Newbie feeling very sad

[Jay Aitchsee]

Hi, Purples. Welcome
As the others have mentioned, everything you are going through is pretty normal and has been experienced by most of us as we were starting out. Most of the discomfort; the blasting, the bloating, anxiety, etc., you are feeling will pass as you become more accustomed to and learn to manage your therapy to suit your needs. Most of us, that have been at this for a while, have become so accustomed to the therapy that we wouldn't think of sleeping without it. One day, I can almost guarantee, you will become so used to the feel of the air that you will have to pull the mask away from your face to see if it is actually on!
As you've noted, an AHI of 49 and oxygen desaturations into the 80's can have some serious health effects. Again, as others have noted, it is probably quite good that you have discovered this earlier in life rather than later.
One of the things you mentioned which I don't think has been addressed is weight gain and apnea. It's not so much the lack of oxygen, but the associated arousals and poor sleep that is thought to promote weight gain. See https://www.google.com/?gws_rd=ssl#q=po ... eight+gain and https://scholar.google.com/scholar?hl=e ... 0&as_sdtp= for lot of articles which relate.
The other is that the machine doesn't know if you are awake or asleep. So once conditions have be met (flow limitations, snores, or apneas) which have caused the pressure to rise, it won't go back down just because you wake. You've discovered a way to reset the pressure quickly by turning the machine off and back on. Otherwise, left on it's own, the machine would slowly lower the pressure back down when it no longer sensed events needing it to remain high. Oh, I see others have addressed this while I was composing. Anyway, you can see how the machine lowers the pressure by following the pressure graph on your latest posting from a peak at about 21:15 to a low about 21:50, when it starts back up
Good luck to you.

[rick blaine]

Hi Purples,

A few things from an NHS perspective, in addition to all the above. Right now, you are in the assessment phase for treatment within the NHS. You have been given an auto-adjusting machine to use for two weeks (here, in Gloustershire, it's only one week).

1. The job of an auto machine is to (a) look at your pattern of breathing on a moving five-minute window, and on the basis of how you breathe/ don't breathe/ half-breathe/ hesitate/ and-or snore, to (b) up the pressure a bit.

And then, if that doesn't get your airway open, to up it a bit more. And if need be, after another five minutes, to do it again. Until it finds the pressure that will keep your airway open - most of the time (more on that in a bit).

Auto machines have electronic chips in them, with built-in algorithms - computer programs, if you like - which tell the blower bit what to do - which is the 'up a bit' I spoke of, but is also the 'down a bit', for times when your throat and windpipe open up again.

2. Also built-in is software which records all of this activity into memory chips (RAM) and also on to the SD card. As you may have figured, the SD card can be taken out and plugged into a computer - to show your consultant and/or specialist nurses how you've done. But, as you've also noticed, the data can also be transmitted over the mobile phone network - especially now that some NHS sleep service departments have standardised on the ResMed Airsense 10 range.

Your consultant and/ or the sleep service nurses like to see two week's worth of results because very few people sleep exactly the same every night - and they want to get a more representative sense of what you need.

3. The home diagnosis process (or 'sleep study') you went through can also be done by having you stay over-night at the hospital, in what's called a 'sleep lab'. Then, if your results are poor (and anything over 30 is rated as 'severe'), they have you back for a second over-night stay, where they mask you up, and the techies gradually adjust the pressure 'by hand'.

In the US, the second over-night stay is called 'titration' (just like in high-school chemistry), and it can also include the trying on of different masks.

Now, while there are sleep labs in some NHS hospitals, fewer than 10 per cent of NHS patients investigated for sleep apnea are diagnosed via a sleep lab. The trend in the UK for the last ten years has been to do both the diagnosis and the titration (or as I've been calling it, the assessment) in the patient's home.

4. Which brings me back to: as I understand what you've posted, you are still in that assesment phase (as well as 'in the 'getting used to it' phase.)

And people suggesting 'you could change this' or 'you could adjust that' need to be aware of what is the NHS standard protocol for treatement of sleep apnea.

It is the policy of the NHS to only issue you with the APAP machine for a short period, and to use it to find the pressure you are at, or below, 90 per cent of the time. Sometimes called your '90 per cent pressure'.

And then to issue you with a fixed-pressure CPAP machine - set to that pressure - as your treatment from then on.

A CPAP, not an APAP.

5. It's to do with cost. The machine is yours to use as long as you need it, and is provided at no cost to you. When it wears out, or if it breaks down, it will be replaced same day at no cost to you. And the mask is also free (as is the sleep study and all the sessions with the consultant and the mask-fitting sessions and all the annual follow-ups). But the NHS has to work within a budget.

6. Now ... some better news. Most people do not need that 90 pc pressure all of the time. They may only need it while dreaming and in REM sleep. Or they may only need it when they move into a certain position - when they tilt their neck, say. And with an APAP machine, once you raise the minimum pressure from the lowest-possible 4cm to maybe just 2cm below the person's average pressure, the machine's response to anomalous pressures is that much quicker - with far fewer over-shoots.

And then, when that pressure need is over, it can drop back to a more comfortable level again.

I'm saying all this because comfort seems to be a major issue for you.

And #7, what I'm trying to tell you is this: once your assessment is over, you may want to consider buying your own APAP machine (and getting advice on this forum on how to best adjust it). If your doctor and nurses are like mine, here in Gloucestershire, they won't mind. They'll even fill in the prescription form for you. (ResMed and other UK suppliers will only sell you a machine if you have a 'scrip').

Your doctor and nurses will go on seeing you, treating you, providing you with replacement masks, and so on - just like before. You'll continue to be an NHS patient in every sense - like I am - but one who buys and owns their own machine - like I do.

At £600+ for an APAP, you might think that a lot. But I think of it this way - a machine lasts on average five years - that's less than 35 pence a night. Isn't your health and wellbeing worth at least that?

The telephone number of ResMed UK is: 0800 907 7071. You'll also find them on the internet.

[Pugsy]

Check out this thread for examples of how we like to see the reports.
viewtopic/t103468/Need-help-with-screen-shots.html
We need the left side stuff...AHI graphs and category as well as the Statistics..
And these graphs on the right....Events, Flow rate, Pressure, Leak and maybe Flow limitation if it is very active.

On the left side you can turn off the pie chart in Preferences/appearance tab and that will help bring the statistics into viewing area.
And the Calendar can be hidden to further give more room for the statistics....just click on View and remove the check mark for the Calendar.

[Purples]

Hi Rick - Many thanks for your insights and advice. Your insights into the NHS process are invaluable and your explanations are super-clear. Thank you so much! I am not at all adverse to buying my own equipment and I understand the advantages from what you've exaplained - I'm fortunate to be in a position to be able to do so. I will discuss that with the hospital team when I go back to get the CPAP machine. I'm getting together a list of questions to ask them at that appointment!

I think in the coming days I'll make sure I use the machine as much as possible - the hospital said a min of 4 hrs per night - but maybe also give myself some normal sleep that'll be uninterupted so I don't get so tired, as I am now, which I think is contributing to feeling so upset.

Must dash - out to see a film with a girlfriend which I'm hoping will cheer me up!

Will reply to other messages tomorrow.

Thanks again to all that have replied.

Best WIshes, Purples x

[Goofproof]

Four hours isn't the goal, it's the least you can use your machine and remain compliant to justify someone else paying for your machine.... Everytime you sleep you need to be masked up, period! Everytime you sleep, you are prone to stoping breathing, that can cause organ damage or death, it doesn't happen every time, but the chance is there. Also the damage to your body keep adding up over time.

Good Luck, embrace the air. Jim

[Arlene1963]

Also I don't really understand why I have sleep apnea and whether or not I can do something about it. I have a BMI of 30.4 which puts me just into the Obese category. But I lost 21lbs about 18 months ago and have kept it off, so I really want to know if I lose more weight will that "fix" it? Or have I somehow damaged my body irreversibly by being overweight and now it's too late?! Nobody has explained that to me.

....

Very frustrating to not know if this is something that can ever be fixed or not, so I don't know whether to focus my energies on weightloss to try to fix it or to try to accept that this is a forever thing.


Purples

Hi Purples, and welcome.

I had exactly the same questions re weight loss as you do right now when I was diagnosed last year.

I've spent hours and hours looking at the most recent studies, trying to find proof that weight loss "cures" OSA, and all I found is that although there is a distinct trend towards an improvement in AHI and desaturations with weight loss, this is highly variable among individuals. Also,weight loss tends to reduce severity of OSA, i.e. from severe to moderate, for example, rather than eliminating OSA completely.

I was one of those who went from moderate to mild OSA with weight loss of 10% ... so I'm still on the "machine".

In response to your question about focusing on weight loss, YES, continue to do so, and congratulations on your 21 pound loss so far and keeping it off for over a year. Not because it will "fix" OSA, but because it will help consolidate the health gains made with CPAP (or APAP) I really believe the two go hand in hand in those people who are overweight and have OSA. CPAP (or APAP) and weight loss, not one or the other, both are necessary for optimal health outcomes. Add exercise to the mix as well and it gets even better. Especially with age on your side.

[palerider]

Being able to see the data it's collecting and understanding why it's doing the horrible full blast thing would be great. Hopefully I've given you the info you need to help with that?

the horrible blast of air should only happen when you take the mask off. the machine works really hard at maintaining whatever pressure it should have at any given instant, normally that means the fan is running fairly slow, but when you take the mask off, the pressure drops way down, and so the fan goes faster and faster trying to get the pressure to build back up, but it can't since your mask is off.

within an instant, the fan in the machine is running at full speed, trying to get the pressure up... as soon as you put the mask back on, it immediately slows back down to it's normal... sometimes I wish there was a "speedometer" display on the machine so people could see that... you could press your ear up against the machine and be able to hear the speedup and slowdown of the fan, but that would probably be an awkward position to get yourself into

[tlohse]

I found out I have sleep apnea at a much younger age then you did and I have been on it since 2013. Yes CPAP is a forever thing for most people but losing weight can help. It is normal for it to feel kinda wierd at first and it takes time to get used to it. alot of machines have a ramp up button that allows you to make it easier to get used to your pressure setting so you don't get overwhelmed by it. Hope this helps.

[Purples]

I live in Singapore and we are in the tropics. Weather is a constant humid 34C (93F). I'm able to adapt to cpap at even at our weather.
I have traveled to USA from Singapore (23 hrs by plane) and bringing a cpap is manageable.
Hope my story is able to encourage u. Sometimes the best way to keep our spirits up is to think that there are others who are way way worse off than us?

Thank you for sharing your experiences. It's very helpful. I had a better sleep last night: 8 hours 15 mins on the machine, most of which was asleep although it took me a long time to get to sleep. So I'm feeling less miserable today. I appreciate that being on CPAP for the rest of my life isn't the end of the the world and there are lots worse things that I could be facing right now. I accept that it's a good thing I got diagnosed and hopefully will avoid future serious illness.

The TSA (transportation safety administration) says that Cpaps are medical equipment. They do NOT count against your luggage allowance and can not be separated from you. And the airport personnel seem very familiar with the cpap cases, and just wave me on thru security. You just need to check what your local laws are. Here, the airlines have to abide by the TSA rules.

Thanks, this is really helpful. My long-haul flight for the holiday will be on Emirates and they go by the rules you mention and have very clear info about the the paperwork I need to take with me. I've emailed the regional flights to ask them about their policies - which is just a question of cabin baggage allowance as they are short daytime flights.

Isn't the machine supposed to adjust its pressure so once I'd created the seal and am breathing normally the pressure goes down?!

Yes, the pressure should and will reduce when you wake up and it's no longer trying to fight the apneas but the reduction isn't as quick as people think. It actually can take several minutes (depends on how high it went) for the pressure to come down and most people find it just takes too long and it's better to just reach over and turn the machine off and then right back on again. That way the reduction to the lower starting pressure is immediate.
These cpap/apap machines don't increase the pressure in the blink of an eye and they don't reduce the pressure in the blink of an eye either.

Thank you, this is v helpful. I'm pleased to say that I didn't get any leaks that I'm aware of last night and definitely not the horrible very strong and leaky issue that happened previously. Fingers crossed the mask adjustment I did helped and maybe it won't happen again. Hopefully the hospital will respond to my question too (they can see the remote data from my machine).

As you've noted, an AHI of 49 and oxygen desaturations into the 80's can have some serious health effects. Again, as others have noted, it is probably quite good that you have discovered this earlier in life rather than later.
One of the things you mentioned which I don't think has been addressed is weight gain and apnea. It's not so much the lack of oxygen, but the associated arousals and poor sleep that is thought to promote weight gain. See https://www.google.com/?gws_rd=ssl#q=po ... eight+gain and https://scholar.google.com/scholar?hl=e ... 0&as_sdtp= for lot of articles which relate.
The other is that the machine doesn't know if you are awake or asleep. So once conditions have be met (flow limitations, snores, or apneas) which have caused the pressure to rise, it won't go back down just because you wake. You've discovered a way to reset the pressure quickly by turning the machine off and back on. Otherwise, left on it's own, the machine would slowly lower the pressure back down when it no longer sensed events needing it to remain high. Oh, I see others have addressed this while I was composing. Anyway, you can see how the machine lowers the pressure by following the pressure graph on your latest posting from a peak at about 21:15 to a low about 21:50, when it starts back up
Good luck to you.

Thanks for your post. Yes, having looked up the health consequences of apnea I am grateful of the diagnosis. Obviously I wish I didn't have any health complications or had to use the machine, but I appreciate in the scheme of things it's not the worst thing to be diagnosed with and others have much bigger issues. So I'm trying to feel grateful.

Thanks for the addressing the weight gain / apnea issue. I'm going to make a concerted effort to lose more weight now, for health benefits as well as continuing to prefer how I look when I carry less weight.

I appreciate that the machine doesn't know whether I'm awake or asleep. What I meant was I couldn't understand why, if I had a leak and the pressure had gone way up high, why it didn't jump back down promptly when I ensured a good mask fit and breathed normally. As others have explained, it doesn't react straight away so I'll just resort to on & off again to get the pressure back down.

Four hours isn't the goal, it's the least you can use your machine and remain compliant to justify someone else paying for your machine.... Everytime you sleep you need to be masked up, period! Everytime you sleep, you are prone to stoping breathing, that can cause organ damage or death, it doesn't happen every time, but the chance is there. Also the damage to your body keep adding up over time.
Good Luck, embrace the air. Jim

Hi Jim - Yes, I understand that the goal is to use the machine for every sleep and I'm not trying to avoid that. I just meant that I am *so* tired from not sleeping whilst trying to get used to the machine that I might have a few hours if I needed it without the machine so as to get some sleep, while I build up to using it full time. Last night I had it on for the full 8hrs 15mins I was in bed, although it took me quite a while to fall asleep as I'm not used to the mask or air. Frustrating, and I'm still really tired today, but a phase I just have to get through, I know.

I had exactly the same questions re weight loss as you do right now when I was diagnosed last year.
I've spent hours and hours looking at the most recent studies, trying to find proof that weight loss "cures" OSA, and all I found is that although there is a distinct trend towards an improvement in AHI and desaturations with weight loss, this is highly variable among individuals. Also,weight loss tends to reduce severity of OSA, i.e. from severe to moderate, for example, rather than eliminating OSA completely.

I was one of those who went from moderate to mild OSA with weight loss of 10% ... so I'm still on the "machine".

In response to your question about focusing on weight loss, YES, continue to do so, and congratulations on your 21 pound loss so far and keeping it off for over a year. Not because it will "fix" OSA, but because it will help consolidate the health gains made with CPAP (or APAP) I really believe the two go hand in hand in those people who are overweight and have OSA. CPAP (or APAP) and weight loss, not one or the other, both are necessary for optimal health outcomes. Add exercise to the mix as well and it gets even better. Especially with age on your side.

Thanks so much for this, Arlene. It's really helpful. Obviously I wish the answer was "lose more weight and you won't have apnea any more and won't need to use the machine any more". But I accept that it's not, and will focus on getting used to the machine and accepting it as part of life. I will try hard to lose more weight and I've already gone from doing no exercise to doing my 10k steps per day encouraged by my Fitbit.

the horrible blast of air should only happen when you take the mask off. the machine works really hard at maintaining whatever pressure it should have at any given instant, normally that means the fan is running fairly slow, but when you take the mask off, the pressure drops way down, and so the fan goes faster and faster trying to get the pressure to build back up, but it can't since your mask is off.

within an instant, the fan in the machine is running at full speed, trying to get the pressure up... as soon as you put the mask back on, it immediately slows back down to it's normal... sometimes I wish there was a "speedometer" display on the machine so people could see that... you could press your ear up against the machine and be able to hear the speedup and slowdown of the fan, but that would probably be an awkward position to get yourself into

My experience isn't that the machine reacts straight away. I had to switch it off and back on again to get the pressure to go down. Hopefully once the settings are refined by the hospital it'll stop happening (and it didn't happen last night at all). Not sure why we have different experiences in that regard, but thank you for your input.

I found out I have sleep apnea at a much younger age then you did and I have been on it since 2013. Yes CPAP is a forever thing for most people but losing weight can help. It is normal for it to feel kinda wierd at first and it takes time to get used to it. alot of machines have a ramp up button that allows you to make it easier to get used to your pressure setting so you don't get overwhelmed by it. Hope this helps.

Thanks for your thoughts. I'm set on auto ramp and the initial pressure is weird but not so unpleasant that I can't eventually get to sleep with it. I guess I just have to get used to it. Many thanks.

[D.H.]

To the original poster.

Having used CPAP for seventeen years has not stopped me from traveling to nineteen countries in four continents, two ocean liner cruises, a charter yacht, and two riverboat cruises. I had used a CPAP machine on all of them! I'm planning another trip this year and yet another one next year. I was 47 when I started; I'm 60 now.

[rick blaine]

Hello again, Purples,

I'm glad you've made a little progress. By the time of your next visit, I had hoped to have found and put up my standard piece on dealing with the DVLA - the one that walks you through the process in ordinary-person's language. But it's been a busy day, and now it's late (gone midnight, local time) ...

The headline news is that they - the Agency - have been much more reasonable lately. They want people to declare themselves, and to present themselves for treatment, and not try to stay under the radar. So they're being less martinet about it.

If, by the end of your first three months, you're getting at least four hours sleep a night, and your AHI is much improved (in practice, below 10), and your sleep service department is happy with you ...

Three months isn't so long to wait. And as it is, it usually takes them at least six weeks to process a case. (So, if you start the ball rolling this week ... ) They're a lot more relaxed about sleep apnea than they used to be - because, I think, they know that modern treatment is so effective.

More details tomorrow. Look out for them.

[burnt_toast]

Im in a similar position.

Almost word for word in fact!

My license was revoked about a month ago.

They have all the paperwork now but I am worried it will take a long time.

Have you had anything from the DVLA yet regarding revokation?

I have also posted a thread - I am a few weeks furthur than you but not by much