In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Pod153
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Thu Jan 19, 2023 5:43 am

msreef wrote:
Wed Jan 18, 2023 9:51 pm
I'm the opposite, I need to stay on my left side otherwise I go downhill. I have UARS too.
I have built a device that has a gyroscope and is battery powered. This straps around your chest and will vibrate and wake you if you deviate from the preprogrammed angles.
If you're unable to work out how to sleep on your back consistently let me know, I may be able to help.

On an unrelated note, do you have LPR/Silent Acid Reflux? That can cause nasal issues and is commonly linked to UARS.

Your solution sounds amazing and I am definitely intrigued. I guess I’m hesitant to attempt any solution that wakes me up because my sleep is so horrendously fragmented already and that’s the main issue I’m trying to solve really - to wake myself up for other reasons would defeat the point. But I’m intrigued nonetheless!

I was wondering about LPR. I do have a history of acid reflux though in recent years I’ve not been aware of it - EXCEPT when I was trialling the full face mask, which seemed to trigger horrendous reflux, I assume because I was swallowing air. I could never tolerate PPIs but was on H2 blockers for a few years. Maybe I should look into that again.

I have noticed (and my ENT observed at my last appointment) that my left turbinate seems more reactive and irritable than my right one. I almost always wake up having settled on my left side. I have no idea if this is actually how it works, but it strikes me that if stomach acid is causing the irritation, there might be more spillover to that side simply due to gravity. Hmm.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

Pod153
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Mon Jan 23, 2023 12:34 pm

The VAuto has arrived. I think I've got it set to approximately mimic my Airsense 10 settings - it is definitely a bit more complicated than CPAP (and I don't have ResMed phoning me every two weeks to 'help' this time).

I had the Airsense in fixed pressure mode set to 7.4, EPR of 3, which was just about tolerable until my nose blocked up after a few hours.

Right now, I have the VAuto in S mode with IPAP at 7.4 and EPAP at 4.0, which, if I'm understanding correctly, is equivalent to an EPR of 3.4. I am hopeful that being able to breathe out with even a little less effort might allow me to sleep longer even when I'm partially congested, and will work on whether the inspiratory pressure is correct later.

I am curious about whether the VAuto would be more tolerable than the Airsense in auto mode using a higher pressure support setting, but given that every single tiny pressure change on the Airsense seemed to result in me waking up, I'm not sure I can bring myself to go down that road just yet.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Miss Emerita
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Miss Emerita » Mon Jan 23, 2023 2:48 pm

It's great the machine has arrived! Do take it out of S mode, though. For some reason, in S mode, flow limitation data aren't generated or displayed in Oscar.

In regular VAuto mode, simply set your minimum pressure at 4, your PS at 3.4, and your maximum pressure at 7.4.

Stay with those settings for at least a few nights. Then you can try inching up your PS and maximum pressure. It's very nice being able to do that in tiny increments of .2.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Pod153
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Mon Jan 23, 2023 4:55 pm

Miss Emerita wrote:
Mon Jan 23, 2023 2:48 pm
It's great the machine has arrived! Do take it out of S mode, though. For some reason, in S mode, flow limitation data aren't generated or displayed in Oscar.

In regular VAuto mode, simply set your minimum pressure at 4, your PS at 3.4, and your maximum pressure at 7.4.

Stay with those settings for at least a few nights. Then you can try inching up your PS and maximum pressure. It's very nice being able to do that in tiny increments of .2.
Oh, I didn’t think of doing that! It arrived in auto mode and I put it in S mode, thinking otherwise the IPAP might slide around and not stay consistently at 7.4.

But I guess if the difference between IPAP and EPAP is 3.4, then as long as IPAP maxes out at 7.4, EPAP can’t go above 4.0; and as long as EPAP is at minimum 4.0, IPAP can’t drop below 7.4. Is that right? I feel like I’m still trying to wrap my brain around the logic of how the different bits relate to each other.

I also had no idea the mode affected flow limitation recording. Thank you so much for the information!
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Miss Emerita
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Miss Emerita » Mon Jan 23, 2023 7:57 pm

Yes, you have the right picture. You tie its hands so it can do just the one thing you want it to.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Pod153
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Wed Mar 08, 2023 8:31 am

An update of sorts.

After more nights of zero sleep with the VAuto, I decided to take a break from treatment entirely. I'm back to 7 hours of very broken, mouth-breathing sleep, and have returned to my baseline level of mild to moderate autonomic dysfunction and feeling vaguely wired-but-tired. Which is not great, but at least I am able to work and study (and walk, and hold a conversation) again.

I am trialling a mandibular advancement device at the moment but it's proving rather difficult to fit properly (my teeth are very misaligned) and I have seen no improvement so far, but still persisting.

I think I had lost sight of the fact that with an AHI of 5.8, but between 10 and 60 arousals per hour depending on the night, the primary goal has to be for treatment to leave me with less disturbed sleep than at baseline. I'm struggling to achieve that at the moment but determined to find a way.

It seems like my arousal threshold is ridiculously, ridiculously low, and any restriction in my breathing -- whether it's the beginnings of an apnea/hypopnea event, or worsening flow limitation as airflow from the CPAP progressively irritates my nose throughout the night -- wakes me almost immediately. If my arousal threshold were higher, I would assume I'd have a worse AHI...but at least then I'd be able to treat it.

I assume the usual solution to this is sleeping tablets of some kind, but it's extraordinarily difficult to get prescribed anything of the sort in the UK.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Julie
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Julie » Wed Mar 08, 2023 11:41 am

Not necessarily suggesting you use any meds, but have you ever tried (at a low dose relative to what too many use) melatonin?

rick blaine
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Re: In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by rick blaine » Thu Mar 09, 2023 5:25 am

Hello again Pod153,

"It seems like my arousal threshold is ridiculously, ridiculously low."

I have thought that about your case all along. :) And I have had a suggestion waiting in the wings, so to speak, while you've explored the continuous positive airway pressure options.

There is a new treatment available for neurological and psychological unwanted responses. It's called Havening.

it was devised by two American neurologists, and In a nutshell, what it does is change the response of the amygdala to any unhelpful input. That can be a phobia or bad memories or what some people nowadays call 'being triggered' – any stimulus which causes the amygdala to go into over-drive.

It seems to me that your hyper-sensitivity and your remarkable – can we say ease? – of arousal is just such a thing.

Treatment is brief – probably no more than two or three sessions. And there's no drugs and no side effects.

Unfortunately, as as with many new forms of treatment in the UK, it is not available on the NHS. But there are – again, as far as I know – about 50 practitioners of Havening now in the UK.

If you send me a private message, I will reply with details of three of most experienced practitioners that I know of.

PS, If what I've said doesn't give you enough of a sense of how this form of treatment might be of help for you, there is a fair number of people on YouTube and in different parts of the world talking about it.