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Quitting CPAP


LunaFreya

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So I’m doing it. I’m handing in the machine today. That’s $120 a month I’m not going to miss.


My GP isn’t going to be happy but I have found that it was giving me panic attacks in the middle of the night. I know there’s health affects etc but I’d rather not have the waking up terrified


Is it true there is a thing with driving and insurance and untreated sleep apnea? I was going to try and go for my license but I wonder if I’ll be able to now.

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I guess it depends on what your health effects are. The people I know it’s the risk of death, so...


And you have to declare you have sleep apnea on your licence and it can mean you need to have a medical regularly to renew your licence.

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I do feel as if my sleep had improved. I’m not as tired as I used to be. I try to exercise more, keep regular hours for sleeping and I try not to eat before bed.

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Hills Mum Bec

When my DH was diagnosed with severe sleep apnoa the doctor was legally required to notify motor registry and his licence was suspended until he started treatment and was cleared by his doctor as fit to drive.

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If you have sleep apnoea, which you obviously do if you had a CPAP machine, then you're making a very unwise decision to discontinue treatment. I have sleep apnoea, my DH has sleep apnoea and my father has sleep apnoea. We all use CPAP machines. Your risk of death, heart attack or brain injury will increase with untreated sleep apnoea. How severe is it, and how long do you stop breathing for? How low does your oxygen saturation drop to? Did you do an overnight sleep study to calibrate the machine to the exact pressure and ramping time and pressure that you need? Is the humidity level comfortable?


What are you having a panic attack about? Have you tried different types of masks to see if that eliminates the panic attacks? I personally couldn't manage a nose only mask, partly because my mouth opens when I sleep and because it just freaked me out. I tried a nose and mouth mask and it's much better.

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Are you having a panic attack or are you waking up breathless because the machine's settings need to be adjusted?

A middle of the night asthma attack sometimes feels like waking up out of a nightmare/panic attack for the first few seconds till I'm awake enough to register what's happening.


Maybe getting a new sleep study first might be a better solution?

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I wake up with a panic attack, I’m terrified, cold and clammy and confused, it’s happened quite a bit even two in one night,

I did an overnight sleep study and they said it was quite severe, but I found it very, very hard to sleep with all the gear on and I wonder how accurate the reading was relative to my sleep.


The machine was supposed to help my anxiety but it just made it worse. I dread the idea of going back to it and waking up with a panic attack

L


I also tried, many, many different masks. Nose pillow didn’t work at all as I could t breathe. Whole face was terrible and nasal mask not much better


Honestly, if my gp gives my grief about stopping the treatment I might break down and cry

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Is notifying the motor registry a state thing? I’ve never heard of it in Vic.

 

I have heard in NSW some medical things are needed to be reported to RMS (I still call it RTA), I am not sure on the ins and out though

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I agree that sleeping with all of the sleep study gear attached is difficult. It's certainly not a natural feeling to be hooked up to so much and know that you're being watched via a camera all night.


After the initial sleep study to diagnose you did you go back for another overnight sleep for them to determine what settings were needed for your machine? eg pressure, humidity, ramping. Getting the right settings is important for a comfortable sleep.


These days I very rarely fall asleep without my mask on. I hate feeling my throat collapse as I go to sleep. Putting my mask on has become a sleep cue for me.

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No, mine was all done during Covid last year so they couldn’t do an overnight stay. I had to go home in an Uber with all the gear on and sleep in my own bed and there was no follow up for the settings. The guy did some stuff with the machines in his office while I was trying on masks.


The mask made me feel trapped. I tried to get used to it, having it on while I was awake and watching tv. But I would always wake up during the night to take it off.

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Lady Sybil Vimes

I think the advice to pursue follow-up sleep advice is good. You can’t be the first person this has happened to. I get that waking up panicked is awful but if your sleep apnea is severe then the alternative could be not waking up at all.

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In the interests of your health I think it would be worth requesting an overnight calibration study to get the machine set exactly for your needs. Even if you're only having it on for part of the night it's still giving your benefits. I think it's 4 or 5 hours per night to get benefits from CPAP, so if you manage that then take it off it's still better for you than no CPAP at all.


Are you on a HCC? Is there any way to get a CPAP machine for free on a HCC? I think it was mentioned to me at my appointments that it might be possible. I didn't have a HCC at that time so I had to pay for mine outright. It was about $1400 for the machine, mask and hose. It's cheaper than hiring by the month if you have the lump sum of money available. Also, it's often cheaper to go through a different place than the sleep study place for your machine. The one I went to was going to charge about $2000 for the outright cost. I found an online shop with a physical shop that was so much cheaper and the person was great to deal with.

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Hills Mum Bec

I think you are best to go back to the place where your machine is from to see if there is anything that can be done with the settings on your machine, if they can't help try somewhere else. When my DH was first diagnosed the sleep centre he was going through were hopeless. He did a 6 week trial with the machine and he just could not get used to it, was waking up every night feeling like he couldn't breathe until he had taken the mask off and no solutions were offered by the sleep centre except "you will just have to get used to it". We had a friend with sleep apnoea and he told us to try the sleep centre that he was going through and the difference was amazing. The staff there were really helpful in getting the mask and machine setting combinations correct (this was also during COVID) and DH has not had any issues since and is finally getting a good night's sleep and not feeling like he is falling asleep during the day.

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You might be having night terrors. I get them and they run in my family. They generally happen if I'm stressed, or if I eat dairy before bed.


I get claustrophobic myself, what has helped me is a soft nasal mask that consists of one soft flexible piece of plastic, plus soft adjustable straps, it's very light and comfortable. https://cpap.com.au/products/fisher-paykel-eson-2-nasal-mask?variant=42109206403


With the machine itself, I'm onto my third and what works for me is an automatic machine that adjusts pressure as I sleep. I also need one with a very quiet motor. This one has been great. https://cpap.com.au/collections/cpap-machines/products/resmedairsense10autosetforherwireless4g


Good luck and I hope these suggestions are useful. If possible, take your machine chip to your GP, so that they can see how you're tracking, if the air pressure is correct, are you getting many leaks etc.

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Lady Sybil Vimes

Yeah, that will really help me sleep. Thanks

 

What advice would you prefer?


“Yes, great idea to make a choice that significantly increases your risk of heart attack, stroke and sudden death rather than pursue further medical advice. Go for it!”


I sympathise with your experience but think the advice you’ve been given in this thread is sensible. I’m not going to pretend otherwise.

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Well I tried something that was supposed to help my anxiety but it just made it worse. What am I supposed to think?


Machine is gone. And I really can’t afford to rent it again at $100 a month. I’m seeing my gp later


Not being able to drive is going to be a bit of an annoyance. It means I’m dependant on other people to get to my medieval club events

Edited by LunaFreya
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Silverstreak: I've got the fixed pressure version of that machine. It's so quiet. Love the options for the different colours of the For Her version!


I have this mask:

https://www.cpapdepot.com.au/collections/full-face-masks/products/copy-of-airfit-f20-ff


What I particularly love about this mask is that I can unclip the hose from it while keeping the mask on. Have a look at the photos in the link. It means if I need to talk to DH or DD after I've got the mask on and comfortable I can just unclip, talk to them, then clip the hose back in without needing to go through the process of taking it off and then back on and comfortable. And yes, I have the For Her version because I loved the purple instead of the blue in the standard version. Turns out that the fabric dries much faster than DH's standard blue one, and the velcro is better. It's definitely smaller. DH tried it on once and he had to let it out to pretty much the largest settings to fit his head. On his standard one there's plenty of spare strap length left over.

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Silverstreak: What humidity level do you have your machine set to? I tease DH that he likes his set to humid rainforest because his is 5, and he teases me that I like a desert because mine is 2. Forest or desert for you?

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I wake up with a panic attack, I’m terrified, cold and clammy and confused, it’s happened quite a bit even two in one night,

I did an overnight sleep study and they said it was quite severe, but I found it very, very hard to sleep with all the gear on and I wonder how accurate the reading was relative to my sleep.


The machine was supposed to help my anxiety but it just made it worse. I dread the idea of going back to it and waking up with a panic attack

L


I also tried, many, many different masks. Nose pillow didn’t work at all as I could t breathe. Whole face was terrible and nasal mask not much better


Honestly, if my gp gives my grief about stopping the treatment I might break down and cry

 

The way my family member was explained it was apnoeas can trigger the flight fight response so waking up abruptly, sweating, feeling panicky could be symptoms of unmanaged sleep apnoea.

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