How to restart therapy a year after failing the first time around?

[Megs78]

I was diagnosed with severe OSA at the start of 2019. I’d been back at work after maternity leave for a year and while the baby was still up multiple times a night, I was exhausted beyond coping and found myself falling asleep at random intervals throughout the day. Not great for my career! Went through the process of being diagnosed and the sleep study came back with an AHI of 86.

Due to the severity of symptoms, I was put on therapy before the results came back but struggled mightily with the whole process. There were the usual complaints: I hated that I needed it, the mask made me incredibly claustrophobic, I am a restless sleeper and hate the feeling of being tethered to a pipe…I’m sure everyone’s heard it all before. I might have been able to push through it but my son was still waking up 6-7 times a night and the thought of having to mask up every time I got up to him brought me literally to tears. I gave up after a week or two and put it back in the box.

Fast forward to last month and I fell asleep at the wheel with my son and husband in the car. Thank God my husband was sitting next to me and yanked me awake almost instantly; thank God there was no car in the lane beside me when I swerved. My ongoing fatigue has already had ramifications at work and in my personal life; I cannot let it endanger the lives of those I love.

So I pulled it out of the box four days ago and set it up…but all the same problems are still there. Mostly, I hate the feeling of being tethered by the face to something that doesn’t allow me to roll around. My son’s sleep is a lot better but he can still be up a few times a night, as can the puppy. I guess I’m after any advice on how to restart CPAP with an already broken sleep cycle after already failing spectacularly once.

[Julie]

No reason you can't roll around with the right equipment - some people use https://www.amazon.com/Hose-Buddy-CPAP- ... B00866NTJY while others attach the hose to the headboard ala these older posts -

"Re: Lifting the hose up

I have my XPAP device on the night stand with just enough hose to get it looped over my headboard with a few inches of wiggle room so there's no tension on the hose where it hooks up to my machine. I Velcro it from that spot to my headboard. The rest of the fleecy covered hose is for me to roll and toss and turn with all night. I've been on PAP now for going on 15 years I think? Not 100% sure, maybe more. I hated the hose when it wasn't covered buy something soft, but with it covered, it's just another part of my bed linens and not something that concerns me. I get situated and flip the extra hose behind my head or to the side and that's it.

This is one of those questions that is going to be 100% "your mileage may very" it's very personal and what works for some won't work for others and vise versa..."


"Re: Lifting the hose up

After some further thought, I think I will string my hose back up on the hook thingy above my head. I don't think it makes a difference to me not having it lifted up, in terms of comfort or positioning, but I'm worried I might damage the hose by sitting on it/laying on it/getting it pinched in the mattress, etc., if it's not up out of the way."


There are lots more if you use "search" but just wanted to give you an idea of what's done (the second refers to a ceiling hook redirecting the hose back to the headboard, etc).

Can you tell us which model of what machine you have, what mask?

Btw - congrats that you're starting again, that you have a great husband, and he has a smart wife !

We can help with many aspects of things - just please stay in this thread so all can follow the story.

[zonker]

I was diagnosed with severe OSA at the start of 2019.

good job in getting started again!

as julie asks; what machine, what mask? as you may know from looking around, we don't all use the same.

also, what are your pressure settings?

good luck!

[Megs78]

No reason you can't roll around with the right equipment - some people use https://www.amazon.com/Hose-Buddy-CPAP- ... B00866NTJY while others attach the hose to the headboard ala these older posts -

We can help with many aspects of things - just please stay in this thread so all can follow the story.

Thanks so much for those references, I will dive deeper tonight to see what I can find. For tonight, I’ve stuck a command hook up about level with my machine and threaded the hose through there so at least it’s not dropping down and “dragging” overnight.

Re equipment- I’m using a Resmed Autosense 10 For Her with a Resmed F20. I also have an F30 from my first ill fated attempt at therapy and bought a Philips DreamWeaver full face mask to try this time around, but could not get it to seal properly. Rather than give up, I decided to go back to the F20; while it does make me claustrophobic, I have the best luck getting a good seal on it.

[Megs78]

I was diagnosed with severe OSA at the start of 2019.

good job in getting started again!

as julie asks; what machine, what mask? as you may know from looking around, we don't all use the same.

also, what are your pressure settings?

good luck!

Thanks @zonker.

My pressure is on Auto and I believe it hovers between 6 and 18 at night, averaging out at about 12. I will dig into OSCAR after I’ve got a decent set of data to look at. Last night I managed 5.44hrs on therapy but that’s the longest I’ve done this time around, so I don’t have a comparison point yet.

[zonker]

Thanks @zonker.

My pressure is on Auto and I believe it hovers between 6 and 18 at night, averaging out at about 12. I will dig into OSCAR after I’ve got a decent set of data to look at. Last night I managed 5.44hrs on therapy but that’s the longest I’ve done this time around, so I don’t have a comparison point yet.

okay. when you get a round tuit, post some charts and we'll see where you stand.

btw, thanks VERY much for putting your equipment in your sig. the forum software has a feature that takes your equipment profile and shows that with the sig. however, the forum software is currently borked and that function no longer, er, functions.

[Megs78]

btw, thanks VERY much for putting your equipment in your sig. the forum software has a feature that takes your equipment profile and shows that with the sig. however, the forum software is currently borked and that function no longer, er, functions.

I'm glad you said it's borked, I couldn't work out why it wasn't showing!

[Megs78]

Figured I'd touch base with a quick progress update: I've used my machine for 9 out of the last 10 days (the other day was the night before a colonoscopy and frankly there were too many toilet trips to bother). I average around 2.5 hours a night due to a waking toddler, but the other night I did almost 6 hours and felt like a whole new person.

[New2me123]

Totally understand about the colonoscopy night! Preparing g for that is an experience of its own lol

It sounds like things are getting better for you with xpap. What changed, if you don’t mind me asking?

[Megs78]

It sounds like things are getting better for you with xpap. What changed, if you don’t mind me asking?

Colonoscopy prep notwithstanding (!!), two big things changed: my husband has really encouraged my use of the machine, going so far as to sleep in the spare room on those nights when I was restless and finding it hard to settle with the mask on, and perseverance. White noise helps, as does counting to ten each time I want to rip the mask off. I found putting pawpaw ointment on my lips before putting the mask on has prevented them drying out and I've upped the humidity a bit so my nose doesn't feel so dry (the inside of my nostrils split so easily and it's so painful).

Mostly, it's the guilt I feel at just how badly it could have ended for the people I love when I fell asleep driving a month ago. That probably sounds melodramatic but my kiddo was an IVF bub and I keep telling myself I had to do much harder things during that process than learn to sleep with a CPAP machine, so I have to do this now to keep him safe.