Sleep Apnea Issues

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snnet

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#3064532 17-Apr-2023 17:07

I've got OSA, and when I had my sleep study I had 102 events on average per hour. I was constantly exhausted in this condition which I estimate had been at its worst for about 5 years. My Co2 level was so high that when the sleep physiologist was going thru my results of the study with me they turned to me and rhetorically asked how I was able to stand 🤣

A machine has improved things, but I have to say it wasn't an immediate improvement for me. It took quite a while of using it to really see a difference, maybe because my condition was pretty far at the bad end of the scale. My issue is apparently narrow airways, however, while experiencing OSA for 5 years it kind of started a vicious cycle where my metabolism was also messed up, I gained plenty of weight and couldn't lose it because of this for the time I was undiagnosed. This of course made things a lot worse and may explain why it took a while for me to see any improvement.

I have the ResMed AirSense 10 and have tried a wide range of masks as I do struggle with air leak etc. For me it is still kind of hit and miss but at least I don't fall asleep when I shouldn't - once in a jury dock, I'm sure I snored, and a woman next to me elbowed me to wake me up 😅

Other times include falling asleep outside shops when I've driven there, I can hear everything around me including the people laughing at me for being asleep, I had all intention of going into the store but couldn't. I only came to when they were well and truly closed. There are a few other stories, and needless to say I am pretty horrified I drove while I was like this, but at the time I had no idea exactly what was wrong with me (I live alone). I was able to get up at 4.30am and drive to work very easily every single morning, but a few hours later I was pretty much dead.

With the help of CPAP I have managed to lose weight and things are better, I have way more energy - and I definitely notice if I don't use the machine how exhausted I feel. Now my events sit between 1-4/hr.

Glad you're getting it looked at, keep on top of it if your referal doesn't make it to the specialist like mine didn't three times! It was a long road for me but it is worth it.

bendud

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#3064557 17-Apr-2023 18:55

My understanding is that while DHBs (as were) could choose their machines, most went for mixtures of F&P Sleepstyles and ResMed AirSense 10s. There are a few technical reasons to have one available over the other - e.g SleepStyle machines can't be connected to supplementary oxygen (I gather a newly updated machine will address this issue). The cloud sync is slightly different and the downloadable reports differ a little too.

Philips have rather dropped the ball sadly with their CPAP machines - issues of filter degradation and particulates meant their machines were all withdrawn, but it has taken them up to 2 years to replace the affected units which is not great service (I appreciate the volumes and cost of replacing so many CPAP units and indeed ventilators will be vast).

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linw

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#3064754 18-Apr-2023 08:55

lxsw20:

Out of interest, what CPAP machine has the public system provided for your wife?

She has had two F&P ones. The curent one is a "SleepStyle".

Paul1977

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#3148694 18-Oct-2023 10:08

@lxsw20 I missed this thread at the time, just wondering how you're going?

After telling my doctor several times that I thought I might have sleep apnea and being told "No you don't, you have the wrong build for it", I finally got him to get me tested. Showed 58 apneas per hour which put me in the "sever" category. That put me in the funded category so off to the hostpital sleep clinic.

I didn't find them very good at all. First question "do you breath through your mouth at night?". I did, so that meant "well, you definitely need a full face mask". I struggled with that big uncomfortable thing for a couple of years, and my apneas never got consistently below 15 per hour. Hospital said that was a good result, but nothing I read concurred with that assessment so I pushed back and was essentially told I was wrong and it was definitely a good result. I also struggled with swallowing a lot of air and waking up feeling bloated and uncomfortable. And the constant pressure required to prevent OSAs for some reason trigger a lot of CSAs (central sleep apneas, which made up the majority of the 15 per hour I was still having).

I wasn't happy with that outcome so went private. First thing they said was a full face mask was always their last resort. They said even mouth breathers should try a nasal mask first. They also suggested an APAP machine, rather than the standard set pressure CPAP machines that the hospital provide. APAP allows you to set a pressure range, so it starts low and only increases as needed (generally once you are already asleep).

So I trialed some Resmed AirFit P10 nasal pillows and a Resmed AirSense 10 Autoset. After a couple of nights I purchased both.

The nasal pillows are so much more comfortable, but it did take some "training" to not open my mouth and just have all the air rush straight out. I used a chin strap for a little while, but it wasn't long before I naturally adapted and didn't require it. Now, when I have my mask on, I naturally stop the air coming out my mouth without thinking about it (even if my mouth is open). I'm not sure was the physical mechanism is, it just happens now.

Apneas are now consistently less than 5 events per hour (which is considered "normal"), and usually sit between 1 and 3. With the APAP not having to be on a fixed high pressure the entire night reduced the CSAs, and I don't suffer from air swallowing any more. As an added bonus, the nasal mask means I don't wake up with a dry mouth like I had pretty much my entire life from breathing through my mouth when I sleep.

You will generally have more OSAs with an APAP than you would with a CPAP because you need to have an OSA event before it increases the pressure to compensate; but, for me any way, the added comfort more than makes up for that.

Another thing I highly recommend is something to hold the hose up. I've done my own contraption that works well, but you can buy them as well. Google "CPAP hose buddy" to get the idea.

lxsw20

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#3148722 18-Oct-2023 10:53

Good timing on asking!

I got the same setup as you from Eden Sleep Resmed AirFit P10 nasal pillows and a Resmed AirSense 10 Autoset on a trial basis and it put me down to 1-2 eph from an original 81.

I went to see a private ENT last week to ask about options. While APAP works, I don't love it. He said I have big tonsils and a slightly bent inner nose, but he seemed to think even if I got those sorted I'd still be sitting around the 30-40 eph mark and that CPAP is the gold standard for me.

With that in mind I purchased a AirSense 11 and P10 nasal pillows yesterday. I am also waiting to be seen by the public system but the wait is 12 months + in Otago by the sounds.

Yeap I've got a host holder on order from Temu, as it's a bit of a pain when I roll over currently.

Paul1977

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#3148732 18-Oct-2023 11:32

lxsw20:

Good timing on asking!

I got the same setup as you from Eden Sleep Resmed AirFit P10 nasal pillows and a Resmed AirSense 10 Autoset on a trial basis and it put me down to 1-2 eph from an original 81.

I went to see a private ENT last week to ask about options. While APAP works, I don't love it. He said I have big tonsils and a slightly bent inner nose, but he seemed to think even if I got those sorted I'd still be sitting around the 30-40 eph mark and that CPAP is the gold standard for me.

With that in mind I purchased a AirSense 11 and P10 nasal pillows yesterday. I am also waiting to be seen by the public system but the wait is 12 months + in Otago by the sounds.

Yeap I've got a host holder on order from Temu, as it's a bit of a pain when I roll over currently.

@lxsw20

I guess the advantage of the Autoset is you can presumably still use it as fixed pressure if that works better for you (setting the min and max the same value I assume would make it fixed pressure).

Did you get the AirSense 11 from Edensleep? My AirSense 10 is well past its motors expected lifespan (it warns me every morning), but the 11 hasn't been available in Australasia every time I've looked (but this may have changed). And can I asked what the price tag was? Did you get the 11 Autoset, or fixed pressure for that price?

I had wanted to try the newer P30i pillows, which in theory would prevent the hose wrapping around your neck if you roll over too much in one direction. I'm entitled to a new mask every year because I went through public initially, but the suppliers wont let me have the P30i unless I get it prescribed - which would mean an unnecessary visit to specialist. So until I have another reason to see the specialist I'll just stick with the P10, which is working fine.

EDIT: I don't know that anyone "loves" CPAP/APAP, but no surgical options have a high enough success rate for me to seriously consider them. I think it took me a lot longer than many to get used to it, but I can't sleep without it now. But I'm not one of those people who went on it and immediately exclaimed how life changing it was.

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networkn

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#3148735 18-Oct-2023 11:40

Thanks for sharing so we can all benefit from the collective knowledge. Appreciated.

lxsw20

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#3148736 18-Oct-2023 11:45

TBH I started out with the Autoset so sticking to what I know, I might have got away with the fixed pressure, not really sure.

I hear you get the motor warnings after 5ish years or so, but most people say it can be ignored.

AirSense 11 from EdenSleep, it went on the market about a month back. https://shop.edensleep.co.nz/collections/all/products/resmed-airsense-11-autoset?variant=45768902803746

Pricing is on their website, and I'm doing the month to month payment, but its around the $2.5k mark including the mask.

P30i looks a bit more bulky than the P30 but you're right it would fix the rolling over issue.

Paul1977

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#3148772 18-Oct-2023 12:32

lxsw20:

TBH I started out with the Autoset so sticking to what I know, I might have got away with the fixed pressure, not really sure.

I hear you get the motor warnings after 5ish years or so, but most people say it can be ignored.

AirSense 11 from EdenSleep, it went on the market about a month back. https://shop.edensleep.co.nz/collections/all/products/resmed-airsense-11-autoset?variant=45768902803746

Pricing is on their website, and I'm doing the month to month payment, but its around the $2.5k mark including the mask.

P30i looks a bit more bulky than the P30 but you're right it would fix the rolling over issue.

For the relatively small price difference between CPAP and APAP it seems like a no brainer.

Mine's about 7.5 years and the hours on mine are higher than any I've seen reported in forums. But I've been holding out until the 11 was available. So while at the moment it's still working fine, the consensus seems to be that I should be seriously considering replacing it as it will probably die sooner rather than later. Or it could be a scam by "Big CPAP" to keep people buying new machines. But I really don't want to be in a situation where it dies and there's a lead time on a replacement. So I'm thinking get it now, and can have the old one as a working spare.

I just emailed USL Medical to see if I'm entitled to a funded replacement. But even if I am entitled to a replacement machine they will probably only fund set pressure machines (this used to be the case anyway), and probably not the AirSense 11 yet (I know that when a new mask is released it's a long time before they start funding them, so I assume it will be the same with the machines). But doesn't hurt to ask.

You probably won't get a lot of benefit from seeing the hospital sleep unit as it sounds like your specialist has got you on the right track, but it should allow you to get a replacement mask funded every year if nothing else.

Paul1977

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#3148865 18-Oct-2023 14:47

Turns out USL Medical (who supply the CPAP stuff for publicly funded patients) will supply me a replacement AirSense 10 AutoSet, but not the 11 since it's not funded yet. So I've decided to wait until my old one dies in the hope that by then they might have started funding the 11. It just means I risk it dying without having a replacement on hand.

But even if they don't start funding the 11 before my one dies, a free AirSense 10 makes more financial sense than a $2,200 AirSense 11.

Was very quick and easy, I sent an email and got a phone call back within a couple of hours saying they were happy to send a new machine out right away if needed. It's a shame the rest of the health system isn't as efficient!

lxsw20

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#3148906 18-Oct-2023 16:24

From most of the reading I've done online there is little point to upgrade from an 10 to an 11 - I'm only doing it as a first time buyer.

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Paul1977

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#3148912 18-Oct-2023 16:51

lxsw20:

From most of the reading I've done online there is little point to upgrade from an 10 to an 11 - I'm only doing it as a first time buyer.

Definitely. Wouldn't have even been looking if mine didn't keep warning me it was near end of life.

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