Tuesday, February 2, 2010

Amy Gets a CPAP Machine

Well, it's been a good two months since I've blogged yet again - I think it's time to rename it "Once a Month Blog" or "Just When Amy Feels Like Writing So Don't Get Your Hopes Up For Frequent Updates".

So, I promised to write about the results of my sleep study - the CPAP-ness and such. It was kind of sad what ended up happening; I got my results and talked to my doctor and I woke up 34 times during the sleep test. 34. And I never even GOT below stage 3 sleep. Ridiculous.

As you can guess, that meant it was time to get a CPAP machine. I got mine from Praxair - a home medical supply place. It's a rent to own type deal with our insurance, so I pretty much got my own unit right off. I met my Praxair representative, who explained how to use my CPAP machine and such, and then proceeded to do a mask fitting to see which one would work best. I ended up going home with this new gel-type one and was pretty happy with it, from what I could tell.

Man was it a whole different world when I tried to use it.

I'm going to ask you to imagine with me again - are you with me yet? Okay, so imagine you're putting on a snorkel mask, but just the nose part. It is literally eating your face and feels HUGE. It presses against your upper lip area because you're wearing a mouth guard because you not only have a blocked airway in your sleep, you grind your teeth. As if one sleep problem wasn't enough.

A snorkel mask is a pretty good comparison not only because of where it sits, but if you have a humidifier attached to your CPAP machine and have it set too high, it feels like you're drowning. If you have it set too low, though, it congests you like crazy.

Also, getting situated is a bit ridiculous - mostly because the hose pushes into the edge of your pillow, pushing the mask into your face. They actually have CPAP pillows that have a hole cut out of the side right where the hose sits, so you don't have that problem. I'm thinking I'm just going to cut a hole out of my pillow. I'll let you know how that one goes.

The best part about a CPAP mask is that you have to get it at just the right pressure - if it's too loose, it leaks and you don't have the right pressure for it to work. If it's too tight, it feels like you're losing all circulation to your face. Yes, that's totally sarcasm.

Okay, so after a week or so of using the new gel mask it was driving me crazy, so I went in and got it switched out for a smaller, older model. The problem with the fitting concept is that the situation of sitting in a chair, testing out masks is not true to how you're actually going to use it; unless people sleep sitting completely upright, which I guess my friend's mom does sometimes (with her CPAP- and now I understand why).

I want to try the nose and mouth covering masks, but the 30-day trial period is up and the insurance won't let me get a new mask for 2 more months. In the meantime, I'm trying to get comfortable in my bed and after an hour I pretty much end up tearing it off in frustration and getting the sleep I can with it off. Why did it work just fine for a month or so and now I can't sleep with it on? I have no idea.

Picture with me wearing the CPAP to come...if I don't destroy it first.

15 comments:

Jessica :) said...

Man, that would be really frustrating! I hope you can get a mask figured out soon & you'll be able to get some good sleep! {*happy -sleeping - thoughts for Amy!*}

Jen said...

Dear Amy, try the nasal pillow, most of our patients prefer it, unless you already know you hate it. Also, ususally if you get your doctor to write a prescription for a different mask and send it to Praxair (fax: 801-262-5345), they'll switch it out for you...hopefully. Sorry about the apnea :(

Steve-O said...

When I tried a CPAP 4 or 5 years back, I would fall asleep with it on and wake up the next morning with it off, and I couldn't remember how it happened. They figured I would wake up just far enough to tear it off, but not enough to actually remember doing it. Finally I gave up, so my life span is probably being shortened as we speak. Oh well.

alan_oc said...

I have used a cpap machine for about eight years now. I use a full face mask because I can't breath through my congested nose. I snored bad. How did my wife stand it for so long? The sleep study showed when laying on my back I was coming out of deep REM sleep every two minutes, 30 times per hour. No wonder I was so tired. I take the CPAP with me to scout, family camps, vacations, etc. I use an inverter to power it while camping. My CPAP has a sensor that can tell how much pressure I need and starts out about 5 lbs. and goes up higher if needed to keep my throat open to breath. It takes several minutes of adjusting the mask, hose, head, etc to get comfortable and then I am gone. One funny story. While on a business trip I shared a room with an associate. The CPAP machine made some funny noises during the night and the next morning Bill said he thought I might die during the night because there was "no way in he-- he was going to do CPR on me". I know several friends who use machines and can't sleep without them. Mine sure helps me sleep and feel better. Alan

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Linda Lou said...

Am looking for Help with my cpap machine. I was told to get a cpap machine 5 years ago. They told me that I was waking up 41 x and hour. And, with the cpap during the study, I woke up only 16 x an hour.


Switched doctors a year and a half ago in January, and was telling her about my sleep problems. And, told her I had a cpap problems, but didn't like using it. She told me I should start using it again and I am suppose to get help from a cpap technician. So, over the course of a few weeks, I tried several different types of cpap head gear. My problem was that if I used the nose gear my chin would flop open. Then, we tried the chin strap to no avail. Then, we went to the mouth piece with the nose plugs... I have a receding chin, which caused the air to flow back out around my teeth and out my the sides of my lips.

Finally, we tried to the full-mask, which covered my mouth and nose. Using this full face mask was tough at first, but it took about two weeks, and I got used to it and could sleep. Then, it started farting a few weeks into using it. So, I tightened up the straps. That helped for a little while, and then it would start farting again. So, after maybe two or three months, I had it cranked on my head pretty hard.

Then, last December, I had thyroid surgery, and noticed my head and neck hurt pretty bad afterwards. I am talking about my cradle cap area and the back of my neck. I figured that they had to clamp my head hard and bend my neck back to access the thyroid. I noticed how the top of my head, the cradle cap area, was hurting. It hurt when I brushed my hair. It hurt when I washed it. It hurt if I simply touched my hair without even touching the scalp. So, in February of this year I kept feeling where it hurt. I figure it I had any problems with the clamps the surgeon would have used, it should have already gone away, so I went back to my regular doctor.

In the doctor’s office, I told her I was getting severe headaches. My blood pressure was 144/90. She told me to get my BP taken every week for a few weeks and let her know how things are going. Plus, felt my scalp around the cradle cap, and said that the swelling and puffiness was not normal. So, she did blood work, and also a CT scan of my head. Ha…they found nothing in it. Ha! Literally, they did not see any problems underneath my scalp. After all that, her nurse told me everything was fine, and to get my cpap fitted.

Back to the technician I went, and they now had an extra small face mask. I asked the gal who gave it to me to fit it, but she knew nothing about it. And, cranked it on pretty bad.
So, when I got home, I fitted it, and it did pretty well. The swelling went down on my scalp. …. Then, it started farting. So, I had to cranked it. And, it worked another couple of weeks. And, last night… this morning, I woke up to the farting, and was not able to get it adjusted to quit.

Now, I know I need 8-9 hours of sleep, or I might as well not be alive. My cradle cap is back to its swollen state. And, I know it is the straps from the mask that are cutting off the circulation to my head and causing the swelling. My head hurts to touch it or even move the hair, and I am getting the headaches again like I had when I went to the doctor.

Has anyone had this problem?

HELP, HELP, HELP!

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Ashok Kumar said...
This comment has been removed by a blog administrator.
Margaret said...

I HAVE BEEN USING MY CPAP FOR 5 YEARS NOW AND I LOVE IT.I TOOK TO IT IMMEDIATLY. I THINK I DIE WHEN I SLEEP BECAUSE I SLEEP SO DEEP. I COULD SLEEP ALL DAY.
I USE THE MEDIUM NASAL PILLOWS, THEY ARE LESS CONSTRICTING, AND I CAN SWITCH MY HOSE FROM LEFT TO RIGHT DEPENDING WHICH SIDE I'M SLEEPING ON. EVERY ONCE IN AWHILE I SURE WOULD LOVE TO SLEEP WITHOUT IT BUT IF I WANT TO LIVE I PUT IT ON. MY INS. PAYS FOR NEW HEAD GEAR EVERY 3 MOS. GOOD LUCK TO EVERYONE AND SLEEP WELL.
PEGGY, FROM MARYLAND

davidwhite214 said...

I really can't imagine using a CPAP machines while sleeping. Its true that your like putting a snorkling while your asleep but if its the best way to treat sleep apnea then go ahead and wear it.

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Elisa Jed said...

Don't worry about the time gaps, you are fine. As for the CPAP test, how did it work? I have heard they are a bit uncomfortable, but it didn't seem to bother you.

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