Marg

Female

Victoria

Australia

Profile Information:

Treatment Being Used, if any?: Other
If Machine Being Used, What Make or Model?: Am currently on third week of trial. Tried Resmed S9 autoset with nasal pillows initially. Dreadful for me felt I was suffocating with nasal pillows as i am a mouth breather tried hard though. Insisted on trialling full face mask, heaps better. Also switc hed to phillips auto machine. Now trying Resmed again with mask and fixed pressure [11]. Last night was first night with this latest modification - not too successful managed 4 hours with CPAP. Felt like it was blowing a gale in my mouth. Not sure what to do regards machines and am wondering what is the most popular auto machine and why? Hope Cath that you might be able to help and would eagerly appreciate other forum members opionions. thanks heaps, Marg ,Australia
If Mask Being Used, What Type or Name?: Resmed Quattro FX full face

Comment Wall:

Terry Vella

Margaret, I use the Resmed Autoset with a pressure range of 4-12 and don't feel it too bad, what Ramp do you have yours set up at mine is 30 mins, that means it strats low and ramps up after 30 mins. The other setting you need to get right is the ERP which helps when you exhale (breathe out) mine is set at the highest setting. I also use the Mirage Quattro, try mask liners, Kath sells them and you can make them yourself and make sure you have the hose coming from above your head either over your head board or you can but a hose lift from Kath. I also use a chinstrap as it keeps everything in place and keeps my mouth reasonably closed. You will never keep it close all the time because our jaws are so strong they will open your mouth when you are asleep. Give those things a go first, others may have some more suggestions.

May 18, 2012
Terry Vella

Marg, Kath maybe be able to make some suggestions, I had the same problem and spent a bit more and got the auto and love it. I was waking up in the middle of the night with the wind blowing in my face. People have different needs, alot love straight CPAP. The benefit with auto is you can change if you want. They can actually change a straight CPAP to Auto if you want but it will cost. The brand of machine really doesn't matter, they all blow air, the most important thing is the mask. It sounds like you need to stick with the FFM. The only thing with the machine is the look, also make sure the one you get doesn't have too many lights and doesn't make too much noise. Whichever one you decide makes sure you can adujst the Ramp and ERP they are designed for your comfort, also make sure you get them to show you how to change the temperature settings. It is probably best to start writing down your questions.

May 18, 2012
Terry Vella

I forgot the most important thing is your attitude towards it, if it is positive which it sounds like you are you will have a really good chance of success. It is daunting at the start but once you get your own machine and settle in an start feeling the benefits, you'll wonder what it was all about.

May 18, 2012
Kath Hope

Welcome to the forum Marg, and great to see how Terry's been helping you. Am just on my way back from a business trip and the train's pulling into the station, so will be back later...... Kath

May 18, 2012
Terry Vella

Marg, our system is different to yours, you get a prescription for your first machine and then have to buy it from a clinic. I would have gone that way anyway because like you I didn't really know much about it. The lady in the clinic has been helpful but I learn't most online. W don't go to hospitals for any of our equipment or reading of data they are mini clinics individually owned. One advantage we have is we can hire them for 3 months and try out different machines and masks then buy what we want, you can change as many times as you want during that time. I stayed with the same machine and changed masks five times. The cost of hiring then comes off the purchase price. We have to buy ours and if you have insurance you get about 25% back, if you don't you have to wait years. I'm not sure about repairs work etc from buying online. In Australia, we are not allowed to change our settings but you can find the info on the net how to do it. The lady at my clinic is very patient with me and it is only around the corner so I can drop in when I want. You can get the software off the net and download the data daily, most machine have a data capable screen which will give you basic info. The most important figure is your AHI, but this is only a guide, as you would need a proper sleep study everynight to see our true results. The AHI can be effected by a number of things i.e. meds, sleep position, weather, when we eat, what we eat, etc. I would be interested to hear what experiences others have had with online buying.

May 18, 2012
Kath Hope

Terry, Marg is in Australia like you, so you'll probably no more about the health system than us :)

May 19, 2012
Kath Hope

Marg, I would always purchase an APAP machine, and that way you have the benefit of being able to use it both as an APAP or a CPAP (the APAP varies the pressure, so that you can have it blowing at minimum pressure and it will only raise when it sense an apnoea. The CPAP is one constant pressure, which will blow at your prescribed pressure all night).

The mask liners Terry is talking about are called RemZzzs, and we can't sell them anymore, as another UK supplier has got sole rights now :( However, you would be better purchasing them in Australia direct from www.remzzzs.com Like Terry's told you, if you buy just the sample pack of 6, you can use them as a template to cut round and use your own material - like an old t-shirt, which will last a lot longer and can be easily washed.

The Hose Lift is an absolute Godsend, and we sell lots of them to Australia. They help keep the hose away from you during the night, and it swings from side to side to allow you to move. The link is HERE if you're interested. I also swear by the Mask Cleaning Wipes which you might be able to get in Australia.

Like Terry says, most brands are similar, but I've personally tried most of them and appear to fare better with the Respironics System One, but the Resmed S9 is good too. For some reason I breathe better with the Respironics one, which is why I got it.

Feel free to start a new discussion for any help you need. You are doing well at this early stage - I struggled for quite a while. You can read my story on the website HERE

Keep up the good work :)

Kath

May 19, 2012
Terry Vella

Sorry Marg, I didn't read where you were from, I go to a MCS clinic in Moorabbin and the lady there is fantastic to put up with me. Try to lease them for the first few months if yu can especially the mask unless you are really happy with the one you have selected. Like Kath said I make my own liners now (see below). MCS and most of the clinic sell them or you can get them over the net. Did you see a sleep specialist in Melbourne? I go to Melbourne Sleep Disorder Centre in the city and my specialist was on A Current Affair this week (not a bad story).

I bought some Reszzz 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 there liners and went to a fabric shop (Spotlight) 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 % lycra fabric. That last me about 3 months and costs about ten dollars. No need to do any sewing and you can get any coloured material you want.

May 19, 2012
Terry Vella

Marg, You should be able to change the Ramp, ERP and Humdity temperature yourself, the instructions are on the net or you should have got them with the machine. The maximum ramp is 30 mins so you are OK there. The ERP goes from 0-3 and 3 suits me best. Te ideal humdity temperature is a personal choice, I have mine set at 25c now we are in autumn/winter and will turn it down to 21-22c in Summer. Your AHI will probably keep going down as you get used to CPAP anything under 5 is good, that is what a person not using CPAP will have, unfortunately you will probably never get to zero so don't strive for that. Also if you happen to have one or two bad nights don't worry.

May 19, 2012