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Refreshed After 5 Years - Best Cpap Sleep Yet

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  • Refreshed After 5 Years - Best Cpap Sleep Yet

    HI ALL YOU LONG SUFFERING CPAP MASK/PILLOW USERS AND A HAPPY AND BREATH GOOD NEW YEAR.

    I AM WRITING THIS TODAY, NEW YEARS EVE 2008, AS I BEIEVE I COULD HELP A LOT OF YOU LONG SUFFERING CPAP USERS OUT THERE.

    BEST IF I START FROM THE BEGINING!! (always a good place to start!!)

    I AM A 47 YEAR OLD MAN, GOD KNOWS HOW LONG I HAVE HAD THIS "OBSTRUCTIVE SLEEP APNEA" BUT I HAVE BEEN DIGANOSED AND TREATED AT HOSPITAL OUTPATIENTS ABOUT 5 YEARS AGO.

    I HAVE BEEN MARRIED 18 YEARS AND MY WIFE TELLS ME THAT EVEN ON OUR HONEYMOON SHE HAD TO DIG ME IN THE RIBS TO "KICK START" MY BREATHING AND NIGHTLY THEREAFTER - REALLY WORRYING FOR HER I KNOW.

    LIKE MOST OF US SNORING/APNEA SUFFERERS PRE DIAGNOSIS, I HAVE HAD ALL THE COMMENTS OVER THE YEARS - SOME CRUEL, SOME JUST PLAIN FUNNY.

    I REMEMBER ONE PARTICULAR TIME I WAS ON A FERRY SHIP GOING ACROSS THE ENGLISH CHANNEL(OVERNIGHT CROSSING), WE SLEPT DOWN IN THE FREE "COURGETTES" CABIN/BUNKS WITH 3 SETS OF DOUBLE BUNKS IN EACH - MY WIFE AND SON (WHO WERE SOMEWHAT USED TO MY BOOMING SNORING) ON THE BOTTOM BUNK AND ME ON THE TOP - I HAD A LOVELY SLEEP AND WOKE UP ABOUT 7 AM TO GO TOILET AND HAVE A WASH AND FRESHEN UP. WHEN I GOT OUT OF BED TO MY SUPRISE THE OTHER FOUR BUNKS WERE EMPTY, MY INITIAL THOUGHTS WERE THAT WE WERE LATE GETTING UP BUT ON ENTERING THE SHIPS CORRIDOR I WAS AMAZED TO SEE THE PASSAGEWAY FULL OF PEOPLE IN SLEEPINGBAGS? CAREFULLY PICKING MY WAY THROUGH THEM TO THE TOILET, ONE OF THE GUYS WHO HAD BEEN IN OUR ROOM/COURGETTE MET ME AS HE LEFT THE TOILET BACK TO THE CORRIDOR - HAIR ALL A MESS, EYES ON MATCHSTICKS, DREARY LOOK FROM A BAD NIGHTS SLEEP, HE LOOKED AT ME AND PROCLAIMED "UNBELEIVABLE MAN, UNBELEIVABLE!!!". I DONT THINK I WAS THE MOST POPULAR CHAP THAT MORNING - I STILL HAVE A CHUCKLE ABOUT IT NOW.

    IVE HAD COMMENTS LIKE - "YOU COULD SNORE FOR BRITAIN IN THE OLYMPICS"!!! ETC,ETC.

    ANOTHER TIME IT GOT PARTICULARLY NASTY WAS WHEN WE WENT CAMPING IN CORNWALL, WE HAD DELIBERATELY CHOSEN A SPOT WELL AWAY FROM OTHER CAMPERS/TENTS AND INFORMED THE OWNERS ABOUT MY EXTRA LOUD SNORING - WE WENT OUT FOR THE EVENING AFTER SETTING UP CAMP - ON RETURNING THERE WERE LOTS OF OTHER CAMPERS/TENTS PITCHED AROUND OURS!! OH NO, I THOUGHT, AND ITS TOO LATE TO LET THEM KNOW ANYTHING!! - SO OFF TO BED WE ALL WENT - ABOUT 3 IN THE MORNING, I WAS AWOKEN BY VERY LOUD VOICES OUTSIDE THE TENT, RANTING AND RAVING, SWEARING, THREATENING, ETC - YOU CAN IMAGINE MY WIFE AND YOUNG SON WERE VERY FRIGHTENED - I JUST WANTED TO GO AND POP ONE OF THEM ON THE NOSE!! BUT MY WIFE CALMED ME DOWN AND THEY WENT AWAY AND I TRIED TO STAY AWAKE THE REST OF THE NIGHT.

    ANOTHER TIME I HAD TO GO TO STAY IN HOSPITAL FOR AN OPERATION, UNRELATED TO MY SNORING/APNEA. I WAS ADMITTED TO THE WARD AND EXPLAINED TO THE NURSE THAT I WAS A CHRONINIC VERY BAD SNORER AND WOULD BE BETTER IF I HAD MY OWN ROOM IF POSSIBLE, BUT I THINK SHE THOUGHT THAT I WAS JUST AFTER A SINGLE ROOM AND DISMISSED IT, I AGAIN WARNED HER THAT IT WAS NOT FAIR ON OTHER PATIENTS IN THE WARD, BUT SHE SAID "IT CANT BE THAT BAD" AND LEFT. LIGHTS OUT CAME AND OFF TO SLEEP I WENT - NEXT THING I KNOW, IM GETTING HIT OVER THE HEAD BY THE CHAP IN THE NEXT BED LEANING ACROSS WACKING MY HEAD WITH HIS WOODEN WALKING STICK!!! - I WAS IN A SINGLE ROOM THE NEXT NIGHT THANKS TO ALL THE COMPAINTS.

    SO, AS MOST OF YOU LONG SUFFERING PEOPLE CAN TESTIFY, ITS NO LAUGHING MATTER!!!:

    ANYWAY, HERES THE BEST BIT - AS I SAY, I HAVE BEEN ON A CPAP MACHINE FOR THE LAST 5 YEARS - AS I AM ON A VERY HIGH PRESSURE SETTING I HAVE HAD GREAT TROUBLE WITH GETTING A SYSTEM/MASK/PILLOWS TO FIT PROPERLY SO THAT I CAN GET A REGULAR NIGHTS SLEEP EVERY NIGHT?

    IN THE 5 YEARS I MUST HAVE TRIED EVERY TYPE OF NASAL MASK "SMALL, MEDIUM, LARGE", MANUFACTURER "FISHER & PAYKEL, RESPRONICS,ETC,ETC", NASAL PILLOW, FULL FACE, ETC, ETC, ETC.

    HERES THE MAIN PROBLEM, AS MOST OF YOU GOOD PEOPLE WILL AGREE IM SURE? BECAUSE OF THE HIGH PRESSURE, THE NASAL MASK ALWAYS LEAKS, NO MATTER HOW TIGHT, LOOSE, MEDIUM, YOU FIX IT - THE TIGHTER YOU PULL IT THE MORE UGLY MARKS AND BROKEN SKIN TO THE BRIDGE OF YOUR NOSE, SORES, ETC. I MUST SAY UP UNTIL TWO WEEKS AGO, I WAS RESIGNED TO THE NASAL MASK "FISHER AND PAYKEL 407 SMALL" (ABOUT THE BEST OF A BAD BUNCH!!) AS IT HAD THE FLEXABLE TUBE AND THE VENT WITH LOTS OF SMALL HOLES (LESS NOISE IN MY EXPERIENCE), BUT STILL NEVER HAPPY AS I HAD THE CHOICE OF EITHER, BLOOD SHOT EYE IN THE MORNINGS FROM CONSTANT PUFFS OF AIR LEAKING INTO MY TEAR DUCT (MEDIUM TIGHT) - CUTS/SORES AND STRAP MARKS ON BRIDGE OF NOSE AND SIDES OF NOSE AND BAD CHEEK STRAP MARKS (TIGHT FIT) OR FALLING OFF/CONSTANT LEAKS AND NOISE, ETC (LOOSE FIT).

    I HAVE TRIED RESPRONICS BREEZE NASAL PILLOWS/HEADGEAR IN THE PAST BUT FOUND THE METAL HEADGEAR SLIPS THE PILLOWS OUT OF PLACE ON TURNING ON THE PILLOW AND A LOT OF AIR LEAKAGE AROUND THE NOSTRILS, SO I GAVE UP ON THAT ONE AFTER ABOUT 3 WEEKS OF TRYING ALL SORTS OF WAYS!!

    TO AVOID ALL/ANY OF THESE SYMPTOMS, I WAS WEARING MY CPAP MASK ONLY ABOUT 3 NIGHTS OUT OF 7 (TO GIVE MY FACE A REST FROM ABUSE!!).

    THIS IS THE BEST BIT - LET ME TELL YOU - AND HOPEFULLY A VERY HAPPY 2009???????

    I HAVE BEEN READING A LOT OF FORUMS FROM AROUND THE WORLD, ESPECIALLY OUR COUSINS IN THE USA, AND I GOT SOME GREAT ADVICE FROM THEM.

    AROUND EARLY DECEMBER 2008, I READ A LOT OF GOOD REPORTS ON A NEW SYSTEM CALLED "OPUS 360 - NASAL PILLOWS" FROM "FISHER AND PAYKEL".

    HAVING PREVIOUSLY TRIED AND FAILED WITH NASAL PILLOWS, I WAS VERY DUBIOUS. BUT I THINK MY XMAS WISH HAS COME TRUE??

    I HAVE BEEN USING THIS SYSTEM, WITH A BIT OF MODIFICATION (AGAIN INFORMATION BY OUR EXPERIENCED AMERICAN COUSINS) FOR JUST OVER 2 WEEKS NOW - THE VERY FIRST NIGHT IT WAS AS IF I HAD BEEN REBORN, HONESTLY MY FRIENDS.

    THIS SYSTEM IS SO LIGHT, YOU HARDLY KNOW IT IS ON AND WITH THE COMBINATION OF THE VERY QUIET VENT SYSTEM (LOTS OF LITTLE HOLES) AND THE 360 DEGREE SWIVEL BALL AND SOCKET JOINT AT THE NOSE AND THE 360 DEGREE SWIVEL AT THE CONNECTION PIPE IT IS VERY MANOUVERABLE ON THE PILLOW.

    I MUST SAY IT IS A PLEASURE TO WEAR IT AFTER THE LAST 5 YEARS OF NEAR HELL!!!

    THE MEDIUM NASAL FITMENT WORKS BEST FOR ME. ATTACHED WITH THE PIPE/TUBE OVER THE HEAD (IT FITS WITH VELCRO ATTACHMENT UP OVER YOUR HEAD).

    A FEW LITTLE NIGGLES - A VERY, VERY LITTLE AMOUNT OF ESCAPING AIR, BUT IT IS NOT NOISY AND DOES NOT BLOW INTO ANYWHERE!! AND I THINK BECAUSE I HAVE VERY SHORT HAIR THE STRAP TENDS TO RIDE UP YOUR HEAD WITH CONTACT ON THE PILLOW, AND PUSHES THE NASAL DEVICE OUT OF SKEW. BUT I HAVE MODIFIED THIS WITH ANOTHER SIMPLE STRAP WITH VELCRO ATTACHED FROM THE BACK STRAP DOWN AND AROUND MY CHIN - THIS KEEPS IT FROM RIDING UP. (DONT KNOW IF MY DOCTOR/HOSPITAL WOULD APPROVE? BUT IT CERTAINLY WORKS FOR ME).

    IM NOT SAYING THIS WILL WORK FOR EVERYBODY OUT THERE, BUT I DO HOPE MY EXPERIENCE HELPS SOME OR HOPEFULLY ALL OF YOU LOVELY PEOPLE.

    GOOD LUCK AND GOOD SLEEPNG FOR 2009 - HENRI xxxxxx

  • #2
    Great post mate, a little hard to read in capital letters, which by the way means your are shouting when you post on a forum.
    Regards and Good Luck, Barry
    Start Weight 167.3 kg 09/05/08 Op. Date 08/06/08 163.9 kg NOW 118.4 kg Lost 48.9 kg or 7 Stone 10lbs 58% of Est. Total Loss, BMI was 50 now 35.3

    Comment


    • #3
      hi barry,

      sorry, did not know about the capital letter thing but i do that for the sake of my eyesight - another thing in deteriation!!!

      Comment


      • #4
        Way to go!

        Your numbers continue to impress, Puffin! How about a post on how your life is changing as you decrease in weight. I'm still stuck - or increased over Christmas, I suspect!

        Tigers Fan
        Respironics REMstar 'M' Series APAP.
        Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

        Comment


        • #5
          Hi Henri,

          Welcome to the forums. Thanks for the great post, what an introduction it was. An inspiration for those fearing the prospect of wearing the mask. It's great when people share their stories and add some words of encouragements. Thanks.

          Comment


          • #6
            Nasel Pillows

            I use the f & p opus 360 nasel pillows and the Resperonic comfort gel small/medium nasel mask, I alternate between each system, I have found is what appears to be a low pressure setting with the mask feels like a high pressure with the pillows.
            I was very interested by the addition of the chin strap as I too find the pillows do move and I get air jets blasting all over, the pillows are very quiet and light to use, I am unable to get used to the hose going over my head, can I ask where you obtained the strap and how did you fit.
            Stefan

            Comment


            • #7
              opus 360

              hi mr stefan,

              i hope my post will help you more now.

              the chin strap i made up myself from a spare over the head strap - cut it so the velcro ties attach to the loops left by the headstrap of the opus 360 at the back - running down the back of my head, then round to my chin, with the soft (comfort) bit of the spare strap fitting between my chin and bottom lower lip (in that indent!!)

              it does not slip up or down as the head gear of the opus 360 keeps it quite firmly in place the higher it is on your head.

              hope this makes sense? as i say its all trial and error really. ive been trying for years now - and the last few months have been great (still not perfect but i dont think that will happen anyway!!).

              at least getting 6 - 8 hours with no pee wake ups.

              the question of the pipe getting in the way - i find that if i tuck it behind the pillow with about 10 - 14 inches extra pulled through (for turning, twisting, movement of head) as the pipe end also has a swivel joint at the connection.

              i have thought about fitting a sort of easy slide ring over my bed so that the pipe will be free to move but have not got around to experimenting!!!

              good luck and sleep well my friends.

              Comment

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