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 » Wed Dec 14, 2022 12:47 pm

I am now slightly more awake, sorry for the earlier post. Unfortunately I am also having difficulty sleeping without the machine now too. I've taken a few days off here and there (and am barely using the machine for an hour a night anyway now) but it seems like my nose is just inflamed no matter what I do. Hopefully it goes down over the next few days.

I can't tell any of my doctors anything because I can't get in touch with any of them. Nobody seems particularly bothered. The healthcare system here is in complete crisis right now for various reasons so I guess that's why a person with an AHI barely squeaking over 5 suddenly being even more unable to sleep than before isn't a concern to them. None of them have to see how I live. I don't think anyone would mind or even notice particularly if I never used the CPAP again.

With that said, I did get a call from ResMed this morning who have offered to help me with fitting the full face mask I already have either in person or over video call, even though I didn't buy it from them. It seems like they are actually quite concerned about how little I'm sleeping, so at least that's something.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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

Post by lynninnj » Wed Dec 14, 2022 3:03 pm

Pod153 wrote:
Wed Dec 14, 2022 12:47 pm
I am now slightly more awake, sorry for the earlier post. Unfortunately I am also having difficulty sleeping without the machine now too. I've taken a few days off here and there (and am barely using the machine for an hour a night anyway now) but it seems like my nose is just inflamed no matter what I do. Hopefully it goes down over the next few days.

I can't tell any of my doctors anything because I can't get in touch with any of them. Nobody seems particularly bothered. The healthcare system here is in complete crisis right now for various reasons so I guess that's why a person with an AHI barely squeaking over 5 suddenly being even more unable to sleep than before isn't a concern to them. None of them have to see how I live. I don't think anyone would mind or even notice particularly if I never used the CPAP again.

With that said, I did get a call from ResMed this morning who have offered to help me with fitting the full face mask I already have either in person or over video call, even though I didn't buy it from them. It seems like they are actually quite concerned about how little I'm sleeping, so at least that's something.
Video conference; wow that is great for you! I am glad to hear that. Maybe they can tell you if anything about the mask can be irritating your nose (can't hurt to ask, never know what kind of useful info you will get.)

Good luck.

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

Post by Pod153 » Wed Dec 28, 2022 6:41 am

Tried a nasal mask. Experimented with chin straps, eventually figured out a soft neck brace would keep my mouth closed. Woke up choking with blue lips and nails because my nose was so blocked and the pressure on the machine had just pushed the mask off my face. So I don’t think I can use a nasal mask any more, and I guess probably not an MAD either.

Went to ResMed in person to fit a full face mask and they concluded my face just isn’t quite the right shape for any of their masks or the Phillips one I already have so I have to wear them super tight. I wake up after ten minutes every night so hot I can’t stand it, with the FFM leaking around the sides.

I can’t get the inflammation in my nose down now even if I don’t use the CPAP so I’m also in pain all the time.

I’ve had only one night of more than two hours of sleep in more than a month. I can’t sleep with or without the machine any more. The lack of sleep has destroyed my body. The POTS that started me on this journey is the worst it’s ever been and I’m essentially housebound now. I can’t work. I can’t see my friends. I can’t take care of my family. I can’t drive safely. I just alternately sit in a chair and lie in a bed 24 hours a day microsleeping and immediately waking up gasping for breath.

I have a possible appointment for turbinate reduction in January but my heart rate and blood pressure are now so unstable after a month of extreme sleep deprivation on top of my pre-existing POTS that my consultant is not sure it will be safe to do the procedure.

I wish I had never tried CPAP. I don’t want to live like this any more. An animal with the quality of life I have now would be put down.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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 » Wed Dec 28, 2022 10:58 am

Hello again, Pod153,

I'm sorry to hear of your further troubles with finding masks, but I salute your drive in going to ResMed UK direct for an in-person fitting.

You can give yourself a pat on the back. :)

Have you, or any of your doctors, considered a tracheostomy?

AFAIK, this procedure is briefer and requires less time under anasthetic than turbinate reduction. And also – as I understand it – a 'trach' bypasses the 'falling back' of the tongue, and so obviates the need for APAP.

If said procedure improved sleep, then it could be left installed for long enough for your overall condition to improve – to the point where a turbinate reduction would be less risky. It might even be worth leaving in after turbinate reduction.

The NHS website gives details of post-op management of tracheostomy and the kind of support that might still be on offer even with the current shortage of nurses in the NHS, especially the specialist ones.

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

Post by Pod153 » Wed Dec 28, 2022 11:38 am

I would do literally anything at this point to get my life back but — I think in part because I am young and look relatively well (for now) — I cannot get the NHS to intervene at all (I am paying for all of this out of pocket now because the NHS ‘no longer does turbinates’), and frankly I would probably be referred to mental health services if I asked about this.

Note also that my AHI is only 5.8 (not 5.4 as I’ve repeatedly said on this thread, I remembered wrong) so everyone wants to keep things as conservative as possible (and in some cases seemingly would rather not treat me at all). Quality of life not a consideration.

If I am turned away on the 19th when my turbinate coblation surgery is booked for, I will likely approach a doctor who does awake laser reduction in-office, not disclose the POTS, and hope I don’t pass out during the procedure. My current surgeon is probably the best in the country and the laser guy seems to have a higher rate of complications, so I hope I don’t have to do that, but I cannot go on like this.

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

Post by ozij » Wed Dec 28, 2022 9:35 pm

I'm saddened to hear you're having such a tough time.
Has anyone considered an oxygen bleed? Blue lips and blue fingers certainly indicate too little oxygen circulating in your body.
Can you get a doctor to order an oximeter for a night?
Lack of oxygen would show up on that, and set some bells ringing, regardless of your AHI. Insist on oximetry because of whatever it is you're going through now, regardless of the previous Mild OSA/UARS diagnosis.

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

Post by Pod153 » Tue Jan 17, 2023 11:10 am

Long overdue update, I suppose, though also not really much of an update at all.

I have managed to get a slight improvement in my sleep time by setting the CPAP to fixed pressure (I settled on a pressure of 7.4 with EPR at 3, which feels like it's not quite enough but it's the maximum I can tolerate before I can't breathe out against the pressure), and am now sleeping about 3-4 hours a night before my nose gets too blocked to continue (which seems to be the case with or without the CPAP). I'm still struggling a lot, but the difference compared to the one hour a night I was getting before is huge and I'm not as close to being housebound as I was.

I had a date this week for a turbinate reduction surgery to try to resolve the blocked nose, but pre-surgical assessment screwed things up, because while my nose is apparently visibly irritated and I seem to have a very exaggerated nasal cycle, my turbinates don't seem to be persistently enlarged, which made him reluctant to proceed. This also likely means that I can't go ahead with my plan B to seek laser reduction elsewhere, since my nose seems to be extremely reactive but it would be easy to take away too much tissue.

I'm now on a different steroid nasal spray, have an appointment with an allergy specialist, am seeking a second opinion from a different ear/nose/throat specialist, and have thrown money at a refurb AirCurve VAuto from Second Wind to see if that's any easier to tolerate, which should arrive tomorrow (I will resell either the CPAP or the BiPAP depending on the results). I don't really have any idea how to set up a BiPAP but I am hoping it might help with the problem of the inspiratory pressure feeling too low, but the expiratory pressure feeling too high. I am very aware it still has a minimum pressure of 4, so might not solve the can't-breathe-out-enough-air-through-blocked-nose problem, but I am at the try-everything level of desperation at this point.

Sigh.
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 » Tue Jan 17, 2023 11:40 am

Thanks for the update. Although I know the outcome on turbinate surgery is disappointing, I suppose it's actually good that you avoided pointless surgery. I hope very much that the new spray, plus new input from an allergist and a second ENT, will help you get more sleep.

I'll be curious how you like the VAuto. You can start out by setting it to mimic your current settings, then increase the pressure support by small increments to see how it goes. Keep us posted, would you?
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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

Post by ozij » Tue Jan 17, 2023 12:16 pm

Thanks for the update. I'm glad you're sleeping better and wish you much luck with the VCURVE Auto.

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And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.

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

Post by Pod153 » Wed Jan 18, 2023 6:02 am

Pondering.

My congestion is hugely (hugely) influenced by position, confirmed at my last ENT appointment. I am naturally a side sleeper, but this completely blocks one of my nostrils and partly blocks the other. If I sleep on my back, my nose (mostly) clears.

Back sleeping also worsens my apnea since my tongue falls back, but I feel like if I could work out how to stay on my back (and not roll on to my side in my sleep) I might be able to use the CPAP for longer to compensate for that.

So I guess I want to try out the opposite of normal positional therapy. If anyone has any bright ideas for how to keep myself on my back (and preferably without causing even more awakenings) I’d be keen to hear them. The usual backpack devices don’t seem like they’d work for this.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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 » Wed Jan 18, 2023 8:28 am

Hi Pod153,

I make no case for what is practical and easily do-able in what I'm about to suggest, but there are two anatomical 'levers' which are used to get on to one's side from the back position.

The first movement begins in the pelvis and hips. So if someone were to wear 'trouser shape' pyjamas, and if those trousers had cloth ties sewn on to their side seams, and if those those ties were secured tightly to metal handles or fixings at the side of the bed ... then the person would be prevented from rolling to one side.

The other anatomy 'mechanics' solution for such a roll-over begin with the raising of the torso via the arm and elbow – which gets a person half way. The rest of the roll is via the pelvis, as above. So a pyjama jacket which was affixed to the bed by large Velco patches under the shoulders might discourage the raising of same.

A further thought which has just occured to me is: anything like the 'raised-leg' arrangements used in the orthopedic wards.

I offer these ideas to get brain-storming started, not as a complete and already-practised solution.

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

Post by ozij » Wed Jan 18, 2023 8:52 am

Can you fall asleep when on your back?
Two thoughts - in the spirit of brainstorming:
Body pillow on either side of you
Or
A heavy pillow or bolster under your knees when you're on your back.

For many of us, side sleeping blocks one nostril, and we turn on the other side, the blockage moves down to that nostril.
I understand that the major problem in your case is the partly blocked upper nostril.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: Machine: AirSense??? 10 AutoSet??? For Her CPAP Machine with HumidAir??? Heated HumidifierSoftware: Oscar; alternating masks
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.

Antoine de Saint-Exupery

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

Post by Pod153 » Wed Jan 18, 2023 4:50 pm

rick blaine wrote:
Wed Jan 18, 2023 8:28 am

The other anatomy 'mechanics' solution for such a roll-over begin with the raising of the torso via the arm and elbow – which gets a person half way. The rest of the roll is via the pelvis, as above. So a pyjama jacket which was affixed to the bed by large Velco patches under the shoulders might discourage the raising of same.
This feels like it might work - I think I generally start rolling over from the upper half, as you say, so this might be a good way to limit that.
ozij wrote: Can you fall asleep when on your back?
Two thoughts - in the spirit of brainstorming:
Body pillow on either side of you
Or
A heavy pillow or bolster under your knees when you're on your back.
I can fall asleep in any position, but staying asleep is another matter :)

I tried body pillows (and a really nice sort of long u-shaped pillow) a while back when I was attempting to see if *stopping* myself rolling on to my back would help with the apnea, but I’m such a restless sleeper I would just wake up with them on the floor. Need to experiment I think.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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 » Wed Jan 18, 2023 6:00 pm

Just to clarify what I'm suggesting. The Velcro patches would, for a good amount of restraint, need to be quite large – at least six inches wide and 8 inches long, in old money. And the best fit, it seems to me, would be on the jasket so that when the jacket is on, the Velcro patches fit over the shoulder blades.

Also, the 'ground' part of the Velcro, it wouldn't do to stitch that on to the sheet – the sheet could pull away from the mattress quite easily. Instead, the ground part could go on a tight canvas band with straps – and which band would encircle the mattress and be pulled tight to it.

BTW, I seem to recall something similar to what I suggest being used by the people in the orbiting space station so they would stay in one place while sleeping. You might could do an internet search on that. 8)

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

Post by msreef » 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.