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.
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.
I did some mucking around with positioning the pipe under the pillow, wedged behind the mattress etc.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.
