Urgent help before appointment in the morning please!

Hello,

I finally had a successful sleep test last night and have an AHI of 30. It was my third test and took nearly 5 months

I gave up and bought my own machine (an ICON Auto) about a month ago. Nearly three years of no sleep was killing me.

I'm still experimenting with masks (now using an Airfit P10 and finding it great) and pressure settings (both CPAP and Auto modes, also varying the min/max settings on auto mode), but most nights I get an AHI of <5. So far not got less than 2.7 but still MUCH better than the 30 I got last night without!

I haven't told the doctor about this.

I'm going back to get a machine and mask from them tomorrow. I do like the idea of being under their care rather than doing this alone.

But I've just read her recommended pressure on the prescription and it's 7cm H20.

When I first used the Auto mode it maxed out at 12 and my AHI was about 18. I went into the settings and put the max to 20, and most nights the pressure averages between 14 and 17.

So now I'm really worried. The machine tomorrow may be set to 7, and I have to use it for 6 weeks before going back for results and adjustments.

After getting <5 AHI with my own machine, I can't stand the thought of 6 weeks of poor sleep again if this pressure doesn't work.

Should I be honest that I've been 'self-medicating' and I know 7 is too low? Or am I wrong, and could 7 be right even though the Auto mode goes way above that?

Thank you in advance for any help!

John

You should always be honest with your doctor, it is not against the law to "self-medicate" and take care of yourself. She can't put you in jail. Go ahead and tell her exactly what you told us about where you have been getting the best results with your APAP. She might have you try a couple nights at 7 cm/H2O, but might be more apt to increase it if you don't have good results.

I would be honest with the doctor as you want to be sure she prescribes an APAP machine versus a CPAP machine. Have you been using the Sleepyhead software? If so print out the data so you can take it with you and show how well you have been doing with managing your own care and explain to her that you would like to work with her now but felt that you needed to get started sooner to start feeling better. Some doctors love a patient who takes charge of their health. I always tell my doctors that I am not a very good patient but that I am an honest one. They appreciate that.

Be honest. You want a dr who will work with you.

Thanks for the very fast replies!

Cancun - The prescription is for an APAP machine but obviously it could be restricted to a setting that is too low for me. I have been using sleepyhead (Mac) but sometimes it has merged days for some reason. So some of the results just wrong. But yes, I will print them off anyway and show her.

One problem is I am English in Spain, and don't speak good Spanish. My friend is helping me and she does speak better Spanish but still not fluent (and of course she doesn't understand the issue like I do), so it just makes it all more difficult!

Thanks again everyone

Hi and welcome - to the forum where we believe that we are adults, intelligent, and capable of taking care of ourselves - with the help always of our doctors, but not necessarily having to run to them for every little scratch . If diabetic children can deal with their blood tests and sugar, etc, we can certainly learn to manage the machines that blow a very small amount of room air into our mouths to help keep our airways a tiny bit wider.

What's important here however, is whether or not your Icon gives data that will let you follow your progress each night, and I'm ot at all sure it does, though many other machines do, using software you can download free from this forum. The data, btw, is not the kind that just lets the doctor (and therefore your insurance co.) know you've slept x # of hrs, enough so the insce. co. will pay for your machine. What I'm referring to is the kind that reports your AHI, flow rates, leak rates, pressures, and a whole lot more, and most of us it to e.g. learn how to tweak things (mostly pressures) to help us do better - as you tried to.

And so you might want to change your machine for one that does the above after checking into what it does... "data capable" may not be enough to tell you that, so you need to know the model # of the machine, then call Cpap.com and ask if it does data (or look on the product pg there) and get a script for the type of machine you want - IF it's not too late to exchange yours.

Til then... you're concerned re the top setting, but in fact could even leave it at 20 because it's the low setting that's all important. Defaults usually are set at 4, which is too difficult to breathe at and highly unlikely to be a scripted one as it would be so ineffective... 6 or higher being the least useful. So you could see how things go that way and what SleepyHead (software) says for a few nights and then decide (with our help) if you want to experiment further. I don't suggest you go a lot higher without more advice or knowledge however.

The upper level on an apap is not as important as the lower level. I would suggest you put the lower level at 7 and watch where it goes. On many apaps if the lower level is too low it will spend a lot of time chasing pressures.

The one you are getting can be adjust by you. Once you get it come back and tell us what it is and people will point you to the clinical manual.

Julie wrote: What's important here however, is whether or not your Icon gives data that will let you follow your progress each night, and I'm ot at all sure it does, though many other machines do, using software you can download free from this forum. The data, btw, is not the kind that just lets the doctor (and therefore your insurance co.) know you've slept x # of hrs, enough so the insce. co. will pay for your machine. What I'm referring to is the kind that reports your AHI, flow rates, leak rates, pressures, and a whole lot more, and most of us it to e.g. learn how to tweak things (mostly pressures) to help us do better - as you tried to.

Thanks Julie. Yes it does provide this sort of data and I've been monitoring leak rate etc. The only real problem (apart from the learning curve - but I've learnt a lot from reading this forum and other sites) is that SleepyHead sometimes combines days into one leaving some days blank, and others with two sets of data

BlackSpinner wrote:The upper level on an apap is not as important as the lower level. I would suggest you put the lower level at 7 and watch where it goes. On many apaps if the lower level is too low it will spend a lot of time chasing pressures.

The one you are getting can be adjust by you. Once you get it come back and tell us what it is and people will point you to the clinical manual.

Thanks Blackspinner. Yes, I did that a few nights into my experiments. I think I have it set to a min of 8 or 9 at the moment.

I'll come back tomorrow once I know what machine they give me. Hopefully it will be better than the Icon (although, apart from the data issue with Sleepyhead, I'm happy with it - certainly compared to no machine!) - it'd just be nice to be given a better machine Thankfully I got the Icon at an incredible bargain price, so either way I can't lose. It's been worth it just for the last month's sleep alone! And now I'll have a spare.

If you have any say in which machine you get, I would strongly recommend either a Resmed Autoset or a Philips Resperonics auto.
These are the 2 most popular brands here and will therefore provide the best chance of help and support from knowledgeable folks who actually have gone through whatever problems you may encounter and have already found the solution.

You may have read 1-2 notes re problems the posters had with SH - but the problems may have related to what they did and not to SH, and it's been updated many times as well - just about everyone finds it works if installed properly for their machines and if not, we can usually help them... it really is a terrific program and you shouldn't not use it because of what you may have read in the past.

Julie wrote:You may have read 1-2 notes re problems the posters had with SH - but the problems may have related to what they did and not to SH, and it's been updated many times as well - just about everyone finds it works if installed properly for their machines and if not, we can usually help them... it really is a terrific program and you shouldn't not use it because of what you may have read in the past.

Oh I am using it Julie, but for some reason on some days it merges two days into one and leaves on day blank. I have no idea why. I have searched to try to find an answer but so far come up with nothing. This is the Mac version and I'm not sure if it's as advanced as the Windows version? I could try it on my fiancee's windows machine.

I've got a Mac and no trouble (in fact Jedimark, the forum member who designed SH, uses one). What you need to do is detail your SH problem in either this thread or a new one, let someone help with it (I can't, not a techie), and then get to the other things (I know you have an appt tomorrow). I wonder if you're using an old version of SH, because as I said, it's been updated a lot.

I promise not to bust your butt!

Sheriff

johnrrr wrote:but for some reason on some days it merges two days into one and leaves on day blank. I have no idea why. I have searched to try to find an answer but so far come up with nothing. This is the Mac version and I'm not sure if it's as advanced as the Windows version? I could try it on my fiancee's windows machine.

Are you sure that your cpap's clock is set to the right time? My timestamps were really weird, and I realized that it was because my clock had drifted by over an hour. If your clock is set to some US time zone, it might put you in the previous day if you go to bed too early.