NHS and playing with pressures

I've been on CPAP now for 3 months, with readings of around 6.5 AHI pretty consistantly (jumping up to 10 if I have a few beers.)

As far as the NHS was concerned, they gave me the machine,a brief instruction and sent me home. In my follow up appointment I asked about the AHI and they simply said not to worry, just carry on as normal and be happy.

I've been tempted to play around with the settings and try different pressures but have been putting it off until my "proper" follow up in another couple of months. The last week or so however I have been struggling a bit with leaks, so I phoned up the hospital asking for help and advice, I know the mask should last longer than 3 months, but it is starting to leak. I was hoping for at least a chat on mask care or a replacement. Anyway, it was a waste of a call, I was told I can get an appointment in 4 weeks and he laughed when I mentioned the leaks and said masks last 6 months minimum.

In a fit of pique I think I have had enough of being fully compliant and may as well just start playing around myself. My pressure is 8 and I really want to see if 9 / 10 help. I have the know how to change, I just haven't as I didn't want to piss of the NHS folks. Despite my annoyances they have provided a decent machine, and done an adequate job at least with my AHI being "okay." I would like to try to the the AHI down and see if my residual sleepiness improves.

Question is twofold:

1) Does anyone have any issues with me just changing my own pressure settings? I assume worst case the NHS bods will tut a bit and get defensive. I don't realistically see them actually doing anything, especially if I get decent results.

2) Assuming I do go ahead and start playing around, are there any suggestions on the best way to go about it? I was thinking of switching to 9cm for a week to start with and seeing what happens?

Cheers in advance

Ryan

I don't know what the NHS might do if or when they realize that you touched the "forbidden area"
I had one person over in your area that told me that when the NHS found out they threatened to take back the machine if settings were change again and they promptly set it back to what they deemed the "best" settings. They weren't real nice about it.
I don't know what ever actually happened after it all was done. Here in the US if we get anything at all for changing things it's just a verbal slap on the hands but then we essentially buy our own machines here...either privately or through our insurance even if it is state/government insurance. We aren't forced to come back for follow ups either.
What happens if you don't follow up? Anything? Are you seeing actual doctors at the follow up or techs?

I don't remember if your AHI was primarily Obstructive in nature (OAs and hyponeas) but I think it was and if so...yeah a little more pressure should bring it down. If it's 50% or more Clear Airway events..with an AHI if 6 ish..that's 3 CAs per hour and more pressure won't fix those anyway.
The higher AHI after few beers...again if obstructive we can reduce them but if mainly CA the airway is already open so more pressure won't fix it. So just make sure that what you are trying to fix with more pressure is fixable (or needs to be fixed) with more pressure.

Hi Ryands,

At the risk of sounding like an alarmist, I have a vague memory of people posting that when they tried changing their pressure, the NHS threatened to take back the machine. Please verify that so you don't get into trouble. And hopefully, someone can tell me if I am right or wrong on this.

If I am totally off base, definitely change your pressure to 9 if your treatment is suboptimal as it seems to be. Do I assume that you are using sleepyhead or some software to monitor your data since you know what your AHI and leak levels are?

If you do change the pressure, give it a minimum of 3 to 7 days to give your body a chance to adjust to the new pressure. If you have further questions, please use the link in my signature to post screen shots of the data so that forum members can help you out.

Regarding mask issues, if you can afford to, you might want to consider replacing the cushion for your mask since it sounds like it needs replacing. Not sure where the best place for you to buy is since you live in the UK. But start with cpap.com and go from there.

Another idea is to go to Craig's list for the UK and see if anyone is selling your mask at a good price.

Best of luck.

49er

Ryands wrote:I've been on CPAP now for 3 months, with readings of around 6.5 AHI pretty consistantly (jumping up to 10 if I have a few beers.)

As far as the NHS was concerned, they gave me the machine,a brief instruction and sent me home. In my follow up appointment I asked about the AHI and they simply said not to worry, just carry on as normal and be happy.

I've been tempted to play around with the settings and try different pressures but have been putting it off until my "proper" follow up in another couple of months. The last week or so however I have been struggling a bit with leaks, so I phoned up the hospital asking for help and advice, I know the mask should last longer than 3 months, but it is starting to leak. I was hoping for at least a chat on mask care or a replacement. Anyway, it was a waste of a call, I was told I can get an appointment in 4 weeks and he laughed when I mentioned the leaks and said masks last 6 months minimum.

In a fit of pique I think I have had enough of being fully compliant and may as well just start playing around myself. My pressure is 8 and I really want to see if 9 / 10 help. I have the know how to change, I just haven't as I didn't want to piss of the NHS folks. Despite my annoyances they have provided a decent machine, and done an adequate job at least with my AHI being "okay." I would like to try to the the AHI down and see if my residual sleepiness improves.

Question is twofold:

1) Does anyone have any issues with me just changing my own pressure settings? I assume worst case the NHS bods will tut a bit and get defensive. I don't realistically see them actually doing anything, especially if I get decent results.

2) Assuming I do go ahead and start playing around, are there any suggestions on the best way to go about it? I was thinking of switching to 9cm for a week to start with and seeing what happens?

Cheers in advance

Ryan

About mask life.
The cushions are the part that can get tired first and the stretchy headgear secondly. Cushion life varies widely among users because of different facial oils maybe or different cleaning routines. Here in the US most insurance will pay for a new cushion for your Quattro once a month...now most people can get life out of them than just a month. Some people get months and months and months and some people do good to get 2 months.

You can just buy a replacement cushion if you wish...kinda pricey but the option is there. I would look on EBay...some sellers will ship overseas...and if they don't .....well, I can do it if you sweet talk me a little .

I know you probably don't have a spare cushion right now so I don't advise doing this without a spare in case you mess up but here's someone who was able to really extend the life of his cushions with some extra cleaning.
viewtopic/t75749/viewtopic.php?f=1&t=74 ... il#p685240

Cheers guys, I actually just remembered I have an appointment for a suspected hernia on saturday with my normal GP. I will have a chat with them to see their opinion. Worst case I am sure I will be able to a prescription from them anyway, as I intend to buy an APAP anyway for myself.

I will see about sourcing new liners. I really should stop being so lazy and buy some of those clothe liners (remzzzzzs or something. I do have the amazon link saved at home.)

On the positive side, while still drowsy in the three months I have gone from waking up 5 times a night to pee, to zero. And more miraculously haven't woken up with asthma once (which used to be a once a week or so occurence) and in general my asthma seems much more stable. No idea why asthma is much better unless it is stress levels, but happy anyway. Also my regular cough has gone. So it hasn't treated the thing I hoped (the tiredness) but has improved my life in many other ways. The weirdest thing is I actually genuinely like the machine. I actually find the mask enjoyable and relaxing and it works like some pavlovian response that sends me straight to sleep whereas it used to take me ages. Must be stockholm syndrome!

The asthma thing - apnea events seem to trigger silent acid reflux (GERD) this irritates your bronchial tubes which makes them very sensitive. Also for 8 hours you are breathing filtered air.

If I were you I would record all the settings and adjust the pressure .5 cm at the time for a few days to where it works better for you. Before you go to your appointment reset the settings.

Ryands wrote:I've been on CPAP now for 3 months, with readings of around 6.5 AHI pretty consistantly (jumping up to 10 if I have a few beers.)

As far as the NHS was concerned, they gave me the machine,a brief instruction and sent me home. In my follow up appointment I asked about the AHI and they simply said not to worry, just carry on as normal and be happy.

I've been tempted to play around with the settings and try different pressures but have been putting it off until my "proper" follow up in another couple of months. The last week or so however I have been struggling a bit with leaks, so I phoned up the hospital asking for help and advice, I know the mask should last longer than 3 months, but it is starting to leak. I was hoping for at least a chat on mask care or a replacement. Anyway, it was a waste of a call, I was told I can get an appointment in 4 weeks and he laughed when I mentioned the leaks and said masks last 6 months minimum.

In a fit of pique I think I have had enough of being fully compliant and may as well just start playing around myself. My pressure is 8 and I really want to see if 9 / 10 help. I have the know how to change, I just haven't as I didn't want to piss of the NHS folks. Despite my annoyances they have provided a decent machine, and done an adequate job at least with my AHI being "okay." I would like to try to the the AHI down and see if my residual sleepiness improves.

Question is twofold:

1) Does anyone have any issues with me just changing my own pressure settings? I assume worst case the NHS bods will tut a bit and get defensive. I don't realistically see them actually doing anything, especially if I get decent results.

2) Assuming I do go ahead and start playing around, are there any suggestions on the best way to go about it? I was thinking of switching to 9cm for a week to start with and seeing what happens?

Cheers in advance

Ryan

1. I did - and the NHS gave me a telling off and a plan to get it back to 9, It was 7, I took it to 9 briefly which still didn't work, then I had a thrush invasion and only 14/15+ worked, this was obviously panic and overkill on my part but I went in the other week and they said nothing of it as I was true to my word after seeing them the time before and got it back down to 9 - trouble with 7 was it just wasn't working because I kept snoring awake before I could GET to sleep - I'm sure it would have done better afterwards. They humour me and they're overstaffed so my experience is all they care is when they see the 100% mark - I can do that as I'd be much worse without CPAP, but as to refinements or optimal success of my theapy, another question , they're too under-resourced to help me answer. So I post on here, some people on here know so much, and are so giving they've been there worn the tshirt, found out the hard way and they've given me so much good advice in past

as for my licence, that's intact there's no question over it, I'm responsible enough to not drive when I'm losing the game to sleep apnoea, I'm largely treated,

2. agree with the rest of them don't go mental like I did, get mad at the snort arousals and think double 7 to 14 that'll fix it as it may fix it and then some.. I'm currently on 9 trying to stay there, I suspect that if it goes up too high it is counterproductive - you gain on the no snoring asleep only because you never fall asleep because the pressure is too uncomfortable

sleep = stoneage process and conditions to do so unbelievably illogical/delicate etc, best of luck in adding modern refinments to often unwilling primate mind set ! .

Is your machine definitely not an APAP machine even if it has been set into CPAP mode as this is what the NHS seem to generally supply.
You would normally self triate on an open pressure range until your one month follow up when your progress is checked this saves the necessity for hospital sleep tests and is therefore cheaper for the NHS. You are then checked again after three /four months when any additional changes are made.
If you did have a hospital in house sleep test or specific requirement the above may not apply to you.
I have an APAP and allowed the machine to triate my pressures for the first three months. I then took control into my own hands using sleepyhead and Encor Basic eventually changing to a fixed pressure as the constant hunting of the machine was worse for me than missing a very occasional event.
I would not think the NHS could withdraw treatment without leaving themselves open to being prosecuted for mall practice provided you were sensible and reasonable in your actions. My progress and decisions can be backed up by the data provided by Encor Basic and sleepyhead and it would difficult to argue against this data.
Changes to your pressures will show in the reports but my hospital seems not to be concerned in my case but I can understand their concerns as so many people may not have the common sense to take control of their own treatment.

Well I changed my pressure to 9 from 8 last night. I didn't notice any difference in "feel" and I slept perfectly all night.

AHI was 7.5 this morning which is higher than it usually is, looking at sleepyhead it was a mixture of all types of apnoeas in pretty much even ratios. I did however have a glass of wine before bed which I haven't for a couple of weeks, so will keep monitoring. The one thing I did notice is leak was up, not massively, but first time it has raised. I ordered some remzzzs liners, hopefully those will help.