Newbie Introduction - and a question!

Hi everyone,

I'm a newbie to sleep apnea - and this site - although I have been researching everything I can - about machines, sleep apnea, masks etc. I live in Australia and was diagnosed at our local Sleep Centre.

My results were: Moderate to Severe Apnea - in supine and REM sleep. It was measured as an RDI of 28.5 per hour. Hypopnoeas with a mean duration of 19.2 seconds. Lowest oxygen saturation was 89%. Leg movements - 37 per hour in periodic sequence. Average HR was 58 per minute.

When I was shown the results - the doctor referred to the hypopneas in the supine and didn't really explain the rest of the graph - even though I asked. I went in for my second night - using the Amara View mask - small. (In fact, they battled to find a suitable mask - said my face was so small!) They debated the nasal mask but felt I would have trouble keeping my mouth closed - even with a chin strap - and also I only have one useful nostril! My maximum pressure was 14.

They gave me a Philips Dreamstation machine for a 2 week trial - I battled with it some nights - ramp time was about 20 minutes - starting at 6. The air was often cold even though the humidifier was set at the maximum setting and I kept the tube in bed with me. I found I had to continually hit the ramp button to start again as I couldn't get to sleep as the pressure increased.

At times I felt like throwing the mask but persevered and kept it on the full night. Some days I felt better - other days I had headaches - I think due to the cold air. I had no access to my information as it was 'locked'.

When I went back for review - I got the results: Average time large leak per day - 1 min 21 sec; Average AHI - 3.1 Pressure at 14.

I was then told to come back for review in 4 months and go and get a machine. As it was 6 pm - I was left high and dry without one. The next day I went to our chemist in town who is the major CPAP supplier. They also do at home trials. The woman there gave me more information than I'd had at the Sleep Centre. I told her the doctor said a manual machine would do as I was coping with the 14 pressure (I wasn't) and didn't need an automatic machine.

She studied my results and said the reason would be all the central apneas I was having just after falling asleep - I needed that pressure to start early. I was stunned - no one had mentioned these! She suggested the Fisher & Paykel ICON which has the Sense Awake setting. I have been using it for two nights - it certainly feels better - in that I can get to sleep BUT - I'm finding the controls so confusing!!!

I have read the manual - which is almost useless - I finally got to my AHI - which was 4.5 the first night - but surprised at the leak rate - 44??? I haven't been able to get any new data from it today.

I have downloaded the Sleepyhead app - pulled the odd looking USB stick out of the machine - and of course my computer doesn't read it. So my question is - how on earth do I get detail on the data? Also - will I have to choose between more comfort going to sleep - or the struggle to operate the machine (I can hardly read the symbols on it!). Is there any other machine that would be both easy to read and also give me this level of comfort? I am trialling this machine for a week - but would like to try another before I decide.

Thanks for taking the time to read this. It is much appreciated!!!

Heather,
Australia

heatherb,

I saw you read my post on the F&P Icon. I see that none of the pros on this site answered your post... so even though I am also a newbie, let me take a shot. At least it may bump your post so it gets a another look.
I don't know if you have the Icon or the ICON +. The plus is the newer machine. In terms of use and how bad the LCD screen and instructions are, try the youtube videos from the links below, they show someone using the menu and it helps to understand the icons on the screen. I also think the navigation is bad, but at least the videos will help. There are more on youtube, just keep browsing.
I feel the ICON is a competent machine, if you have the Auto, not the Premo or Novo. The latter 2 are CPAP machines, not APAP. My understanding is that F&P is much more popular/available in AU than the Resmed Airsense Autoset. I think the latter is pretty expensive to purchase locally there and people go to the trouble of purchasing in the US and shipping. I think you can make good progress on the ICON while deciding, if it is an Auto model.
I have seen posts on this forum that say that the ICON data is compatible with sleepyhead, but I am not sure how to get the data off the proprietary USB onto your computer to use with Sleepyhead. Others here can help with that.

Best of luck,

https://www.youtube.com/watch?v=nzk1K4S22X4
https://www.youtube.com/watch?v=pKRrUZS7u1U
https://www.youtube.com/watch?v=gwfyQsQcg0U
https://www.youtube.com/watch?v=KluQuVAKrsQ
https://www.youtube.com/watch?v=rV0QWOTHJ5g

Hello and welcome. I'll let others who know your machine options deal with that. Were centrals mentioned based on your sleep study results or machine data? If those are deemed significant, it could make a difference in machine choice. Since your events are more when supine, taking steps to assure you cannot roll onto your back might enable you to use a bit lower pressure. You'll have to experiment to see. I've read on here some wear a backpack stuffed with a pillow to maintain a side position.

About those limb movements - was there any mention of treating them? Is there anyone who observes you sleeping to tell you if they are still an issue while on CPAP? Some people's movements improve on CPAP, but some people's movements worsen. When periodic limb movements and sleep apnea coexist, they can vie for prominence during sleep. Whichever wakes you first gets counted in the stats. It can be hard to get a full picture of either disorder. It's called masking. Can't tell how severe the other could be if one is treated allowing the other to more fully manifest. Not something you necessarily have to address yet. I'd get the CPAP stuff settled first and see how you do. Just keep it in mind if you have persistent sleep issues even after you adjust to CPAP. If so, drop me a PM if I miss your post.

mdemers800 wrote:heatherb,

I saw you read my post on the F&P Icon. I see that none of the pros on this site answered your post... so even though I am also a newbie, let me take a shot. At least it may bump your post so it gets a another look.
I don't know if you have the Icon or the ICON +. The plus is the newer machine. In terms of use and how bad the LCD screen and instructions are, try the youtube videos from the links below, they show someone using the menu and it helps to understand the icons on the screen. I also think the navigation is bad, but at least the videos will help. There are more on youtube, just keep browsing.
I feel the ICON is a competent machine, if you have the Auto, not the Premo or Novo. The latter 2 are CPAP machines, not APAP. My understanding is that F&P is much more popular/available in AU than the Resmed Airsense Autoset. I think the latter is pretty expensive to purchase locally there and people go to the trouble of purchasing in the US and shipping. I think you can make good progress on the ICON while deciding, if it is an Auto model.
I have seen posts on this forum that say that the ICON data is compatible with sleepyhead, but I am not sure how to get the data off the proprietary USB onto your computer to use with Sleepyhead. Others here can help with that.

Best of luck,

https://www.youtube.com/watch?v=nzk1K4S22X4
https://www.youtube.com/watch?v=pKRrUZS7u1U
https://www.youtube.com/watch?v=gwfyQsQcg0U
https://www.youtube.com/watch?v=KluQuVAKrsQ
https://www.youtube.com/watch?v=rV0QWOTHJ5g

Thanks for your reply! The machine I have on trial is the ICON +. I will have a look on YouTube. I'm slowly working it out - but it's the transfer of info which I'm unsure about. In Australia the F & P is cheaper than Philips Dreamstation or Resmed Airsense - but they are also available. The ICON is certainly working and I really like the Sense Awake feature - it's the controls that seem to be inferior to the other machines.

Thanks for taking the time to reply to my question!!!

kteague wrote:Hello and welcome. I'll let others who know your machine options deal with that. Were centrals mentioned based on your sleep study results or machine data? If those are deemed significant, it could make a difference in machine choice. Since your events are more when supine, taking steps to assure you cannot roll onto your back might enable you to use a bit lower pressure. You'll have to experiment to see. I've read on here some wear a backpack stuffed with a pillow to maintain a side position.

About those limb movements - was there any mention of treating them? Is there anyone who observes you sleeping to tell you if they are still an issue while on CPAP? Some people's movements improve on CPAP, but some people's movements worsen. When periodic limb movements and sleep apnea coexist, they can vie for prominence during sleep. Whichever wakes you first gets counted in the stats. It can be hard to get a full picture of either disorder. It's called masking. Can't tell how severe the other could be if one is treated allowing the other to more fully manifest. Not something you necessarily have to address yet. I'd get the CPAP stuff settled first and see how you do. Just keep it in mind if you have persistent sleep issues even after you adjust to CPAP. If so, drop me a PM if I miss your post.

Thanks for your reply kteague. Centrals were mentioned based on my sleep study results. The girl at the pharmacy explained my results to me. She showed me how often I was having them just after falling asleep. They are happening when I am on my side. I normally am a side sleeper but sometimes end up on my back. Re the limb movements - no one has mentioned them! On my second result while trialling CPAP leg movements were 14.7 and not in periodic sequence - so a change from my first study. That is interesting information re the masking of leg movements vs the apnea. I'm just stunned they go to the trouble of monitoring all these things, yet tell you so little!

I really appreciate this information!