Stubborn family member

[ChrisM]

No problems at all. When I first contacted the DVLA, after my initial night at Peterborough, they asked if I had received a diagnosis. I answered, no, just a referral. They told me to contact them again after my next sleep study.

This I did, but by then, I had a CPAP. DVLA wrote to me requesting a letter from my consultant, which Papworth provided. DVLA wrote back to me saying I was permitted to drive, and reminded me to also inform my insurance company.

[don logan]

Thought not, i wish i could get that across to the person i posted about, they're going about this in the most complicated, expensive and unnecessary way but it's the only way they'll try to sort it out.

Anyway, they've got their rental APAP now. It's a BMC Resmart Auto CPAP System:

http://www.eu-pap.co.uk/resmart-auto-cpap-system.html

As expected with someone that's had no sleep study and not had the machine setup properly for them, they've not got a clue what to do with it and the mask does not fit properly, the machine was supplied with a cheap one and it's useless.

I'm going to get them a mask, how do you size them up before ordering? And does anyone have any advice on which full face to go for? I'm prepared to spend the money on getting the best one as i really want this to work for them.

So, they have this machine and don't know what to do with it. It's switched on, and just blows air at a continuous rate. It doesn't change when you breathe/obstruct/take the mask off. We found this PDF manual online and have looked at playing with the settings. We put it on to titrate mode and the person has tried it for a night and got annoyed with it and ended up taking it off.

I know there's no point in even trying if you've not got the correct mask, so once i've got the the right one, does anyone have any advice on how we can begin to get this machine setup for them? I'm assuming we want it to be on Titrate mode? Would it be an idea to start at a low level and work our way up until we're getting results? I'd like to add that this persons condition is pretty severe, they'll fall asleep whilst talking to you, will be out cold within minutes of sitting down on the setee and the snoring is very loud and laboured.

Also, the machine was supplied without a 9 pin data lead for the PC and no software, so any idea what we can do about that? Can it be downloaded from anywhere?

I understand that it's a massive case of trial and error in this case, but they simply won't have it done the conventional way with a sleep study, so it's this or nothing. And again, please no 'Well what do you expect if you're doing it yourself/Are you a healthcare professional/You're an idiot' type replies, i've tried all reasoning with said family member to get a sleep study done and it's like banging my head against a brick wall.

Thanks in advance.

[don logan]

Thought not, i wish i could get that across to the person i posted about, they're going about this in the most complicated, expensive and unnecessary way but it's the only way they'll try to sort it out.

Anyway, they've got their rental APAP now. It's a BMC Resmart Auto CPAP System:

<Won't let me post a link, but machine is easily Googled>

As expected with someone that's had no sleep study and not had the machine setup properly for them, they've not got a clue what to do with it and the mask does not fit properly, the machine was supplied with a cheap one and it's useless.

I'm going to get them a mask, how do you size them up before ordering? And does anyone have any advice on which full face to go for? I'm prepared to spend the money on getting the best one as i really want this to work for them.

So, they have this machine and don't know what to do with it. It's switched on, and just blows air at a continuous rate. It doesn't change when you breathe/obstruct/take the mask off. We found this PDF manual online and have looked at playing with the settings. We put it on to titrate mode and the person has tried it for a night and got annoyed with it and ended up taking it off.

I know there's no point in even trying if you've not got the correct mask, so once i've got the the right one, does anyone have any advice on how we can begin to get this machine set up for them? I'm assuming we want it to be on Titrate mode? Would it be an idea to start at a low level and work our way up until we're getting results? I'd like to add that this persons condition is pretty severe; they'll fall asleep whilst talking to you, will be out cold within minutes of sitting down on the setee and the snoring is very loud and laboured. Horrible to watch.

Also, the machine was supplied without a 9 pin data lead for the PC and no software, so any idea what we can do about that? Can it be downloaded from anywhere?

I understand that it's a massive case of trial and error in this case, but they simply won't have it done the conventional way with a sleep study, so it's this or nothing. And again, please no 'Well what do you expect if you're doing it yourself/Are you a healthcare professional/You're an idiot' type replies, i've tried all reasoning with said family member to get a sleep study done and it's like banging my head against a brick wall.

Thanks in advance.

[ChrisM]

I don't think I need say how unnecessarily difficult your family member is making this.

The following is just my opinion. I am not a CPAP technician, nor do I play one in a TV show.

Regarding the machine. I would suggest setting the mode to Auto-CPAP, rather than Titrate.

It looks like your model also has an Auto-on setting, which will turn the machine on and off automatically, when the mask is worn/removed. Long term, this is convenient, but I suggest until your family member is used to the machine, you stick to turning it on and off manually.

It may be worth using the Ramp setting, which means that the pressure is low for a set period of time, and then slowly increases to what is needed. This is useful, in that it gives you a low-pressure period for falling asleep. The machine should allow you to set the Ramp pressure and time period.

Regarding the mask: in my opinion, there is no "best" mask. The best mask is the one that works for you. For example, for years I have been using the cheapest basic mask available, rather than the more expensive gel masks, simply because it worked for me. It really does mean trying a few, and doing this on your own, without clinicians, this could be expensive, with no guarantee of success.

Before spending money on new masks, I suggest you first persevere with the existing mask, experimenting with the tightness of the headgear - not too loose, not too tight. This is best done *not* at night, when you are desparate to get sleep, but make a time during the day when you can lie down for an hour or so, experiment, while listening to music or the radio.

I see I've fallen into saying "you" rather than "your family member". Nothing is meant by this - it is just an easier phrasing to type.

[Fredxx]

For the mask, if you have an idea of the mask you want to get, most of the manufacturers have a guide for fitting on their sites. You can usually download it as a PDF, print it out (make sure it is the right size), cut out the holes and use it. I have used them for teh last few masks I have bought.

With regards to the mode:

Titrate delivers CPAP therapy - Continuous pressure. This adjusts to find the CPAP pressure the person needs, and is then used to set a CPAP machine pressure. At a guess it will start at a predetermined pressure and then gradually reduce until Apnoeas start to occur or gradually increase until Apnoeas stop. This mode isn't designed to provide effective ongoing therapy, but to find the setting for a fixed CPAP machine

If you try the AutoCPAP mode, this is ore likely to be effective in providing therapy, and will provide the settings for an APAP machine. these machines sit at the low (min) pressure until Apnoeas start to occur. the machine then reacts by increasing the pressure (up to the Max if necessary) until the Apnoeas stop, then the pressure will reduce again. the APAP will initially be wide open (4-20cm), which can mean it keeps dipping below an effective pressure. if you set the Min to be about the 95% setting which you can get from a few nights with the machine, others seem to suggest this is about the right setting.

The lead and software - this is often only available to clinicians, but I understand that that machine allows you to retrieve smart codes which give information. The machine supplier should be able to interpret these codes for you.

I have to add the caveat that I am not a professional, I don't have this machine and I don't think it should be done this way in part at least because of the problems you are now encountering! That having been said, good luck.

[needaproperkip]

Hi all, a new hosehead here.

Shame this forum missed my first post - sent it yesterday but it never showed up on the postings. Spent ages typing it too!

Right, what I said was, I am the 'stubborn family member'! (Ello Don!!)

The first night I got the machine I lasted five minutes. Couldn't stick the constant air being blown at me. Second night I lasted an hour. Same problem. But determined not to give up and put Don's hard work to waste (he'd nagged me for months, done loads of research and I am a stubborn old cow) I tried again. This was after we had spent a little time tweaking the settings - it's now on RAMP starting at 4, treatment level 6, and APAP maximum of 10 I think. Well, kept it on all night and went to work feeling EVER SO MUCH better!! My colleagues noticed and I didn't yawn nor fall asleep at the computer all day! At 11pm at night I was still wide awake! Same the next night.....haven't felt so awake in years. So well done Don, your nagging paid off!! Last night I only kept the thing on for 4-5 hours as the mask is really too small and was digging in, but even so that was enough, I felt good this morning. I'll get a bigger mask - in fact I brought one home from work (I'm a nurse) but thought I'd better not use it as it's for anaesthetics and hasn't got a valve to allow you to get rid of the CO2, so I'll get another one soon. All in all, although it's a pain going to bed with a mask on your beak it's compensated many times over by the fact that I'm getting my life back, probably assisted too by the fact that I don't have to get up in the night to use the loo any more (see my other post).

So here's to CPAP and nagging sons!

[Fredxx]

Welcome to the forums. Your first post is probably still stuck in the ether somewhere waiting to be released. It gets held for moderation if it has links or certain words and phrases in; stops the spammers. After youve been here a while it gets more accepting.

I'm glad it seems to be working for you even with just a little use. I won't lie to you, there will be more frustrations to come, but it is worth it, as you say, to get your life back.

[QuietMan]

Hi all, a new hosehead here.

Shame this forum missed my first post - sent it yesterday but it never showed up on the postings. Spent ages typing it too!

Right, what I said was, I am the 'stubborn family member'! (Ello Don!!)

The first night I got the machine I lasted five minutes. Couldn't stick the constant air being blown at me. Second night I lasted an hour. Same problem. But determined not to give up and put Don's hard work to waste (he'd nagged me for months, done loads of research and I am a stubborn old cow) I tried again. This was after we had spent a little time tweaking the settings - it's now on RAMP starting at 4, treatment level 6, and APAP maximum of 10 I think. Well, kept it on all night and went to work feeling EVER SO MUCH better!! My colleagues noticed and I didn't yawn nor fall asleep at the computer all day! At 11pm at night I was still wide awake! Same the next night.....haven't felt so awake in years. So well done Don, your nagging paid off!! Last night I only kept the thing on for 4-5 hours as the mask is really too small and was digging in, but even so that was enough, I felt good this morning. I'll get a bigger mask - in fact I brought one home from work (I'm a nurse) but thought I'd better not use it as it's for anaesthetics and hasn't got a valve to allow you to get rid of the CO2, so I'll get another one soon. All in all, although it's a pain going to bed with a mask on your beak it's compensated many times over by the fact that I'm getting my life back, probably assisted too by the fact that I don't have to get up in the night to use the loo any more (see my other post).

So here's to CPAP and nagging sons!

Good on you! I take for granted now that I will not fall asleep until late at night. still marvel that I can go 8 hrs or so without getting up to the loo! Almost a year on CPAP now. Need a new mask though. That's coming next month. QM

[needaproperkip]

I managed to bugger up my settings on my machine by faffing with it, but all put right now (hopefully!). Didn't understand the difference between Auto and Titrate - it's back on auto now so all should be good - tomorrow will tell, just as well as we're all getting one hour less sleep.....

[needaproperkip]

Okay. Last night I had to take it off at 2.30am cos it was blowing a gale in my face. I have a Resmart Auto, Ramp starts at 4, treatment level 5, Auto set at 4, which is tiny, so how come the hurricane? Any ideas? It worked well for 2 nights but not since.

[symmit]

CPAP machines provide a constant pressure, not a constant flow - so if it's blowing huge amounts of air it's normally because of an excessive leak and it's upping the blower rate in order to try and maintain pressure.

Check the mask is properly assembled, a misfitted elbow or seal will cause it to go bonkers!

Congrats on getting sorted, when your rental expires though I'd go buy yourself a more recognised machine especially if you're staying on auto.

[don logan]

Resmed Quattro FX mask is on its way...

[Tigers Fan]

Your auto is probably set much as it was deliveredd and you have not set the upper pressure Pmax. Thus, when you have an apnoea and the machine winds up the full pressure, yours will go all the way eventually, according to severity of apnoea, because you have not set an upper limit. You've just discovered the downside of that!

Where should your Pmax be set? Can't begin to guess because we don't know your 90% pressure P90. Similarly, we don't know where your Pmin should be because we don't know P90.

I'm amazed you feel any benefit from APAP with an operational pressure of 5 - which is your Pmin.

Now you are receiving treatment - using an APAP, anyway - you should be going down the NHS route so you have support. When you have a diagnosis, you can inform the DVLA all at the same time that you have OSA AND that you are being successfully treated - they won't suspend your license.

Let's be clear about this: at the moment you do not have a diagnosis of OSA so your sleep problem might be something other than OSA (there are lots of forms of SA as well as 'other stuff'). We are CPAP DIYers because we know we have simple OSA - have been diagnosed. You need to get yourself to a doctor and find out the extent of your sleep problem.

[needaproperkip]

Yes, I do need to reset the maximum. And the operational pressure! I altered it down cos I thought it was too strong but realise now that it was probably because of air leaks. The mask is bloody uncomfortable but....it sounds like that's gonna be remedied soon! So no more leaks, up the op. pressure and maximum pressures, and confident that all will be well. Would rather keep tweaking till I find the right settings cos I really don't have the time to go for sleep studies & all that malarky. It did work very well for 2 out of the (about) 9 nights I've had the machine, and when one night I gave up on it completely I really felt it the next day, so it must be doing something. It's definitely OSA cos I've been observed by hubby and I get all the typical symptoms. But I will persevere - when I had the correct settings (or near to it) the difference was amazing.

Thanks all for your input, if it wasn;t for this forum and mega-nagging from Mr. Logan I doubt if I would have tried it even.

[symmit]

TF - most of us who have used an online service don't have a brilliant OSA diagnosis...

We've had a basic overnight, one night, test to show that either our breathing is odd and stops from time to time or that our O2 saturation drops followed by an awakening event too many times.

In addition an assumption is made from snoring or being overweight that cpap might be an answer, then we're send an auto machine in the post and a mask that will hopefully fit, and followed up with phone calls to adjust the system.

In my case, this worked well. But it could have been other things than OSA that caused my daytime sleepiness.

The additional benefits (machine is much quieter than my snoring) are good too.

Wide open on an APAP probably suits a lot of people, my AHI is low if set like that (under 4) but goes down to under 1 when set just right.