My Symptons

[James @ Intus]

Now it's my turn to forget something I want to refer to but there's a gentleman here on the forums who started on CPAP, had good initial results, then started to feel worse. The OSA he was suspected to suffer from turned out more complex and he was swapped on to a Nippy ventilator which is like a beefed up CPAP and helps with breathing unlike just opening the airways. If you search Nippy you'll find it.

Actually, here's the thread: http://forums.cpap.co.uk/showthread.php?t=672

[dogman]

my symptons

Hi,
I have now worn my apap m/c for 12 nights.
Average pressure has been around 8.6 x 9 hours and mask fit excellent.
I have seen no real improvement and today I felt really awfall.
Is it worth me carrying on , do you think it still has time to work?

Thanks for any help

[James @ Intus]

I'd say 12 nights is still relatively early. Some here suggested that if you suffered OSA untreated for many years, you'll have a massive "sleep debt". To think that can be made undone in a few nights might, at least for some, be too optimistic. Most people get the benefits around and about the 10-14 day mar so you're pretty much at that point. I'd say give it another two weeks, then see how things are going and discuss with your care provider.

And of course, don't assume CPAP will fix everything that may be wrong with your health. If you haven't exactly been eating nutrient-rich foods, you can't expect to feel much energy either. So have a look at what else you can improve now you're on a roll.

[dogman]

my symptons

Hi James,
I will carry on as you suggest.
It is so good to have some one like you to give me help.

Thank you

[dogman]

to keep or not to keep

HI,
My Heart consultant said I may have S/A so suggested I S/A consultant.
I really felt ill so I paid private to see a E/N/T consultant who did a sleep test on me and said I had S/A
To speed things on i have an part paid for a A/PAP machine from Resmed which I have mastered and wear every night for 2 weeks now.
I feel slightly better but nothing dramatic.
On the 4th of September I must either purchase the machine or send it back.
If it had given really good results I would not hesite to buy it but not sure now.
Also on the 4th Papworth are phoning me to see if they should give me an appointment. I am sure they will and I guess they will supply me with a C/PAP machine, but will I get on with a C/PAP machine as good as the A/PAP machine I have at present?
If I keep the A/PAP it will cost me a further £400 and will need to maintain it and buy masks.
And very important question how long will Papworth take to supply me?
I do not have alot of money but if I will loose to much by waiting then I will have to buy it.
P>S>
I am also an Essex man.

What would you do?

Thanks for any help

[James @ Intus]

If sleep apnoea was diagnosed and it was quite clear, then there's no doubt you have it. But it can be you also have something else going on which causes this situation of the APAP not taking away all the daytime sleepiness. Quite likely it's absolutely 99-100% treating the sleep apnoea but it's not taking care of whatever else there may be causing you to not feel great.

Given the fact that Papworth is the leading clinic in the UK, by all means press them for an appointment. Get a read out of the APAPs data reports. It may well be that it steadily operates between two pressures not far apart. If that is the case, jumpting to a CPAP won't be a big deal. But as they are funded quite well by their PCT, yuo may even get an APAP. Also, if you don't agree with Resmed's pricing for the inital outlay and ongoing fees, you can also check our site: www.eu-pap.co.uk where you will find plenty of APAP's.

Papworth won't take long to supply you, but that's assuming they agree with the sole diagnosis of OSA. It's likely they'll take your non-success on board and dig deeper before supplying you with obsolutely the right kind of equipment. You are really in good hands there at Papworth so don't fear their treatment. As long as you build a clear case, take some notes to bring etc. they will help you out. Just don't let yourself be brushed off by a busy someone during that call, make them clear not all is well and yuo suspect there may be more going on as the APAP did not make you feel better, even though you suspect it was have worked clinically, in terms of avoiding and treating apnoea events.

[dogman]

my symptons

HI James,
What helpfull, clear advise this is.
I can understand everything you advise and It makes such good sense.

James thank you so much.

[tallishbloke]

Hi dogman

I would agree with James and would suggest that you at least check out the situation with Papworth, yoiu have nothing to lose and potentially substantial to save. Its quite opossible you may get an APAP if they have adequate PCT funding and they felt it was the best unit for you.
My only additional comment would be to say that it is possible that your sleep apnoea isnt fully treated yet - it is important to get a full download from your unti if possible. For example, if the pressure range on it has been set too narrowly, it may be reaching its maximum set pressure and still allowing some airway events through untreated. You may also be getting significant mask leak (or mouth leak) which may also prevent full effective therapy.
Good luck

[Floatyboaty]

I was supplied with a cpap and managed to get an apap at a reasonable price. I use the cpap for 12v as I have problems with apap on 12v which I think is down to the varying pressure. (need a full rewire on boat!)
What I am getting at is, now from the apap I know what my pressure settings are and have altered the cpap accordingly, I use both cpap and apap regularly and sleep fine with both, I do not feel any difference (I do not use leak detector on apap as I hate it). It may well be worth giving up the apap for the cpap, another thread on here someone else gets on better with cpap.
Can you stall for a little more time with the apap? At least then you could get to try both.

[dogman]

my symptons

Thanks you both so much for your help.
You get 4 weeks to try the apap which is up this Thursday 3rd.
Speaking to Papworth Friday will sure push for an appointment.
Thanks again.

[dogman]

my symptons

Papworth phoned me and it was just to confirm my g.p had sent a letter!!
What a strange way of doing things!
Then had aletter saying they wanted to do an overnight monitor to my finger.
I explained I have already had an embleeta test and so I can now see a doctor from Papworths on 16/10/09
My readings have gone up to 12.2 each night now.

Thanks