CPAP machines...the good, the bad, and the ugly

[hiwaygal]

Well, I had my first sleep study a few weeks ago...and I got the results yesterday. I have moderate sleep apnea.

I'm going next week for another study where they will hook me up to one of these machines.

I'm a little freaked out about it, but I am eager to feel better!

So I want to know everything I can from folks who use these things!

One thing my doc mentioned is that using one could be only temporary (maybe a year or two). Is that true?

 

[noodleknitter]

The good...I could breath better.

The bad...I never managed to sleep past 2:00 when I was wearing it.

The ugly...I gave mine back.

Possibly good, another doctor I am dealing with just gave me a script to try again, and just not fret it if I only kept it on 1/2 the night. That I would still benefit from sleeping better for that half.

GOOD LUCK!

 

[hiwaygal]

The good...I could breath better.

The bad...I never managed to sleep past 2:00 when I was wearing it.

The ugly...I gave mine back.

Possibly good, another doctor I am dealing with just gave me a script to try again, and just not fret it if I only kept it on 1/2 the night. That I would still benefit from sleeping better for that half.

GOOD LUCK!

And good luck to you too!!

How long have you been trying to use it? I didn't think I could get used to wearing wrist braces, but I did. But that's totally different than having some big contraption strapped to your face and head!

 

[noodleknitter]

About a week. My husband is a leg kicker, and I really think it is his fault I wake up! And in the middle of the night, the mask just feels too awkward. I'm not as sleepy as I am at bedtime, I guess!

 

[DisneyGirl4188]

I used to do sleep studies; if you have any questions, let me know.

The CPAP machines can be short term, but it depends on what is causing the apnea. If it is due to weight, then losing it should help.

There are several different types of masks. Some cover the nose completely, some just go in the nostrils. You can try different ones and see what you like best.

I had some people love it, but others couldn't sleep with it at all. For some it just takes some getting used to.

 

[themarquis]

Okay, here goes:

the good:

-you'll feel great after you start using it for a while! So great you'll never want to go back!
-you'll see improvements in your altertness, energy, mood, and general health (apnea causes problems with the immune system).
-You'll also find that eventually you will get very used to using the machine and it won't bother you at night.
-You'll feel well rested, have pleasant dreams (no more choking/suffocating dreams if you ever had those before) and wake up less during the night or not at all.

The bad:
-the masks are often uncomfortable and difficult to get used to.
-initially, you'll sometimes toss your mask onto the floor in your sleep!
-allergy symptoms can flare up from any allergens/mold/etc sucked in by the machine. You might have a stuffy nose all the time.
-you can get nose irritation or irritation from straps on your head
-your bed partner might get irritated from the air that blows out of the holes in the mask onto them
-your nose might itch at night from the mask (if you have "nasal pillows")
-you are going to have to do a lot of washing, soaking, and sanitizing of parts of the mask/hoses periodically.

the ugly:
-its possible the mask will always be an irritation and you'll never find one you love (but unlikely)
-its possible you will still have some medical/sleepiness problems that turn out to be due to other causes
-it might work for a while, and then stop working (b/c you need another sleep study due to your pressure needs changing) which might make you want to DIE (I'm in a phase of this right now, need to go back to the sleep doc)

nothing too ugly! By the way, I don't think the dr. is probably correct in saying you'll only have to use it for a couple of years or whatever. I have never heard of this, unfortunately. If your sleep apnea is being caused by a specific medical problem that is going to be corrected, maybe ... but usually not. I have heard of people who lose weight being able to get off the machine occasionally. However, unless there is something specific I don't know about your medical/apnea history, I think you might be in for lifelong cpap therapy sorry...

feel free to PM me with any questions/concerns -- I got my machine a few months ago and went through all the trauma of getting used to the machine, etc.

 

[hiwaygal]

WOW!!!

Thank you, marquis, for such an informative response!

DisneyGirl4188, thanks for your input and offer to help too!

I know I have a weight problem, and I'm also hypothyroid. We've got the HT under control, and my doc keeps telling me I need to lose weight (or diabetes could be an issue)...but I have NO energy. Zero, zip, nada. So my doc sent me for the sleep study.

I was shocked to learn about the apnea.

I am hoping that if I am able to lose weight, I won't have to wear this thing forever, but I'm also realistic and understand that I might.

One thing I don't understand...I asked about the nasal stips you can get OTC. They seem to help me some. But they said that it only opens nasal passages and there are areas in your throat that need to be kept open. How does that work if you only have a mask that goes over your nose???

And secondly, what will insurance cover? I know that's hard to answer depending on insurance types, but at what point will I have to pay for my own "customized" mask, and what will insurance cover? Those things aren't cheap!!

OH! Another question...about cleaning and sterilizing and all that...can this stuff be put in a dishwasher? Those are great at sterilizing stuff...of course, I need a new one of those too

You guys are great for helping me out!!

 

[YachtClubWoman]

I was shocked to learn
And secondly, what will insurance cover? I know that's hard to answer depending on insurance types, but at what point will I have to pay for my own "customized" mask, and what will insurance cover? Those things aren't cheap!!

I agree with everything marquis said. There were many of nights in the beginning where the mask was on the floor. I feel better with it and my husband can now sleep also. The funniest thing is that he is now the snorer and I wake him up to turn over.

As far as insurance, it depends on the plan. I have not paid a cent - I have had my machine for approx 3 yrs. I have had multiple kinds of masks, I have tended to break many pieces since I was trying to sleep on my stomach and I received a smaller CPAP for travel.

You will get used to it and you will feel better. I notice now if I fall asleep before putting it on - I feel worse in the morning.

 

[DisneyGirl4188]

You will have to ask your insurance what they cover. It is different for everyone.

A CPAP machine basically forces air into your passageways. A strip doesn't.

The masks come in different styles and sizes. The sleep lab should have a large selection (since not everyone's nose and face are the same). They have some that have a gel "seal" and that conforms to your face as it heats up (from your own body temp). It's not exactly custom.

How do you sleep? Mainly on your back?

They can also try to do a BiPAP. It's pretty much the same as a CPAP, but the air increases when you breathe in and decreases as you breathe out.

 

[hiwaygal]

You will have to ask your insurance what they cover. It is different for everyone.

A CPAP machine basically forces air into your passageways. A strip doesn't.

The masks come in different styles and sizes. The sleep lab should have a large selection (since not everyone's nose and face are the same). They have some that have a gel "seal" and that conforms to your face as it heats up (from your own body temp). It's not exactly custom.

How do you sleep? Mainly on your back?

They can also try to do a BiPAP. It's pretty much the same as a CPAP, but the air increases when you breathe in and decreases as you breathe out.

I try to sleep on my back or my side. I have back problems and it's better to sleep in certain positions. This is another worry...if I don't move at night, I'll get stiff and have a harder time in the mornings 'cause of my back! Weird, huh?

I'm worried about the weirdest things...like red marks on my face every morning and someone mentioned feeling panic because of the air pressue making them feel like they can't breathe.

I hope the sleep center has lots of options. I want to be able to try lots of different ones on.

Bottom line, I don't care what the insurance pays, I'm greatful to have anything, and I will buy whatever is most comfortable to me, but it would be nice if they let me choose something based on comfort as well as effectiveness.

 

[DisneyGirl4188]

Usually sleep problems are worse on your back (although, for the best CPAP mask fir it's best to sleep on your back).

Do a google search for CPAP masks images. You can get an idea of what is available. If you get one that fits into you nostrils, you shouldn't have red marks on your face.

 

[themarquis]

One thing I don't understand...I asked about the nasal stips you can get OTC. They seem to help me some. But they said that it only opens nasal passages and there are areas in your throat that need to be kept open. How does that work if you only have a mask that goes over your nose???

Maybe somebody already said this, but usually what is at issue when you have sleep apnea is that your breathing passageway itself closes up (not sure what its called -- trachea?), not your nose. Breathright strips will open your nose -- good for a stuffy nose, but not really attacking the source of sleep apnea.

And secondly, what will insurance cover? I know that's hard to answer depending on insurance types, but at what point will I have to pay for my own "customized" mask, and what will insurance cover? Those things aren't cheap!!

This really depends. I think most major medical plans will cover the equipment with a copay. For me, every month I am supposed to pay a 15 dollar copay, and every time I get a new mask or new hoses or anything, I also have to pay 15 more dollars. The main way they vary is in how often they will pay for new masks (you might not like yours or it might wear out). Some insurance plans let you get one a year (might be a major problem if you're trying to find one that works best); some every three or four months. In general, though, your machine will most likely be covered. Masks, hoses, and replacement parts for masks are relatively inexpensive and can be purchased out of pocket if necessary (masks can run 60-90 dollars). You'll probably not get a customized mask -- your DME (medical supplier) will have a bunch of different types of masks in a few different sizes and will fit you with one.

OH! Another question...about cleaning and sterilizing and all that...can this stuff be put in a dishwasher? Those are great at sterilizing stuff...of course, I need a new one of those too !

Some parts *might* be able to go in the dishwasher. I know the reservoir for my humidifier (attaches to the machine to help with allergy problems) can go in there. A lot of the masks are made of soft gel or plastic, so probably not. You will get an instruction and cleaning guide; most likely they'll tell you to soak in warm soapy water or warm water/vinegar.

 

[themarquis]

onto your next questions!

I try to sleep on my back or my side. I have back problems and it's better to sleep in certain positions. This is another worry...if I don't move at night, I'll get stiff and have a harder time in the mornings 'cause of my back! Weird, huh?

This sounds weird, but its very possible that your stiffness and pain will get better with apnea treatment. This is what happened to me! It turns out that I was moving around all night long and getting in really weird twisted positions (for example, all huddled up with my arm under my pillow and my neck tipped back all the way -- seems that this let me breathe the best!). If you are treated and sleep soundly, you won't need to move so much and you will feel comfortable in a wider range of sleeping positions, some of which might be better for your back. Speaking of sleeping positions, I don't recommend "nasal pillows" -- this is one option for your mask. If you feel the need to sleep on your side, it can be difficult to do that with the pillows (what I have now, and a major pain to sleep on my side with). The gel-type masks and the masks with a "cell" (I think these are called the Activa mask) are supposed to be good for side sleeping. Talk to the person who fits you for a mask and make sure they get you one for side and back sleeping.

I'm worried about the weirdest things...like red marks on my face every morning and someone mentioned feeling panic because of the air pressue making them feel like they can't breathe.

I have heard of red marks, but it never happened to me. Usually they can be improved by loosening the mask (many masks are actually designed to be worn very loose); some people stick a little piece of cotton or cloth or something (I heard of someone using a sanitary pad!!!!) in the spot under the straps where its rubbing to relieve it.

Re: feeling like you can't breathe, yes: this will definitely happen. The most important thing to do is relax, take normal breaths, and allow your body to get accustomed to the funny feeling. I spent a lot of time laying around reading with my mask on, and this also helped. Just remember you are not suffocating (in fact, you can't suffocate! the machine is helping you breathe!). It takes time to get used to it.

 

[yoopermom]

I have had mine for three years, and have four other family members who use one, so I have to agree with all of the above! Yes, it WILL be difficult to get used to, but it's a matter of life and death, truly. I have an uncle who is fighting having to use it (also won't give himself shots for his diabetes, grrr), and the dr. told him that he is basically risking his life.

You really need to not only try the different masks on, but try them on laying down in your usual sleep position, with your typical amount of pillows, as well. For example, I sleep on my side, with lots of fluffy pillows, but change from side to side frequently, so wanted one where the tube goes straight up and over the top of my head (many go off to the side, so turning over is almost impossible). The in-the-nose pillows literally made my nose bleed and get nasty sores (delicate skin), so I use one that covers my entire nose. It really is personal as to what works best for you. Make sure and find out the try out and return policy before you sign off for one!

Once you get used to it, you will feel better. I just went in to have mine readjusted, and the dr. said that often the amount of air pressure needed will change over time, but that I shouldn't count on ever being off of it unless I lose 100 lbs or more

Good luck and hang in there! Come on over to the Disabilities Board if you'd like more support or answers, they're a nice bunch of people.
Terri

 

[GDUL]

The good...I could breath better.

The bad...I never managed to sleep past 2:00 when I was wearing it.

The ugly...I gave mine back.

Possibly good, another doctor I am dealing with just gave me a script to try again, and just not fret it if I only kept it on 1/2 the night. That I would still benefit from sleeping better for that half.

GOOD LUCK!

Did you have a script for a CPAP unit or a BiPAP unit. There are a good number of people who fail with CPAP since they have difficulty breathing against a constant pressure (CPAP = continuous positive airway pressure). Many of these people do quite well on a BiPAP device - a unit that has 2 separate pressures. The higher pressure is called IPAP (inspiratory positive airway pressure) and a lower pressure while you exhale - EPAP (expiratory positive airway pressure). This lower pressure as you exhale allows many to tolerate BiPAP when they intially failed on CPAP.

There are also CPAP and BiPAP units that offer some pressure relief on exhalation (CFlex and BiFlex units) that can be more comfortable as you exhale.

As to red marks on your face (highwaygal) - this can be caused by irritation due to the mask or over-tightening the mask. If it is due to irritation, washing the mask as directed by your homecare company can take care of many of those issues. It is also a good idea to wash the mask when you take it out of the bag before you use it the first time. It is possible, of course, that you might have to try a different mask. One of the biggest problems that I see is people feeling that they have to really tighten down the mask to prevent leaks. What they don't realize is that if you over-tighten a mask, it can actually introduce leaks. There are many styles of masks that have a "bubble cushion" over the actual mask. These can actually be pretty loose and they work fine.

Themarquis is correct as to why you need a CPAP as compared to breathing strips. In OSA (obstructive sleep apnea), as you fall asleep, the soft tissues in the back of your throat begin to lose muscle tone. As this happens, the airway begins to close down. You begin to struggle to breath as the airway obstructs and this wakes you up (i.e., never reaching the restful sleep). The muscles regain their tone and you start to fall back asleep. Again, the muscle loses tone causing an obstruction which begins to wake you up - as you can see, this goes on all night - no wonder people are so sleepy throughout the day! CPAP and BiPAP act as a pneumatic splint, if you will. The correct positive pressure (determined in a sleep study) will keep the soft tissues in the back of your throat open as you sleep.

Personally, using a CPAP device literally changed my life! I couldn't believe how good I felt during the day. If you have any questions, feel free to ask - I'm a respiratory therapist that has a bit of experience in this area - LOL!

 

[hiwaygal]

Thanks, Gary!

Some of this seems like information overload right now, you know? But, I know it will all come in handy and help me out when I go through the processes.

 

[noodleknitter]

Thank you Gary! I will ask about the BiPap if I have issues with this one again!

 

[Lachesis00]

We have been using our CPAPs only for a few days and honestly neither us is feeling better. If anything I am more tired when I wake up. I keep hoping I am going to have a turn around. I have no leaks, it seems to be working as it should except I wake up exhausted and I still sleep 8-12 hours and then can nap in the day. It's driving me crazy!!

I know this is not common for most people.

 

[RoyalCanadian]

It can take several weeks for the body to adjust to the CPAP therapy. Each person's response to the therapy is unique.

I have been using my CPAP machine (the Resmed S8 Elite, with Resmed's own brand of C-Flex incorporated into the unit) for about 2 weeks now. Initially I had to overcome the urge to lay down for a nap during the day -- it's how I've had to live for the better part of 20 years. I don't necessarily feel particularly rested when I awake in the morning, but I have not had a nap since I've had the machine nor have I had those nasty incidents when I would spontaneously fall asleep due to absolute exhaustion.

My unit is set for 13 cm of pressure -- a fairly high pressure -- and I use the nasal pillows instead of a full face or nasal mask. I sleep well through the night -- I don't wake up constantly and I don't have a pastey mouth when I do awaken. I was having to drink lots of water to combat the dehydration and then having to get up to use the bathroom and get another drink to combat the dehydration again. It was a nasty cycle that I have finally beaten.

Best of all, my wife is also sleeping well now that I'm using my machine.

 

[themarquis]

it took me about two weeks to be really feeling an effect. Some people take longer, some shorter.

Also keep in mind that in the short term, you might have many awakenings (some you might not remember) because of issues with the mask (it being uncomfortable, leaking, your body being unused to it) that can cause you to be a bit more tired...