UK Pre-Noob - Lots of questions

[MopTop]

Hi there.

I've done lots of reading on here today - so much so that my brain hurts! But I still have loads of questions so thought I'd start a thread of my own - hope that's ok?

So as the title says I'm not even a real Noob yet as I don't have an official diagnosis - just a self-diagnosis. However, I have lots of things that I don't know and was hoping you could help. So first some background....

I live in the UK (relevant because we have the NHS) and am a 48yo female. I broke my nose when I was 8 or 9 yrs old (face planted into the road from my push bike) and have snored ever since. In 2004/5 I had rhinoplasty to try and correct my deviated septum (partially successful - I can now breath through my nose a little bit) but didn't affect the snoring. I snore so loudly that my partner and I sleep in separate bedrooms permanently.

I haven't really slept properly since my late teens, although it was not really noticeable as I didn't have a job until I finished University so slept at random hours. It was only when I got my first job - Primary School Teacher that my poor sleep became really obvious. I was tired most of the time and fell asleep as soon as I got home in the evenings. Fast forward 20+ years with not much changing.

In 2012 I met my current partner who couldn't sleep through my snoring and told me that I frequently stopped breathing in the night. I went to my GP who arranged for me to have an oximeter test at home - the result of that was that I didn't have sleep apnoea Seemed weird because I seemed to fit all the symptoms. Fast forward to 2 months ago.

Went to see another healthcare professional who is convinced that I do have sleep apnoea because I have lots of the symptoms - snoring, wake with dreadful headaches, frequent toilet trips in the night, sleepiness during the day, 13 on the Epworth Sleep scale. So back I go to my GP who tells me that I don't fit the profile of a sleep apnoea sufferer because I have a BMI of 19, my neck is less that 13 (?) inches and I'm female. However, she did agree (because I started to cry!) to refer me back to the hospital for another oximeter test.

So now to my dilemma/questions. I have to wait until August 29th for the oximeter test and if I get a positive I have another possible 10 week wait for a machine should that be what they recommend. However, I have read that oximeter tests alone are not all that reliable for diagnosis and obviously I'm worried having failed one before. Also the NHS has quite a high threshold to meet criteria of diagnosis - so I am wondering about just buying a machine. However, I don't know what I don't know and I don't want to make an expensive mistake (it will be approximately £1000 for the whole kit in the UK).

Any ideas on where to start? I feel hopeful and depressed in equal measure at the moment. Hopeful that there may be a solution and I'm not just lazy (what I've told myself for 20+ years) and depressed that I may not meet threshold for the NHS or I may have to wait until nearly December to get a machine from the NHS (if they agree I have it).

Sorry - this post got really long...................

[katestyles]

Welcome!

I’m sorry your first post got lost.

I am a 54 yr old female British expat living in the USA, so I can help a little with cross cultural translation.

If they are doing an oximeter test on you, they are going to see how your blood oxygen level drops overnight.
That is NOT the only issue that sleep apnea causes.

[Goofproof]

A oximeter test, is't a very reliable test for Sleep Apnea, from what you write, you most likely do have it. I would not stop without a lab test, or I'd get a APAP and use the software for it and treat it myself. Jim

[rick blaine]

Hi MopTop,

I live in the UK, and I know a bit about the treatment options avaiable to you – both within the NHS and also in the private sector.

I'm posting this at 11pm GMT, on Wednesday, the 8th. You may well have turned in and won't see this till Thursday, but I'll post it anyway to let you know your post has been read. And I will start drafting a longer reply for you.

[ChicagoGranny]

So back I go to my GP who tells me that I don't fit the profile of a sleep apnoea sufferer because I have a BMI of 19, my neck is less that 13 (?) inches and I'm female.

Your GP is very ignorant about sleep apnea.

"It's not the size of the neck on the outside, it's the size of the airway in the neck." - Dr. Mack Jones

My BMI is about the same as yours, and I have severe obstructive sleep apnea.

Given the state of the NHS, I'm not sure what to tell you to do. Rick Blaine is very knowledgeable in that area.

[rick blaine]

Hello again MopTop,

Your GP is working off some old and very out-of-date text books. The classic picture for sleep apnea – male, over 45, over-weight, collar-size 17-plus – that got left behind long ago.

From what you say, and in my opinion, you 'present' with more than enough recent symptoms for you to be tested. And you have an adult-life-long history of poor sleep. If you put the two together, that's more than enough cause to investigate further.

You say you had a previous at-home sleep-study. Can I ask a few things about that?

Was it the kind where you wear what looks like a big, fat wristwatch on one arm – with a clip that goes on your index finger? (Technically called a 'pulse-oximeter'.) And that and that alone?

Or was it the kind of sleep-study where they gave you a kit in a little canvas bag – with a clip to go on your finger, a concertina tube to go round your chest, and a double-pronged plastic tube to go in your nostrils – and all three plugged into a recorder bit, about the size of a pack of cards? (Sometimes called 'a three-channel sleep-study'.)

If it was the first – (and if the 'fat watch' doesn't say 'WatchPat') – then that isn't as reliable a test as the 'three-channel' one. So you're right when you say you've read that.

In some areas of the UK, GPs have been using the single pulse-ox as a form of screening – because nowadays, many hospital sleep-medicine departments are 'over-subscribed' and have quite a waiting list, and some GPs don't want to add people to it 'unnecessarily'.

Another question is: which part of the UK are you in, and which Foundation Trust Hospital are you being sent to? Both diagnosis and treatment do vary depending on which area you're in.

I ask because there is a third test method – the over-night stay in a 'sleep-lab', which monitors not just the above three channels, but a dozen other variables, including brain activity and physical movement. But it is only selectively available. Meaning that not every patient gets evaluated that way, and not every FT hospital even has a 'sleep lab'.

In my area (and when I was first referred) it used to be that only one in ten patients was evaluated in the sleep-lab. It may be even fewer now.

Anyway ... you have a 16-week wait to be tested again. And you say there would be a ten-week wait after that (should the test be positive) before being issued with a machine. Hmm. Not a great prospect.

Let me list some of the options if you were to go outside the NHS system – at least for diagnosis and machine. With the possibility that, later on, you can have on-going management of the condition within the NHS.

First, you can have a three-channel at-home sleep-study from a firm in Reading. They can mail the kit to you today. Cost nine years ago was £264. Might have gone up since. Results about a week later.

If you want to go that route, I can give you the phone number.

The people offering this sleep-study also sell machines – and I have to say that their report, while not dishonest or factually inaccurate, is worded to stress the advantages of buying a machine. And from them.

But ... in the UK, you can buy a machine directly from the manufacturers. And that is a better bet for lots of reasons.

The two most-widely-used brands (and also the most widely-used within the NHS) are Philips Respironics and ResMed. Available from Philips Respironics UK in Chichester, and ResMed UK in Abingdon, respectively.

Cost of a PR machine – about £600. Cost of a ResMed machine – about £680. Either one should last for a good five years, if not longer.

You need a prescription or 'scrip' before either manufacturer will sell you one. But your GP can sign the downloadable form – and without you having done a sleep-study – as long as they honestly believe it will help you.

Another possibility: if the private three-channel sleep-study is close to indicative, but doesn't meet the NHS qualifier (with them, treatment starts with an AHI of 15 or above), there are some who say you should still have treatment.

And one way to find out if CPAP treatment is appropriate is to rent a machine for a short while, and see if using it makes a difference.

There's a place in London rents out CPAP machines for a week at a time, for £100 a week. A bit expensive, but I mention in it case it would help in your decision process. They also provide a mask with the hire.

Otherwise, masks you can get from both Philips Respironics UK and ResMed UK. If you were being treated within the NHS, the mask would come as the machine does – ie, free at the point of treatment. If you buy your own, most masks from the above two suppliers are about £120 each.

This much for now.

One more thing. Even if you start out as a self-funded patient to begin with, you can still go along to your appointment in August. They would most probably test you again (for legal reasons). And if you become their patient, you can have a foot in both camps. Use the NHS for support, letters to the DVLA, mask-parts replacement when they wear out, new designs of mask as they become available, and so on, and continue to use the machine that you bought – which is what I do.

[katestyles]

Bravo!

[Miss Emerita]

Yes bravo, Rick Blaine! A couple of footnotes.

I’m female, with normal BMI and a slender neck, and I have moderate apnea, with an untreated AHI of 23. With APAP treatment, I’m consistently under 1, and no longer always gloomy, exhausted, and mentally dulled.

A fair number of people might suggest getting a ResMed machine instead of a PR machine. Your call if you are paying, but you might check back in on the forum about that before you invest.

While some people feel immediately better when they start treatment, for many others the improvements come more gradually. The big benefit in renting might be not so much to see how you feel as to see what your AHI is and (with the help of available software) to be able to understand additional aspects of your nighttime breathing. Again, many people on the forum could help.

[Mogy]

Hi Mop Top and rich blaine,
The sellers of the Contec RS01 have recently dropped their price on this 3 Channel Sleep Apnea Screener to US$100 (eBay). If you search for it here it has been discussed.
Rich, would you consider this as a viable possibility for Mop Top?

[MopTop]

WOW!! Thank you all for your replies - very good of you to take the time and effort.

*bows down in awe to Rick Blaine*. Comprehensive doesn’t even cover it!

I only saw that this thread had been approved a couple of hours ago and need time to read and digest what you have all said/asked (I am useless after about 3pm - just one of my symptoms that I have lived with for a very long time!) Tomorrow when i feel more like a human I will reply properly but just wanted you all to know that I had seen and appreciated your efforts

[Cpapian]

Depending on your personal preferences there is a second hand option available.


There is a company called Secondwind. They are regarded highly by many forum members. They guarantee their products, ensure they are clean and I think, smoke free. They ship internationally. I believe prices are competative.

Sites like gumtree are also places where you can pick up a second hand machine. I just looked. They have a machine for 475£ which is not reasonable. It was a remstar, not one of the preferred machines and sells for $499 cdn brand new here in Canada .... with fresh masks, hoses etc. We have kijiji here and watching will turn up some deals.

Some forum members sell second hand machines as well.

If you choose to go one of these routes, check with the forum here before you buy.

I recommend sticking with ResMed or Phillips Respironics. They are the name brands and are compatible with analytical software Sleepyhead or OSCAR.

[MopTop]

Hi again Everyone,

Thanks for all your replies! Now I've had some sleep I can think about it all a bit more!

Your GP is very ignorant about sleep apnea.

She certainly is!!

I recommend sticking with ResMed or Phillips Respironics. They are the name brands and are compatible with analytical software Sleepyhead or OSCAR.

Those are the two machines that I have been looking at buying. I was erring towards the Phillips as I read somewhere that having separate humidifier was better and less chance of damaging the machine during travel (something about water leaking into the machine whilst it is jostled about in your suitcase?) Not sure if that is really true but I read it so I've remembered it.

Your GP is working off some old and very out-of-date text books. The classic picture for sleep apnea – male, over 45, over-weight, collar-size 17-plus – that got left behind long ago.

Apparently not in Bournemouth! She must have repeated that at least three times during my 10 minute consultation. She just kept saying "you don't fit the profile" Honestly - it was all I could do to not slap her! At one point she said in a very condescending way "well apart from being a bit tired, what else is wrong with you - you look fine"

Was it the kind where you wear what looks like a big, fat wristwatch on one arm – with a clip that goes on your index finger? (Technically called a 'pulse-oximeter'.) And that and that alone?

Yes, that was all it was, and no, it didn't say "WatchPat". Also, ironically according to my partner (we slept in the same bed that night) he said it was one of the best (for that read quietest ) nights I'd ever had!

Another question is: which part of the UK are you in, and which Foundation Trust Hospital are you being sent to?

I live in Bournemouth and have been referred to the Thoracic Unit at RBH then if the result comes back positive then I will be referred to Blandford Sleep Clinic for CPAP fitting.

The people offering this sleep-study also sell machines – and I have to say that their report, while not dishonest or factually inaccurate, is worded to stress the advantages of buying a machine. And from them.

That seems to be true of all the companies offering private, in-home sleep studies. I have emailed several and asked if I was to get diagnosed via them would that give me the prescription that I need to buy the machine anywhere and not one of them has come back with a straight, transparent answer!!

But your GP can sign the downloadable form – and without you having done a sleep-study – as long as they honestly believe it will help you.

That is very interesting - no-one has told me that little gem before!!

One more thing. Even if you start out as a self-funded patient to begin with, you can still go along to your appointment in August. They would most probably test you again (for legal reasons). And if you become their patient, you can have a foot in both camps. Use the NHS for support, letters to the DVLA, mask-parts replacement when they wear out, new designs of mask as they become available, and so on, and continue to use the machine that you bought – which is what I do.

That might be very useful to do. I haven't even started researching the DVLA implications - at the moment I am working on the theory that I've been like this for the 30 years that I have been driving so I'm no more dangerous now than I was before I thought about sleep apnoea so I will just carry on as I am.

So of the two machines - ResMed and PR which is the best or is it simple personal preference? I like the sound of the ResMed AirSense for Her, but then I have also read that stuff about water leakage and don't want to ruin my machine.

I also have one other question - I have to get up about 4 times a night to go to the toilet - do you have to un-hook yourself from the mask each time or does the hose just come off? I realise that over time the toilet trips should become less frequent but since I started all this research I lie awake at night (as you do!!) thinking about the implications of actually sleeping hooked up to a machine via a tube and to be honest it's a bit daunting!

Thanks again for all your help guys - I'm going to go and think about all of this new information

[katestyles]

1) There should be no problem with leakage when you travel - you pull out the water reservoir, dump the water, and travel with the two slightly separated. No leaks. You should get a bag with the machine.

2) In general, the mask has a short hose which then joins to a long hose to the machine. Just pull the mask off at the join, and you can wander anywhere you need! You will look silly though!

[prodigyplace]

I use the Resmed P10 nasal pillow type mask. You can mix brands of masks & machines because they all use a standard size hose connection.
I find it easy to shut off the machine & take the mask off when getting up. You can learn to put this mask on by feel and then turn the machine back on.

[rick blaine]

Hello again MopTop,

I did some fact checking of my own post. I got the location wrong about the company that offers private at-home sleep-studies. The firm called Eu-Pap is not in Reading, but 24 miles east, in Walton-on-Thames. And their phone number is 0800 024 8050.

Also, they no longer offer the three-channel at-home sleep-study (which is the same one most NHS hospital sleep-medicine departments use), and instead, now offer a study using the WatchPAT device. Fee £199, including VAT.

And although the WatchPAT looks pretty much the same as previous 'big, fat, wrist-watch' recorders, it is said to have much more refined sensors and algorithms in it - sensors which give as accurate a clinical picture as a three-channel study.

Details here: https://www.eu-pap.co.uk/sleep-studies.html

And I repeat, you don't have to buy a machine from them just because you might have previously done a sleep-study with them.

And ... the other thing that occured to me since my previous post is this: you might think about going second-hand. It's cheaper. You might get a machine with 'low mileage' on it for, say, £400.

There are a couple of advantages to going second-hand – and at least one disadvantage.

The advantages:

You could use the machine for a week or so at its 'wide-open' setting – ie, without any pressure adjustments to suit you (that will come later) – and let it act as an ongoing 'read' of your sleeping. Most machines made in the last 10 years which are described as 'fully data compatible' allow this, and they put all the info on an SD card.

And then, using some shareware called SleepyHead, you can read the SD card on your home computer – in much the same way as hospital sleep-medicine departments do their annual follow-up using the appropriate proprietary software.

It's a kind of 'back-door' way of doing a sleep-study. (And some stingy insurance companies in the US use this very process as their primary way of doing a sleep study. So it's not unheard of. )

And then, if you were to share that information here, people would quite happily suggest to what level you could change the pressure settings. And they will even tell you how do it.

And if you were to keep that second-hand machine for ongoing use, then Miss Emerita is right – there's a strong argument for you getting the ResMed 10 AutoSet For Her.

Except ...

The disadvantage.

If you buy your own machine – whether new or second-hand – you might find yourself cut off from NHS treatment for sleep apnea.

Because, if you were to buy one brand – let's say, a ResMed – and still go along to your NHS appointment in August, you might find the RBH and the Blandford sleep clinic have standardised on the other main brand, Philips Respironics.

And they wouldn't have the proprietary software to read your SD card.

Same thing if you had bought a PR DreamStation machine, and they'd standardised on ResMed. They wouldn't have the proprietary software to read a PR-formated SD card.

(And it's worth saying that the latest models of both brands are good machines, and all other things being equal, both will get the job done.)

So ... if you were thinking of buying the slightly-better ResMed 10 Autoset For Her – either new or second-hand – as a way of moving the process of getting treatment along, then before you do that, you might call both the Thoracic unit at RBH and Blandford sleep clinic and ask them which brand they have standardised on.

And then you can make an informed decision.