CPAP TRIAL

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Permalink Reply by Kath Hope on July 1, 2013 at 19:32

I remember those days well Javed and told the clinic I slept better without it.  Of course, I never really, as it wasn't safe restorative sleep I was getting, but it's how it can feel at first.  Practise wearing it, with the air blowing, before bedtime - whilst watching tv is a good idea or reading a book.  Keep telling yourself that the air + pressure is your friend really and is there to help you sleep safely.  Once you start to get good therapy and feel the benefits then you won't want to sleep without it, but it does take a while to adjust for a lot of people. 

The Resmed S9 is able to be set for longer than 10 minutes, so if you find you can't alter this then ring the clinic, as they might have capped it to 10 minutes and may be happy to help you adjust it over the phone, but they won't want you changing the settings without liaising with them.

Good luck Javed, and let us know how it's going.

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Permalink Reply by Terry Vella on July 2, 2013 at 6:20

Javed, I use a Resmed S9 Autoset and the ramp feature goes you to 30 mins, if the clinic has locked it they should be able to unlock it, I can send you the instructions on how to change the settings if you need it. The whole CPAP thing is a big learning curve for most people and only a lucky few get it right at the very start. A couple of suggestions, I always have the hose coming from above my head either using a hose lift or something you can make yourself or if you have a bedhead hang it over it. The other suggestion with the leaks and FFM is use mask liners, you can buy them over the net or make them yourself. I use a Resmed Mirage Quattro and they are very difficult to master. In the end you may need to try a different mask but try to stay with the mask for at least a week. 

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Permalink Reply by Javed Iqbal on July 3, 2013 at 17:40

Thanks for the comments Kath & Terry. I had more success last night in the way that I managed 6.4 hours with the mask and I think it was set on auto because that's what I could see on the screen, the air pressure wasn't overpowering and I managed to fall asleep with the mask intact. According to the results my AHI was 5.4 if someone could interpret this for me as I have no idea what it means.

Despite 6.4 hours sleep on CPAP I woke up feeling worse than I have ever felt before. I felt totally drained of energy, felt breathless, my chest felt tighter than usual and I generally felt unwell. I was concerned enough to ring the sleep clinic for advice but I just got fobbed off and told to note all concerns on a piece of paper and return it with my machine on Saturday.

I will see how I get on tonight but I'm beginning to wonder if I'm using the Resmed S9 Autoset correctly?

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Permalink Reply by Terry Vella on July 4, 2013 at 1:40

Javed, well done on using it for 6.4, it's a really good improvement from what you were using it originally. AHI, stands for Apnea Hypoapnea Index, it's the average number of times you stop breathing for 10 secs or more per hour. When you did your initial sleep study you should have got a figure i.e. 30 which means you stop breathing on average 30 times per hour. The ideal figure is less that 5, 0-5 is normal, 5-15 is mild, 15-30 is moderate and 30 + servere. So you can see how you are erforming, if you like each night. The ultimate is to have an AHI of zero but that is hardly every achieved for a number of reasons. there is software you can use called Sleepyhead where you can see your own data and see what you are doing each minute you uses your CPAP.   I have a attached the website for you to download it if you want, you will need a card reader to read the data off your sim card.

There are Youtube videos on it if you want to have a look.

               http://sourceforge.net/projects/sleepyhead/

I can help you with all this if you need, using this software we can take our therapy more into our own hands.

On the problems, you are having, it is very difficult for us to give you advice over the net, are you getting them check out by your GP? Not sure if they are to do with the CPAP or not, CPAP does take some getting used to but shouldn't be causing those type of problems.

I'm not exactly sure what you mean by using the Resmed S9 Autoset correctly? I use it and it works really well, do you know what your pressures are set at, also, what your Ramp is set at and your EPR, if you don't know what they are I can send you the manual with more help. 

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Permalink Reply by Javed Iqbal on July 4, 2013 at 14:02

Hi terry and thanks very much for the link to 'Sleepyhead'. I've downloaded the software and I have a card reader built into my printer so I assume I can use that to import the data.

I guess yesterday's sysmptoms were merely coincidental as I feel ok today although I still feel extremely tired. I managed 6.9 hours on CPAP last night with a AHI of 6.9......my original AHI from the sleep study was 36 so I feel happy with the improvement although I have yet to 'feel' the results but I've only had 2 proper nights on CPAP so will hopefully start to feel the benefit soon. Although I am only on a CPAP trial until Saturday so not sure how long it will be before I'm issued with my own.

I sounded unsure if I was using the machine correctly because in the first few nights the pressure at the end of the 10 mins ramp time, which is it's maximum as I have OFF/5 mins/10 mins, I couldn't stand it but for the last 2 nights I think I've used the machine differently and can see 'auto set' on the screen and the air pressure doesn't seem anywhere near as strong but it is constant and has allowed me to keep my mask on all night. I was beginning to wonder if there were different ways of using the machine and perhaps I've inadvertantly chosen a different method to that which I started with. Sorry to sound so vague but I don't know the workings of the machine. The light on the start button is blue when using it but I'm sure it was green in the first few days. Perhaps you could help with a detailed step by step guide Terry or by all means send me a link to a manual.

 

Regards

 

jav 

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Permalink Reply by Javed Iqbal on July 4, 2013 at 14:03

Also Terry, I do not know what the pressure is set at or what EPR is

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Permalink Reply by Terry Vella on July 5, 2013 at 0:33

Jav, I don't have an inbuilt card reader but believe it will work, give it a go and lett me know if you can see any data, the most important figures are your AHI, leaks and pressure settings. The software will tell you what you machine pressure settings are set at.

Try to get the same machine if you can after the trial, The Autoset or it's equalivent in the Phillips range are the best machines you can get but are expensive. I think you can probably see how the AHI works, at your sleep study it was 36, so you stop breathing on average 36 times per hour for 10 secs or more (servere sleep apnea), using your CPAP it is now 6.9, that is a good, over time you should come down more. The reason these number are so important is because each of those 36 times per hour, you wake up either in whats called the fight or flight mode, your not getting the oxygen you need to your vital organs, your blood rushes to your heart and brain and basically you are never sleeping properly. You can imagine the strain this puts on your body and your organs. At 6.9, it is so much better for you.

Hardly anyone gets instant results, your body has been living like this for a long time, it needs to adjust to CPAP first then heal, some people get an instant rush because they have been so oxygen deprived for so long, then the gradually start to feel the effects after 3-6 months. The ramp feature should go up to 30 mins but yours may have been locked down, the power light should be green when plugged in and turns blue when you start the machine up so it sounds OK.

Mary has supplied you with the link to the manual, I'm also on the website she has given you, you may want to join that site as well, there are more CPAP users on it and the majority use either the autoset or Phillips equilivent.

Mary also explained the EPR, that is a comfort setting, your can chosse either 0,1,2,3, I have mine set at 3, but each person is different.

If you don't get another autoset, make sure you don't get anything with Escape in it's name, they are the most basic of machines and are not data capable.

Javed Iqbal said:

Hi terry and thanks very much for the link to 'Sleepyhead'. I've downloaded the software and I have a card reader built into my printer so I assume I can use that to import the data.

I guess yesterday's sysmptoms were merely coincidental as I feel ok today although I still feel extremely tired. I managed 6.9 hours on CPAP last night with a AHI of 6.9......my original AHI from the sleep study was 36 so I feel happy with the improvement although I have yet to 'feel' the results but I've only had 2 proper nights on CPAP so will hopefully start to feel the benefit soon. Although I am only on a CPAP trial until Saturday so not sure how long it will be before I'm issued with my own.

I sounded unsure if I was using the machine correctly because in the first few nights the pressure at the end of the 10 mins ramp time, which is it's maximum as I have OFF/5 mins/10 mins, I couldn't stand it but for the last 2 nights I think I've used the machine differently and can see 'auto set' on the screen and the air pressure doesn't seem anywhere near as strong but it is constant and has allowed me to keep my mask on all night. I was beginning to wonder if there were different ways of using the machine and perhaps I've inadvertantly chosen a different method to that which I started with. Sorry to sound so vague but I don't know the workings of the machine. The light on the start button is blue when using it but I'm sure it was green in the first few days. Perhaps you could help with a detailed step by step guide Terry or by all means send me a link to a manual.

 

Regards

 

jav 

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Permalink Reply by Kath Hope on July 5, 2013 at 15:32

Javed won't have the choice Terry as it's up to his hospital which machine they supply.  Unless of course Javed chooses to purchase his own.

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Permalink Reply by Javed Iqbal on July 5, 2013 at 22:38

Hi Terry, I managed to import the data from the SD card and I have attached a screenshot (if it's worked). Not really sure if attaching pictures to posts is allowed but I noticed a link at the bottom of this page to 'upload files'. Anyway, if the picture will show then feel free to make comments about my statistics for the first 6 nights on trial with CPAP.

Incidentally, even though I struggled with the mask again last night I have today, for the first time in a long time, come home from being at work all day and had the energy to do the garden for 2 hours. This is significant to me because usually when I get home from work all I want to do is crash out and I usually do!

 

Regards

 

Jav  

Attachments:

• Statistics.JPG, 172 KB

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Permalink Reply by symmit on July 6, 2013 at 8:11

Well done on having a positive outcome! I am not a doctor, but from a look at your graphs it seems to me you are having large leaks during the night and the machine is hitting high pressures to compensate. Are you able to breathe through your nose? If so then you may find a nasal mask easier to seal and work with, also the machine is set for a wide range, it is likely that an increase in the minimum pressure may help even it out and reduce the need for it to vary as much in the night.

Take it slowly, speak to your clinic but it does sound like you are doing really well.

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Permalink Reply by Terry Vella on July 6, 2013 at 9:58

Jav, I think your high pressure is way too highyour low is 4 and high is 20, my AHI at my sleep study was 30 and my high pressure is 14, I only get to 14 when I have a huge mask leak. It is probably too late to do much about it now as you are taking it back.

Similar to what Symmit said, not sure if the high pressure is causing the mask leaks or the mask leaks is causing the high pressure.

Can you post me the screen from the Daily tab next to Statstics, that tab breaks up your data minute by minute for each night.

The best way to tell if your therapy is working is how you feel the next day, by the sounds of it you are getting good treatment but maybe not the best, but well done for have the energy to do the gardening.

It's hard when we are tired to do anything but staying heathly by exercising is extremely important to people with sleep apnea but any illness really.

Following on from Kath's point, I live in Australia and our system is different from yours, I know Kath had to buy her own machine so she could get the best treatment available but it does come down to money, good luck with your appt and keep us updated. 
 
Javed Iqbal said:

Hi Terry, I managed to import the data from the SD card and I have attached a screenshot (if it's worked). Not really sure if attaching pictures to posts is allowed but I noticed a link at the bottom of this page to 'upload files'. Anyway, if the picture will show then feel free to make comments about my statistics for the first 6 nights on trial with CPAP.

Incidentally, even though I struggled with the mask again last night I have today, for the first time in a long time, come home from being at work all day and had the energy to do the garden for 2 hours. This is significant to me because usually when I get home from work all I want to do is crash out and I usually do!

 

Regards

 

Jav  

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Permalink Reply by Kath Hope on July 6, 2013 at 11:00

Don't worry too much about the pressures Javed at the moment, as you're just on the CPAP Titration so the hospital have left them at default so they can see what pressures to set you up with when you go back.  Early signs are that CPAP is definitely the way to go for you though, which is great, and once you're set up correctly you should be able to get longer times on the therapy which should help even more with this new energy you're finding.  When do you go back?

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