Recently privately diagnosed,...in the UK but unsure of next steps.

[Trybius]

Hi,

I've had symptoms of sleep apnoea for a while now (excessive tiredness, drug resistant high blood pressure, hypertensive reaction to exercise, frequent waking etc), so decided to get it followed up with my doctor.
I'm based in the UK, so the NHS waiting list is in excess of 6 months in my area, so I decided to go ahead and order a private test through Philips, using their Alice machine.

I've had the results today, and it came back with an AHI of 29.7, and a diagnosis of Obstructive sleep apnoea.
Rather than wait for several more months before being able to discuss further with a specialist, I'm considering purchasing an APAP machine and seeing how I get on.
The machine I'm considering is the "DreamStation Auto CPAP Machine" with a "DreamWear Nasal CPAP Mask", along with the humidifier and heated pipe.

I have a couple of questions before I go ahead with the purchase.

My first question is about the summary of my results from Philips :

SleepAp.png (101.97 KiB) Viewed 1569 times

In this I can see 20 cases of Central Apneas, 40 cases of Obstructive Apneas, but the majority of cases (170) were just listed as Hypopneas. Is this expected for standard obstructive apnoea?
I've seen various descriptions of central/obstructive/complex apnoea, and they seem to require different treatment profiles. From these stats here, would I be suited for a standard APAP machine?

Is there any other consideration before using an APAP machine? I'm happy to attend the follow up to have my throat checked for possible obstruction, but in the mean time would like to purchase a machine.

The second question is, if suitable for my condition, is the DreamStation Auto the best choice? Are there any other products that stand head and shoulders above it in features / functionality, or may be better suited for my specific case?

Sorry for the long post, but as I'm sure everyone was at their diagnosis, I'm eager to try and solve this and start getting a good nights sleep.

[Pugsy]

You aren't having enough central apneas at this point to warrant a special machine that can address both the central apneas and the obstructive events which are the obstructive apneas and the hyponeas.

Plus, sometimes centrals will reduce a bit just with cpap use.

I actually prefer the ResMed brand myself. I have used both ResMed and Respironics auto adjusting machines and I prefer ResMed.
The auto adjusting algorithm is superior IMHO and it's a bit quieter overall.
So the ResMed AirSense 10 AutoSet or the AutoSet for Her model is what I would recommend.
The equivalent in the Respironics line is the DreamStation Auto CPAP which is a bit less expensive and if money is really tight...it's not a bad machine. It's just that I think ResMed is a little better.

We don't know what pressure you are going to end up needing to use...and the exhale relief available on the ResMed is definitely better.

Hyponeas are just OAs that haven't quite grown up to meet the criteria for the OA label.
OA...80 to 100 % reduction in air flow that lasts at least 10 seconds
Hyponeas...40 to 79% reduction in air flow that lasts at least 10 seconds....once it hits 80% it gets the OA flag. So yes it is most definitely a significant part of the OSA diagnosis even though it isn't called OA.

[Miss Emerita]

Hello, Trybius, and welcome. I want to second Pugsy's recommendation.

Those hypopneas, while they aren't full-blown obstructive apneas, can really trash your sleep and need to be well addressed. The PR machine has a fairly conservative algorithm that wants to get back to your minimum pressure as soon as possible. Perhaps partly for that reason, perhaps partly because of the lack of true EPR, the ResMed Airsense 10 Autoset (or same, For Her) is certainly your better bet for treating hypopneas without a higher minimum pressure than you really need.

I've tried both machines, and like a lot of people, I felt as though the PR machine was trying to hurry me along into my next inhalation without letting me exhale fully. Its algorithm for changing pressures between inhalation and exhalation bases the timing on your most recent few breaths. By contrast, the ResMed machine detects the moment you shift from one action to the other and feels much more natural, at least to many of us.

I've seen a fair number of people on this forum do quite well buying their own machines and arriving at optimal settings with a little help from the experts here. You will also want to download the Oscar software (see below) onto a laptop or desktop so you can view and post your data. Oscar displays a wealth of information in a very usable form and really helps people to dial their settings in. You'll need an SD card in the machine -- buy one if one doesn't come with -- and a way to read it. If your computer doesn't have the right kind of slot, you can buy an inexpensive reader and plug it into a USB port.

Let us know when you get the machine. There's a fair amount of help we can offer you as you get started, even without Oscar. Come back to this same thread so everything is available in the same place.

Congratulation on taking your treatment into your own hands!

[rick blaine]

Hi Trybius,

You aren't the first person in the UK to 'go private' because of a long NHS waiting-time. The reality is that, over the last 10 years, GPs have seen that modern treatment for OSA is both effective and cost effective. So they've been referring more and more people.

To show you how much things have changed, ten years ago I was seen for a sleep-study within three weeks of my GP referring me. And I would have been issued with a machine the day I took the sleep-study kit back if I hadn't already had my own machine.

Anyhoo, you've been diagnosed, and you clearly have OSA – and by 'clearly' I mean the NHS would say so too – they treat at an AHI of 15 and above.

If I may offer a few suggestions:

Even though you've 'gone private' this far and intend to go further, there's an argument for your GP still requesting an appointment with the NHS – even if it's six months hence – and for you going along to it.

Ie, what I'm saying is: you can have the best of both worlds.

If the machine you buy is one the NHS would approve of – and if new, both the PR range and ResMed range are – then the sleep-medicine department should have no reason not to accept you as a patient.

And: there are several advantages to this 'having one foot in each camp'. The two most significant are:

a. There's an annual follow up, with free replacement of mask, or key mask parts. With masks costing on average £120, this is not to be sneezed at.

b. The sleep-medicine department will do the 'paperwork' with the DVLA.

The law now says that both you and your doctor are obliged to inform the DVLA that you have OSA*. And for you not to drive until a doctor tells the Agency that treatment has brought you 'back within the normal range'.

* It is my understanding that the PR Alice 'program' has to inform your GP of the results of the sleep study they did on you.

It is also my understanding that, even though you did a sleep study with PR, you are not obliged to buy a machine from PR.

Now, if you do buy the ResMed machine – and I agree it is currently 'the better buy' – and if you do ask your GP to refer you to a sleep-medicine department – then between you, do a little digging – and choose a SMD which has standardised on ResMed machines, and not on PR machines.

That way, the sleep-medicine department will have ResMed's proprietary software, and not PR's proprietary software. And they will be able to read your data.

Both SleepyHead and OSCAR are shareware. Which means that legally neither is used by the NHS to evaluate patients. They have to use the proprietary software.

And I echo the suggestion that you can get advice on settings here. Pugsy in particular is an unrivalled source of advice. IMHO, she knows more than many a UK medical consultant.

[TheClerk]

I actually prefer the ResMed brand myself. I have used both ResMed and Respironics auto adjusting machines and I prefer ResMed.
The auto adjusting algorithm is superior IMHO and it's a bit quieter overall.

I've tried both machines, and like a lot of people, I felt as though the PR machine was trying to hurry me along into my next inhalation without letting me exhale fully. Its algorithm for changing pressures between inhalation and exhalation bases the timing on your most recent few breaths. By contrast, the ResMed machine detects the moment you shift from one action to the other and feels much more natural, at least to many of us.

I took possession of my equipment exactly 1 month ago and. I ended up picking the resmed exactly because of these comments I had already read about and said so to my RT. She told me that the Philips Respironics algorythm had recently been updated and that the A-Flex was now more in line with resmed's EPR . She told me that, at this point, they were almost identical.

I can't confirm or deny this but, maybe someone could?

[Pugsy]

She told me that the Philips Respironics algorythm had recently been updated and that the A-Flex was now more in line with resmed's EPR . She told me that, at this point, they were almost identical.

I can't confirm or deny this but, maybe someone could?

Well......from the DreamStation reports I am seeing I don't see it being like ResMed and I think she probably lied to you.
Respironics hasn't changed their exhale relief in over 12 years. I would think if they made such a change it would be big news and there's nothing about it on their website.

[TheClerk]

She told me that the Philips Respironics algorythm had recently been updated and that the A-Flex was now more in line with resmed's EPR . She told me that, at this point, they were almost identical.

I can't confirm or deny this but, maybe someone could?

Well......from the DreamStation reports I am seeing I don't see it being like ResMed and I think she probably lied to you.
Respironics hasn't changed their exhale relief in over 12 years. I would think if they made such a change it would be big news and there's nothing about it on their website.

Ok, thanks; I was just throwing that out there for someone like you to put it to rest if needed. I don't think she knowingly lied and she didn't pressure me to choose it over the Resmed. I thought she meant the change was only on newer machine but, it probably couldve been applied to older ones.

[Pugsy]

Ok, thanks; I was just throwing that out there for someone like you to put it to rest if needed. I don't think she knowingly lied and she didn't pressure me to choose it over the Resmed. I thought she meant the change was only on newer machine but, it probably couldve been applied to older ones.

I haven't seen any evidence of any change in the Flex way of doing things on new DreamStation machines...at least on the reports.
Now I haven't had a chance to try them either but I seriously doubt they changed Flex to be like ResMed. They think Flex is better than EPR and have always thought that.

The person you talked to might simply be echoing what she was told or believes it or just doesn't understand or knowingly lied.
I know we like to trust our providers but the cold hard fact of life is they don't walk on water and they don't know everything and sometimes they do give us bald face lies.

Now if/when Respironics comes out with a newer model...maybe it will reflect a change but I seriously doubt it.

For now when I see a Respironics DreamStation report with Flex set to 3 and I see only a 2 cm drop in pressure I know it isn't like ResMed's EPR drop. The Flex way of doing things hasn't changed.

I have seen nothing on any of the reports that tells me that this has changed.

[TheClerk]

Thanks for the clarification

[Julie]

To 'The Clerk' - are you the OP (Trybius) or not?

[Trybius]

Not sure if that was a rhetorical question, but we are not the same person!

Thanks to everyone for the great replies. I've gone ahead and ordered an AirSense (well I'm waiting for the 20% black Friday discount on the resmed website) along with humidifier, heated pipe and a P10 Nasal Pillow.
I'm still on the waiting list for the NHS appointment, so I will definitely keep on board with that, even purchasing private.

I'm sure I'll be posting here again soon once the kit has arrived and I'm looking blankly at it

[Pugsy]

You will want this. Give you something to read while you wait.

https://www.respshop.com/manuals/ResMed ... %20her.pdf

[JLROhio]

I don't want to turn this into a political thing - but as an American with a new president possibly coming in Jan who wants to nationalize health care - hearing of others waiting 6+ months for a simple sleep study is craziness! Thank-God for privatized health care! I could only imagine what it's like over there for someone with a real heart condition or cancer of some sort!

Again, I didn't want to make this political - just had to reply to the 6-month wait comment for something that could save one's life!

[Pugsy]

Again, I didn't want to make this political

Then please don't. You could easily have made your comment about the wait times over in the UK without bringing up our politics but you just had to get your dig in didn't you?

Besides...you need to listen closer to the platform ideas...No one has brought up totally nationalized health with the new administration. They have specifically said they do NOT want to eliminate the private option. This may come as a surprise to you but not everyone can afford that private option. Especially if they aren't working now.

That said...no more derailing of this thread please with our politics. It doesn't help the OP at all and this thread is about him and not us.

Not everything in the UK has these sort of wait times. If emergency care is needed...people get it straight away. If they have a heart attack they get immediate care. If they get cancer they get immediate care....all under the NHS system.
And in the UK there is also a well established private care option if people want to use it.

[Julie]

And for the record, ditto to Pugsy's last couple of lines for Canada.