customers but just in case you don't. I know it won't prevent a fault but it might help with restoring timeframes.

All companies have it I believe but here's a link to EL
https://www.electricireland.ie/residential/helpful-links/customers-with-special-needs

Real Psycrow · 25-08-2020 7:22pm

Elliot Ambitious Muck wrote: »

Hi

Sorry to hear about that. I've not heard about a battery sorry.

You probably know about requesting for vulnerable customers but just in case you don't. I know it won't prevent a fault but it might help with restoring timeframes.

All companies have it I believe but here's a link to EL
https://www.electricireland.ie/residential/helpful-links/customers-with-special-needs

Thanks for that. I didn't realise this was a thing.

I'd feel a bit disingenuous registering to be honest, especially considering some of the examples listed. But I'll keep it in mind.

Sleep Apnoea and CPAP

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