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Hi Darth_Rita,

I'm glad you posted again. Often people from the UK ask an urgent, personal question, and when they don't get suitable advice right away, they tell themselves, oh that isn't a good source – and they don't come back. When all that's going on is that someone who has good info for them didn't see their posts until after a few days.

I know a fair bit about about treatment for sleep apnea, and I also know a fair bit about treatment for it in the UK. That's because I live in the UK, and I have sleep apnea. And because I used to be a medical journalist (altho I'm now retired. )

I've read all your posts, and there are a few bits of information I can give you – but I won't do that right this minute – it's 2 am here in Gloucestershire, and I'm about to go to bed.

If you look in again later today (Sunday), or the day after, I aim to put up some local info for you.

In the meantime, you can always use the Search function in the top right corner of the computer 'page'. If you type my 'handle' or 'user name' into the search box, you'll get a list of everything I've posted over the last five years. You may find some stuff relevant to you that way.

Darth_Rita wrote: ↑

Sat Dec 29, 2018 7:40 pm

...
Often things work differently in the UK simply by moving from one county to the next but I have friends all over England who have lost faith in their GP (general practitioners) and the service they have received from them. The problem is the NHS is severly underfunded and over managed despite what our government says so everything is done to targets and on a meagre budget. It is not the fault of the staff especially in hospitals as they do an extraordinary job given what little resources they have to do it with, but there just not enough money in the system for it to be remotely efficient so I guess things are very very different from the US.

The important thing is getting therapy. If you were a diabetic, your docs would show you how to determine how much insulin you need on your own. Many of us believe CPAP pressure titration should be the same. There are a lot of resources here and elsewhere on the web if you are interested in taking control with your current machine. I hope that Rick Blaine will also be able to give you more focused suggestions for the UK and that you and he will share what you discover with us. Best of luck, and happy new year!

Chris

Hi Darth_Rita,

Before I make a couple of suggestions, perhaps I can summarise.

1. Let's start with the home sleep-study and the diagnosis which came from it.

And let's also look at what came before the decision to have the sleep study.

My first question is: if you "slept like a log all night waking refreshed and ready to go," why do you need APAP?

You say your "snoring ... would wake my husband" But was that the only symptom? You didn't have daytime sleepiness, you weren't nodding off at the wheel or while watching televison? You weren't getting up in the morning feeling like death warmed up?

You were 'refreshed and ready to go'?

That comment is hard to understand – because that's With No Treatment.

Whereas, the sleep you say you're having With Treatment is markedly poor.

Someone not versed in sleep medicine might be forgiven for asking :'So why don't you go back to With No Treatment?'

2. Well, the answer is: that heavy snoring usually means something.

And that something is best looked at in a sleep-study. Otherwise, there's a risk of high blood pressure, stroke, atrial-fib, heart failure, circulatory hypertension (high blood pressure), pulmonary hypertension (lung congestion), and diabetes ...

And so they gave you a kit for an at-home sleep study. And ...

3. The diagnosis they gave you is – well, what?

At one point, you say, "My original diagnosis was mild OSA," and later that "the consultant clearly told me the study did not show any apneas but he was concerned about the oxygen saturations."

At another point, you say the letter to your GP, which you did get a copy of, says that you have an Epworth Sleepiness score of 3, your AHI was 26.4, and your oxygen desaturation index was 36.4 ... and that you have moderate OSA.

Which opinion is correct?

Just in case no one's told you, the standard classification in both the UK and elsewhere is:

An AHI from 0 to 5 is considered 'normal'. From 5 to 15 is 'mild to moderate'. From 15 to 30 is 'moderate to severe'. And 30 and above is 'severe'.

And the NHS offers treatment only to those with 15 or above.

Unless there are extenuating circumstances. Which is where the consultant's opinion comes in.

And I note that in both the consultant's remarks to you, and in the letter to the GP, the level of O2 sats is drawn attention to.

4. You also say that: "My sleep study was done at home on the hottest night of the year, and I ended up in the hottest room in the house so my husband's snoring and the heat were both preventing me getting to sleep."

And you yourself remark that that isn't a very representative sample.

5. What I think all of the above sez is: you need to do another sleep study. Not another at-home sleep study, but a different kind of sleep study.

IMHO, you are a prime candidate for an over-night sleep study in what's sometimes called a 'sleep lab'. In the NHS, only about 1 in 10 patients is evaluated in a sleep lab. And it tends to be only the more complicated or severe cases.

(In the US, that first and diagnostic sleep study is predominantly done via an over-night stay in a sleep lab – and it's a study that looks at more than the three or four parameters of the typical home study.)

Now, not every foundation trust hospital has a sleep lab – even if it does have a sleep-medicine department. But the staff at your current SMD could send you 'out of area' – by making what's called an 'extra contractual referral' – to another foundation trust hospital.

Alternatively, there are a number of sleep labs in the UK's private medicine sector - and the NHS could fund a session in one of those – in the same way as the NHS currently farms out MRI scans to independent set-ups when its own waiting list is backed up.

And as a third alternative, you could pay for a private sleep-lab session yourself.

6. I think a sleep-lab session is right for you because - even though the sleep-medicine department has been getting your data over the cellular phone link – a sleep-lab study looks at many more parameters.

It goes into breathing in more detail. It goes into what's called 'sleep architecture' – via EEG leads, they know when you're sleeping and not sleeping. They know if you're getting enough REM sleep. They can tell – via sensors and and infra-red video camera – how much you're moving about. And if you have restless leg syndrome, and so on. All of it useful information.

The thing is, right now, and in the NHS, you would have to push for it.

The best argument in favour is: that it is clinically necessary. Treatment isn't working for you. The AHI numbers may be good, but you are not rested.

And the aim of the sleep-lab study would be: to find out how to get you rested.

(The sleep lab techs could also look at optimising your O2 uptake. Although Julie is correct when she says that 88 is borderline for deficiency, and it may be that there isn't a big problem with your O2 sats. And that, if you get all the other parameters right – mask choice, mask fit, pressures – then the O2 bit will even out and normalize.)

7. Now we move on to the masks they gave you.

When I first went to the sleep-medicine department here in Gloucestershire several years ago, they tried a range of masks on me. They had masks from Fisher & Paykel, from Philips Respironics, from ResMed, and some German manufacturer whose name I don't remember.

What I understand from my most-recent check-up is that the department has now pretty much standadised on ResMed, in particular, on the F10 and the F20. And that the trying on a range of masks no longer happens.

(My guess is that ResMed offered a really attractive bulk-buying deal – and the department, being under financial pressure, said yes. And I note you remark on such pressures too.)

So the first question here is: did the sleep-medicine department you attend try you out on a nasal mask? (I think I already know, but you might confirm. )

I think you should put yourself in the place where you can try a couple of nasal masks. I know you said: "I can’t afford to buy one without some idea of whether it will work [or not]." But there is a way round that.

As well as supplying masks in bulk to the NHS, ResMed UK also sell direct to patients.

And they regularly have day clinics in Abingdon (and also out here in Bristol), where you can try on all of their range of masks – including nasal ones, and their previous best-seller, the Mirage Quattro.

There is no obligation to buy. And the staff are very helpful. And the price of mosts masks is in the £120 area. But by trying a mask on, with the machine running, you'll have a better idea of its suitability.

(I will add that currently ResMed UK are pushing their new 'memory foam' mouthpieces for the F20 - which, whatever their merits, have a much shorter replace cycle than their other masks. So a year's use is quite expensive. Their other mouthpieces do not have such a short replace cycle. You might find you have to politely say no thanks – but about this nasal mask ... )

The phone number for ResMed UK is: 0800 917 7071.

8. Mask fit. Whatever mask you do use, you may be making the mistake that many do at first – and that is tightening it up too much – in pursuit of nailing the leaks.

Many modern models of mask are designed to work like a hovercraft. The mouthpiece is designed to inflate and form an 'air cushion'. You have to find the right amount of strap tightness which allows the cushion to form and then fit against your face.

If I remember there's a piece here on the forum – 'Taming the Mirage Quattro' – which goes into the topic in more detail.

Hi Rick, thank you for such a comprehensive reply; sounds like you had a much better experience at your sleep centre.

I am sorry it's taken a while to get back to you I have had a particularly nasty bout of flu, so I haven't been near the computer for a while. That makes the third time this winter despite having flu jabs, I am not normally like this but I have had more respiratory problems since starting CPAP than I can ever recall I have had before.

OK to answer some of your questions, personally I don't think I should be on CPAP, well at least not based on a test that only involved around 1.5 - 2 hours actual sleep. As I have already said I was so sure they would say the sleep test was too short that it came as a complete shock when he said they did have enough data and that I needed to go on a machine.

Perhaps I was so full of disbelief that I just didn't take in what the consultant was telling me. However, I was sure that he had said it didn't show I had any Apnea's but it had shown I had a problem with my O2 levels fluctuating and I thought he had said that meant I had mild form of OSA. I agree the copy of the letter that I eventually received between him and my GP contradicted that but until I see him at the end of February I have no way of asking why. I am hoping at that time I can convince the consultant to do another sleep study, they have a study suite at the hospital so it should be possible. That is why I have been gathering data and keeping a record of everything that has happened since they put me on the Resmed.

As to why I don't simply go back to no treatment, that's simple enough I am afraid of losing my driving license.

Although semi retired I still teach and give classes so I am very much dependant of my ability to drive. When I got the results I was told to inform the DVLA so I did as told and I have recently received a letter back from them that saying while I can keep my license I must be reviewed every 3 years and the review shoud take into account whether I am complying with the treatment, they stipulate a minimum of 4 hours per night and I am already struggling with that because I cannot use CPAP while having coughing and sneezing fits or when I have a streaming cold or a none stop runny nose. It was bad enough when I woke up at 3 am with a mask full of blood after incuring a nose bleed (another first as I have never woken up with a nose bleed before) so I have to get this sorted before the next review.

To clarify what had led up to all this, Since 2003 I have had an underactive thyroid, I had originally gone to the GP because for months I had been exhibiting many of the symptoms associated with that, such as always feeling cold, an intolerance to cold in general, pins and needles and loss of feeling in my hands and feet, painful legs particularly at night which only responded to movement, feeling lack luster and washed out, weight gain, constipation, muscle cramps, lack of concentration etc and I thought it was my thyroid playing up because I had gone through the same sort of thing when my thyroid first stopped working.

Blood tests at the start of the year had shown I was both B12 and D3 deficient, so I had been prescribed an initial dose of 200 Mcg Cyanocobalmin(B12) daily and told to take 2000iu of vitamin D3 each day, I had also been prescribed Ropinirole for Restless leg Syndrome but it didn't agree with me so I had stopped taking it.

My GP said the more recent blood tests he had requested had shown that my B12 and D3 levels were now responding, and my T3 's and 4's were still within normal limits, so there was nothing else he could do regarding the Thyroid since in the UK they dose for Thyroid abnormalities according to blood test results rather than deal with the actual symptoms. As I was getting up to go, he asked if there was anything else and I casually said not unless you have a cure for early morning snoring and instead of the expected laugh he asked me more about that and suggested a referral to a sleep clinic.

When he asked I tried to be truthful and answered that unless I was ill it was rare for me to fall asleep during the day, or at a theatre, in front of the TV, or in a warm cosy chair and I have never fallen asleep at the wheel driving; though I did once pull into a service station and take a nap because I was too tired to continue after being at the wheel for almost 10 hours straight. I also mentioned that perhaps I had fallen asleep once or twice in the passenger seat of a car but that was only after working a very long day when I was exhibiting in London and been up since 3am. I also pointed out that I have nights when I simply don't get tired at all (or at least I did before going on CPAP) so spend the night in the living room watching films or reading but despite all that he said he had reason to believe I should be tested so I didn't argue instead I let him arrange the referral. On reflection seems to have been a mistake on my part but I had just told him I wasn't taking the Ropinirole he had prescribed so I didn't want it to appear that I was being a nuisance.

It was between six and eight weeks before I received a letter from the hospital telling me to phone to make an appointment and another 4 or so weeks before I could get through to the hospital and four more before I was actually seen by which time most of the problems I had thought were thyroid related has started to respond to the high doses of D3 and B12 and I starting to feel more invigorated than I had done in some time; I still had problems with the cold but everything else had either disappeared or was much improved. However, my 4:30 snore alarm was still waking my husband and I had the appointment so rather than let anyone down I kept it.

You asked about masks. I wasn't given any choice, I was told for snoring it had to be full face and the one they had to fit me was a F10 for her.
It was only after I had leakage probems with the F10 and went back to them a few times that they found a F20 though not the for her variety and sadly that one really cuts into my face as it did not come with the memory foam cushions that the resmed site said went with it for the 'Superior comfort and uncompromising seal'. I have tried using both and aside from the fact that I have leakage problems with the F10 I would rather use that because it does less damage to my face.

When I go back in February I will ask about the nasal masks as I very much doubt I will be given leave to stop using the machine before having a second sleep study and if it takes anthing like the time it took with the last one that it will be a few months before I get the results and another appointment so I think I will be stuck with this for at least another 6 months

Thanks for the info about Resmed day clinics I didn't know they did that. Apparently they don't have anything planned at the moment but I have given them my details and expressed an interest as I would love to be able to try on different types of masks, it would certainly take the guesswork out of this.

I will look for and read the piece on the Mirage Quattro, I have tried everything I can to ge the mask to fit without leaking but according to the sleep centre the problem isnt the mask but the size of my face, they keep telling me my chin is too small. I know I have a small face/head and the rest of it, it goes with my small feet and small hands etc so there isn't anything I can do about it. I need to wear an extra small crash helmet on our motor bike and other head gear also tends to be small or at most small/medium but my head is not so small that I have to revert to kids sizes, that only happens on my size 4 feet.
I tried the hovercraft approach and left the mask in the strap positions they gave at the hospital but the result was the minute I put my head on the pillow it started to leak and I got the red sad face icon on my machine. At first I tried tightening the straps just a little but that also resulted in leaks so I tried shortening them a bit more and I eventually reached a point where I could stop the leaks for most of the night but would still get periods during the night when it leaks. Don't get me wrong I have had nights when I have gone 6 hours without a leak, still wrecks my face but then the next night the same settings will cause massive leaks, I just dont know what I am doing wrong so I take a day off work and go back to the hospital and they put it back to the initial loose setting and I get home and it leaks - horribly.

Perhaps if I could sleep on my back it wouldn't be a problem but I am a front or side sleeper (my legs hurt when I sleep on my back) and a full face mask on a latex pillow when you have a small face just doesnt work as the air escapes at the sides of your mouth and around your chin the moment you start to relax so the leaks start. Again this doesnt usually start until I have been asleep for a couple of hours so the first I realise is when it either wakes me up blasting me with cold air or in the morning because I have slept through the leaks.

You know the stupid thing is, breathwise and sorefacewise I actually feel better when I get flu or a bad cold as that leads to coughing or sneezing fits so I can't use the machine and that inturn has been the only time I have managed to get a full and restful nights sleep since going on CPAP which tells me there is definetely something wrong somewhere. Don't get me wrong if it turns out that I really need the treatment I will find a way to make it work even if it means some sort of manidible device but at the moment the only things CPAP seems to be doing for me is stopping me get a good nights sleep, making my face red and painful, upsetting my stomach and leaving me with a nagging cough and a constant headache all of which seems wrong and a far cry from the talk of CPAP actually making me feel better.

Well I think I have answered all of your questions, I do appreciate your help and suggestions and I will certainly attend a resmed clinic when they announce one

Best regards Rita

Rita I am in the US not the UK. but if my doctors told me the problem was not the mask, it was my face, my immediate response would be, then fix my face.
I am clearly more aggressive than you but I get copies of all my tests and lab work.
I also recommend you arrive at all your doctor visits with a printed list of questions you would like answered and don't leave the room until they are all answered.

You mentioned that your min pressure was adjusted to 5, but your reports regularly show pressure below 5. I would check and adjust my own pressure settings every night to be sure they had not been modified by anyone. Most of us here take control of our machines and therapy and work with our doctors if they cooperate or we fire them.

I can't breathe with pressure below 6.

Hi again Rick

I don’t know if this helps but here are a few stats from my sleepyhead and Spo2 assist readings.

Since starting CPAP at the end of September I have used the Resmed on 82 nights during which time my average API recorded by the Resmed is 0.49.

The highest it reached was 2.37

Looking at the charts I can see the Resmed often records events when I still am wide awake and might simply be coughing, moving about or doing breathing exercises that involve holding my breath so they are not necessarily all reliable events.

If you do the math you’ll find there are 37 nights missing, this was when I was either working away from home or unwell, as I said it’s been a particularly bad year for colds, flu and viruses.

The API breakdown is as follows
Less than zero 20 nights
Above 0 and below 1 53 nights
Between 1 and 1.99 7 nights
2.06 1 night
2.37 1 night

As you can see these are all very low figures.

I bought and have used an Oximetre every night since the 15th Oct, during that time my lowest recorded SPO2 has been 85 but the average low reading on that particular night was 92.60 and the highest reading that night was 99.

Average time using Oximetre in an evening 7.97 hours
Average low SPO2 reading for the full period is 92.55
average number of Spo2 events for night has been 20
Lowest number of events during a night 4
Maximum no of events during a night 49;
which was on one particular night that involved nearly ten hours of being in bed when I had flu and my temperature was almost 103 so perhaps it isn’t surprising my oxygen levels were poor.
Even so that is still only 4 an hour so no where near the 15 an hour requirement for moderate OSAS.

In answer to the other health questions people have asked I am almost 68 years old, female, almost 5ft 1 tall, weigh 144lbs, Hike and cycle at the weekends.
I am asthmatic, have an under active thyroid, high cholesterol, diverticular disease, IBS, migraine, RLS, and vitamin deficiencies, but on the upside after being prediabetic for 10 years I have recently been told my sugar levels have gone back to normal. When I go swimming I do one to two miles at the weekend we cycle 100 miles and wh3n we hike we usually spend the day up places like Kinder Scout so I am still pretty active for my age.

Oh Bwexler I wish, but the NHS in the UK and the system you have in the states are very different,
The doctors are the ones in control over here not the patients,
Unless you are fairly wealthy and can afford to go private (which most of us can’t ) you do not hire and fire a specialist instead you get the one you are given, you can change your General practitioner but it’s not as easy as that sounds since you have to find one in your area who has space to take you on and is willing to do so and then you must provide a very good reason for wanting to make the change and complaining about one doctor can make others not want to deal with you.
If you are referred to a specialist you might be lucky and find your visit will be in the same county (think small state) as the one you live in but it could just as easily be miles away.
When you arrive for your appointment often it is not the consultant who deals with you but one of his or her registrars, I had cancer in 1980 and I only saw the Consultant once and that was to confirm I had the disease the rest of the time I only saw his registrars.
You do not choose a timed appointment once you have been referred instead it is allocated to you you take it or go back to the bottom of the waiting list.
The average waiting time in the Uk for an appointment is 10 weeks unless they suspect you may have cancer then it’s shorter, we are supposed to have a right to see a consultant within 18 weeks or 2 weeks for cancer but there have been so many budget cuts those targets are often not met.
If you book an appointment to see you General practitioner/Primary Care Doctor you get 10 minutes and 1 problem, you can book a double appointment but many surgeries frown on you doing that.
When I was 29 I went to see my doctor because I was having problems with my periods and felt I needed a smear test. I was told in no uncertain terms to go away and stop wasting his time and shown to the door, I left feeling thoroughly embarrassed and distressed and had it have not been for my then husband getting me an appointment with his doctor at the same surgery I would be dead by now as that led to a series of tests and was when they subsequently discovered I had a carcinoma in situ, as I said things are different over here.

Hi Rick

Read the taming the mirage quattro blog, very interesting that isn’t the way they told me to fit the mask at the sleep centre. I was told to do it sitting up.

Anyway I tried it last night, carefully followed the instructions and I have to say the mask felt a lot better on my face and everything seemed fine when I dropped off to sleep. However I woke up being blasted with cold air 4 hours later and the red sad face was displayed on my Resmed with a message telling me I had leaked far too much and needed to speak to an advisor which would mean taking another day off to go to the centre to talk to a nurse.

I am reluctant to do that because it can achieve nothing more than a repeat of the original fitting instructions which would be an expensive waste of my time. But I can keep that option open for when I have more free time.

In the meantime I am guessing it was something that I did wrong so I will re read everything and keep trying the tips in the Mirage Quattro post and see if I can do a better job myself.

Thanks for that

I don't know if I have done this right as its my first attempt at posting an image but if I did it should show last nights Sleepyhead data
so you can see what I meant about the leaks.

Finally a bit of irony

I was referred for the sleep test not becuase of being sleepy but because while I don't snore for much of the night, in the early hours of the morning I have been able to snore loud enough to wake my husband.

Well since we increased the cycling and I lost more weight, my early morning snoring has dropped to a light purr or stopped altogether which would now appear to be the norm as it happens whether I use the Resmed or not as I have been using a recording device to check.

However, this removal of the initial problem hasn't affected my husband at all because he suffers from COPD and couldn't take the cold blasts of air that come from my mask and piping when he was trying to sleep so he moved into the spare room soon after I was put on CPAP. The irony is, while I miss his presence in our bed, if he had done that in the first place I would never have mentioned snoring to the doctor so none of this would have happened.

Quick Update

Spoke to Resmed, they suggested I might get on better with the new F30 mask but said see what the doctor says about being retested first since after looking at my results and comments they also feel I am a prime candidate for retesting.

So thanks for all your suggestions especially Rick.

Best regards Rita

PS they did say one thing that might help others. While I wash my mask daily and the pipes at the weeked, being afraid to damage my mask I had only been using a few drops of very gentle cleaners with a touch of anti bac in them but apparently that isnt enough to remove the greasefrom the marks and parts so they said I should switch to using the original Fairy liquid, with no added scents or moisturisers and use as much as you would use for your normal washing up. Wash the mask daily and the pipes and mask strapping every week as it helps they retain their shape. I had only washed the straps once as it takes ages for them to dry so who'de have thought.

Ok this info will no doubt already be on here somewhere but I hadn't found it so if also putting it here helps someone else great.