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Sleep Apnoea Forum Bringing Help + Support to the Patient

Having suffered from Sleep Apnoea for several years, it came as a great relief when I was originally diagnosed as at the time I was falling asleep during the day and could not understand why.

However, like most, I do have days when I feel more sleepy than others (but never as bad as the old pre-CPAP days)! I am aware that some patients need to be positively monitored due to their work requirements (like driving) but what about the rest of us? I think it would be useful to be able to have an indication of how the CPAP is performing. So you could get an idea if something is wrong perhaps with your machine/mask or diet or lifestyle. The only option open to me for the moment is to arrange a home oxometry test which results in 2 return journeys to my hospital which is 20 miles away, so not the easiest.I have recently changed to a new Remstar Pro C-Flex+ machine and am aware that it collects data on patient use. Having looked around, I do not want to buy a very expensive piece of software so have been looking around for an alternative.

I have come across a few gadgets on the market that claim to monitor and report on the wearers activity which also includes sleeping informaton. They all cost around £100 each and there is some mention of Sleep Apnoea but just wondered if there was anyone out there with any personal experience to report?

The 3 devices that I have seen are the Jawbone UP, Fitbit and the ZEO although the Zeo appears to be indefinately unavailable.The online reviews are mixed, particularly regarding sleep monitoring, so anyone out there got any feedback on these or any other "toys" that may be of interest?

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Hi David if you want to see how you are performing get the Sleepyhead software http://sourceforge.net/projects/sleepyhead/    its free and compatible with your machine I believe.  You can also input some pulse Oximeter data into it and compare the data side by side it Supports Contec CMS50 Oximeters. have a look at the website.

I have a system one CPAP and tend to download my readings about once a fortnight and have a look how I'm going.

I am sure that other members will have some useful advice for you as well

 

David, welcome, I do agree with the other David's suggestion, I use sleepyhead and can help you get it set up on your PC if you need. If your PC doesn't have one, you will need a card reader, one that is used for digital camera's. At least you will be able to see for yourself whether yu are getting the correct treatment as far as leaks are concerned. A couple of questions, how long have you been on CPAP? Do you know what your AHI was at your sleep first sleep study? Do you know what your AHI is now with CPAP? Also do you know what your pressure settings are on your CPAP i.e. between 4 - 20. 

Terry,

Thanks for your reply. I am not sure if Sleepyhead will work with my machine? Looking at the info on the web I cannot find a specific reference to the Remstar Pro, but will install and see if I have any luck. I was diagnosed and put on CPAP 8 years ago and my pressure is set at 10.5 Generally I only visit my hospital for a machine service or when I have a particular need, so am not actively/positively monitored. I have no complaints with the support I receive from them, as they are always very helpful, just that I do have some concern now and again, if sleep quality is down and maybe trying to work out why?

Bingo! Just installed Sleepyhead and it read my data no problem!! Just got to try and understand what it is saying now!

Anyway, would still be interested in anyones thoughts regarding the UP or Fitbit as an alternative to Oximetry? Looking briefly at Oximetry meters would seem that these would be a similar price to UP etc, which I recently came across accidentally, on sale along with some other gadgets in that well known fruit shop that makes a good range of computers!

David

If you Google sleepyheads I'm sure theres a youtube video somewhere showing you what it all means. Not tried it oximeter so if you go down that route would be interested to see how it works and matches up the data

I put a video on here to help people understand the data from our machines.  Here's a link to it http://hope2sleepguide.co.uk/video/understanding-sleep-statistics-f...

For me, I like to see what's happening with my therapy, and in actual fact without it I would still have been on the wrong pressure and struggling still, as the machine the hospital gives out in our area has no useful data, which is why I bought my own machine. 

I have the Zeo, but there were too many inaccuracies.  The only benefit I could see to having any of these kind of devices is perhaps to show sleeping position and sleep stage (if they're accurate) which you might be able to match up with the data from the CPAP.  I'm more interested in finding out whether my CPAP therapy is ok, which is why I'd always opt for checking my CPAP data.  If you still want to monitor your oxygen levels you can just buy a Contec overnight recording pulse ox, although if your AHI is low, then your 02 should be ok.  I only check mine from time to time. People who don't have software-compatible machines are mainly the ones who tend to check their 02.

Hope this helps.

David,

         Do you think it's time for a follow up sleep study? I have one about every 2 years. The other thing is the hospital should regulary check your data, I would say once a year, as we get older and either put weight on or lose it sometimes our pressures need adjusting. They can tell this from your data quite easily, once you get used to reading the data, you can almost tell yourself. Last time I did a sleep study and followed up with my Sleep specialist appointment before he even told me the results I told him the pressure settings that need to change. He said you are exactly right, you didn't even need to come and see me and started righting a script to have my settings change, I said don't bother I have already done it. I'm not saying everyone she make these decisions on their own but we do have to take our our treatment and therapy into our own hands because it is our body we are talking about.
 
David James said:

Terry,

Thanks for your reply. I am not sure if Sleepyhead will work with my machine? Looking at the info on the web I cannot find a specific reference to the Remstar Pro, but will install and see if I have any luck. I was diagnosed and put on CPAP 8 years ago and my pressure is set at 10.5 Generally I only visit my hospital for a machine service or when I have a particular need, so am not actively/positively monitored. I have no complaints with the support I receive from them, as they are always very helpful, just that I do have some concern now and again, if sleep quality is down and maybe trying to work out why?

David,

          Just with the data the too most important figures are your AHI under 5, AHI stands for Apnea Hypoapnea Index and is the average number of times you stop breathing per hour for 10 secs or more. Normally people can stop breathing up to 5 times an hour so we want ours to be as low as possible. The other figure is your leaks, you want them to be as low as possible but definetly under 25 L.

These are the two most important figures and if you watch the youtube video Kath suggested it pretty much tells you that, Mark the guy that writes the Sleepyhead software is a CPAP user and on one of the other forums I am on.

I would worry too much about the rest at this early stage of you looking into the data. 
 
David James said:

Bingo! Just installed Sleepyhead and it read my data no problem!! Just got to try and understand what it is saying now!

Anyway, would still be interested in anyones thoughts regarding the UP or Fitbit as an alternative to Oximetry? Looking briefly at Oximetry meters would seem that these would be a similar price to UP etc, which I recently came across accidentally, on sale along with some other gadgets in that well known fruit shop that makes a good range of computers!

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