Prospective user questions

[Guest]

I have been plagued for years with a variety of sleep problems, the usual snoring and daytime drowsiness along with insomnia, hypersomnia, restless legs, sleep agression, sleep sex, panic attacks, anxiety and the like. A few years ago I went to the Sleep Disorders clinic in Pinole, CA and Dr. Fred Nachtwey diagnosed me with moderate to severe sleep apenea. The obvious recommendation was CPAP, but I wasn't convinced and tried all those useless "herbal" remedies and finally Ambien. Utimately this had led to to my wife and I sleeping in separate rooms.
I'm finally willing to bite the bullet, but I do have some questions-

Noise: is the machine loud?
Embarassment: I really have to wear that stupid looking mask every night for the rest of my life? I'm only 31, so I'm looking at many years strapped to it.
Cost: I think my insurance will pay for a machine (I have Aetna), but will I get the kind that seems to be suggested here (APAP +C-Flex, smart card and software). I don't have a lot to spend, whether I need it or not.
Travel: Can I pack the damn thing on a plane?
Overall long term effects: Have there been any studies done on long term use? Will this further weaken the airway or will I become acclimated to the pressure?

TIA.

[sharktone]

Hi, I am very new to this forum..but I have experienced pretty much all of the same sleep disorders you have listed. I have had severe insomnia since I was a teen, I experienced panic and anxiety attacks, as well.

I can tell you that so far the CPAP is working for me...I have never felt so rested. I know what you mean about the embarrassment of having to wear the mask every time you sleep, but it would be much more embarrassing and tragic to suffer a stroke or heart attack at a young age.. I am in my thirties like you.

I really feel that this therapy came to me in the nick of time...If anything Im lucky I didnt drive my car off an embankment, I was starting to fall asleep in mid sentence at my job even!

from what I have seen and read, you can pack the CPAP with you wherever you go, and I believe they even have battery packs and car adapters.

there are others here with far more knowledge about this than me, who have been on this therapy for years. Im sure they can tell you more..but I just wanted to say that its working for me, and with 79.5 episodes an hour, I WAS in the severe category.

good luck,
Sharktone

[birdshell]

I'm finally willing to bite the bullet, but I do have some questions-

Noise: is the machine loud?
Embarassment: I really have to wear that stupid looking mask every night for the rest of my life? I'm only 31, so I'm looking at many years strapped to it.
Cost: I think my insurance will pay for a machine (I have Aetna), but will I get the kind that seems to be suggested here (APAP +C-Flex, smart card and software). I don't have a lot to spend, whether I need it or not.
Travel: Can I pack the damn thing on a plane?
Overall long term effects: Have there been any studies done on long term use? Will this further weaken the airway or will I become acclimated to the pressure?

Wow, you really have had a lot of medical problems! That is so difficult, isn't it? You must have gone through a lot of soul-searching.

Congratulations on trying to improve your situation. I'm not an expert, but here is my take on your questions:

Noise: Most of us find our machines to be very quiet, as reading many postings has told me. Most of the time I cannot hear mine, and have to hold my hand up to the exhaust to make sure it is on. Noise perception is a subjective thing, though. Some people seem to complain of noise, but very few, IMHO.

Embarrassment: Will you really be embarrassed to wear the "stuff" AND to have your wife back in the room since you will no longer be snoring, awake, kicking her, etc.? Even sleeping in another room, she IS still married to you and it cannot have been so easy for her.

Personally, I have always been more embarrassed by snoring and rooming with others. Whether you choose to be embarrassed or not is really up to you. (Really, other people do not look at us as much as we seem to think...) It seems to be a considered decision as to what "embarrassing" really means.

Cost: This depends on your insurance, and only you can deal with this. Getting the machine you NEED is important. Spending is up to you. If you truly NEED it, then the cost will be a priority. But, don't just decide what to spend until you look into the health benefits of using CPAP vs. NOT using CPAP, in view of your conditions.

It seems to me that you will have to work on the coordination of your doctor, your durable medical equipment provider, your insurance company, and yourself in order to determine what happens with your equipment.

Travel: The xPAP is considered a medical device and can be carried onto planes. Some even use them on planes.

Long term effects: I've only used my CPAP for 7 months but I can tell you that it has helped me. I used to sleep 12-14 hours a day, which is OVER half of my life. Now I am averaging (for the entire 7 months) 9 hours a day. I think better, I feel better, and am able to do more but I'm still not perfect. This has been a slow and subtle improvement.

Airway questions would probably best be directed to medical professionals.

I would like to say, though, that you should only undertake treatment if you wish to feel better. Using it for the rest of your life may or may not happen; no one can predict what medical treatments may be developed in the future.

What do you think will happen if you avoid using CPAP? Haven't you decided to put those days behind you?

Good luck with all of this, and please keep us posted on your progress.

[ZPAP]

Tia,

Just to add to the excellent comments above, yes, you do become acclimated to the CPAP. I've been using it for 9 years and actually look forward to it -- I love the sensation of fresh air blowing in my face, it reminds me of the feeling I get sailing and skiing, two of my favorite activities.

As for the mask, there are lots of different masks, some much less intrusive than others. The embarrassment factor is in your head -- would you be embarrassed if you had to use a heating pad every night, or take a sleeping pill? It's the same thing, it's a necessary treatment for a medical condition, only this one is saving your life.

As for long-term use, I'm not sure, but I don't believe that there is any evidence that long-term use is detrimental in any way. There are alternative treatments right now, including surgery. However, they don't always work, and there are significant risks, which most of us aren't willing to take.

Finally, if you have a reasonable titrated pressure that you can tolerate, you don't need an auto machine, nor do you need the software, unless you are determined to regularly monitor your treatment.

Being as young as you are, I am sure that it is difficult to contemplate doing anything for the rest of your life, especially this. However, if I were you, I would look on the bright side: you discovered this a lot earlier than a lot of us did, and if you start CPAP now and stay with it, you will be improving your chances of living a longer and healthier life.

Michael

[ozij]

Being as young as you are, I am sure that it is difficult to contemplate doing anything for the rest of your life, especially this. However, if I were you, I would look on the bright side: you discovered this a lot earlier than a lot of us did, and if you start CPAP now and stay with it, you will be improving your chances of living a longer and healthier life.

Michael

...And enjoying it!

O.

[CollegeGirl]

What everybody else said.

Seriously, though - I'm 27. And I'm actually HAPPY that the doctors finally found out what was causing my sleep problems - it is SO nice to feel rested and not like a zombie anymore, and not to spend half my life sleeping. If THIS is all I have to do to make my life better? Pffft! Wearing a mask is nothing!

There are so many worse disorders to have - disorders that aren't fully treatable, disorders for which one has expensive monthly meds, disorders which affect you during the day AND night.

All we have to do is hose up at night, and no one in the world knows we have apnea when we're just walking around during the day, and it's fully treatable, and that treatment changes your life!

I count myself lucky.

[Offerocker]

Ditto on all of the above excellent advice.

One comment to add: Why be embarrassed? Remember that your wife will also be SLEEPING! And she'll not be awakened by your snoring - I think she'd welcome that trade-off. You don't need to put it on the minute you hit the bed, just when you're ready to go to sleep. . It will become your wife's friend as well as yours. You'll live longer, and you'll get to sleep together also. It's a win-win situation. Now, get 'hosing'!

I will agree with you (forgive me, Michael), that an "Auto" with C-flex IS the way to go. They are not THAT much more expensive, especially in the long run, and provide you with much more flexibility. My opinion of course.

[snoregirl]

All the advice above is good advice.

I only want to comment on the auto piece. Of course I love AUTOs. Look at my profile, I have one.

BUT if you have a good sleep study, the regular CPAP is just fine for a lot of people.

I look at it in a couple of ways for myself. I have a sort of high pressure (not really high but not trivial) 13

To me that around the point when the mask starts having leak issues and it is, to me anyway, quite a bit of pressure to exhale into.

So for me the AUTO is great in that I can sleep with less pressure until I need it (10 -15 range is where I am set.)

AND I don't want another expensive, uncomfortable sleep study for a very long while, AND I don't have a problem with central apneas.

So if the APAP makes my sleep more comfortable, and keeps me away from additional titration studies it is well worth the extra money (cash price $150 difference).

Now in your case you don't say what your titrated pressure is. If it is low, then the APAP has less value in the comfort area, but still has value in avoiding titration studies.

You CAN tweek your straight CPAP with data Pro2 or M series Pro (I am sticking to Respironics here but there are other manufacturers) without needing an APAP. You even can get the DME to read your data periodically without owning the software. Just don't tell them you are using it to tweak, or clear it with your doc.

SO if money is tight and you can get your insurance to spring for a straight cpap but not auto, then you will probably be fine with that (of course we don't know your titration pressure).

Just do the math on copay and deductable to make sure you are not paying more out of pocket for CPAP than you would pay cash online for APAP.

If you can get your insurance to do APAP great. It would give you most flexiblility, but if not you are probably fine with CPAP if insurance is paying.

[ZPAP]

I will agree with you (forgive me, Michael), that an "Auto" with C-flex IS the way to go. They are not THAT much more expensive, especially in the long run, and provide you with much more flexibility. My opinion of course.

Of course, I'll forgive you, Offerocker!! I agree that an Auto with C-Flex is great (as I've insisted on one for myself!) However, if one has a good titration study and can tolerate the resultant pressure well with CPAP, an Auto is not necessary. And that's especially true if the user is not going to use the software to titrate themselves.

[Offerocker]

I will agree with you (forgive me, Michael), that an "Auto" with C-flex IS the way to go. They are not THAT much more expensive, especially in the long run, and provide you with much more flexibility. My opinion of course.

Of course, I'll forgive you, Offerocker!! I agree that an Auto with C-Flex is great (as I've insisted on one for myself!) However, if one has a good titration study and can tolerate the resultant pressure well with CPAP, an Auto is not necessary. And that's especially true if the user is not going to use the software to titrate themselves.

I cannot argue that point!! (my underlining) .
...and a good one also...