Why do people give up?

[Pugsy]

I see some people who are just not willing to put up with the difficult adjustment period because they never push themselves to do anything hard, ever. (The word "wimp" comes to mind, but I'm sure I'll draw flames).

Won't be getting any flames from me either. It's a cold hard fact of life that some people don't/can't/won't do the work involved when things get a little rough. Sometimes even the ones that come here supposedly wanting help but when they get all sorts of ideas get offered they come up with the "Yeah, But..." excuse. We have all seen them. You know that they will find some excuse to quit. I can almost spot them from the first posting...and for sure after a few "yeah, buts"..

[ddk]

I didn't realise people could feel rested with sleep apnea or that a machine could make people feel worse. I just assumed that having a poor night's sleep constantly would result in feeling awful constantly. The difference for me is night and day. I have been walking around like a zombie my entire life because my apnea was only diagnosed recently and only because someone pointed out to me that I stop breathing when I'm sleeping. To me, feeling like utter crap every day was 'normal' simply because I never knew any better. Now I do know better, I just can't imagine going back to that half-dead state and consider the annoyances of the machine a very minor drawback next to the alternative.

As others have said, I guess I should be thankful that I notice such a big difference. It's hard to be thank-ful, though, when you've literally only just woken up after 37 years of walking around in a daze. My apnea has had such a profoundly negative impact on my life that being thankful for having it isn't something I can grasp.

[Todzo]

Maybe it's just because I have severe apnea (prescribed pressure of 20) but I can't for the life of me understand why anyone would stop using a machine. Even with a face-mask which wakes me up five times a night, I STILL have vastly better sleep and feel a hundred times better in the morning than I do without it. With the Swift FX I usually wake once a night with a dry mouth but have been getting 2-4 AHI's and feel incredibly different from when I didn't have a machine. I just can't imagine life without one now and dread when the rental period is up as I can't afford to rent continuously and it'll be several months before I can afford one for myself.

Why would anyone want to go back to feeling like crap all the time?

Hi ddk!

I think a lot of it stems from bad implementation of Positive Airway Pressure (PAP) equipment. They rely on a "titration" done in a few hours in a lab and expect that to work? It is as if they have never actually looked at the persons data to see how things are going as they go?!?!?

Sleep, as we actually do it in our own beds night after night, is never the same. One day is good so we sleep better. Another is hard - but our outlook is good so we sleep more deeply but good - another falls during a time of illness - after a big party - in deep tension - etc.., etc..., etc..... Life, and the bodies we go through it with, are ever changing - dynamic - in motion. Yet the tool we use to "follow" this is more or less a "snapshot" and that taken in a very strange place, with strange white coated people, with us knowing it is costing lots of money and that the results are likely to effect us deeply.

If the result of the titration sets the PAP with too low a pressure the apnea is untreated, or at least under treated, and the effect is non-existent or at least lessened. No effect - no reason to continue.

If the result of the titration sets the PAP with too high a pressure unstable breathing is likely to result and the body, understanding that trouble comes to it by this - will make you want to toss the PAP out the window - good reason to not continue indeed!!!!!!!

If they do actually get it right then the health of the person will improve - and - the thresholds for preventing apnea and unstable breathing will indeed change. But, there is no provision for this in the way we do things currently. If I were not gathering and analyzing my own data recent changes in my body which have brought about changes in these thresholds for me would have allowed the machine to damage me with unstable breathing.

When looking at how successful PAP treatment was a few years ago they found it "worked" (people continued to use it) 50% of the time. About that time an enterprising Durable Medical Equipment (DME) provider worked with some PAP equipment providers to develop a system where the night to night flow data was downloaded, automatically analyzed, and feedback to the PAP user provided to catch the changes I mention above as they occur. Last I checked nearly 90% of their users were using their PAPs!! I believe feedback is essential to making PAP work, simply. I do not see why they would try to implement PAP therapy without feedback and I consider the practice medically irresponsible.

When diagnosis and titration move out of the lab and into the home – and when daily feedback is effectively used I believe that people will be a lot happier with their PAPs, more productive, and in much better health. I hope we can change how we do things quickly to make this happen soon!

May we all find better health!

Todzo

[rimp]

If it wasn't for the people and the info I've gotten from this forum I would have given up. Dealing with an idiot md, dme crap, adjusting to a mask We lost power last wednesday during my prime sleep hours and I felt sooo crappy the next day. I know I've gotta use the cpap. It's not where I want it to be yet, butt, it's a journey and adjustment

[zoocrewphoto]

I have known for years that I have sleep apnea, but I thought it was simply about being awakened a lot, and I already have lack of sleep from being a night owl and my schedule not always working well. So, I didn't see it as a big deal until I learned that it was most likely the cause for my medicine resistant high blood pressure. My doctor had been warning me that I am at high risk of a stroke, even though I just turned 40 this month. My doctor didn't ask if I had sleep issues, and I never bothered to tell her.

I assumed I was tired due to getting older, getting heavier, and not getting enough hours in bed.Since it took years to get this bad, I hadn't realize how bad it had become.

Once I had my sleep study with a good night of sleep, I could feel the difference, and I have pushed through the challenges. Right now, I am struggling again due to coughing, allergies, etc that have been challenging my sleep. But I will keep at it as I know how badly I want it now.

But there are lots of people who have a a restless sleep study (or worse), and do not have a noticeable improvement early on. They don't have a comparison, so even if they don't feel great, they may not realize how bad it truly is. They may need to get bad enough that they are willing to push for success.

Most people have challenges with this treatment, so they need real incentive to push past them. One incentive is knowing how much better we can feel. Another is the health improvements. Those works best if they can be felt or at least seen. For example, my blood pressure is normal or almost normal if I have a couple good nights in a row. It goes back to very high if I have a bad night. I can see the improvement, and I know I need the treatment.

I know several people who have quit. One is my brother. He says it is because of dreams and not being able to wear the mask. But I believe the dreams are caused by the sleep apnea and will get better with treatment. I think he is simply stubborn and impatient, and he also got a bad dme. He got in an argument with them over the billing, and is proud that he won. But he also put the machine in the closet and won't even tell me what kind it is.

Another friend quit because she had a useless dme who never told her there was more than one type of mask. She failed compliance, and they took the machine back. She says she would try again but can't afford the machine on her own. I have offered to help her find one used, but she is reluctant. I didn't know if that means that even $200 - $500 is too much, or if she really doesn't want to try again. I don't know her well enough to know.

My mom has been off and on again over the years, but she never felt any improvement, and she struggled with masks. So, I am surprised she kept at it at all. She tried my sleep doctor a couple months ago after getting a matching mask to mine. Now she has a full data auto machine with a better setting, and is doing great. She feels better and averages 8-9 hours a night with it.

[Tino2You]

Zoo,

If it was not for finding this forum, I too would have failed because of my DME. I would have had the wrong machine, the wrong mask and (although not all their fault) the wrong pressure on the machine. And no way of knowing that I felt like crap even after the treatment because it was wrong and I wold have only had a s9 Escape.

Instead, I found there is life outside the fog, and naps are for old people and I felt really bad that I missed my first night in 90 days because of a power outage!

Thanks everyone!

-Tino

[zoocrewphoto]

Zoo,

If it was not for finding this forum, I too would have failed because of my DME. I would have had the wrong machine, the wrong mask and (although not all their fault) the wrong pressure on the machine. And no way of knowing that I felt like crap even after the treatment because it was wrong and I wold have only had a s9 Escape.

Instead, I found there is life outside the fog, and naps are for old people and I felt really bad that I missed my first night in 90 days because of a power outage!

Thanks everyone!

-Tino

I wonder what it would have been like for me without finding this forum. I have a good sleep doctor. He prescribed an S9 autoset, the prescription was dead on correct, and he reviewed my data. So, I know I would have had it better than most. I also had the best mask to start out with, because the sleep tech picked it and fitted it perfectly at the sleep study.

But I know I struggled with fitting the mask at home. And I didn't know until I discovered it here, that I could look at data. And while my data is pretty darned good, I think it helps, like a cheerleader, to see what it does for me and how good my data looks. Seeing that data is also what got my mom started again. And she has now has a new machine with her own data. So, this forum helped me and then helped my mom.

We have a huge advantage, simply by being here. And I wonder how many of us were simply looking for an answer to a question and found this forum by luck.

[jacobsbd]

I had very little noticeable symptom inprovement except my wife sleeps much better and does not have to ask me to change positions. I also know that i don't wake up from my own snoring but that did not bother me. I do know it is good for my health and I do not want to be like many of my older relatives who died in their sleep.

I was very lucky in that my machine and mask worked very well for me right from the start. I also had no fear of small places or of being unable to breathe.

BUT, with new insurance and their insistence on a new mask and hose which do not work for me, I can now really understand how someone could "chuck the !@#$@ thing out the window." The attitude (at the new medical office) that my problems with the new mask were just because I was not used to it and did not know how to put a mask on were just shocking.

If I personally did not know that CPAP could be anything but torture, I would probably not be using my machine either.

[KSMike]

I've "felt like crap" for most of my life. But the first 3 months on CPAP were even worse, with each day seemingly worse than the last. To this day I'm not sure what kept me from chucking the whole mess. I'm glad I didn't, but I can sure understand why someone would.

[ozze_dollar]

This is not a politically correct answer, but I see some people who are just not willing to put up with the difficult adjustment period because they never push themselves to do anything hard, ever. (The word "wimp" comes to mind, but I'm sure I'll draw flames).

Now I know I don't walk in other people's shoes and I really have no idea of their struggles, but we all know people who will give up way too easily.

This did not come easily to me, I came to CPAP kicking and screaming and had a rough adjustment. But one thing I do know how to do is to be persistent and work hard. I whined a lot, but I did not give up. And neither did most of the people here, because we wouldn't be here in the first place if it came easily.

Yes, lack of support is all too common and a very bad thing, but sometimes parsing it out on your own makes you own your therapy and manage it better.

Yes what you say may well be correct.
I think there are two things that will help people stay with a CPAP.
1. You must see a proper sleep specialist and get a proper diagnosis. There must be no doubt in your mind that YOU DO HAVE SLEEP APNIA.
2. You must then educate yourself as to what sleep apnia can do to your body if left untreated.

If you do the obove two things you will be much more likely to stick with it.
I should also mention you need to see specialist people to choose the right machine and the right settings.

If you do all that,you are almost there.

[Roch369]

I've been on the CPAP for one month and been quite a struggle. I don't feel much better. Sleep for maybe an hour or two and wake up. Barely making the 4 hours. I'm trying to stick in there. May start some kind of therapy for CPAP adherence. It feels so unnatural. trying to get used to it. I keep moving around all night and when I look at the data most of the occurences are when i am awake. Once i wake up with mask - i have to take it off.

[49er]

As JohnO said, not everyone feels sleepy or bad before being diagnosed with sleep apnea. My symptoms were very subtle and not anything one would normally associate with sleep. And the other side of the coin is that cpap can make some people feel horrible, at least at first. For the first 2 months, I felt MUCH worse than in my untreated state -- mental haze, cognitive problems, headaches, and irritability. So under these conditions it is a real act of faith to continue to hose up every night. And the expectation that things should instantly improve on cpap doesn't help in the least.

Count yourself lucky and have some sympathy for those who don't take to the therapy as easily as you have (even with your awakenings) or don't see immediate positive results.

As one who has been through hell in trying get this therapy to work for me to no avail, I greatly appreciate this post.

Frankly, I am tired of people being portrayed as wimps and not willing to put up with discomfort or the just do it philosophy. I don't understand why it is so hard to have empathy for people who are struggling for reasons that may not seem obvious.

But I am very grateful for the people on this list who have greatly helped me on this board and through PM. I won't name names out of fear I will forget someone but I am extremely appreciative and try to keep that in mind when I get discouraged about the posts that come across to me as extremely heartless in understanding people's struggles.

49er

[DavidCarolina]

Agreed with above.

With most things in life we find mildly unpleasant, we keep doing them UNTIL some drastic bit of information or event forces us to rethink it.

It wasnt until I felt serious shortness of breath during the DAY that I got diagnosed finally. Before then I KNEW i was waking up gasping. But I
was functioning 100 percent during the day, so like a complete idiot I went right on.

Now, quite frankly no matter what I read on the subject from "professionals" theres no doubt in my mind that I damaged at least part of my brain, perhaps the hypothalmus, to some small extent. Which is a very significant thing, because that part of the brain, im convinced, can cause the onset of other disorders, some not easy at all to correct.

My wifes parents BOTH are prescribed cpap but both are stubborn as mules and "didnt like" it. After 20 years the father is in very precarious congestive heart failure and the other struggles to function but insists that she's quite fine despite med tests and hospitalizations.

She's also stubborn about using oxygen. "I dont want to get dependent". New flash: We're all completely addicted to oxygen every second of every day, and our bodies cant get enough of it.

Its pure ignorance and denial.

[carbonman]

Cpap is about so much more than the mechanics of
blowing air up your nose.
The psychology of cpap involves very personal introspection,
which can be difficult and for some down right scary.
To come to grips w/cpap, one must step outside their safe
and trusted routines and comfort zones. In many cases,
leave them far behind, for good. Whether it be hand holding,
poor me, poor me or 2X4 upside the head help, you can't quit.

This OSA business is emotional and volatile, because we are
talking about life and death. The sooner you can acknowledge the
elephant in the room, however painful that may be, the
sooner you can begin to accept this therapy and get your new life started.

That new life to not only include quality sleep and no fatigue,
but a chance to know that you have the capability to over come
incredible obstacles in your life. Once you over come the cpap challenge,
carry that into your entire life and realize that there is
no obstacle too large to stand in your way.
Cpap is about so much more than blowing air up your nose.

[Chuck Connors]

Lots of accurate of comments here, in my opinion, on why people give up using a CPAP. Persistence is absolutely necessary. It's not like purchasing a battery operated toothbrush and using that for 2 minutes 2 or 3 times a day. As pointed out by others, there is an adjustment period. It's also very important to find a competent DME provider (+technician) who isn't just trying to push product out the door and actually slows down and takes the time to help the patient. The online tutorials that you can find on the manufacturers websites, as well as on YouTube, have been as helpful, if not more so, than any DME provider I've been to. For anybody who gives up, I'd suggest that they make an appointment with a cardiologist to check to see if any heart damage is being done due to the untreated sleep apnea. -Chuck-