Sleep Apnea - CPAP

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 ****ing 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

Well, original pre Christmas appointment was cancelled at the last minute as pretty much the entire team in the sleep clinic ended up with either stomach flu, COVID or the ordinary flu. Christmas parties are a high risk activity these days.

So I picked it up this week. ResMed Airsense 11, done three or four nights with it so far. Still struggle to actually get to sleep, so it hasn't cured the insomnia...
But only woken up once per night at 3-4 am. Instead of 4-5 times. Also managed to sleep until the alarm clock twice. Haven't done that since I was in my 20s. Usual just spend the two hours before it goes off being annoyed and incapable of doing more than dozing lightly.

Still feel tired, but it's more of a "I need a nap on the sofa" tired as opposed to "dying would be a good idea right now because I'm so tired my skeleton hurts."

So far so good.

I just got some airmax nasal dilators which apparently have stopped my death choke gurgling according to my wife. Had them about a week.

I have a pretty bad deviated septum(already operated on once) so they can get a bit uncomfortable getting them in,but definitely helping so far.

I did the full sleep clinic thing maybe 15 years ago. At that time any OSA wasn't bad enough to warrant a CPAP, but I was diagnosed with periodic sleep movement disorder which I'm just living with as the very potent benzos the prescribed me ended up causing more harm than benefit.

Still struggle to actually get to sleep, so it hasn’t cured the insomnia…

After a few nights, are you just not getting used to wearing it? Must feel fairly odd for a while.

Nah, i've not been able to get to sleep properly for near enough 3 decades. Usually takes between 90 minutes to 3 hours after lights out.

And i've tried everything, old wives tales, herbal stuff, white noise, meditation, drugs of increasing strength, antidpressants, sleeping pills and dodgy Diazepam from a mate (He was using a half pill to sleep for 12 hours on long flights, a whole pill barely even had an effect)

Found out i can actually sleep comfortably on my side with it on last night as well.

Bookmarked to read.

The nasal dilators above ended up just being too uncomfortable long term as they made my nose really sore.

So, just gone to the GP about a range of things including my CFS/ME and he's referred me for obstructive sleep apnea testing (my wife and I are fairly sure it is a big issue), but said the current waiting list for testing is a year 😔

I see loads of private home testing for £195 and then obviously the carry on to private machines. Ideally I'd like to do the private test take it back to my GP and short cut the year wait for the NHS diagnosis and get the machine through the NHS.

Is this something that would happen or would I still have to go through the massive NHS wait to get a diagnosis and machine anyway??

We'd have to dip into our limited savings to do it all private at around £2k as far as I can see, but I'm thinking it might be a price worth paying.

As in my previous post, I did do the full sleep clinic testing about 20 years ago and was diagnosed with Periodic Limb Movement Disorder then, and there was some SA, but not high enough incidents to be classed as OSA.

Thanks for any advice.

As a result of overtreatment of my Hyperthyroidism I developed Central Sleep Apnea in late February,

As I was trying to go to sleep I could feel myself stopping breathing, it was terrifying and I ended up in A&E a few times. I got put on the sleep clinic list and got a sleep test within a month. Thankfully it was on the second visit to A&E they noticed my thyroid had gone way under active so by the time I actually had the testing machine it was under control.

I have to say March/April of this year were probably the lowest of my life (worse even than the death of my wife in 2019) I don't think anyone who has not experienced sleep deprivation where you are in fear for your life going to sleep would understand, so I feel for those still suffering.

I have since then had good regular nights sleep, I have used a few methods that help the initial going to sleep phase, but I now look forward to bed time.

Sorry to hear about your wife 😔

Yeh I have actually had time where I've been worried about going to sleep as I kept dropping off and then waking up feeling I'm not breathing and choking, It's awful, but thankfully it not that bad that often.

Atleast dropping off to sleep isn't a big issue for me, but staying asleep and towing and turning all night is. I always feel like I've got a hangover on morning.

Had my thyroid checked as nana, Mam and brother have low thyroid. Apparently mines ok, but has been borderline in the past.

I downloaded the snorelab app yesterday out of interest. Last night I felt like I hardly slept and went aware of snoring, but according to the app I snored for 5 hours, 2 hours at loud levels and 1:40hr at epic levels. It quite amusing and interesting hearing the epic snoring, especially when I didn't even feel I snored last night 😂😂😂

Following.

Apparently I make weird chokey type sounds now and again. Snoring getting worse.

Always absolutely exhausted and falling asleep on the sofa by half eight.

My sister has a cpap machine so it could be a family thing.

Just got an appointment for the sleep clinic mid March, so we'll see how that goes...

Apparently I make weird chokey type sounds now and again. Snoring getting worse.

Always absolutely exhausted and falling asleep on the sofa by half eight.

Go see your GP.

The  chokey noises and snoring were what made my girlfriend at the time send me off to the GP.

And that led to all this.

Oh. In further news, I had my first completely headache free day in January.

After 3+ years.

I'm now about to start training again as I'm not in almost continuous pain.

Getting to sleep is easier (but still takes time) and I'm up every morning at 4 ish. But I usually get back to sleep after 20 minutes or so.

Posted in another thread but then saw this one which is maybe a better place....

That’s me adding OSA to my long list of MOT failures. Will get a letter for.an appointment to be set up with a CPAP in the near future.

In the meantime it says I need to notify DVLA and insurance and not drive until I’m recieving treatment and my events are below 0-5 events per hour.

I don’t drive long distances due to my concentration and tiredness, but not being able to drive the 15-20mins to the nearest town is going to be a real PITA.

Nearest bus is 2miles away and even ebike use is dependant on my knee (needing a replacement) not being too bad at that time.

Bollocks!

Edit: I have no actual details at this stage of how bad the OSA is. Wondering if I should hold off contacting anyone until I have a figure or idea of severity?

A friend (in his late twenties) has recently been diagnosed with sleep apnoea and started using a CPAP machine. We've joked for years about how bad he is in the morning (not ideal as his job requires early starts), how much sleep he needs generally, and how much he's aged in the last few years. He eventually went to the doctors and was quickly diagnosed and issued with a CPAP machine (within weeks), he says it changed his life from the first night and now he's got the mask properly adjusted and he's used to it he barely ever wakes up in the night, and even on a short night's sleep he feels so much better in the morning. In his own words, he's like a new man.

He did say the NHS issue mask is a bit cumbersome, but for ~£200 you can get a more refined/streamlined version.

Yeh, I'm hoping it makes a big difference. I've had sleep issues pretty much as long as I can remember and feel horrendous all morning and it's possibly a cause or extra strain on my ME/CFS.

The driving is going to be a real pain for shopping and getting some to the bus for school with where we live.

@longdog

How did everything go in the end? Now CPAPed up?

We never heard back from the Sleep Clinic after diagnosis and ended up buying one too, Resmed Airsense 10. It's made a big difference.

Well I've been on it 319 days now it's told me. My events average is 0.6 and I've even had a zero, but then last night was 2. Still well below the 5 events needed.

I can't really say I feel massively better for it as my sleep is so disturbed with other stuff, but it must be helping not to be suffocating for hours a night and my wife will be less disturbed too.

The machine itself I'm fine with and I have the soft full face mask Resmed F40 which is comfy enough. I did buy (myself) the additional humidity tank and climate control hose as NHS don't seem to offer them and it was too dry without them.

I'm still driving, but having a run around with DVLA, though to be fair I think it's more the fault of my GP and the Sleep Clinic in them not responding to requests for reports. Currently they've had my licence hostage since December, but tell me I'm still ok to drive until I'm told otherwise.

I'd reported my OSA to them after we knew the  CPAP was controlling it, but while they were assessing that we moved house, so I sent license off for updating my address and they've not returned it awaiting the decision on my driving. Seems they're struggling to get the reports of the clinic which is now effectively mothballed in that they aren't accepting new clients, but should be managing existing ones and responding to DVLA. Also had to change GP which has added to the mix.

Anyway it's going well, but not a miracle cure for my maladies. Thanks for asking.

I can't really say I feel massively better for it as my sleep is so disturbed with other stuff, but it must be helping not to be suffocating for hours a night and my wife will be less disturbed too.

My experience is my sleep is still disturbed by the mask and gubbins, and that means I don't feel any where near as mentally refreshed as I should, however my physical recovery during sleep has improved massively since I have been using it.

I learnt to change the settings myself, they set me on 15 breaths per minute, which is far too fast, I put it down to 12 initially and just lately I have slowly reduced it to 8, which helps me sleep better. 15 breaths a minute is hyperventilating, 8 is a nice calm breathing rate. I also spent quite a bit buying alternate masks to get ones that fitted my big conk, the actual machine they gave me is one of the best (lowenstein prisma 25 st), but the advice I received was very very poor IMO. 

They didn't give me a  humidifier with mine, I bought my own, which helps keep the nose unblocked, and I have now switched to a nasal mask and started taping my mouth, which also seems to be helping. I have less events per hour with the nasal mask and my mouth taped, than if I just use a full face mask. Although I do need both as if I am feeling a bit bunged up it has to be the full face mask.

If you do go down the route of taking control of your own settings, make only small incremental changes and give it at least a few weeks to bed in before doing so again.

Just saw this thread just as i triggered my private health doc. I seem to have a permanently blocked nose since Covid and my sleep detector tells me that i sometimes get severe sleep apnea which might explain why i wake up feeling more tired than when i went to sleep.

MSP, yeh I know how to change the settings myself and have done so after looking at the data on OSCAR to get the pressures right for me. Took a while to get it right.

With the Resmed 10 you can't regulate the actual number of breaths, just the pressures to keep the airways open. You can have it on a set continuous fixed pressure, or auto pressure where is adjusts as necessary between upper and lower pressures that you set.

ah ok, that's the advantage of the prisma 25st it is actually a bipap machine, so I can adjust the pressures for exhaling and inhaling, the breaths per minute and the % time of inhalation vs exhalation. For those that can afford it (or persuade their health providers to finance it) I think it is a far superior system and aids sleep comfort quite a lot.

I bought a little breas travel cpap for myself as the prisma is quite a hefty unit, and there is a clear difference in sleep quality between the two.

Just saw this thread just as i triggered my private health doc. I seem to have a permanently blocked nose since Covid and my sleep detector tells me that i sometimes get severe sleep apnea which might explain why i wake up feeling more tired than when i went to sleep.

There is a real catch 22 situation there, sleep apnea (and snoring) inflames the nasal tissue and blocks the nose, and that in turn makes sleep apnea worse.

I would suggest reading breath by James Nestor. and try doing some breathing exercises, I do a box breathing exercise before I go to bed. Started at the 4 second one, then 5 seconds, and now do it 1 nostril at a time (hold left nostril closed breathe in for 5 seconds, hold breath for 5 seconds, hold right nostril closed breath out of left nostril for 5 seconds, hold breath for 5 seconds, breathe in through left nostril and repeat).

IMO James Nestor and Patrick McKeown oversell the benefits, but that doesn't mean that the science is without merit, and it has made quite a difference to me. I constantly had a stuffy nose before and struggled to breathe through my nose, and now well in to pollen season I would expect to be even more bunged up at this time of year, but for the first time I am able to easily breathe through my nose, I was very much a lifelong mouth breather before because my nose was always stuffy. That's in less than 3 months.

But they claim that once you start breathing through your nose that "weight will drop off" or that it will cure ADHD, and that detracts from the more realistic affects.

Guided Box Breathing - 10 Minute Meditation (4-4-4-4) - YouTube

Guided Box Breathing - 10 Minute Meditation (5-5-5-5) - YouTube

Ignore the "meditation" part in the title, its the breathing exercise that's relevant. Once you understand what it involves you can just use a metronome app on your phone at 60bpm set to 4/4 or 5/4 time.

Posted by: MSP

↑

My experience is my sleep is still disturbed by the mask and gubbins, and that means I don't feel any where near as mentally refreshed as I should, however my physical recovery during sleep has improved massively since I have been using it.

Once i found a good route, it seemed to disturb me less.

This popped up on my youtube feed yesterday, about the cpap machine I have. I find the bloke quite annoying, but he does get some decent information in his vids.