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Sleep Apnoea Forum Bringing Help + Support to the Patient

 hello - I had been experiencing difficulty with sleep for a while and I kept waking with various dreams that I was drowning or suffocating, I dreaded going to sleep. I was seen by my cardiologist late December 2011 and in January 2012 he referred me to a respiratory- sleep consultant following some paroxysmal AF (atria; fibrillation) fast heart beat episodes that always started and stopped during sleep. Following an overnight test with a gadget on my wrist and finger- I was diagnosed with sleep apnoea. That was in Feb and I was provided with the automatic cpap machine. The first night was absolutely awful, I felt like I had been sleeping with my mouth around an air conditioning unit - my throat was sore and was chest felt raw - it was so distressing I didn’t go to bed on the 2nd night.

On the 3rd day I found this forum and also kaths site and took some advice from list members- I put some peppermint oil on a piece of card near the air inlet filter (that disguised the plastic smell) - I checked out some issues about making sure the mask fitted properly - and low and behold on the 3rd night when I tried it on I felt the suction of the machine around my nose and mouth. The machine was quiet! I then realised I had been sleeping all of the first night with it leaking!! I also play an iPod with ear phones to distract me from focusing on breathing and from wearing the mask and this helps me to drop off - i also learnt about the ramp system and use that.

I then purchased the fleece hose cover and then the hose lift and am now managing over 8 hours a night and sometimes 10 - 12 at weekend. I’ve recently been diagnosed with anaemia and feel that the sleep is now doing me the world of good. I actually look forward to going to bed. However I was troubled the other night and awoke with a fast heart beat again - when I checked the forum it seems pretty common. I have downloaded the sleepyhead software and looked at my stats- I am a complete novice to this and don’t understand any of the info its providing me with so I am looking and asking around for any handy guides as to what it all means. I think by the looks of things my mask was leaking a lot on that night - i use the mask that covers nose and mouth and I tried the nasal pad strip-it was too big, but i found and ordered the rezmed liners and they are brilliant and appear to stop leaks.

Anyway sorry to take so much space, just wanted to say I think I've done well in the few months I’ve had the machine, I’ve a lot to learn. I welcome and value the support that Kath and everyone on this list seems to give each other and being newly diagnosed am eager to learn. So does anyone know where I can find something that will explain what the sleepyhead software is telling me? I recently followed the thread about AHI and don’t understand – it looks as if below 5 is good....is that right?? If anyone could point me in any direction I would appreciate it,

 

warmerst wishes Cathy

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This is great to hear Cathy, and don't apologise for the length of your post.  Everything people put on here can be read by anyone, and you just never know how much you're helping someone (even non-members) by telling your story :)

If you have a click on the link at the top of this page "Kath's Blog" you will see I've done an A-Z of all the terminology relating to sleep apnoea etc.

Don't worry at this stage of all the graphs etc on the software.  You can see the general statistics, but if you click on "Daily" you will see something like what I've pasted below.  It tells me that on that particular day my AHI was 4.61 which means I had 4.61 apnoea/hypopnoea events per hour (well it's not really per hour, as I might have several hours with no events, and then other hours with a lot of events, but it averages these out per hour).  If you look underneath the Hypopnoeas were actually only 0.43, so most of mine was made up of Obstructive apnoeas (3.46).  The Clear Airway figure of 0.72, on my machine, indicates Central apnoeas (caused by the brain forgetting to breathe, but too high a pressure can also cause this, as can other factors) and you can see there was a bit of snoring going on (1.73).  You will see that my Hypopnoea events are a lot lower than my Obstructives, but before my nasal operation these were always very high.  The operation hasn't made a difference to the Obstructive events though. You can then just click on the calendar and you will get a different chart and so on.

You are correct in saying we need to aim for below an AHI of 5, and mine is often higher than this through various reasons.  If you are consistently high with no reasons, then pressure adjustments can help.

AHIApnea / Hypopnea Index 4.61
HypopneaHypopnea 0.43
ObstructiveObstructive Apnea 3.46
Clear AirwayClear Airway Apnea 0.72
RERAResp. Effort Related Arousal 1.44
VSnore2Vibratory Snore #2 1.73
PB/CSRPeriodic Breathing 0.00%
Cathy, well done, it is good that you can see and track your data, Kath is correct in everything she says. Your AHI is never the same and changes due to a number of reasons, temperature, humidity, what you eat, when you eat, medication, sleeping position etc, as Kath said as long as you are below 5 you are doing well. Non CPAP users AHI are between 0-5. The most important thing is how you feel an this an take people days or months to start to get the real effect.
I've posted this before, a cheaper alternative for mask liners and I know Kath makes her own to, good luck and keep postiong.

I bought some Remzzz liners a 6 pack and although they say to only use them once you can wash them and get about 5-6 uses. I then made a template of what I needed from their liners and went to a fabric shop and got 3 ft of 50% cotton/ 50 % poly fabric and cut out my own and they also last 5-6 uses, the next time I bought 3 ft of 50% cotton/ 50 % licra fabric. That last me about 3 months and costs about ten dollars.

Just came across this Cathy - a man who's done a video of using SleepyHead VIDEO LINK

Thanks for linking to my video! I wanted to do a quick run through f the software that I found very useful. Thanks for helping me find this site, it's great to know there is so much support for those with sleep apnea like us!

Thanks for joining us on here Richard.  Isn't the internet amazing?  We'd no sooner been asked for help re Sleepyhead when I came across your video, quite by accident, so it was great timing!  I reckon you have more knowledge on it than I do too, so really appreciate you joining us on here :)  I will link to your video to others too when the need arises.

Richard Pac said:

Thanks for linking to my video! I wanted to do a quick run through f the software that I found very useful. Thanks for helping me find this site, it's great to know there is so much support for those with sleep apnea like us!

Thank you kindly!

Kath Hope said:

Thanks for joining us on here Richard.  Isn't the internet amazing?  We'd no sooner been asked for help re Sleepyhead when I came across your video, quite by accident, so it was great timing!  I reckon you have more knowledge on it than I do too, so really appreciate you joining us on here :)  I will link to your video to others too when the need arises.

Richard Pac said:

Thanks for linking to my video! I wanted to do a quick run through f the software that I found very useful. Thanks for helping me find this site, it's great to know there is so much support for those with sleep apnea like us!

Thanks kath for the link it was really interesting and Richard you make it sound so simple so now i am gonna have a good look at my stats and see if if i can use the data to understand thisngs better,

thankyou x
 
Richard Pac said:

Thank you kindly!

Kath Hope said:

Thanks for joining us on here Richard.  Isn't the internet amazing?  We'd no sooner been asked for help re Sleepyhead when I came across your video, quite by accident, so it was great timing!  I reckon you have more knowledge on it than I do too, so really appreciate you joining us on here :)  I will link to your video to others too when the need arises.

Richard Pac said:

Thanks for linking to my video! I wanted to do a quick run through f the software that I found very useful. Thanks for helping me find this site, it's great to know there is so much support for those with sleep apnea like us!

Is anyone having trouble updating to the latest version?  I've tried loads of times and it keeps failing.  My version's working fine, but I just don't like to think I'm missing something new :D

I did have an issue with updating and I am sorry I have forgotten how to get over it. I emailed the company and they suggested a  different way to get around the update installation that worked, and unfortunately I don't appear to have retained that email.

Kath Hope said:

Is anyone having trouble updating to the latest version?  I've tried loads of times and it keeps failing.  My version's working fine, but I just don't like to think I'm missing something new :D

Thanks snoreyhead - at least it's not just me.  I'll look into it and probably email them.

Yay - I've fixed the update issue.  If anyone else is having trouble updating (mine kept failing for months) here's how to do it:-

Right Click on the SleepyHead Icon on your computer and select 'Run As Administrator' which will then open SleepyHead.  Once there, any updates will show and should now update successfully!

Yay, just fixed mine!

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