Everything going wrong

[ravensmitten]

View attachment 60373 that’s the info the app gives you, not a great night last night but I’m only 3 days in. You just need to download the app and register an account and give the serial numbers off the back

Nice one, how you feeling with it wozey?

the app for my machine seems to be different here I just needed to link it on Bluetooth

I only seemed to had the mask on for 3 hours last night but only had 3 events it seems which is 387 events less than I would if I was not using the machine.

No wonder I feel so much better today even with it on for that short amount of time.

 

[wozey]

Nice one, how you feeling with it wozey?

the app for my machine seems to be different here I just needed to link it on Bluetooth

I only seemed to had the mask on for 3 hours last night but only had 3 events it seems which is 387 events less than I would if I was not using the machine.

No wonder I feel so much better today even with it on for that short amount of time.

I was having 93 events per hour and jumped the queue for my machine as the current waiting list has about 370 people on it. That night was Thursday, Friday is a different story i removed it in the middle of the night, I woke up thinking I couldn’t breathe so only ended up doing 3.5 hours. I’m also not at full power yet but they are gradually going to increase it over time, the school of thought is anything is better than nothing and they would rather me get comfortable with it first but I’m seriously struggling. I don’t actually like going to bed anymore though anxiety but I’ll persevere

 

[ravensmitten]

I was having 93 events per hour and jumped the queue for my machine as the current waiting list has about 370 people on it. That night was Thursday, Friday is a different story i removed it in the middle of the night, I woke up thinking I couldn’t breathe so only ended up doing 3.5 hours. I’m also not at full power yet but they are gradually going to increase it over time, the school of thought is anything is better than nothing and they would rather me get comfortable with it first but I’m seriously struggling. I don’t actually like going to bed anymore though anxiety but I’ll persevere

That's a lot too, I reckon that phone call I made had them bump me up the list a bit, was looking at October otherwise.

Ah mate, I probably did the same, as my close mate said just gotta get past the whole unnatural feeling of the mask and machine, and this fella is far more intolerant of things like that than I am so I'm holding out hope for us.

Yeah, I bet though that 3.5 hours you had gave you more restorative sleep than you were getting previously though so like you say anything better than nothing, I've only had it on for 5 or so hours (had a nap earlier, and still pulled it off) and I feel really different, like a veil has been lifted, lighter, more alert, so that's encouraging me to try to not get too hung up on the numbers for a bit (difficult when they are on the screen/app I know) and go on how I feel, and not to expect to much to begin with, let the pressure off myself like. They did say they weren't expecting it to be an overnight sensation or even that I might feel the benefit for some months too, cause everyone is different.

I never liked going to bed in all of my life, so I know what that feels like, I don't like to give advice usually but if I did I can't even offer any advice about that one mate, that might all change with getting better quality sleep over time. rooting for you to keep on with it though as similar situations, what with all the other stuff happening.

Probably becomes second nature after a while and can't wait to jump into bed (hopefully.)

feeling any benefit yourself yet?

 

[AndBreathe]

I was having 93 events per hour and jumped the queue for my machine as the current waiting list has about 370 people on it. That night was Thursday, Friday is a different story i removed it in the middle of the night, I woke up thinking I couldn’t breathe so only ended up doing 3.5 hours. I’m also not at full power yet but they are gradually going to increase it over time, the school of thought is anything is better than nothing and they would rather me get comfortable with it first but I’m seriously struggling. I don’t actually like going to bed anymore though anxiety but I’ll persevere

I think the thing about anything new is we feel it - a lot. A bit like wearing a wedding ring for the first several days, or when we come back from the tropics where the most we've had on our feet are flipflips of adventure sandals. It just takes a bit of adjustment for our brains to ignore sensations and make it our new normal.

Stick with it.

 

[Grandadfatboy]

My whole world crashed in on me 5 years. I had been diagnosed with diabetes and hypertension back in 2006, and they were very well controlled. My eyes were constantly monitored yearly, as I was a HGV driver and required the very best vision that was available to me with or without spectacles.

On Friday 13th April 2018 my humerus broke without warning. It turned out I had a tumour called a plasmacytoma that was responsible for the break. Further tests and scans revealed I had a cancer called multiple myeloma. I underwent surgery, radiotherapy, chemotherapy and stem cell transplant. Whilst I was in Kings having my SCT they discovered I no longer needed blood pressure medication, but I had sleep apnoea. Something else to worry about.

Many of the cancer drugs played absolute havoc with my diabetes, my weight and my eyesight, and damaging/breaking other bones in my body and give me peripheral neuropathy. My GP is currently trying to confirm if I have lymphedema or not. Even now whilst I'm in remission, I'm always waiting for the next thing to go wrong.

In 5 short years I've gone from a reasonably fit individual driving 44 ton artics with the all the loading and unloading associated with that, to someone who had his HGV entitlement revoked and now drives a mobility scooter.

The point I'm trying to make is, life will throw us curved balls sometimes, we simply have to adapt to out new way of living, control what we can control, especially health wise, and continue to enjoy whatever our current health issues allow us to do.

Me, I'm off to York with my lovely wife in the morning for a weeks holiday, with a mobility scooter battery that's fully charged. Watch out York, I'm on my way.

 

[Liam E]

I was having a stoppage every 90 seconds (at worst). Two a minute would be horrific.

It does get easier - I would say months, though, until you're a bit more confortable wearing the thing. Stick at it. I think I went through about a dozen different nose pieces before I found one that fitted, was comfortable, worked, didn't cause a sore, etc. With my service there was not a lot of choice, so I bought various things online (cost is not very much) and gave them a go.

One of the real problems was getting replacement elastic straps. They stretch, and then the airseal isn't tight enough to keep the pressure up. My service claimed each elastic strap cost £119 so I couldn't have a replacement. In the end, after trying to shorten them by various means, I bought a pack of six straps from the manufacturer for £18.

It did what it was supposed to do but I honestly think being able to sleep without using it is more of a success for me than getting my BG back to normal.

Make no mistake, once every 90 seconds is pretty much as bad. Once every 90 seconds is 40 times an hour. Being woken up 4 times a night would be make people tired the next day. 40 times a night and most people would be a zombie the next day. 40 times an hour? Well there is a reason sleep deprivation is used as torture.

Whether you are getting a blockage every 30 seconds or 90 seconds you are not getting any deep sleep at all and that is terrible for you in more ways than you can count.

Once you get down to a blockage every 90 seconds or lower you are essentially only sleeping for as long as you can hold your breath, getting a breath or two and then repeating the cycle.

 

[Liam E]

90 seconds is still a LOT isn't it, enough to have very negative effects. I've had very bad sleep since childhood, night terrors/paralysis/waking gasping for air etc, focus/attention problems etc, now I'm wondering if its all related.

That's handy to know cheers, I think so too like anything going to take a while, I'm willing to give it a go though.

I didn't get a choice of a nasal mask (which I would have preferred) but they said they could fit one in time if really couldn't tolerate it as an alternative, I'm quite happy that I've been given/loaned this thing in the first place, its an expensive piece of kit.

Getting used to the straps and how tight need to have it, as it feels a lot depends on the seal, it's amazing the markup on stuff, esp medical stuff.

It's really quite amazing you've been able to come off it, hoping that's a long term thing for you. I'm just starting this journey but "funnily" enough my best friend in all the world going back to childhood got one last year or so, so he's been regaling stories of the benefits and how he too wanted to tear it to shreds at first but he's glad he stuck with it for the improvement on his quality of life. and he was "only" having 30 interruptions per hour, which is bad enough.

I'm not holding out to much hope for it being the weight thing for me (although it might help) cause I think I've had this from when I was a beanpole (with a wide neck) I have a deviated septum but the physiologist said it would be from the neck/throat area, and FAR worse on my back, so I need to stop myself from ending up there, though I don't chose to sleep on my back as I don't like it, they suggested a tennis ball in a shirt which I guess is nice and simple but could see myself throwing it in my sleep Maybe I'll give it a go though and see.

I'm really glad I phoned yesterday now, maybe the cancellation was a coincidence but it does feel like she saw the numbers and said eek, I was shocked myself, but it all suddenly made sense.

A simple tip that works for me is hold a pillow between your legs.

That encourages you to sleep on either side but not in the middle so to speak.

 

[Oldvatr]

A simple tip that works for me is hold a pillow between your legs.

That encourages you to sleep on either side but not in the middle so to speak.

I do that with a hot water bottle, but make sure it is not too hot! I have always slept on my side.