Sleep Apnea – CPAP

I guess in a forum extensively populated with middle aged (and older) folk, there are likely to be a few with experience of a CPAP…
Been having increasingly serious issues with sleeping over the last 5 or 6 years, off the back of 30+ years of insomnia and other less noticeable sleep issues. Usually manage on ~5 hours or less a night (have done for most of my adult life.) Am now getting about 3 at most for 4 or 5 nights a week.
So, i went to the doctors and was diagnosed, after a sleep study thing, with full blown apnea and put onto a waiting list for a CPAP (massive shortages due to loads of people with COVID related issues, so going to be a 2-3 month wait, at least).
Just wondering how much difference it’s likely to make? I struggled like hell to get to sleep with the monitoring equipment on, so no idea what it’ll be like with a pipe stuck to my face.
Extra info, for anyone who cares… Blood Oxygen minimum was down to mid 70%, average in the high 80s, ~60 incidents per hour. So apparently quite bad. Also woke up during the study with heart rate in the 130’s as well, that was, errrr, interesting! The consultant reckoned i was getting significantly less than an hour of proper sleep a night. Which explains how tired i always am…

Any success stories? Things to watch out for? Hints and tips?

2-3 months….lucky… daughters partner has been waiting for about 8months now for his . Scottish health service is very poor.

Yeah, i’ve heard. We’re still fairly well funded over here (Sweden), i only saw my GP in August, had already done sleep study and a meeting with the consultant by october. Just got my letter through from the hospital with timings for the CPAP yesterday.

If you can afford it, then the ones the NHS dish out are around £600.
Bear in mind you should be notifying DVLA if you drive and they will more than likely suspend your licence until you are receiving treatment .
Now whether the NHS will sign you off as receiving treatment if you are not using one of their machines ( even though they are the exact same ones) is another matter. They should set it up for you to get correct pressures etc

Already asked the GP and consultant about the driving thing, and it’s not an issue as I’m not randomly drifting off to sleep when driving, or ever TBH.

No point in buying my own either, as I’ll still have to wait to see the hospital to get it set up. 😕

My nephew had similarly bad sleep apnea. the cpap was a game changer for him

It’s a few weeks to get used to it. Don’t watch alien the first night. Game changer for me. Was 72 events per hour.

Can’t sleep without it now.

No point in buying my own either, as I’ll still have to wait to see the hospital to get it set up. 😕

Maybe, maybe not. My new unit (air sense 10) is self calibrating and sorts pressures itself

I don’t use it, but Have seen an extremely variable response to it. It’s quite noisy and your sleep partner (if you have one!) might hate the noise, plus the mask is tight-fitting so some people find it claustrophobic/uncomfortable.

If you can get over those factors and use it regularly, it can be life-changing without doubt.

Can’t sleep without it now.

You weren’t anyway.

My father has had one for about 7 years. Brought him from 4-5 hours to about 7. Certainly enough to enhance his well-being.

EDIT-missed two whole posts…

 It’s quite noisy and your sleep partner (if you have one!) might hate the noise

We have a few guys at my worksite that use them. I can say from experience as a room-mate that the gentle hum of a CPAP is infinitely easier to sleep with than the sounds of sleep apnea/snoring/choking/death-rattle that would otherwise fill the night air.

I have been on cpap for a couple of years now. It has much improved my physical tiredness, but I find using it irritates me in other ways, and I wake up quite a bit during the night due to it so don’t feel I get a proper mental recharge during sleep, so while an improvement still a mixed bag.

It is likely I suffered for many many years without realising, and you have to understand the health problems it can cause, In my case I was diagnosed with sleep apnea while being treated with heart rhythm problems which it likely caused. Also it is a catch 22 situation with weight gain, where it contributes significantly to gaining weight, and being overweight contributes significantly to sleep apnea.

I struggled with it quite a lot at first, felt like the machine was fighting my natural breathing patterns. I went online and learnt how to configure the machine myself lowered the breathing rate down to make it more comfortable while I got used to it, then raised it back up to the recommended rate over a few months. As the machine monitors incidents per hour, it also means I can adjust the pressure to make it lower or higher according to what is actually happens. These are setting in the clinical menu rather than the normal user interface

I also spent a lot of money experimenting with masks to find one I felt most comfortable with.

My local sleep team, wasn’t helpful helping me understand and adapt to the treatment, or in offering a range of masks to try and be comfortable with, and going online provided a greater wealth of information and support. It seams that it can be a bit hit and miss what support you will actually get from your local team, and I suspect this contributes to the rather large number of people who do not persevere with the treatment. I am lucky in that I was able to understand the problems I was having with the machine, and implement the technical solutions to get it right, and also that I could afford to buy a variety of masks until I found one I was happy with.

the sounds of sleep apnea/snoring/choking/death-rattle that would otherwise fill the night air.

Yeah, i recognize that, in fact that was one of the things that triggered it. Had it pointed out to me by a girlfriend. “Do you know you keep stopping breathing, and that snore doesn’t sound healthy”

She’s still coming back, regularly, so not that disastrous really.

Also it is a catch 22 situation with weight gain, where it contributes significantly to gaining weight, and being overweight contributes significantly to sleep apnea.

Yeah, i’ve heard that too, my main problem is all the muscular aches and pains and general exhaustion means that even very light training is painful and exhausting. So i’ve been putting on weight. I’m hoping that actually not being tired all the time might make life easier wrt getting out on the bike and moving around. Got loads of opportunity to ride (and generally get out and about) and never do as i’m knackered before i even start.

Had sleep apnea for years as a teenager , brought on by terrible scarring of my throat by constant irritation caused by the snoring. Never had CPAP, but a surgeon carried out a procedure where they removed my damaged epiglottis ( the dangly thing in my throat) and lasered off a large portion of my soft palate. The inside of my mouth, 20 odd years later looks bizarre, but the operation did work for a long time. Instant improvement in breathing, sleep quality, mental alertness, etc. Until the pain meds ran out.
But oh my god the pain. About 50 stitches the surgeon told me, but the time for the laser burns to heal was much longer than I expected. A few months minimum. Ironically, couldnt sleep for a few weeks following the op, but once the pain eased a bit the results were immediate.
The only disadvantages I had is that I sometimes choke on certain foods, like apple with the peel on, as the chunks get caught in between my throat and nose ( hard to explain). Also, have noticed the last couple of years that the gap behind my nose is closing (again hard to explain) and the breathing isnt as easy as it once was.
On balance, I dont know if I could recommend the op, but it did bring a huge difference to my sleep quality instantly. Over time this has faded and the post op pain was insane.

I don’t use a CPAP but wrote Clinical Evaluation Reports for a bunch so they could be CE-marked.

Clear health benefits. More advanced ones can adjust the pressure as you breathe.
Make sure the mask is comfortable.

sounds familiar.

what machines are recommended then? and can you use them without a medical diagnosis?

I’ve been round and round with gp. keeping being told anxiety is cause of sleep problems. in my view sleep problems are causing anxiety

is something like this worth trying
https://www.intushealthcare.com/product/in-home-sleep-test/

£200 is quite a chunk towards a machine itself though!

What are your symptoms? Are you a heavy snorer? Has your partner noticed you stopping breathing when you sleep?

200 is a lot when your doctor should just get you into a proper sleep lab, maybe your symptoms don’t just match sleep apnea, it isn’t the only cause of sleep problems. However if you genuinely believe that you have apnea and that your doctor just isn’t taking any notice then the impact improving sleep quality has on life I would spend it for the improvement. I must have spent close to a grand just trying out different masks, and am planning spending a similar amount on a travel cpap machine before my next holiday.

Now understanding the impact it was having on my life, I wish I had understood I needed treatment many years ago, and if I couldn’t get treatment through the NHS (or German medical insurance in my case) I would find a way of financing it even if it cost 10’s of thousands (which it doesn’t thankfully)

I don’t think I’m a particularly heavy snorer, but I do choke in my sleep and often have really trouble getting a proper breathe, shallow chest breathing to the point of pulling chest muscles. I’ve been down the medication/cbt/back specialist route for the last few years. I’m knackered all the time, headaches and often have to nap in the day or I get massive migraines.

exercise makes it far worse and muscled can spasm up during sleep and inwake up super stiff. during the day I’m mostly ok. other than being knackered.

Yeah, i wake up stiff every morning, and have had a tension headache (Shoulders, neck, head) pretty much continuously since october/november last year.
The first time i get up every morning sees me crabbing across the bedroom as my legs feel like i’ve been doing weights all night. It’s not pleasant. Have also had the waking up choking fairly regularly.

I also used to have the waking up choking, or more frequently “sleep paralysis” realising I was choking while asleep knowing I need to wake up and move, but unable to do so, which was absolutely **** terrifying.

If you are getting those symptoms I really see no excuse for your doctor not taking it further, can you see another doctor?

My dads machine had had a positive impact. In theory he could have gone back to driving but as he is mid 80s and still nods off do my mother has persuaded him to driving for good

If you are getting those symptoms I really see no excuse for your doctor not taking it further, can you see another doctor?

Nah, this is *literally* as quick as it can be done. I’m already approved to get the machine, but they’ve got no machines, they massively underestimated the impact of long COVID. All that happens if i see another doctor is i get put back in the same queue, with a 3 month wait, and i’ll have to wait ~6 weeks to see another doctor anyway (the guy i spoke to is one of the main ENT consultants in the region anyway). I’m already fairly high prio for the apnea patients, there’s only things like COPD and so on ahead of me. i.e. those who will die if they don’t get one. I’ve had this problem for years so i’m unlikely to die in the next few months.

Saying that, if my symptoms get much worse, i might get bumped up the list. But there will still be a wait. And i don’t much fancy them getting worse…

On balance, I dont know if I could recommend the op, but it did bring a huge difference to my sleep quality instantly. Over time this has faded and the post op pain was insane.

They don’t even offer a surgical option in Sweden, as the effects are only temporary and lots of side effects. Stopped doing them in the 90s as far as i can tell. So it’s either a CPAP or some sort of physical therapy, but we didn’t even discuss the therapy option!

The comment about seeing another doctor was aimed at DT78, who doesn’t seem to be getting anywhere with the one he is seeing.

Ooops, sorry!
Yes, definitely worth speaking to another doctor, much like mboy on the cancer thread.
Sleep deprivation causes all sorts of psychological issues, not least of which is depression (which is closely linked to anxiety).
Can end up in a spiral.

OK.
Got a CPAP machine several years ago.
It changed my life from the very first day.
I always get a complete nights sleep. I feel 100 times better, the world feels a brighter place and I can operate in it.
The machine is virtually silent (no idea why anyone would consider them to be noisy) if set up properly.
I have gone from being a loud snorer… to silent, my wife would never allow me to not use it even if I was stupid enough not to.
The air sense auto corrects itself so no setup issues.

That’s good to hear!

When I picked up my machine They asked me to just try it out for size and comfort.
I was asked to lie down for a few mins to see how it felt.
I woke up 3 hours later (they decided it was best to just leave me as I obviously needed the sleep).
The world quite literally seemed a brighter and better place from the moment I woke up.

For me it really has changed my whole existance.

My says that when it is on and setup correctly she can’t tell that it is on …it is only when it is not setup properly that she can hear it.

So if I just buy one of these machines to try it out, is it automatic and works as it should?

Honestly £600 is a lot of money but if it means I can sleep I’m willing to spend. I really can’t be having with trying to go round the gp loop again, it made me question whether I was going insane last time when all I need is some bloody sleep

What are the names of the machines the nhs issue? I’ve seen several recommended ones online. I’m sure if it doesn’t work I can pass it on via eBay for a relatively small loss

Mines a resmed Airsense 10. NHS issue. The previous one was not autosetting, the new one is.

Both airsense 10’s. If you can spring for £600 I’d do it.

^^^^ This.
Mine is also Resmed Airsense 10 NHS issue.
I would also buy if you can manage it.

https://www.sleep-tight.co.uk/airsense-10-auto-set-by-resmed

But you will need a mask as well.
Did you go through a proper NHS Sleep Clinic?

Will they support you with masks if you buy your own?

No not been via a sleep clinic, I’ve been so down the stress and anxiety path, followed by back / physio.

Can you self refer to these sleep clinics? I have the cough of doom at the moment so won’t be going anwhere for a few weeks

Can you self refer to these sleep clinics?

I’d assume it’ll have to be via GP. Do you fall asleep when e.g. sat on the sofa, or when travelling as a passenger in a car?

There’s always the option to pay for it…

I went via GP and that would be my first call.

There’s loads of useful info on sleep apnoea on the hope2sleep or SASA websites (link below) including guidance on notifying DVLA (be careful how you notify them as they can revoke your licence, which they shouldn’t) or PM me if you want a chat about how I got treatment as it can take a while but a CPAP is a game changer.
https://www.hope2sleep.co.uk/ or https://scottishsleepapnoea.co.uk/what-is-sleep-apnoea/

Well, that was unexpected.

Had a call from the local hospital sleep clinic/CPAP team already.

Unfortunately, it was a Swedish only session, and my Swedish really isn’t good enough, especially as it starts off with group session.
But, they’ve added me to the urgent care list and i should hear something before Christmas for a 1:1.

Just following as I am sure my wife suffers from Sleep Apnea, mixed with the fact that she sometimes has to take drugs to prevent sleepwalking.

I would say her snoring is more Darth Vader than snoring, no consistent rhythm and she does eventually wake herself up not choking but certainly to stabilise her breathing (Ive probably been awake longer!)

Weirdly after really bad colds I used to wake up quite often literally choking, it would scare me like nothing else and even the wife who is a doc. It could happen 1-3 times in a row in the night to the point I would be too afraid to go back to sleep and would just get up.

Since moving to the countryside and away from a polluted city, luckily this has stopped.

But, they’ve added me to the urgent care list and i should hear something before Christmas for a 1:1.

So, the original 3 month wait (so an appointment some time in late Feb/early March) and the “urgent care” flag on my file have fought, and the urgent care won.
I’ll be in the week before Christmas, and probably get a ResMed Airsense 10 or 11 (as that’s the standard one here) and mask to suit.

Might get some sleep for Christmas.

Dad’s been on a CPAP for a few years now and it changed his life. He was referred by his GP after having issues with fatigue and generally being tired all the time – he uses an airfit F30 from the NHS