Is my OSA/sleep apnea diagnosis a scam?

[adrianbos]

Hi all! This is my very first post on this forum (or any support forum). I joined over a year ago but haven't joined the conversation until now. I’m really hoping to get some insights from others who have a similar OSA experience.

My question is – is my sleep apnea diagnosis a scam? Let me give you some context.

I’m 33 years old. I consider myself to be fairly healthy (I have good eating habits, but I don’t exercise… I should – I’m at a desk all day). Several years ago my wife complained about my snoring. At the time I was attending university after quitting my job of several years to pursue a career in teaching. It was a stressful year. I approached my doctor about the snoring, and he recommended a sleep study. As a result of the sleep study, I was diagnosed with moderate OSA. I was shocked. I didn't really know what sleep apnea was. The doctor at the time gave me pamphlets and asked me to wear a t-shirt with a tennis ball tucked in the back to keep me from rolling on to my back (that’s my natural sleep position). I tried doing this for weeks, but eventually quit using the tennis ball and reverted to sleeping on my back.

About two years later I pushed for another sleep study. By this time I was living in a different city, so I visited a different sleep clinic and a different doctor. This time the results came back slightly downgraded to mild-to-moderate OSA, and the new doctor suggested that the stress associated with being in school several years earlier may have aggravated my OSA. Now that I was less stressed, my OSA was slightly reduced. Still, he scoffed at my previous doctor’s OSA therapy (tennis ball under a t-shirt) and promptly rushed me to the neighboring sleep management store where I immediately felt pressured into purchasing a CPAP machine. I had generous coverage from my employer, so I purchased the machine. That was one year ago. I used it on and off for a month, trying several masks and not finding any of them comfortable.

Recently I decided to try the CPAP again. My coverage allows for one mask a year, so I purchased a new mask. I tried it last night for the first time, and I find it MUCH more comfortable than the one I used previously. Unfortunately, I still can’t get to sleep with the mask on my face… I end up ripping it off halfway through the night and wake up feeling horrible.

So, if you’ve stuck with me this long – thanks!!! Here’s my nagging suspicion: my OSA diagnosis is - if not a scam - an exaggeration to make money from the sale of the CPAP machine.

I know OSA exists, but I wonder if it’s over-diagnosed… the only real therapy (CPAP) is – after all – a HUGE money-maker. I’m not convinced I have OSA, but in many ways I am hoping I have it, because it would explain the following symptoms:

• I generally wake up feeling tired, though I probably don’t get enough sleep (7 hours a night in general); I never jump out of bed feeling refreshed.
  I have a horrible memory and am very forgetful. My big issue is finding the right words. Despite being an english major it seems I can never remember the word or phrase I'm looking for in the moment. I have struggled with this from my teen years on.
  I often feel my mental capacities are drained and I sometimes struggle to focus (I rarely feel “on-the-ball” with “all cylinders firing”).
  In afternoon business meetings I often feel tired and on the verge of falling asleep (doesn’t everyone?).
  I never dream (perhaps “very rarely” is more accurate).
  I often feel low energy and sometimes struggle find the energy to socialize.

However, I don’t have the following symptoms commonly associated with OSA:

• I never wake up once I fall asleep, and I generally fall asleep fairly quickly. My wife claims I’m a sound sleeper.
  I’m not depressed.
  My snoring comes and goes… it’s not a constant.
  I never nap, nor do I fall asleep randomly during the daytime.

So, I’m considering diving back into the world of CPAP and struggling through weeks of bad sleep with the hopes that the struggle will pay off. But I’m wondering - do I really have OSA? Or am I just a mentally and physically sluggish individual whose problems could be adequately solved with increased sleep and exercise (and perhaps an acceptance of my own limitations)?

So (if you’ve made it this far you really deserve a prize)… is there anyone out there with similar symptoms (or lack of symptoms) who has adjusted to the CPAP machine and found their energy, memory and cognition greatly improved and wakes up feeling refreshed and energized?

Your feedback would be GREATLY appreciated!

Thanks,
Adrian

[dave01978]

Sounds almost like me I am 32 and basically the same thing as you, with the exception that I really enjoy food, and eat alot more then i should, been on cpap for a month and a hlaf and feel much better (although my sleep study showed a problem when I was on my back) other positions it was not bad at all. But I can definitely tell it works, and I no longer wake my wife up, she used to roll me and stuff and tell me to roll over, I slept very deeply and never recalled her doing this.

[Pugsy]

But I’m wondering - do I really have OSA?

Yep.

Doctors don't pull the sleep study numbers out of their behinds. There is documentation behind it, yours for the asking as part of your medical records.

We do improve with cpap treatment. Some faster than others. You have been a member for over a year. So I assume you have read a lot. Lots of stories from miracles to never seeing much improvement. Seems like it is the youngsters like you, as opposed to me (an oldster) want to rationalize why they don't think they have OSA because they haven't seen improvement with using the machine a few days or few weeks or even a few months. It is a life long thing until something significant comes along to change or use.

Just because you don't have one or 2 of the common symptoms associated with OSA doesn't negate the other symptoms you do have...

I don't mean to sound harsh but you will find that I most often speak pretty frank and to the point. I don't doubt your diagnosis for one minute. Your first doctor who suggested the tennis ball thing was probably thinking that you might benefit from staying off your back. I just hate the tennis ball thing. Might as well not sleep. He should have explained it better but hey, most of the doctors don't explain things well anyway.

Okay, climbing down off soapbox..... Good luck to you. USE THE MACHINE.....Keep your good health now while you have it.

[ResmedUser]

No its not a scam. OSA is very real. I agree with you it might be overprescribed these days and is a huge money maker, but my opinion if you have it any worse than mild, and you dont treat it you are not that swift.

If it is mild OSA, I think it depends if you are having symptoms or not. If no symptoms, then you could probably try conservative measures (weight loss, getting rid of your pillow to extend your airway in your sleep, etc.). If you are having symptoms and have even mild OSA, I think it should be treated.

These are just my opinions though.

Compliance with CPAP is low everybody tells me IRL. My sleep doctors tell me that, they have told me they wish they could get their other patients to be as compliant as I am with their CPAP gear.

What the deal with OSA is this. Its a new thing. A new illness. Because its new, doctors are being deluged with "get suspected OSA patients to a sleep study." Their thinking is they can get you into OSA treatment, your blood pressure will lower, your energy levels will increase so you might exercise more, your weight will be lower, etc. And all the other cardiovascular issues that follow from poorly treated hypertension, obesity, lack of exercise they can ameliorate it some.

But yeah to be brutally honest, to deny that big bucks is not part of all this would be to be in denial.

At the same time, to deny that OSA exists and is very damaging to the body would be to be in denial as well.

My thinking is as time goes on and more people get on CPAP, prices for gear will dramatically decrease. Perhaps in ten years or so. At some point they might even make OSA screening kits to be sold OTC.

Mikey

[DreamDiver]

Post your sleep studies with condensed graphs and we can give you an educated lay opinion of how well your doctor diagnosed your sleep apnea. (Be sure to blur out all of the personal, hospital and doctor info.)

In lieu of that, consider borrowing or buying an oximeter and recording your oximetry through a night or two without cpap. If you see your Oxygen levels dipping below ninety in the resultant graphs, you've got problems. You need CPAP. If your oximetry tends to stay well above 90 - somewhere in the 94-or-above range - all night long - you are not a prime candidate for CPAP and probably should look at methods for reducing your snoring. (If you live in the Atlanta area, there are at least three people who live near by who might lend you an oximeter if you came to the monthly CPAP talk meetings.)

If you don't have an oximeter or access to one, take your blood pressure several times during the day after 10 minutes of rest each time to get an average blood pressure. Then in the morning before your feet even hit the floor, check your blood pressure. Do this for a couple several mornings. If your blood pressure on waking is statistically higher than your averaging day-time waking blood pressure, it can also be an indicator that you have sleep-disordered breathing. (On-waking blood pressure usually normal for those who actively use xPAP.)

Snoring and OSA are not necessarily related. I have Sleep Apnea and do not snore - and never have. Age and OSA are not necessarily related. I know a guy who was diagnosed at 25 who is definitely OSA. Being overweight is not necessarily related to OSA. That same 25-year-old was thin.

So Sleep-Disordered Breathing can affect anyone. Using some of the above tools available to you as a non-health professional may help you learn and confirm in your own mind how to approach the original diagnosis.

[robysue]

I used it on and off for a month, trying several masks and not finding any of them comfortable.

Not to sound smug, but that's likely why you never felt any benefit from CPAP---you only used it "off and on" for a month.

It's a very rare OSA patient that genuinely takes to CPAP like a duck to water and immediately wakes up feeling refreshed, full of energy, and ready to tackle the world after their first night of CPAP therapy.

For most of the rest of us, it takes time and perseverance. To start to feel better and function better during the daytime, most of us have to use the CPAP every night. all night long for several weeks or even several months. For example, I've been struggling for four months to adjust. I am now finally beginning to wake up almost refreshed on some mornings---a feeling that I haven't had in several years. Unfortunately I'm also fighting some nasty insomnia that started right at the time I started with CPAP therapy. (And I don't think it's a coincidence.) And I now realize that until my insomnia is also firmly under control, there's a limit to how much better the CPAP by itself can make me feel---even as it is doing my body wonders by stopping the apneas and hypopneas from happening every night.

Recently I decided to try the CPAP again.

Good for you! May you have MUCH MORE LUCK this time around in finding the perseverance to make this therapy work for you so that you will (eventually) start to feel its benefits.

My coverage allows for one mask a year, so I purchased a new mask. I tried it last night for the first time, and I find it MUCH more comfortable than the one I used previously. Unfortunately, I still can’t get to sleep with the mask on my face… I end up ripping it off halfway through the night and wake up feeling horrible.

It's a common problem for folks who are still learning how to sleep with the machine. 'Tis not a natural thing to sleep with a mask on your face and there is a steep learning curve. Best thing I can think of is to NOT beat yourself up about it. And when you wake up without the mask on, but the night's not over, calmly put the mask back on and try to get back asleep. You want to make "SLEEP = CPAP" in your mind if possible.

• I generally wake up feeling tired, though I probably don’t get enough sleep (7 hours a night in general); I never jump out of bed feeling refreshed. Seven hours of sleep should be enough---would likely be enough IF it wasn't being all fragmented apart by your constant need to arouse yourself in order to restart your breathing
  I have a horrible memory and am very forgetful. My big issue is finding the right words. Despite being an english major it seems I can never remember the word or phrase I'm looking for in the moment. I have struggled with this from my teen years on.
  I often feel my mental capacities are drained and I sometimes struggle to focus (I rarely feel “on-the-ball” with “all cylinders firing”).
  In afternoon business meetings I often feel tired and on the verge of falling asleep (doesn’t everyone?).No--not really. People who get quality sleep don't fall asleep just because they are bored. They doodle, they twiddle their thumbs, they work on other things (discretely), but they don't fall alseep.
  I never dream (perhaps “very rarely” is more accurate).
  I often feel low energy and sometimes struggle find the energy to socialize.

However, I don’t have the following symptoms commonly associated with OSA:

• I never wake up once I fall asleep, and I generally fall asleep fairly quickly. My wife claims I’m a sound sleeper.
  I’m not depressed. I'm not depressed and never have been. But I won't claim I was ever a sound sleeper or that I fell asleep quickly. Insomnia and I are old friends. *sigh*
  My snoring comes and goes… it’s not a constant.So did my snoring pre-CPAP
  I never nap, nor do I fall asleep randomly during the daytime.Pre-CPAP I NEVER fell alseep randomly during the daytime. Now for some weird reason, part of my adjustment has involved developing some really MAJOR daytime sleepiness issues that may be related to CPAP or may be related to the CPAP-induced insomnia. But the sleep doctor's PA has been working with me on addressing this particular problem of my adjustment for the entire four months that I've been using xPAP therapy.

So, I’m considering diving back into the world of CPAP and struggling through weeks of bad sleep with the hopes that the struggle will pay off. But I’m wondering - do I really have OSA? Or am I just a mentally and physically sluggish individual whose problems could be adequately solved with increased sleep and exercise (and perhaps an acceptance of my own limitations)?

Don't sell yourself short: "Mentally and physically sluggish" sounds like OSA symptoms to me.

[Julie]

And it could be as simple as the fact that if you're using a nasal mask, you might need a 'full face' one that lets you mouth breathe, because if you're losing air through your mouth at night instead of it going down your airway, you're not getting treated. Happens to a lot of us, and may be worth looking into.

[BlackSpinner]

I never wake up once I fall asleep, and I generally fall asleep fairly quickly. My wife claims I’m a sound sleeper.

It is the quality of the sleep that counts. Also many don't wake up fully, I didn't but in reality I almost woke up many, many times a night.

[Janknitz]

I have Kaiser Insurance. Kaiser is a self-contained HMO. That means it's not only the insurer, it's the provider of my medical care. So Kaiser gets my premiums every month, and the more I use Kaiser services, the more Kaiser LOSES. So they are pretty careful about the services they provide, because they don't want to spend a penny more than they have to on me. Unlike the traditional fee for service model, where the medical care provider makes money for every service you use, it works the opposite way for Kaiser.

Why then, do you think, does Kaiser have a very aggressive program to diagnose and treat OSA? Kaiser really pushes its primary care physicians to recognize the signs of OSA and send their patients for diagnosis. In my regional Kaiser facility, they test around 100 people a week, and I am guessing but I think they diagnose about 50- 75 people EACH WEEK. Mind you that Kaiser doesn't even charge a co-pay for the sleep testing, diagnosis and treatment--only for the machine and supplies (Kaiser is its own DME, although Crapria is the supplier). And believe me--based on the size of my co-pay--Kaiser isn't making any profit on my 20%.

Kaiser determines what they will cover based on EVIDENCE-BASED medicine. And the evidence in sleep medicine shows that a if a person with OSA is properly treated, more expensive illnesses like heart disease, stroke, diabetes, and motor vehicle accidents can be PREVENTED or greatly reduced. So Kaiser is being penny wise and pound wise--treating OSA pays off in reduced downstream medical costs.

No, this is NOT a scam. But denial is a very big part of the adjustment process in dealing with OSA, and that's where you are right now. The fact that you are posting here, and giving the treatment another try, means you understand, on at least some level, that you do need this. But now you need to go the rest of the way to full acceptance, and then buckle down and make this treatment work for you.

Disclaimer: I am NOT the world's biggest Kaiser fan, and I don't mean to promote them through this post or any other. I do think they do a pretty good job with OSA, but that doesn't mean I think they are wonderful about everything else.

[xenablue]

I've slept with my CPAP every night since dx, 4 months ago - I don't feel much better in the mornings - not as tired, but not bouncing off the walls like I'd hoped. I'm hopeful that this will change some time in the near future.

The reason I stick with it, is that I obtained a copy of my sleep study results. Seeing that was enough to make me compliant. Every night except for one or two, my AHI has been below 1.0 - this is a far cry from my sleep study AHI of 21.3 and O2 levels of 66%.

Hang in there - persistence will reward you.

Cheers,
xena

[billbolton]

I’m not convinced I have OSA......

That's the main problem you need to address.

Cheers,

Bill

[kteague]

I would think two studies at different labs over a period of years that reached the same diagnosis would pretty much resolve your doubts. As far as symptoms. I think you know what you need to do is why you keep revisiting this. Or you can keep this on-again off-again approach up for a few more years - or until you exhibit more of the symtoms - and if you do nothing to change things, it's a pretty safe bet you will develop more symptoms. There is an accumulative assault on your body and brain. Think of how the sun can do the skin. For many years things look great and there is no visible evidence of what's going on. At some point the damage is revealed with the appearance of wrinkles and leathery skin, but by then so much damage has been done. Do yourself a big favor and treat your OSA before the evidence is undeniable. Oh wait - it already is.

Not trying to be hard on you - I was once a cpap dropout too. How I wish I hadn't delayed in turning things around. Just do what you gotta do and make this work and worry about proving it all wrong later. I doubt you'll regret it. The other way around, you just might. You're in the right place to find tips to help during your adjustment period. Keep us posted on what you decide and how you're doing. Whether you're gung-ho about it or not, you've got the diagnosis, so you're one of us.

[lbw]

generally wake up feeling tired, though I probably don’t get enough sleep (7 hours a night in general); I never jump out of bed feeling refreshed.
I have a horrible memory and am very forgetful. My big issue is finding the right words. Despite being an english major it seems I can never remember the word or phrase I'm looking for in the moment. I have struggled with this from my teen years on.
I often feel my mental capacities are drained and I sometimes struggle to focus (I rarely feel “on-the-ball” with “all cylinders firing”).
In afternoon business meetings I often feel tired and on the verge of falling asleep (doesn’t everyone?).
I never dream (perhaps “very rarely” is more accurate).
I often feel low energy and sometimes struggle find the energy to socialize[/quote]


When you look at your symptoms you have probable had OSA for a long time. Just using CPAP intermittently will not give you the effect you are looking for. Try wearing your mask during the day or evening watching TV to get used to it.
It can take a few months before you feel the benifts.

[LoQ]

I’m not convinced I have OSA......

That's the main problem you need to address.

Cheers,

Bill

This is an excellent point.

adrianbos, I cannot believe you think this might be a scam. If anything, doctors are not diagnosing enough people with SDB. I went for nearly 3 decades without a diagnosis. And the items on your list of why you think you might not have it, all of those were true of me, for the most part. But back to Bill Bolton's point, your biggest problem is your self-deception.

[ResmedUser]

I sincerely believe if I had been aggressively treated immediately after my original diagnosis for OSA which happened in Fall 2000, I could have salvaged most of my thirties. Instead, I lost the prime of my life due to untreated OSA.

Does that answer your question?

Also, I believe Id probably be in law school now if my OSA had been treated in 2000 instead of 2007. Now I doubt I will ever make it to law school.

Mikey