Your first experience with cpap & mask?

LDuyer · Post by **LDuyer** » Sat Nov 20, 2004 4:44 pm

I just have to ask....
HOW IN THE WORLD DID YOU REACT WHEN YOU GOT YOUR FIRST CPAP MACHINE ?!?

OK, I got this machine, delivered to my door. I knew it was coming. Eagerly awaiting relief, I rip into the boxes like it were Christmas. I read enough of the instructions to set it up and position my mask (not tightened yet to my head). .....I actually had it upside down for a second....Finally get it right, turn on the machine, start to adjust to it. .....There's a squeeky noise when I exhale and the mask moves. .....And, would you believe, on one breath, an ear stopped up!! I laughed (alot), I cried, I tried hard not to imagine myself looking like a masked jet fighter. ......I was reconsidering.

I want to know what it was like for you, funny, sad, everything, whatever. I'm new so I haven't read any postings that described first reactions.

Lavendel · Post by **Lavendel** » Sat Nov 20, 2004 5:35 pm

When I first put my mask on my 2 year old told me to take "that thing off my face"! He's used to it now & will remind me to put my "mask" on. He thinks I look like a fire fighter! I will say when I first used the mask & machine I had a difficult time not feeling like I was going to suffocate. I really had to work on calming myself down & breathing regular. After the initial period of adjustment (about 2 weeks) I've never given it a second thought! I don't even notice when I have it on anymore.

rock and roll · Post by **rock and roll** » Sat Nov 20, 2004 5:59 pm

Great question!

It took a long time to be diagnosed. When I did, after sleep clinic, I knew I did not like the masks that the sleep clinic did and I called insurance company for a list of covered DME's in plan. Callled them all until I found one that did not charge me what I coukld buy the thing online for as my deductible. Also one who daid he would work to find me a mask.

When i picked him and called my insurance company and doctor for RX, they told me it would take 2 weeks to get approved. When I finally did, my DME was out of the unit I wanted and had to order it. When he got it he brought to my house and set it up and kinda explained to me how to use it.

That first night, I was so conscous of it I could not sleep without Ambian. My mask leaked all night long making f_____g noises and I thought "I could not sleep before, how the heck am I now?"

After trying different masks for a week to which he came to my home each time, we settled on the Activa. He also gave me a nasal-aire and a chin strap. I use the activa most of the time.I now use it every night for 6-8 hours sleep. I still have to wake up and adjust it alot and I haved to fight my mouth leaking with tape etc. but I am so much better. I toss and turn and rock and roll a lot at night. Still fade in early afternoon but I could not get out of bed before. Now my Dme is going to bring out some full face masks to try. He has been very accomodating. I am lucky.

RestInSeattle · Post by **RestInSeattle** » Fri Dec 10, 2004 7:09 pm

My 3 year old son loves my mask. I have to remind him that it's not a toy when he comes in and wakes me up in the morning.

I went through two masks though. I started with a FlexiFit HC407 that fit comfortably, but tended to occasionally leak at the bridge of my nose (narrow) into my right eye.

I'm now on a ComfortGel Small, almost but not quite the size for the next one under that. This mask doesn't leak for me and is very comfortable with no lines on my face in the morning.

Miko · Post by **Miko** » Fri Dec 10, 2004 9:56 pm

I had to try ALL the respironics masks. The full face mask was a no go because it leaked no matter what I did. The constant adjusting of the mask at night without success was not conducive to both my physical and mental well-being (I couldnt sleep). You really need a DME to help you get a fit and machine. Finding a DME is like trying to find a dentist or spouse. you have to find one that is suitable for you.

I settled on the mirage activa after switching DME's. But, I had to endure headaches (from CPAP and the tight mask), as well as the bridge of my noise being very tender. I spent two weeks of my annual vacation in hell and I had virtually no sleep with this damn testing. I felt like a lab rat and a zombie. This was a year and a half ago. To this day, I am not able to tolerate cpap either because of the noise from the hose, or mask, or the aerophagia (swallowing of air) while sleeping. My only option is to attempt some degree of benefit from a dental appliance or hope that one day, there is an appliance that I will be able to endure.

cheer sponsor · Post by **cheer sponsor** » Sat Dec 11, 2004 1:58 pm

I have had mine for about 2 weeks. I have a activa mask and am trying to make it work. leaks, sounds, hose in the way, can't seem to get settled.
I had done my share of reading and it makes my head hurt. So many choices and the high prices.
The 1st night was horrible. I had too keep reminding myself that I could take if off. That I was not going to suffocate and hoping this machine would help.
Good luck to all.

Miko · Post by **Miko** » Sat Dec 11, 2004 2:51 pm

cheer sponsor, did you ever get used to it?

tiredted · Post by **tiredted** » Sat Dec 11, 2004 6:20 pm

What is "DME" that everyone keeps talking about?

rested gal · Post by **rested gal** » Sat Dec 11, 2004 6:34 pm

DME = Durable Medical Equipment. We use it as a quick, easy way to refer to the people (or stores) that provide the equipment - masks, machines, chinstraps, etc. Refers to the home health care store, or the employee you deal with at the store, or the therapist that comes to your house with masks and machine... we just kind of lump all those into a shorthand phrase on the message boards. The way we use it isn't grammatically correct, but it's easy to type.

Example: "My DME let me try on several masks." Might mean the local home health care store allowed you to try on several masks while you were in the store, or it might refer to the person who was sent to your house with an armload of masks for you to try.

"My DME is Apria." Means your home health care provider is the Apria company.

Guest · Post by **Guest** » Sun Dec 12, 2004 4:10 pm

Miko wrote:cheer sponsor, did you ever get used to it?

It's getting better. I am having sinus problems right now so nothing feels good. I just keep praying that I will get used to it and that my sleepiness will go away.

Spiritus · Post by **Spiritus** » Sun Dec 12, 2004 7:07 pm

cheer sponsor wrote:

I have had mine for about 2 weeks. I have a activa mask and am trying to make it work. leaks, sounds, hose in the way, can't seem to get settled.
I had done my share of reading and it makes my head hurt. So many choices and the high prices.
The 1st night was horrible. I had too keep reminding myself that I could take if off. That I was not going to suffocate and hoping this machine would help.
Good luck to all.

Hi,

I had an early problem with my Activa because of the way the quick-disconnect swivels. What I did was to thread the hose through the headboard (our headboard has slats) and bring ther hose down from directly above my head. That kept the exhaust pointing towards my toes and not my wife!

Rob

Guest · Post by **Guest** » Sun Dec 12, 2004 10:09 pm

I have been at this about a month now. I am using the Remstar Plus with C-flex. Breathing with the machine has been very comfortable. I have not had any difficulty with exhaling and my pressure is 13. I don't need to use the ramp any more to get to sleep.

I wish I could say the same for the masks. I started with the ComfortGel and after a few days the bridge of my nose was a bloody mess. The DME swapped it out for a ComfortLite. The technician said that I should have been fitted with a medium instead of a large with the ComfortGel. She gave me the small (4) nasal interface. It turned out to be too small and I had to use too much pressure to stop the leaks. It was hurting my nose, so I swapped out for a medium (5) and it fits much better. I have also tried the medium cushion that fits over the nose and find it more comfortable than the nasal interface. But with the cushion, the rube goldburg device used to press it to the face does not put enough pressure to stop the leaks. I use an elastic strip with velcro to wrap around my head and the adjustible tube to hold enough pressure to stop the leaks. That seems to work. It is loose enought not to cause discomfort but tight enought to stop the leaks.

After reading some of the posts, I ordered the Ultra Mirage mask from cpap.com. I am hoping that it works better.

The manufacturers seem to have a good handle on the machines, but have a long way to go to get a mask that is comfortable and does not leak when you move. I have only been able to use the mask when I am flat on my back. Since I move a lot while sleeping, I have not been able to use a mask more that 4 or 5 hours a night. I keep waking up to adjust the mask and roll on my back again. I got a better nights sleep before treatment and was not nearly as tired during the day.

Still trying but not sure this is going to work.

JohnB · Post by **JohnB** » Sun Dec 12, 2004 10:15 pm

I had logged in before responding, so I do not know why my post shows guest. For some reason i had to log in again. Maybe I took too long to type. Hope this one works.

snamvar · Post by **snamvar** » Sun Dec 12, 2004 10:31 pm

I found the sleep test and being detected with apnea as a glimer of hope in treating my 25 years of struggle with insomnia and fatigue. At the same time, I was very anxious as if it would really work and I would get used to it. The first few nights was horrible. I gave up on using the machine.
When I went to my sleep doctor and told her about my problem, she told me to use the humidifier and the ramp. What really worked for me is she told me that I should treat this condition. If not, it could result in other health issues.
It seems that I needed that extra push to start taking this seriously. I also came across this forum by accident (google search). I have found it to be a great source of information and support. Just like anything else, it takes a while to get used to the machine and masks. I switched from a Remstart plus to the one with C-flex. It was a great change.
I must say that at first, I felt very bad about having to use a machine to sleep and treat my apnea. It kind of affected my self-esteem. But now, I thank god that I got detected and I am in a place to be very comfortable with it. Keep at it and read this forum. Good luck.
I am also waiting for my Breeze nasal pillow. I think it would be worth a try.

Nenetx2004 · Post by **Nenetx2004** » Mon Dec 13, 2004 9:04 am

I've been using the Fisher & Paykel Flexifit Full face mask. The only complaint I have about it is that it is leaving a red mark on the bridge of my nose. I have a long nose and I really like the full face mask. Can anyone recommend another mask that might work for me?

My first experience was pretty awful. I put it on at night and cried. My boyfriend has been so wonderful. The apnea scared him too many times in the night so he was very much for my being on CPAP.

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