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On the disparity between hope and reality.......or CPAP, it cures the snoring BUT....

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  • On the disparity between hope and reality.......or CPAP, it cures the snoring BUT....

    A few months in now and I am finding that the things manufacturers/medics tell you seem to relate to some distant ethereal plain as opposed to reality.

    To be fair I should point out that my energy levels are higher than for a long time and my snoring has vanished.....but......

    Mask:
    I have a full face mask. I tried a nasal mask briefly but all that happened here was that the air diverted through my mouth with the rattling sound of a vibrating uvula. I tried a chin strap but this just made me blow raspberries as well. Short of stitching my mouth closed i ran out of options so went back to full face. Not sure of the make, looks a bit like the mojo with this pad that "rests lightly on the forehead" according to the instructions. Right. The pad is adjustable because someone has noticed that xy foreheads are not the same as xx ones. Unfortunately the adjuster is very flimsy and with the slightest pressure adjusted itself back, and finally would not adjust at all. In the end I secured it at the desired angle then entombed it in industrial 2-part epoxy.
    The mask fits perfectly and forms a perfect seal with this sort of silicone cushion that is meant to inflate or something. works great up to about 5 cm water. (brief note, i can cope with pressure in pascals, millibars, mmHg, and even atmospheres, but which lunatic decided cm of water was a measurement? Whats next, furlongs of paregoric?) As I need 18cm water to get symptomatic relief the mask leaks like an incontinent cat. if you move it farts in your face and it spends all night blowing in your ear, in your eyes, in fact anywhere but down your throat. Now I know enough fluid mechanics to know about hydraulic damming, so i know the increase in pressure is probably enough even with leaks, but you try sleeping with a maniacal device blowing in your ear! Solution? ignore the saccharine phrases about "tighten the straps so that the mask is gently but firmly held in place" and pull the darn thing as tight as possible. Mask on time now resembles an 18th century lady putting on her corset.

    The HOSE: the hose is resilient, and despite bearing a considerable resemblance to a gooses windpipe (trust me) is functional....though i give the rubber attachments at each end 1 year tops before they deplasticise. honestly hose fitting technology has advanced since the 19th century guys, trust me. But the hose is resolutely THERE. now this doesnt prevent sleep but it does lead to problems. My subcoscious recognises something is THERE and so prevents me from rolling in my sleep . (reflex caused by co-sleeping with small baby due to idiot midwife advice to wife). so i stay in the same position all night. I now wake up refreshed but bent double with backache that takes about an hour to work out each morning. This is a consequence of side sleeping, but i cannot sleep on my back. never have.

    The Air: I read a lot about hose heaters and humidifiers etc. and all i can say is ARE YOU ALL STARK STARING MAD? I sleep in a room with no heating and the windows open , even in midwinter. I hate sleeping hot. well now the room temperature may be low but inside my mask is like a jungle , and no i do not use a humidifier and heater, its just because the air is compressed and held next to a hot thing (me). Does anyone make hose CHILLERS? please?

    Finally, as I mentioned before...the farting. the terrible, terrible farting. My wife tells me i have now developed the ability to sleep-fart but this still does not lessen the incredible morning pressure of wind that must be dispersed. This dispersal takes about 2 hours of one fart every 5-10 seconds and due to the time constraints largely contributes to the unpleasantness of commuting for others on my train.

    As I say, more alert, better sleep....but unexpected consequences. Perhaps the manufacturers and vendors of the kit could be a bit more realistic? "clamp the mask to your head like a limpet to a rock" "CPAP is an effective treatment for OSA but will cause damage to the ozone layer and the olfactory system of those around you" "You may find that you need to take out a bulk account at the osteopath during CPAP treatment". these are some suggested phrases.

    Oh, and to the makers of the mask and hose.....one day I will find you.

  • #2
    Hi and welcome!

    Fantastic first post Let's see what we can make of it.

    Since Jan 1st this year, the official pressure units used in CPAP in the UK are hectopascals, hPa. CM H2O is sooooo 2008.

    Getting a great mask fit at 18 hPa is difficult in anyone's book. If you're not clocking the desired hours, it may be better to lower the pressure so at least you get through the night. That's something for your consultant to consider.

    Your hose problem is easily fixed with a Hose Lift. 20 second installation and all of a sudden it's not "there" anymore but "up there" with plenty of slack.

    You're the first to want hose chillers! I wonder how you route your hose for it to be warmed by you.

    The flatulence is another side effect of the high pressure. No advice here unfartunately.

    Do you remember how bad your OSA "count" was in terms of your apnoea hypopnoea index? If not severe, there are CPAP alternatives that solve all of your issues, most likely anyway.

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    • #3
      Hectopascals eh? so almost, but not quite, an SI unit. at least vaguely understandable. I must tape a sticker with hPa on it over the display in the appropriate place.
      I am getting the desired number of hours thanks to retrofitting the mask with epoxy and the strappage, though i think the next thing to go will be the strap attachment. I had a consult of the booklet and the mask is a RESMED ultra mirage full face mask. for those who may be considering it dont. It has all the design sophistication of a morris minor and none o the charm. If I could get rid of the backache that would be a blessing so i may well give your hose hoist a try.

      The heating isn't in the hose but in the mask. the mask fills with exhaled breathe when you breathe out (evolution foolishly failing to provide me with a blowhole) and so the interior of the mask is hot and moist. Now I don't object to hot and moist things in bed but not the air i breathe. I have been thinking of fitting a peltier cooling element to the back of the S8 unit but they havent made things easy on the air intake for retrofitting and the machine is NHS property so they may just object if i start hotwiring it.

      AHI no idea, but I was doing 23 apnoeas an hour according to the monitor (if that is the same thing).

      With the flatulence i think i thought it might get better over time but unfortunately not. I do note that it changes your gut flora considerably. if anyone else out there is experiencing this i would recommend using some probiotics

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