amazed at this person quitting therapy

[DoriC]

Hi Warren, since you mention neck problems have you checked out different bed pillows?

[DaveLP]

I went through several doctors to find out why I had occasional cardiac arrhythmia, 6 or 8 to be more exact. All told me to lose some weight, lay off sodas and coffee, and exercise more. I was pumping heavy iron twice a week at the gym, benching 225 and doing 90 pound curls. They all told me I was healthy after a couple of treadmill stress tests. One put me on a beta blocker that helped quite a bit. Not one mentioned sleep apnea. I don't think that subject is stressed in medical school because it is an extraneous condition and not a necessarily a body system failure of its own.

After I started waking up in the middle of the night with Afib, I began to Google my symptoms. Finally, I hit a forum post where someone told about similar conditions and pointed out that CPAP cured them. So, I scheduled a sleep study and found that my AHI was 64. I started CPAP and never had another Afib issue, except for one night when my mask came off after being dehydrated quite a bit at the beach.

I'm a believer, but I also respect others' rights to decide they aren't feeling a change from before and stop. It's a free country. If that person were my doctor or dentist, I'd probably find another, hopefully one who was bright eyed and cheerful.

I think that sleep labs sometimes put people on CPAP for the revenue, even it they are just over the mild region in AHI. You have to pay for all the expensive equipment somehow and the appointment charges and hardware sales are all part of the bottom line. There are doctors who are prescribing blood pressure medication for people who score above 140 over 70 in their office and are happy when they come back in 6 points below that line. some of these people are 120 over 70 when they are in a comfortable setting. That is a product of white coat syndrome. I'm sure there are people who score a mild apnea diagnosis who are sleeping fitfully in a strange environment.

[GumbyCT]

While there is no doubt quitting is a personal choice I think there is little doubt it also a poor choice. So we have poor personal choices being made by a doc who is not (or did not) follow his doctors advice - another poor choice? And you want him to do what to you? Now that's another poor choice.

Looking back after treatment began I now understand how the body adjusts to feeling bad and feeling bad becomes our new normal. We don't know what good feels like. Guess I was like a functional drunk. Just getting by one day at a time.

In summary, I think we all know that making poor choices is just another symptom of Sleep Disordered Breathing. What intelligent person thinks it is perfectly fine to hold your breath all night while you sleep?

[tonycog]

Yes, plenty of people give up prematurely, but assuming that everyone who chooses to give up is lazy is an arrogant and at-least-sometimes incorrect assumption.

I never said "lazy", but sometimes a lack of determination is a big part of the problem. I suspect frustration and fatigue are just as common, if not more so. For example, the OP told us that a primary complaint (of his wife/doctor) was air blowing in her face. If it's arrogant to say that her excuse is not a good one, then so-be-it. There are easy solutions to that problem. My wife had the exact same complaint, but never suggested that I put my machine in the closet. She also took the time to learn about my condition and knew that my quitting was not an option. We solved the problem. It was the easiest of the problems that I had in adapting to Bi-PAP.

There are solutions to most of the common XPAP complaints. It takes time and determination to find them. My different non-XPAP-compliant friends think I'm weird because I Googled lots of things relating to XPAP and SDB. Most of them quit within a month or two, despite my offers to help them figure things out. Many of them had AHI #'s above 40 so we're not talking about borderline cases. Two of them both commented that while on therapy they began to feel better and dreamed for the first time in a long time. But they both gave up. Why? For all of the common reasons posted here every day. But the one thing the all have in common is a refusal to learn more, read, and figure out how to make this therapy work. They lacked determination and then came up with excuses and justifications.

I stand by my "bad judgment" conclusion. Two docs in the same family should know better.

Tony

[BrianinTN]

In summary, I think we all know that making poor choices is just another symptom of Sleep Disordered Breathing. What intelligent person thinks it is perfectly fine to hold your breath all night while you sleep?

I'm an intelligent and educated person who increasingly is thinking of doing just that.

I never said "lazy", but sometimes a lack of determination is a big part of the problem.

Emphasis added to the most important word in your sentence. And that really is my whole point. Sometimes, yes, that is indeed a big part of the problem -- or the whole thing. Probably more often than sometimes. Probably "an awful lot of the time." But not always. And that is my point. It is far too easy for people on these forums to armchair quarterback and to assume that the problem is simply a lack of determination, or effort, or experimentation, or any number of things. And more often than not, they're going to be right. But that does not mean that it's always the explanation -- which has been the general point of view in this thread, and is the reason I spoke up in the first place.

Most of them quit within a month or two, despite my offers to help them figure things out.

You cannot definitively generalize to an entire population using information from or about a small part of it. There's a reason why they teach this as a key example in elementary logic classes. There are statistical inferences that one might be able to make about certain probabilities, but you cannot draw a binary conclusion about the overall population from any sample.

I stand by my "bad judgment" conclusion. Two docs in the same family should know better.

Maybe they do and they have decided for any number of reasons -- perhaps valid, perhaps not -- to continue with their present course. There's insufficient information for any of us to know which is the case.

Look, I feel like I'm continuing to be mis-read over and over here, so at the risk of sounding like a broken record, I'm going to try this one last time. I am not arguing that people should not exhaust every option at their disposal to try to make this work. I'm simply saying that (a) sometimes, for some small number of cases, positive airway pressure simply cannot be tolerated; and (b) sometimes, people elect not to continue their therapy, despite a comprehensive and complete understanding of all of the risks. Really, it's impossible to dispute either of these points, so I'm confused why this even continues as any sort of argument.

[rested gal]

I never said "lazy", but sometimes a lack of determination is a big part of the problem.

Emphasis added to the most important word in your sentence. And that really is my whole point. Sometimes, yes, that is indeed a big part of the problem -- or the whole thing. Probably more often than sometimes. Probably "an awful lot of the time." But not always. And that is my point. It is far too easy for people on these forums to armchair quarterback and to assume that the problem is simply a lack of determination, or effort, or experimentation, or any number of things. And more often than not, they're going to be right. But that does not mean that it's always the explanation -- which has been the general point of view in this thread, and is the reason I spoke up in the first place.

I stand by my "bad judgment" conclusion. Two docs in the same family should know better.

Maybe they do and they have decided for any number of reasons -- perhaps valid, perhaps not -- to continue with their present course. There's insufficient information for any of us to know which is the case.

Look, I feel like I'm continuing to be mis-read over and over here, so at the risk of sounding like a broken record, I'm going to try this one last time. I am not arguing that people should not exhaust every option at their disposal to try to make this work. I'm simply saying that (a) sometimes, for some small number of cases, positive airway pressure simply cannot be tolerated; and (b) sometimes, people elect not to continue their therapy, despite a comprehensive and complete understanding of all of the risks. Really, it's impossible to dispute either of these points, so I'm confused why this even continues as any sort of argument.

I understand the points you're making, Brian, and I agree that for some people xpap therapy cannot be tolerated and/or is not the right answer for them when all the pros/cons/tradeoffs are weighed.

Unfortunately there are few "options at their disposal to try to make this work" for way too many people who land in the arms of most DMEs, if they (and I'm not speaking of just the dentist and his wife) do not find their way to a forum like this.

And even if they (the OSA diagnosed in general) do happen to find their way here, and do try everything they can to "make it work" (as you have been doing) .... it simply - might - just - not - work. For some. Not because of laziness, or being unaware of the risks, or wanting an excuse to quit, or lacking will to "keep trying."

[BrianinTN]

Yup, we're on the same page. I actually sort of winced writing what I did -- simply because I know that it gives some people who like to justify/rationalize their decision not to use their therapy a little extra ammo. And that's definitely not my intent at all. Mostly I just wanted to keep the discussion intellectually honest and to acknowledge the few aberrations out there because, well, I'm a bit OCD like that.

[JayC]

For several reasons this example came to mind....

I have been under treatment for what is called major depression for a big chunk of my life. It at this point is sometimes referred to as "treatment resistant depression". When a clinician uses shorthand and says I am "treatment resistant", I make a point to correct that *I* am *not* treatment resistant, the depression is!!!

(as it is turning out, the depression symptoms are FROM something going on in my brain, which may be from long-term SDB (untreated/undiagnosed until 2008!!) or which may be from something that SDB flows from, and then is worsened by....

So when I read that some people are intolerant of pressure, I think, is this talking about their biology or their attitude that is intolerant....? This thread has articulated fairly well that for some it is *NOT* an intolerant attitude, even if they end up quitting. At the same time, it really demands much time and experimentation to *honestly* conclude that it is not an intolerant attitude.

Interesting thread.....and a great example of how words can trip us up in our understanding and agreement!

J

[DaveLP]

We can create little boxes that we think people should be in according to our beliefs and we can try to convince them that this is where they should be. It doesn't necessarily work.

We, on this forum, are generally those who have realized benefit with CPAP vs feeling bad prior to our treatment. In some cases, we didn't know how bad we felt before. Some still feel bad and wonder why. In some cases, I suppose that there are those who see no benefit and no reason to continue wearing a mask all night. We judge our progress by our energy levels and I would contend that they do, too.

I guess my point is that no one can force anyone to continue using CPAP. We might know that the person will eventually die an early death, but they have been educated (hopefully by their doctor) and have decided it isn't worth the trouble. Alcoholics do that all the time. I know that's not a valid comparison, but it is still one that leads to self destruction.

I the case of a medical professional, all we can do is find another doctor. Sure, knowing what we know about CPAP therapy, we know that this person might have bad days off CPAP and misdiagnose our symptoms. For that reason, we find another doctor and go on about our life.

We can comment to that person about the consequences, but can't affect change. We can just take solace in the fact that we discussed the pros and cons with that person and left them to their choice.

[kteague]

Good discussion. While I can be dogmatic about some things, it is good to be reminded of the individuality of each case of OSA and those who are affected by it. It can be hard to distinguish between excuses and reasons. What strikes me is that neither an outsider nor one who is compromised can be sure they are on target in finding the fine line. For every rule there is an exception - a valid exception. It has to be the ultimate frustration to be the one who fits no expectations. I would like to see others exhaust all options before resigning to being the exception. But until I can discipline myself to those healthy habits in which I am lacking, I feel my advice echoes in the emptiness. Who does ALL things that are best for our own well being? However, my shortcomings do not change the facts when facts are present. I can do wrong all day long but still speak known truths. Ok, reading back over this I see I said a whole lot of nothing. LOL Could be because I'm sorting thru it all in my own head.

[warrain]

Hi Warren, since you mention neck problems have you checked out different bed pillows?

Yes Dori. My wife says, whatever cupboard in the house she opens, pillows fall out! Tried so many and none alleviated the problem. Even had one tailor made to my specs. Lost count of the so called "specialists" I've seen. Been on the medical merry go round for about 5 years now. Many want to put me on drugs to treat the symptoms, most of which I avoid as they have too many potential side effects. The neck issue is causing headaches and balance issues. Haven't had any known neck trauma to cause it. Lately, been treated by a physio who specialises in musculoskeletal problems of the neck. Unfortunaely, the two treatments so far have made it worse but I'll persevere for a while. Even had to stop accupuncture after two treatments as it was very painful to undergo and I haven't heard of that happening before. Shouldn't have got me started on this.....
Thanks for caring enough to enquire Dori.

Cheers
Warren

[archangle]

Warren, have you tried sleeping in a recliner? Maybe with a horse collar neck pillow?

It might make it better, might make it worse, but it's cheap to try if you have a recliner.

[Pugsy]

The neck issue is causing headaches and balance issues.

Hi Warren,
I can offer my sympathy with the neck issues. Been down that road myself. Horrible headaches and horrible cervical spine pain. I finally had the surgery (might as well none of the high powered pain pills helped) because the vertebrae had degenerated so badly they were unstable and compressing into the spinal column. It was life threatening as it was at C3-4 level. Sever the spine there and you end up like Christopher Reeves or dead. Ended up with 2 vertebrae being replaced with donor bone and a titanium plate to hold things together. I am not entirely pain free but at least the burning hot poker is gone most of the time.

You probably have already tried a buckwheat pillow. It works well for me and my neck because I need low and firm. I am small woman and large pillow puts torque on my neck and I wake up with bad headache. All I can say is keeping trying to find one that helps. I probably went through 20 over the years.
Good luck

[DoriC]

So now I'll add to the mix, don't know if you know about this treatment already. My son is a New York trained physician but practices mainly eastern holistic medicine for almost 20years. He recently mentioned to me that he's thinking about adding laser equipment to his practice to treat unremitting back/neck pain and migraine. It would be an expensive purchase and there's a question about insurance coverage for this. He sounded enthusiastic for a doctor who's usually overly cautious and sets extremely high standards for patient care just by virtue of the type of medicine he practices. I'd be interested if you know anything about this.

[warrain]

Warren, have you tried sleeping in a recliner? Maybe with a horse collar neck pillow?

It might make it better, might make it worse, but it's cheap to try if you have a recliner.

Yes, tried that but it made it worse unfortunately. Thanks for the suggestion.

Cheers
Warren