[Guest]

I HAVE BEEN RECENTLY BEEN TOLD I HAVE SLEEP APNEA. I HAVE HAD TWO SLEEP STUDIES IN THE LAST 6 MONTHS AND THE DOCTOR PUT ON A REGULAR OXYGEN MACHINE FIRST, AND THAT DIDN'T WORK AND AM NOW ON THE CPAP MACHINE WITH A HUMIDIFIER. I THOUGHT THE MACHINE AND FACE MASK WAS WORKING AT FIRST, AND WAS UNCOMFORTABLE WITH THE MASK, AND AIR LEAKING OUT ALL THE TIME; IT WOKE ME UP.
YESTERDAY THEY BROUGHT A NEW MASK - THE NASAL PILLOW. I TRIED IT AND IT ALSO WAKES ME UP WITH THE AIR NOISE AND THE AIR PRESSURE. I DON'T LIKE THESE DEVICES AND MAYBE I AM NOT GIVING IT ENOUGH TIME.
I ALSO WAKE UP AND WANT TO EAT - USUALLY SWEETS. DO YOU HAVE ANY SUGGESTIONS? I WAS TOLD THE SURGERY IS VERY HARD AND ALSO PAINFUL, BUT I SURE DON'T LIKE THESE MACHINES THAT KEEP WAKING ME UP AT NIGHT.
SHEILA

[Guest]

I have had a similar experience with the CPAP and BIPAP machines. This started with me 8 years ago. First they tried Septioplasty because I had a deviated septom and it was thought that having one side of my nose somewhat blocked could be causing the problem. While they were doing that, they also did rhinoplasty to open up the nasal airway and make me breathe better through the nose. This was very painful and took about 2 weeks of recovery time due to the bleeding that just did not want to stop. After recovering from this surgery the snoring was still there but I did stop having the reoccuring sinus infections that had plagued me 2 or 3 times a year. That is when they sent me back to the sleep lab a 2nd and 3rd time and suggested the CPAP machine. They raved about the improvement from 80% apnea to 2% by using the CPAP machine in the lab. That was good for them but it was the worst night of sleep in my life. I kept getting tangled in the hose, the mask rubbed blisters on my face and nose, it gave me a headache and the forced air bloated my stomach making me belch and have stomach pain similar to gas. They convinced me to take it home because I would get use to it. I used it for about two weeks and could not stand it. They mentioned palate surgery and jaw surgery and both sounded too extreme at the time. I gave the stupid machine away and learned to sleep on my stomach with my arm up over my head propping my jaw open. I found that this would allow me to sleep without snoring as long as I didn't roll over on my back. I move around a lot while I sleep and would go from side to side, left arm to right arm, diagonal across the bed. This worked great for me but drove my wife right out of the bed. We have been sleeping in separate rooms for 5 or 6 years now. Recently, my doctor who is also a personal friend suggested that this can't continue. It is dangerous to sleep by myself with this condition because I actually stop breathing and gag myself awake several times a night which eventually will kill me. Besides, my wife and I really would like to sleep together. I went back to the sleep lab 2 more times. This time they gave me the BIPAP machine. Same thing with bilevel pressure so it doesn't fill my stomach with air causing the "gas" pain. The also gave me the nasal pillows which do not rub blisters but will not stay on my face during the night. The main problem I have with it this time is nasal bleeding. I have used saline solution and humidifiers. I just hate that machine! I went to an ENT Doctor to explore the surgery option again. He said he has been succesful in treating OSA with surgery but it was generally 50% effective and primarily relieves the snoring more than the apnea. He grabbed my tongue with a gauze pad, pulled it out and looked at my throat. He said, Oh yeah, I can definitely make improvements in here that will give you more like a 75% chance of relief. He described UP3 surgery. Laser surgery to remove most of the Uvula and reduce the palate and muscles at the base of the tounge and sides of the throat, opening up the whole airway. I am scheduled to have this surgery Wednesday morning, 2/19/03. That is why I can't sleep and am up reading all the information I can find on Sleep Apnea and the treatment of it. I'll report back on how it went in a few days. If anyone reads this and has advice or comments, speak fast, my uvula only has two days to live...
[quote] I HAVE BEEN RECENTLY BEEN TOLD I HAVE SLEEP APNEA. I HAVE HAD TWO SLEEP STUDIES IN THE LAST 6 MONTHS AND THE DOCTOR PUT ON A REGULAR OXYGEN MACHINE FIRST, AND THAT DIDN'T WORK AND AM NOW ON THE CPAP MACHINE WITH A HUMIDIFIER... [/quote]

[Guest]

Well I guess I am the only one reading this so I'll be brief. I had the UP3 surgery yesterday and it was not that bad. I was suprised to come out of the recovery room feeling as well as I did. It feels like I have a bad sore throat. I have liquid pain medication that I take every 4 hours and I have had 2 gallons of gatorade, another gallon of water, soup, apple sauce. I'm gonna be OK. Thanks for asking.
[quote] I have had a similar experience with the CPAP and BIPAP machines. This started with me 8 years ago... [/quote]

[Guest]

TOM
IT SOUNDS LIKE YOU HAVE HAD A LOT OF PROBLEMS, BUT HAVE PERSUED TO FIND A SOLUTION. I AM GLAD YOUR SURGERY WENT WELL, AND WOULD LIKE TO KNOW HOW IT WORKS FOR SLEEPING BETTER.
I AM TO THE POINT NOW, THAT I DON'T EVEN WANT TO HAVE MY MACHINE ON AT NIGHT, AND FEEL GUILTY I AM NOT USING IT, AND THINK I JUST HAVE TO TRY HARDER. I READ SOMEONE ELSE'S MESSAGE, AND THEY SAID THEY HAD NASAL OBSTRUCTIONS, AND I KNOW I DO. I HAVE A HARD TIME BREATHING THROUGH MY NOSE, AND HAVE SINUS PROBLEMS. I HAD ONE SURGERY SEVERAL YEARS AGO, AND IT SEEMED TO HELP FOR AWHILE.
I MAY HAVE TO HAVE THE KIND OF SURGERY YOU HAD, BUT WILL INVISTIGATE IT MORE.
REPLY IF YOU LIKE,
SHELAN
[quote] Well I guess I am the only one reading this so I'll be brief. I had the UP3 surgery yesterday and it was not that bad... [/quote]

[Guest]

I also have been told that I have severe sleep apnea. I wake at night at times and am drowning/choking and cannot catch my breath. I snore very loudly even on my sides. Very scary. I sleep with the bed elevated and also have Gerd. My doctor scheduled me for the sleep studies and checking with PHCS/PPO, they do not cover any of this nor will they pay for the CP machine. Is this unusual for an insurance company not to pay for something necessary? Has anyone else run into this? I am desperate in getting a machine.

Thanks
[quote] I HAVE BEEN RECENTLY BEEN TOLD I HAVE SLEEP APNEA. I HAVE HAD TWO SLEEP STUDIES IN THE LAST 6 MONTHS AND THE DOCTOR PUT ON A REGULAR OXYGEN MACHINE FIRST, AND THAT DIDN'T WORK AND AM NOW ON THE CPAP MACHINE WITH A HUMIDIFIER... [/quote]

[Guest]

I have had problems with the masks for my bipap machine. I have been on it for two years and did not know I was to get them replaced every 6 months or so. the first mask was a small and it was TOO BIG and I got no relief. they brought me a second mask that was a PETITE and it was just right. When my grandson put a hole in the gel pad, they sent me a small mask again. It did not work. They sent ma a gel mask and air leaked constantly around my mouth. I called and they again brought out a small because they stopped making petite size masks.

My apnea has been worse. I am a home health aide and fall asleep at clients homes as well as in the car between homes. I drive 30 miles and pull off to sleep in DQ and then in a grocery store 20 minutes later. I am so tired ALL the time. I have wrecked once and am afraid to drive but with my position I must drive daily.
I scheduled a trach for 4/24/03 and hope to have 99% relief.
Wish me luck...
[quote] I have had a similar experience with the CPAP and BIPAP machines. This started with me 8 years ago... [/quote]

[Guest]

HI,
I DIDN'T KNOW THEY MADE DIFFERENT SIZE MASKS. I PUT THE STRAPS ON MY MASK TO MAKE IT TIGHTER, AND NOW I SEEM TO GET A HEADACHE FROM IT BEING SO TIGHT. I ALSO TOOK OFF THE OLD STRAPS AND BOUGHT CLOTH STRETCH HEADBANDS AND TIED THEM ON THE MASK, AND THIS IS MORE COMFORTABLE THAN ALL THE VELCRO THAT GOT CAUGHT IN MY HAIR. I WILL HAVE TO
LOOK INTO THE PETTITE SIZE MASK.
I CALLED MY DOCTOR AND TOLD HIM ABOUT NOT BEING ABLE TO WEAR THE MASK AND HE SAID I NEED TO CALL LINCARE TO GET IT FITTED BETTER. THE PROBLEM I HAVE IS IT COMES LOOSE AT NIGHT, AND I JUST TAKE IT OFF, I CAN'T HANDLE IT.

IT DOES SEEM TO GET ME TO SLEEP, WHERE I WAS USING SLEEPING PILLS BEFORE, BUT I DON'T KEEP IT ON VERY LONG. I HAVE NEVER HAD TROUBLE FALLING ASPLEEP DURING THE DAY, I DO TAKE A NAP THOUGH.
I THINK THE SLEEP STUDY PEOPLE GOT MY HOPES UP THAT I WOULD BE A NEW PERSON IF I USED THE CPAP MACHINE AND REMEMBER BETTER AND HAVE BETTER CONCENTRATION.
I DON'T SEE AMY RESULTS FROM THIS.
ANYWAY, THANKS FOR RESPONDING, AND WISH YOU LUCK.
SHEILA


[quote] I have had problems with the masks for my bipap machine. I have been on it for two years and did not know I was to get them replaced every 6 months or so... [/quote]

[Guest]

I also use Lincare as my equipment provider. They are the ones who said they no longer make petite masks. (why make something available that works?)

It just seems that whenever you find something that works or that you like they take it off the market, tv or wherever.

My sis ter is trying to find me alternatives to the trach and one was steeping cannabis...illegal and no directions to follow. I would be the "steeping cannabis grandma". Another rememdy was remeron...a drug my grandson was put on a few years ago.
After the second dose he was ramming his head into the house and the car. Needless to say, I stopped that drug!
Maxillomandibular Advancement (MMA) sounds painful as they
cut the jaw bones and move them forward...

Anyway, good luck on the search for a good mask with a great seal. I may try your remedies instead of the velcro. Thanks for the ideas.





[quote] HI,
I DIDN'T KNOW THEY MADE DIFFERENT SIZE MASKS. I PUT THE STRAPS ON MY MASK TO MAKE IT TIGHTER, AND NOW I SEEM TO GET A HEADACHE FROM IT BEING SO TIGHT... [/quote]