Starting over, advice needed please

[Hannibal 2]

I have been on a CPAP machine in the UK for just over 2.5 years now, but it wasn't until I joined this forum a little while back that I realised, I know very little about the subject. Treatment and support on the National Health Service in my region has been pretty poor to be honest and equipment supplied is basic CPAP fixed pressure, no data, and no humidifier.

I'm impressed with how technically savvy many forum members are here and to be honest, I feel I don't understand a lot of what is being discussed.

I need to take matters into my own hands now but there is a big learning curve for me, so I'm hoping you guys can be patient and help steer me in the right direction. Please treat me like a complete newbie!

First up, I am looking at buying my own machine, the hospital are fine with this, will still see me as an outpatient but will not be allowed to change any settings etc on my behalf, but hopefully I can learn to manage this myself.

I am thinking of getting a ResMed AirSense 10 Autoset, partly because the hospital use ResMed software and can also look at my data. Good machine? Easy to set up and use? Is a built in humidifier a good idea? Support good?

I have read that SleepyHead is a much better software than ResMed but will I be able to get to grips with it, and can I still get readable data for the hospital to look at?

I was thinking of using the 3 Months ResMed support included with the purchase and see how I get on before switching to Sleepyhead.

Any thoughts, opinions questions or advice to get this newbie started would be greatly appreciated.

[OkyDoky]

You can download both ResScan (ResMed Software) and Sleepyhead on your computer. You can use both or choose which is easier for you to read and understand. For me it is SleepyHead but it doesn't hurt to have both as your health care providers will most likely use ResScan.

[Pugsy]

I am thinking of getting a ResMed AirSense 10 Autoset, partly because the hospital use ResMed software and can also look at my data. Good machine? Easy to set up and use? Is a built in humidifier a good idea? Support good?

Yes to all your questions. Great machine. Get the heated hose...it allows for greater customization of the humidity....more consistent along with preventing condensation in the hose or mask....and it doesn't have to be so warm that you feel like you are in a sauna.
Super easy to setup. Take a peek at the provider manual.
https://sleep.tnet.com/home/files/resme ... -guide.pdf

I have read that SleepyHead is a much better software than ResMed but will I be able to get to grips with it, and can I still get readable data for the hospital to look at?

Yes, it's fairly easy to use and using it doesn't affect anyone's ability to use ResScan (ResMed's software). It doesn't do anything to the data on the SD card and that's what both software programs use.
You can even use ResScan too...in addition to SleepyHead if you wish.

I was thinking of using the 3 Months ResMed support included with the purchase and see how I get on before switching to Sleepyhead.

You can use both software programs if you wish. I use both SleepyHead and ResScan. It's not an either/or choice. Nothing in either one prohibits you from using the other. You just have to know where to find ResScan...and we know where to look.

[Hannibal 2]

Thank you both, very reassuring!

Yes the model I'm looking at includes the heated hose.
I shall more than likely go ahead and buy this, just waiting for my consultant's authorisation letter to come through.

[poppi2]

.... I am thinking of getting a ResMed AirSense 10 Autoset, ....

Might as well get the Autoset "For Her" model. It has an additional treatment algorithm. I am currently trying the For Her treatment selection, just because. Earl

[Hannibal 2]

.... I am thinking of getting a ResMed AirSense 10 Autoset, ....

Might as well get the Autoset "For Her" model. It has an additional treatment algorithm. I am currently trying the For Her treatment selection, just because. Earl

I was wondering why ResMed made machines for 'Her', surely they wouldn't add this extra algorithm if it wasn't only relevant to females, would they?

[Pugsy]

I was wondering why ResMed made machines for 'Her', surely they wouldn't add this extra algorithm if it wasn't only relevant to females, would they?

The "new" for her algorithm is more like the old algorithm than it is really new. It's less aggressive and has some limitations on how it responds and hence the "gentler and marketed towards women because someone told them women needed gentler.
Would it be possible that the male of the species could also maybe end up doing better with "kinder gentler"...sure it is possible.
Maybe guys aren't supposed to need kinder gentler because they are tough macho guys.
Maybe it goes along with skinny ass little bitty women aren't supposed to get OSA...but we do.
Lots of misguided stereotypes out there. I guess the ResMed company has their share too.

ResMed never really came out and called the for her algorithm as something for UARS treatment...but they hinted at it and I think that they also thought it was mainly women who had UARS.

There's going to be some women who do better, for whatever reason, with the "new for her" algorithm but it's not limited to just some women...there's probably some men out there as well. How many? I have no idea but the macho guys aren't real keen on using a machine with flowers on it despite the flowers not being seen with the lights out.

It's sort of like all the masks that say "for Her" on them....and there's nothing all that different except we get the color pink on stuff and maybe smaller something. Did they forget the male of the species that are of the small stature ...or the fact that we have a lot of women out there well over 6 ft?
Manufacturers want to make it look like they are trying to include women when in reality they aren't doing all that much especially for us.

All that said...I have always said "get the for Her model AirSense 10 AutoSet if at all possible no matter if you are male or female"....if the money is the same. That "new" algorithm might be useful...and it might not but I always say that it is best to have something and not need it than need it and not have it. That goes for various algorithms too.
This only pertains to the AirSense 10 for Her model...it doesn't pertain to the ResMed S9 for her model...there was no special algorithm in the S9 model marketed for Her...in that god awful pink which was originally supposed to be more of a breast cancer awareness thing.

[rick blaine]

Hi Hannibal 2,

As I've said before, treatment in the NHS - for all sorts of conditions, including sleep apnea - varies across the UK. And this is especially true in the Greater London area. With 20 teaching hospitals and a catchment of 12 million people, it's what anyone might reasonably expect.

You don't say which hospital sleep service department you've been attending, but we've had people from the UK on this forum whose experience is quite different from yours. And different in a good way.

Some of it is down to budgets. Some of it is down to the bulk-buying deals hospital trusts have done with the two major suppliers - Philips Respironics UK and ResMed UK. And some of it is down to technical advances permitting a change in policy.

For example, several of the newest ResMed machines come with built-in mobile-phone-network hook-up. This allows the hospital to monitor you without you having to come in for an appointment. And based on the results your doctors and specialist nurses see, they can change pressures on your machine over that cell-phone link.

Means they can process more people in the same time period.

Another example, here in Gloucestershire, where I live: several years ago the sleep service department standardized on the Philips Respironics 451 - a fixed-pressure machine - because, I understand, if they bought a thousand units at a time, they got them for £250 per unit. The PR 551 auto was £499 retail.

And when I first went to them as a patient six years ago, standard treatment did not include a humidifier. If you wanted that 'luxury', you had to buy it yourself.

Today, with the newer Dreamstation machine out, and it having the humidifier built in, Philips Respironics have moved to liquidate its stock (ie, turn it back into money) and make room in its warehouse by offering the add-on humidifier for the 451 to Gloucester Royal at £50 per unit. And now every patient in this area gets one.

So ... you are where you are. And the machine you were issued with must have been bulk-purchased a long time ago if it doesn't even have an SD data card. How does the sleep service department know how you're doing at your annual follow-up?

Anyway, there are all sorts of reasons for having your own machine - but rather than getting into those, let me get on with some practical stuff.

1. You mention needing to wait for a letter from your consultant (US, attending) before you can buy a machine.

Actually, any one of a number of people in the sleep service department can authorise it - sleep physiologist, senior specialist nurse, 'junior' doctor. And if not them, your own GP can do it.

I don't know how ResMed do authorisation, but Philips Respironics have a prescription form which you can download from their UK website. And lately, they've started accepting 'electronic signatures'. So you might ask ResMed UK if they're now doing the same.

2. ResMed UK have a club you can join. If you become a member, you get a 5 per cent discount on most purchases, and they will e-mail you details of their for-patients events and of their related products. And they do regular try-out clinics at their place in Abingdon. You might call them up and tell them you're thinking of buying a machine, and get yourself invited along. Their number (dialing from within the UK) is: 0800 907 7071.

3. Since you are officially a patient, you don't have to pay VAT (UK sales tax) on any health supplies or equipment. Ask ResMed for the forms if they don't mention it. But usually, they will.

4. I'm surprised that your sleep service department won't set the pressures on any patient-bought machine - won't even touch it.

The hospital's lawyers must have really stuck a bug up their arse. "We don't know where this machine's come from, it could be faulty, it could be harmful ... we'd be at risk ... we'd be vicariously liable," etc, etc.

The staff in my local department aren't so precious, and would dive straight into the clinician's area on my self-bought machine - if I hadn't already made the necessary changes.

BUT ... at the very least, your sleep service department must have done a home sleep-study on you, so they have a record of (a) your average pressure, and (b) your '90-per-cent pressure' (the pressure you were at, or under, for 90 per cent of the time, on the study).

And I can't see any reason why they can't give you those numbers. That doesn't make them liable to anything. So ask.

5. As to setting pressures yourself, I'll keep it short. APAP machines seem to work best for most people if you set the minimum pressure to between 0.5 cm to 2.0 cm below your average pressure.

And to begin with, leave the top end at the machine's maximum - which is 20 cm.

6. And then ... don't go chasing numbers. With any change you make, give it three nights - a whole week, even - to get an average sense of what that change has brung.

One night on its own may not be typical. So get a few nights' data and evaluate them before making another change.

And you can always ask for further advice here.

[palerider]

I was wondering why ResMed made machines for 'Her', surely they wouldn't add this extra algorithm if it wasn't only relevant to females, would they?

The "new" for her algorithm is more like the old algorithm than it is really new. It's less aggressive and has some limitations on how it responds and hence the "gentler and marketed towards women because someone told them women needed gentler.

the biggest plus, in my mind, of the 'for her' algo, is that it will raise the minimum if you keep having apneas, so it's got an element of autotitration in it...

unfortunately, it doesn't remember that from session to session... if they'd add that, they could have an autotune algo... and get rid of titration studies for the most part (and sleep doctors)

[Hannibal 2]

I was wondering why ResMed made machines for 'Her', surely they wouldn't add this extra algorithm if it wasn't only relevant to females, would they?

The "new" for her algorithm is more like the old algorithm than it is really new. It's less aggressive and has some limitations on how it responds and hence the "gentler and marketed towards women because someone told them women needed gentler.
Would it be possible that the male of the species could also maybe end up doing better with "kinder gentler"...sure it is possible.
Maybe guys aren't supposed to need kinder gentler because they are tough macho guys. ............

Good points well made Pugsy, I certainly don't feel I have to be a macho guy when buying a machine, if it has more functionality that may or may not work for me I really don't mind how girly it looks. The UK website isn't loading a price for this model at the moment but I'm sure there won't be much difference, so will definitely be considering.

[Hannibal 2]

Hi Hannibal 2,

As I've said before, treatment in the NHS - for all sorts of conditions, including sleep apnea - varies across the UK. And this is especially true in the Greater London area. With 20 teaching hospitals and a catchment of 12 million people, it's what anyone might reasonably expect...........

Rick,

This is such a helpful informative post on so many levels, thank you for taking the time, I really do appreciate it and there is a lot here that I will use. You have even preemptively answered questions that I knew I was going to ask at some point.

Yes I've heard that the NHS varies a lot from region to region, it seems that I drew the short straw! Harefield as you're interested. Of course I knew little about OSA and CPAP when diagnosed and just trusted the hospital to look after me.

So if it hadn't been for my partner occasionally noticing things when she couldn't sleep, there would have been very little for me to report back to the hospital. I was having apneas, the pressure needed to be increased, the hospital would give me an APAP to use for one night and then call me back a week later to increase the CPAP pressure. How long these events had been going on is anyone's guess!

I was told I was a nose breather at the start and given a nasal mask, 2 years later my partner notices the air was coming out of my mouth, I reported back and got a FF Mask but I'm not sure if I was a mouth breather from the start or if I changed to being one later.

I started to seriously doubt the effectiveness of my treatment and the hospital's capability of supporting me, so this is why I'm here looking to learn what I can to take care of myself.

[Hannibal 2]

I was wondering why ResMed made machines for 'Her', surely they wouldn't add this extra algorithm if it wasn't only relevant to females, would they?

The "new" for her algorithm is more like the old algorithm than it is really new. It's less aggressive and has some limitations on how it responds and hence the "gentler and marketed towards women because someone told them women needed gentler.

the biggest plus, in my mind, of the 'for her' algo, is that it will raise the minimum if you keep having apneas, so it's got an element of autotitration in it...

unfortunately, it doesn't remember that from session to session... if they'd add that, they could have an autotune algo... and get rid of titration studies for the most part (and sleep doctors)

Can you define what a titration study is? My experience is being loaned an APAP machine for one night so that the hospital can read the data - doesn't seem very comprehensive to me.

[Okie bipap]

A titration study is an in lab sleep study similar to the normal sleep study. Since you have already been diagnosed with sleep apnea, the entire night is spent trying to find the optimum pressure for your treatment. Sometimes, the titration study is centered around bipap pressures. My wife has had both a regular titration study where they could not find an optimum pressure and a bipap titration study. We currently awaiting the results of the last study. In my case, I had a regular split night study where they both an apnea determination and titration study during the same night. I then had a bipap titration study before they finally prescribed an automatic bipap machine. They could not find a single pressure that worked for me, and due to the high pressure I needed, I needed a bipap machine.

[Hannibal 2]

A titration study is an in lab sleep study similar to the normal sleep study. Since you have already been diagnosed with sleep apnea, the entire night is spent trying to find the optimum pressure for your treatment. Sometimes, the titration study is centered around bipap pressures. My wife has had both a regular titration study where they could not find an optimum pressure and a bipap titration study. We currently awaiting the results of the last study. In my case, I had a regular split night study where they both an apnea determination and titration study during the same night. I then had a bipap titration study before they finally prescribed an automatic bipap machine. They could not find a single pressure that worked for me, and due to the high pressure I needed, I needed a bipap machine.

I've never had an in lab sleep study, even my initial diagnosis was based on equipment (sensors etc) I bought home, used over night and returned it to the hospital for analysis. Subsequent titration has just been using a loaned APAP machine overnight and returning it to the hospital.

[hillbilly1979]

I am glad you found this community. I was in the same boat. I was lost and it didn't seem like I was ever going to get relief. This forum helped me get to a point of regular therapy and through their assistance, I ended up buying a mask which has made my therapy so much more comfortable. Good luck. I also use the Sleepyhead software. It is a little difficult to read sometimes for me as well, but the community here is extremely helpful with that as well.


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