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Everything going wrong

Because of the high cholesterol I’m second guessing the whole thing, it’s not a case of “rather being unhealthy and at risk of blindness “ I’d also rather not have a heart attack, yes I understand that a lot of this stuff is now being questioned and may not be true but I’m no doctor or scientist
No but you are a human being that is probably a bit peed off at the moment and I get it, I really do I cannot get out of the 7s at the moment and have been like this for a while. Stick with it honey, it will get better I hate my fella at the moment he has just walked in with hot cross buns xxxxx
 
Since my diagnosis I’ve been sent for test after test, first problem high cholesterol, second i now need glasses and today Im told I have sleep apnea! I’m almost scared to go to anymore appointments just in case they find something else. I’m not particularly overweight, don’t get me wrong I could do with dropping a little bit but I think that’s true for everyone. I just don’t get how I’ve gotten into this state. I feel like giving up, I’ve changed everything I’m eating a low carb diet that if I’m honest I’m not really enjoying anymore. Maybe just a bad day, did anyone else feel like it was all doom and gloom after diagnosis at all these appointments
I have/I had sleep apnoea. Diagnosed 2012, following rapid weight gain, following becoming diabetic. The CPAP was a bit of a life saver over the last ten years. I could not believe how much better I slept with the machine, although I hated everything about having to use it.

I haven't used it since January this year and I am sleeping normally without it. Mrs A reports none of the "explosive snoring" that used to feature and I find i'm getting 6-8 hours consistently. I think it's down to weight loss and four inches off my neck circumference. I'm not handing the CPAP back just yet in case this is a false dawn, but three months in things look good.
 
Because of the high cholesterol I’m second guessing the whole thing, it’s not a case of “rather being unhealthy and at risk of blindness “ I’d also rather not have a heart attack, yes I understand that a lot of this stuff is now being questioned and may not be true but I’m no doctor or scientist
I have this morning been to GP as I was worried my cholesterol might of gone up due to eating cream butter cheese steak ect it’s stayed the same as always. Was your cholesterol maybe high before? Look for different recipes re low carb that you enjoy. It will get better I promise I was a mess in November and struggled with low carb but it’s payed of and I’ve reversed diabetes and off Metformin.
 
Re food with cholesterol in it, or food with saturated fat, and CVD risk - if you read anything, my suggestion is Nina Teicholz's
‘The Big Fat Surprise: Why Butter, Meat and Cheese Belong in a Healthy Diet’ (2015)
And visit her website - ninateicholz.com

Her references/studies referred to are fabulous.

(I really miss bulkbiker! He would have come in here and be direct, but on the nose in a good way.)
 
I really miss bulkbiker! He would have come in here and be direct, but on the nose in a good way.)
We’re not allowed to question that decision - forum rules say we can’t question the moderators decisions.
I agree a great cholesterol/low carb/statin/diabetes resource lost.
 
We’re not allowed to question that decision - forum rules say we can’t question the moderators decisions.
I agree a great cholesterol/low carb/statin/diabetes resource lost.
Not questioning it but what happened? PM if you wish.

He was vehemently anti statin, as am I basically. But I do take one for an unrelated reason and I had a job convincing him initially that my decision was justified.
He was also a good researcher / reader so yes, his interesting ideas and thoughts are missed. Sometimes to be a free thinker you have to cheese people off.
 
Since my diagnosis I’ve been sent for test after test, first problem high cholesterol, second i now need glasses and today Im told I have sleep apnea! I’m almost scared to go to anymore appointments just in case they find something else. I’m not particularly overweight, don’t get me wrong I could do with dropping a little bit but I think that’s true for everyone. I just don’t get how I’ve gotten into this state. I feel like giving up, I’ve changed everything I’m eating a low carb diet that if I’m honest I’m not really enjoying anymore. Maybe just a bad day, did anyone else feel like it was all doom and gloom after diagnosis at all these appointments
It's all been said already, but... The glasses may ned to wait a bit, as your eyesight changes when your blood sugars start dropping back to normal levels. The sleep apnea is likely to go when you change your diet and lose the tiny bit additional weight you have. I was choking in my sleep for a long time until i finally got my blood sugars down, and with it, my weight. It's all connected. Tackle one, tackle the others. You'll be fine. And doom and gloom, we've all been there, believe me. Find things in the diet that, to steal a Kondo phrase, spark joy. There's an imported, lavendar flavoured dark chocolate I adore. Costs an arm and a leg, but it hits the spot like nothing else. Find your bliss. It may be a bit of a search, but there's probably various ones out there!
 
Hi @wozey

Doom and gloom I absolutely get. If you read my early posts you will see I threw myself a real pity party. I could not imagine life on a low carb diet. Now at least 99% of the time I don't really think about it. There are still days that I find it challenging.

I also like @JoKalsbeek 's 'Find your bliss' :)

The trick is to find some thing(s) that are low carb but do hit the spot. I find I rotate mine- currently frozen diet jelly with cream.

The other trick is to post here :)
 
Going on for a couple of years ago I was unexpectedly diagnosed with something potentially very serious, out of the blue. I had (and still have) no symptoms of it.

Needless to say, my mind went into a bit of a snowstorm, trying to process the reality and potential. My OH sat me down and said along the lines of,....... "You felt fine the day before this. You tell me you feel absolutely fine now, so what is the difference, aside from a piece of information?"

To a very large extent he is right. I didn't get ill by being handed a new diagnosis. Nothing changed (except the cost of my travel insurance!), and I'm getting on with my life, trying my best to defy statistics, just as we all do or have done with our T2 diabetes.

Life can be cruel and the mental burden of a diagnosis can't be denied, but I think each and every one of us has to decide if our glass is half full, versus half empty. We have that choice. I'd urge you choose at least half full.
 
Phoned the lung function people yesterday to get an idea what "significant" actually meant, and they filled me in.

Then today I get a call saying there had been a cancellation. I wonder if they looked at the scores and thought wow instead of me waiting another 8 months.

I could not believe how much better I slept with the machine, although I hated everything about having to use it.

I'm just trying the all singing and dancing machine I got today (truly grateful) and felt like throwing it out the window on the first sit down test, felt like I'd never get used to the feeling of something trying to suffocate me but then what's the alternative, stop breathing and keep waking up, fighting for my life 130 times every hour. and never getting any restorative sleep? So constantly exhausted etc from as long as I can remember.

I did find turning a ramp option off lowered the pressure, at first felt like sucking on the hoover set to blow quite violently, very odd I'm slightly claustrophobic/cleithrophobic too. Ears keep popping, and cheeks feel like I've been blowing up balloons, Felt myself holding my breath to stop it blowing my lungs out. I'm sure I'll master breathing through it soon enough though.

They did speak about expectations and how long it would take to get used to, weeks to months, and didn't expect me to use it for more than half an hour today but thinking of 130 apneas /hr x 7hrs sleep = 910 times stopping breathing and waking EVERY night is making me not want to go to bed without it.

I'm glad to hear the benefits from people who have used such treatments.
 
To add, also now I don't feel so bad feeling tired all the time being told that bit of information
 
Phoned the lung function people yesterday to get an idea what "significant" actually meant, and they filled me in.

Then today I get a call saying there had been a cancellation. I wonder if they looked at the scores and thought wow instead of me waiting another 8 months.



I'm just trying the all singing and dancing machine I got today (truly grateful) and felt like throwing it out the window on the first sit down test, felt like I'd never get used to the feeling of something trying to suffocate me but then what's the alternative, stop breathing and keep waking up, fighting for my life 130 times every hour. and never getting any restorative sleep? So constantly exhausted etc from as long as I can remember.

I did find turning a ramp option off lowered the pressure, at first felt like sucking on the hoover set to blow quite violently, very odd I'm slightly claustrophobic/cleithrophobic too. Ears keep popping, and cheeks feel like I've been blowing up balloons, Felt myself holding my breath to stop it blowing my lungs out. I'm sure I'll master breathing through it soon enough though.

They did speak about expectations and how long it would take to get used to, weeks to months, and didn't expect me to use it for more than half an hour today but thinking of 130 apneas /hr x 7hrs sleep = 910 times stopping breathing and waking EVERY night is making me not want to go to bed without it.

I'm glad to hear the benefits from people who have used such treatments.
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.
 
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.

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 :D 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.
 
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Ooh, I just tried it one more time with a tip from that mate about being calm like a meditative state about it and not trying to resit and it feels a lot easier this time.
 
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 :D 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.
I saw a lot of 3ams for a while as I could only tolerate the machine for so long. Four hours decent sleep was still a lot better tghan six hours of apnoea, though. They gave me a new machine around 2020 and it was a big improvement - the old one was very noisy and had a permanent light ("so the nurses can see the readings" which wasn't really a requirement in my house) plus the exhaust blew pressurised air on to Mrs A who did not approve.

The NHS doesn't negotiate discounts, and when I told my sleep clinic that I was getting exactly the same equipment for a fraction of the price they were paying, they said I couldn't be. So maybe I imagined it, but I found that I could do better myself and it was well worth the money.

I have no succesful suggestions for avoiding the roll on to the back. Tried everything possible and nothing worked for me, it's just what I do.

So far, so good. Best of luck.
 
I saw a lot of 3ams for a while as I could only tolerate the machine for so long. Four hours decent sleep was still a lot better tghan six hours of apnoea, though. They gave me a new machine around 2020 and it was a big improvement - the old one was very noisy and had a permanent light ("so the nurses can see the readings" which wasn't really a requirement in my house) plus the exhaust blew pressurised air on to Mrs A who did not approve.

The NHS doesn't negotiate discounts, and when I told my sleep clinic that I was getting exactly the same equipment for a fraction of the price they were paying, they said I couldn't be. So maybe I imagined it, but I found that I could do better myself and it was well worth the money.

I have no succesful suggestions for avoiding the roll on to the back. Tried everything possible and nothing worked for me, it's just what I do.

So far, so good. Best of luck.

Thanks, I went in last night, woke in night, found I must have taken it off or it had come off. So I guess I’m going to have to get used to that, funnily enough I don’t feel so exhausted today despite like you say the 3am, so it must have been on for some amount of time. Could be psychological also but I feel slightly more alert today as well, but then even if I had it on for an hour of restorative sleep that’s more than I’ve been getting for a long time. Seeing the report on the machine is a bit clunky but seems there is an app they haven’t mentioned for patients, so I’ll email the technician and see what the craic with setting that up is.

Ho ho ho at the imagined discount, yes I’m sure you are talking rubbish about that!

Re back: yep, the same, short of a spike attached to my back I think it’s just where I end up too.

All in all I think I’m feeling some benefit already, thanks again for the encouragement.
 
Thanks, I went in last night, woke in night, found I must have taken it off or it had come off. So I guess I’m going to have to get used to that, funnily enough I don’t feel so exhausted today despite like you say the 3am, so it must have been on for some amount of time. Could be psychological also but I feel slightly more alert today as well, but then even if I had it on for an hour of restorative sleep that’s more than I’ve been getting for a long time. Seeing the report on the machine is a bit clunky but seems there is an app they haven’t mentioned for patients, so I’ll email the technician and see what the craic with setting that up is.

Ho ho ho at the imagined discount, yes I’m sure you are talking rubbish about that!

Re back: yep, the same, short of a spike attached to my back I think it’s just where I end up too.

All in all I think I’m feeling some benefit already, thanks again for the encouragement.

IMG_1681564768.775481.jpg 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
 
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