Newbie wanting starter advice!

[mattshaw]

Hello,
I'm a newbie. Went to my UK NHS doctor 2 months ago (in Bradford) suffering with sleep apnea. I am 42, average build but heavily built neck. Had an initial sleep test which revealed an api of 50. I went to see the consultant on Tuesday who has told me I can no longer drive, and has issued me with an auto Philips Dreamstation without the humidifier. (can order this if I so wish). I receive the machine tomorrow and hope to hell it works as I feel dreadful. Impressed with my NHS service so far.

I can feel my symptoms getting worse each day to the point where I am falling asleep upright at my computer in the afternoons. I can no longer drive and I am scared of it getting worse and losing my job etc. I also have high blood pressure I am being treated for and understand this could lower if the respirator works. I understand that legally I cannot drive until the results from the dreamstation are assessed after the 4th week of use, and even then I will have to hit certain levels of sleep (not sure what these are - anyone?).

If anyone has any tips for starting out with this machine and getting used to is and sleeping with a mask that would be appreciated as I think I will struggle to get used to it. I do however normally fall asleep within minutes of hitting the pillow and usually sleep on my side. Thanks for any advice.

[Pugsy]

Welcome to the forum.

Try using the mask and machine for periods of time when not under the stress of "I need to go to sleep". Use it while reading or watching TV so that you can get used to how it feels.
If you have trouble fitting your mask...there are many videos out there on mask fitting for each mask.
Do some practice mask fitting laying down when doing the final fitting....what fits great sitting up doesn't always work so great when actually laying down....just don't wait until you are under the gun to go to sleep to try the final fitting. Practice ahead of time.

Google "cpap rhinitis". Do some reading and if you experience any "allergy like" symptoms after using the cpap machine you might want to get that humidifier. Humidity needs vary widely among people and what they need and even where they live.
While a lot of people can get by without adding humidity, most will need at least a little added moisture and some even need a lot of added moisture. We have no way of knowing what you will need. It's something you will have to figured out. Here in the US humidifiers are pretty much considered standard equipment and included with all machine orders.

[rick blaine]

Hi mattshaw,

You sound as if you need to hear a few positives to help you through the changes you're faced with. And, in no particular order:

1. Right now you're in a good place compared to some UK patients. NHS treatment of sleep apnea varies across the UK. You've been to the hospital, had the home 'sleep study, and seen your consultant - all within eight weeks. In some parts of the country, it's a 14-week wait or longer just to get to the sleep study.

2. You've been given - on a permanent loan basis - a CPAP machine. Meaning you haven't had to pay for it. And it will be yours to use as long as you need it. And when it wears out, or if it ever breaks down, you will be issued with a replacement within days. That's good news.

The one thing you haven't been issued with - perhaps for budgeting reasons - is a humidifer.

That used to be how it was a few years ago here in Gloucestershire - you'd get a machine (a Philips Respironics 461) but not a humidifier. This year, new patients are being issued with a humidier - and don't have to buy one themselves. (I think that's because Philips Respironics have acted to liquidate old stock, and offered the foundation trust hospital a bulk-buying deal.)

If you're still using the machine a couple of months from now, it will be worth you buying the humidifier to go with it. (Yes, with your own money. Something like £150.) Many patients find that, without the humidifier, the air is both cold and dry. And dry nasal passages can lead to rhinitis, as Pugsy said, and dry throats can lead to more frequent sore throats. It's up to you.

3. If your hospital sleep medicine department is run like mine, you should be getting an appointment soon with one of the specialist nurses or sleep physiologists. And they should try you out with a range of masks - to get (a) the most effective fit, and (b) the most comfortable fit. And the mask is free. You don't have to pay for it.

And again, if your sleep medicine department is organised anything like here in Gloucestershire, if you need any help, you can ring them up anytime, particularly in your first three months. A period of adjustment and finding out how to make this treatment work is normal. We all did it.

4. About driving: now that you've been diagnosed as having sleep apnea, it is your legal obligation to inform the DVLA. And here's the thing - if you tell them promptly and voluntarily, you should find that getting your licence back is both quicker, and easier. And that the Agency will - altho' they won't admit this - drag their feet a bit if they find out some other way. (The GMC decided recently that doctors are obliged to inform the Agency. Aim to beat your doctor to it. )

As far as I can tell, the Agency is a lot less worried nowadays about sleep apnea than it is with other medical conditions. This is because they know that modern treatment for sleep apnea is very effective, when done right. So you may find you get your licence back within three months of intial diagnosis, if not sooner.

In some parts of the UK, where the machine issued has 'on air' monitoring via the mobile phone network, people have been OKed to drive on the 'in good faith' basis after as little as four weeks. But you would need to check if this is the practice at your hospital.

5. Which brings us to your last question "certain levels of sleep - not sure what they are").

What I'm about to say is ... an interpretation. An interpretation because in its official publications and on its website, the DVLA does not say precisely what the 'levels' are. But the conditions that the medical profession seem to agree on as qualifying are:

a. that you get at least four hours of sleep a night.

b. that - in your case, with an untreated AHI of 50, and your doctors going by what the medical journals said six years ago - your AHI comes down to under 10.

(Most people on this forum would say under 5 is even better. And you'll find that many routinely come in under 2.)

c. that you don't give up treatment after a few weeks or months - so that the SD card in your machine shows you using the machine long term, and

d. your scores on a questionnaire called the Epworth Sleepiness Scale come down to the 'normal' level. (The sleep service staff are usually the ones who ask you to fill this in.)

I don't know how soon after your initial mask-fitting session your first follow-up will be. That too varies from area to area. Here in Gloucestershire, the first follow-up is at three months. Thereafter, it's once a year. You would need to ask what it is in your area.

But if you meet these four conditions by the time of that first follow-up, you should be clear to go.

[avi123]

rick blaine what if mattshaw can't fall asleep with the machine or fall a sleep for 30 minutes and after a nonsleep of an hour falls asleep for 30 more minutes, etc., as happened to me? Who could mattshaw contact about it? Could mattshaw contact the sleep service department and talk with one of the specialist nurses or sleep physiologists. Also what about trying out a range of masks, tomorrow?

[reolhlains]

Hey Matt!
I'm onto week four with my dreamstation on an auto setting. To be honest, I got used to it almost right away - mine is set to start on a low setting (6) and I'm sound asleep before it starts to ramp up in response to my breathing (or lack of!). In the four weeks, it's got as high as a 14 one night (I wasn't even aware of it).
Yea, for sure I wake up a lot during the night - it's getting less and less each night, but I guess just my mind getting used to getting back to sleep with the machine when I wake up. What I would say is that, when I do wake up, I don't even realise the machine is on - it's very smooth and comfortable (even when I wake up and it's gone to a higher setting).
I'm loving having it - it has quickly made a difference to my life.
Good luck with it all - and please let us know how you are getting on - the way I am dealing with it is just to ride it basically - if I really want to take it off, I'll take it off - the urge to do that is becoming less and less (had it on for 8.5 hrs last night).

[Guest]

Hello, I'm at work so cannot read all this at the moment, but I am blown away by your detailed responses, thank you so so much. The DS has just arrived by courier so will be trying it tonight after reading your posts. Thanks again.

[burnt_toast]

After telling the DVLA, my licence was revoked.

It took 8 weeks from revokation to get my licence re-issued.

The docs want to see that you have had at least 4 hours a night with CPAP.

I think they said 70% of nights is also required - so, say for instance you find yourself stopping away unexpectedly, they wont penalise you.

The sensation is like falling asleep in a breeze. It isnt unpleasant, but occasionally I wake up to my mask "farting" on my face.

I sleep on my side too and my missus has told me that I never move in my sleep now.

[mattshaw]

Ok I'm back! Thanks so much for all the responses it is really helpful. I have used my machine for the first time last night and got on with it better than I thought. I watched TV with it on for an hour prior to going to sleep and would say it took me a while to get off to sleep and I did wake up several times. However only 1 trip to the loo in the night so not too bad. I feel very tired, but initially felt better. I have a slight headache not a bad headache as I have been suffering.

It was interesting to look at my results which have shown an:

• AHI of 7.4 (It was 50),
  8 hours usage
  2 clear apneas
  14 obstructive apneas
  44 Hypopneas.
  Mask leak was 0%.
  Minimum of 4cm pressure
  Maximum of 20cm pressure.

When I woke up I pressed the ramp button which helped me get back to sleep rather than sleep in a force ten gale! It would be interesting to know what you think of these results.

I am going to need some encouragement to get there I think as it is a very strange sensation having to wear the mask. I find that the anxiety it causes is far worse for me and the silly feeling that if the mask comes off then you are going to be starved of oxygen. I know that is not going to happen but that's what runs through my head alone in the dark!

Got a couple of other questions too...

What is the difference between a Clear Apnea and an Obstructive? - is obstructive total blockage of the airway?
What do you recommend to sleep on pillow wise. I love feather pillows and have three as a rule but think I might be better having less?

Thanks for the help thus far.

[Pugsy]

What is the difference between a Clear Apnea and an Obstructive? - is obstructive total blockage of the airway?

Clear airway/central apnea....a cessation of air flow with the airway open and not blocked by collapsing airway tissues that lasts for at least 10 seconds.
Hold your breath for 10 seconds. That's a 10 second clear airway/central apnea.

OA...Obstructive Apnea...the air flow is either reduced to 80% or more or totally blocked by the collapsing airway tissues. So it's 80% or more reduction in air flow...at lasts at least 10 seconds.

Hyponea...air flow is reduced to like 40 or 50% or more but not enough to earn the OA flag...and it lasts 10 seconds or more.

Your AHI is a bit high and primarily OA and hyponeas. I suspect you are going to need a little more minimum pressure to get the OAs/hyponeas reduced but I would get SleepyHead software up and running to see what's for sure going on.
You need a few more nights though to see for sure where the trends are going. I mention it only as something to keep on the back burner if the AHI stays up there.

The Clear Airway/Central Apneas....we can't do anything about them with your machine and unless you are having a really large number of them on a consistent basis we don't need to do anything about them.

Do you know about the software available?

[Guest]

Thanks so much for your advice. I don't know about the software no, I am also on a Mac not a PC.

[rick blaine]

Hello again mattshaw,

With sleep apnea treatment, there are always two parts to it. The technical/ equipment/ pressures side and the psychological/ adjustment/ comfort factors side.

For the moment, I'll confine myself to the technical side. And If I may, I'll give you some information, and then ask you for some information.

The treatment that you're getting at St Luke's (It is St Luke's, isn't it?) sounds as if it might be different from what's usual in the NHS.

The standard treatment in the NHS for sleep apnea as recommended by the National Institute for Health and Care Excellence (NICE) is as follows:

After your home sleep study and after diagnosis, the next step is for the sleep medicine department to loan you an auto-pressure-adjusting machine to use at home for a week (in some parts of the country, two weeks).

Then you take the auto-adjusting machine back to the hospital, and the sleep medicine staff take out the SD card, and use their software see how you've done.

What they're looking for is the pressure you were at or below 90 per cent of the time. Then they issue you with a fixed-pressure machine set at that pressure.

That's the NICE guidelines process.

Now, I don't know if your sleep medicine department are going to do that .... Or if the policy in your foundation trust hospital is for you to keep the auto-adjusting machine, and use it indefinitely from here on in.

It can make a difference to what anyone here might suggest to you.

So: what have the hospital said to you? Is it: "Here's the auto. Use it for two weeks. Then bring it back to us."?

Or is it: "Here's the auto. It's yours to use from here on in. Depending on the data on your SD card, we might want to tweak the settings. Here's how we're going to do that."?

It may be that the staff at your sleep medicine department are hoping the auto-adjusting machine will take care of any problems all by itself. From my own experience, I know that that just doesn't happen. Even auto-adjusting machines need some tweaking.

And it may be that the staff at your hospital simply do not know how to tweak them ... or even that tweaking the pressure range produces better results.

There's enough expertise here to guide you, but we need to know what machine you're going to be using long term.

Can you 'give us a clue'?

[mattshaw]

Hi Rick,
Thanks again. Yes it is st Luke's, but started out at Airedale and my second appointment last week was at BRI, but have my next appointment in January at St Luke's, then another appontment at Airedale!

My understanding is the specialist will look at my results online and can advise me or make the. Hanged to the machine online. The machine is brand new and came direct from Philips. She also gave me her mobile number to call her after one week so she could check everything was OK and run over my results so hopefully we can hit the goal for me being able to drive again asap. I may be wrong but feel that my treatment has been fasttracked slightly, maybe because my apnea was quite bad, I'm relatively young and need to drive to get to work, but I've been very impressed so far.

Last night I managed 7.1 hours with an ahi of 5.1, and my gf managed to sleep in the same bed as me and reported no snoring! She's a light sleeper. To say I'm over the moon so far is an understatement! Look forward to more help and advice going forward though, this board is amazing.

[mattshaw]

Thanks so much for your advice. I don't know about the software no, I am also on a Mac not a PC.

Hello, I see I can download this for Mac, once I open it how do I use it and import data from my Philips Dreamstation? Is it stored on the SD?

[OkyDoky]

Thanks so much for your advice. I don't know about the software no, I am also on a Mac not a PC.

Hello, I see I can download this for Mac, once I open it how do I use it and import data from my Philips Dreamstation? Is it stored on the SD?

Here is a site that will help you with downloading Sleepyhead. https://sleep.tnet.com/resources/sleepyhead
Check out all his info links while you are there.
Yes the data is on your SD card.

[mattshaw]

These are the grabs from my ap for the Dreamstation. Would other software give me more information than this? Is there a way I can find out how much actual sleep I had and the quality of that?

http://www.shiningexamples.co.uk/wp-con ... image1.png
http://www.shiningexamples.co.uk/wp-con ... image2.png

On another note I've got a banging headache today and it has not shifted.