Sleep Apnea – CPAP

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.