Is my OSA/sleep apnea diagnosis a scam?

MeghanRF · Post by **MeghanRF** » Sun Feb 06, 2011 4:25 am

Hey!
I'm a 28 year old not-overweight female who doesn't snore (or so I thought, it is audible to sleep study microphones). I too wondered if it was for real. After my first sleep study when they told me I had sleep apnea, I was like, no way, I'm one of the deepest sleepers I know and I don't snore. I was convinced that the sleep study was incorrect due to the fact that I made myself weird and anxious during the sleep study. For the second sleep study, I asked the doctor if I could do an hour or so without the mask just to double check that I really had it. Apparently I did still have it, even with the mask on I was having apneas (until the pressure was turned high enough).

So, I hear what you are saying, I didn't believe it for the first couple months. But, it's funny, I think because of the profound sleep deprivation, that is actually why I thought I was such a deep sleeper, because though I'm waking up all night, i'm so deeply tired that I don't even register it. After the diagnosis, as I really tuned in to my body, I started becoming aware of how sleep felt, and that while not a light sleeper in the sense that people/things wake me up (quite the opposite). SLEEP doesn't feel deep and restful and relaxing. When I wake up, it feels icky. I don't remember waking up all night, but I know I feel like sh*t.

That's what counts in my mind... if your sleep study shows it and you feel like total crap and it's affecting your life. That's enough in my opinion to give the cpap a real good try. If you give it a few months and really do it and don't notice a difference, then que sera sera... but if you do. There's your answer.

I don't fit the profile either, but I am TIRED of feeling awful and like I can't function. I felt awake today for maybe the first time in my life (after 8 hours of cpap for the first time)... and all I could think was, how in the world have I been living the way I've been living for so many years?

It is a true shame that we get used to living with such a low quality of life and such sleep deprivation. I hope you find relief in whatever way you can!

rosiefrosie · Post by **rosiefrosie** » Sun Feb 06, 2011 6:44 am

Let's see, in order to have sleep apnea, you have to be overweight, snore really loud, fall asleep while driving, fall asleep anywhere for that matter, never exercise........... the 'stereotype' for sleep apnea. I am average weight, walk 4-5 miles everyday ( even participate in 1/2 marathons and 10ks ), never napped or fell asleep at the drop of a hat. I did snore, very loud and would wake up gasping for air. I had troubles concentrating and was ready for bed at 6 in the evening. We all can't fit into that box that is labeled Sleep Apnea signs and symptoms.

I don't think it's a scam and think you most likely have OSA. Use your machine and learn what you can from this site.

Good Luck, rosie

jetcpap · Post by **jetcpap** » Sun Feb 06, 2011 8:24 am

Well let me chime in if I may.

39 year old male, 177lbs, 5'9", gym 4 times a week.
On meds for high blood pressure, couldn't believe it when I started and for 2.5 years of gyms and losing weight not only did my BP not go down, it got worse.
Suffered from headaches in the morning.
Slept horribly. I job has me crossing time zones all the time and sleeping in different beds every layover.
My main problem was actually falling asleep or waking up every hour to hour and a half with me struggling to get back to sleep.

However, I never fell asleep at the controls, never fell asleep while driving home nor pass out on the couch watching tv or in a conversation.

When I did my sleep study and the result came back of mod-sev osa (RDI 26 with O2 in low 80's) I was not only angry but skeptical of this whole treatment. I had a preconditioned thought of anyone doing a sleep study would be diagnosed with osa and that is not what I believed I had.

So, all this brings me to your struggle. Yes, I felt that CPAP was some sort of "snake oil elixor" or perhaps a money grabbing scheme. All I can say is this, to get back to work I had no choice but to use the machine so that the docs and faa could see compliance. I have used it for almost seven weeks and YES, I do feel better. My headaches are virtually gone, I sleep better, not irritable, no bathroom visits 4-5 times a night, and hopefully with time my BP will go down. So I felt as you but I absolutely CANNOT deny the benefits of this machine and therapy.

I hope this wan not too long but even more I hope this helps. Good luck and keep us posted!

SleepyT · Post by **SleepyT** » Sun Feb 06, 2011 8:27 am

Well...you've gotten some great advice here so far. There is really nothing more I can add that hasn't already been suggested. I do have sympathy for you though. It has to be very difficult to be so young and have OSA. At 51 years old I find having to wear a mask every night very unsexy...I can only imagine what I would have thought of it at your age. NOT FUN! But great for your health. Good luck to you!

Kahfree · Post by **Kahfree** » Sun Feb 06, 2011 12:06 pm

I was diagnosed on January 10th of this year and received my machine on January 17 after a week long study at home on a borrowed machine to see where my pressure needs to be to reduce or stop the apneas. I am so new to it I do not even know what to call that kind of study. However, I have been through hell trying to cope with the mask. I was panicking, had claustrophobia, anxiety, and feared going to bed. Today, it is day 20 I believe, of using my machine, and since finding that a nasal pillow works best for me, I go to bed, put it on and doze right off to sleep. I love the nasal pillows because I do not feel the air going down my nose, although one would think you would. The full face mask did not work for me. I am not 100% compliant, but I do use the machine every night and am going to succeed with the treatment because now I fear NOT using it will lead to an early death. I am not sure about you, but I have a lot of life I want to live!

I don't think its a scam, but I understand your shock in knowing you have this. I too was, and I think I started off in denial and I did cry, and wonder if this was a prison sentence...but really, prison is more like those who have other medical issues from untreated apnea and are doomed to medical procedures to help correct damage to their body. So far, my ONLY issue is high blood pressure. I am healthy otherwise, and I believe the therapy will help me prevent further damage to my body.

If OSA is a scam to make money, so is diabetes, high blood pressure, heart disease, stroke, cancer, etc. All those things and more need medical intervention to help combat the disease. All of those conditions also make a lot of money for the pharmaceuticals, doctors, hospitals, labs, etc. However, there is no denying that they need the treatment to survive, just like OSA.

Keep trying and you will succeed. Try different masks. I have used three so far in 20 days. I wont quite, and at times I am frustrated, but these last 6 nights on the Nasal pillow are working better for me.

avi123 · Post by **avi123** » Sun Feb 06, 2011 1:06 pm

adrianbos wrote: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

Comments:

1) Isn't snoring = OSA?

2) From your story I could easily suspect that you might suffer from: OSA, Narcolepsy, ADHD, etc.

3) Why have you not been checked, till now, by real MDs such as: Internist, Neurologist, ENT, psychologist etc., especially since you could get their services almost free?

4) What if you suffer from ailment(s) that none of has. How are we to guess"?

VA3AEQ · Post by **VA3AEQ** » Sun Feb 06, 2011 1:28 pm

ResmedUser wrote: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

Amen - I too wasted a bunch of my 20's and 30's disbelieving my wife that I had some sort of apnea. I may have finished my education rather than dropping out. Sucks!

ResmedUser · Post by **ResmedUser** » Sun Feb 06, 2011 1:43 pm

VA3AEQ wrote:
ResmedUser wrote: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
Amen - I too wasted a bunch of my 20's and 30's disbelieving my wife that I had some sort of apnea. I may have finished my education rather than dropping out. Sucks!

Yeah, just imagine. I get mad about it when I think about it so I try not to think about it. If I had been aggressively treated with CPAP in 2000 when first diagnosed, rather than in 2007, I'd be living a totally different life right now.

Unfortunately, the insurance I had in 2000 sucked and the doctor I had at the time (a lousy PCP), refused to have me treated. I badly WANTED to be treated for OSA in 2000. I should go back and sue that doctor and have a pitbull trial lawyer rake him over the coals until he has a mental breakdown in court, but I bet the statute of limitations is over.

Mikey

scrapper · Post by **scrapper** » Sun Feb 06, 2011 2:11 pm

ResMedUser: Unfortunately, the insurance I had in 2000 sucked and the doctor I had at the time (a lousy PCP), refused to have me treated. I badly WANTED to be treated for OSA in 2000. I should go back and sue that doctor and have a pitbull trial lawyer rake him over the coals until he has a mental breakdown in court, but I bet the statute of limitations is over.

Mikey

Thankfully the statute of limitations is long since past. You should only blame yourself for not being a better advocate for your own healthcare. You could have chosen or followed up with a different PCP or specialist better to your liking, and forked over the money or found something within your budget. Please do not blame the doc, your insurance, or anyone else............it starts and ends with you. Hind sight is always 20/20.

GumbyCT · Post by **GumbyCT** » Sun Feb 06, 2011 2:16 pm

adrianbos wrote: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

Adrian being a member here for over a year is not sufficient therapy. You need to spend some time here reading, searching and reading some more. This is a self-help forum with a collection of info from people just like you (and me) who have mastered their therapy.

Those times when you are not snoring are prob when you stopped breathing. Just how long can YOU hold your breath?

OSA is big money mill there is no doubt. Even if you are caught in a scam doesn't mean you don't have OSA.

I think OSA is as common as cavities and arthritis and we become used to feeling down and deprived which is "our normal". Sleeping with a mask on does take a lot of getting used to. Ripping the mask off during the nite may be a sign you aren't getting enuff air or have a leak which is waking you.

Do NOT rely on your docs or DME to help you, they do not feel your pain but do have boat payments to make. Make your self a plan - keep a notebook and just sleep a little longer each nite with the mask on. Funny to say but before long you won't be able to sleep without it. lol

After reading your post I didn't bother to read the rest of the posts so forgive me if others have already spanked your bottom. I don't do the hand holding thingy so I've said my piece now it's up to you.

"If it is to be it is up to Me!" UNK.

Good Luck

ps. the brain does need sleep AND O2 for memories and to process your thoughts. Meaning we tend to make poor choices when OSA goes untreated. Very poor choices.

Big Daddy RRT,RPSGT · Post by **Big Daddy RRT,RPSGT** » Sun Feb 06, 2011 5:46 pm

The testing is done by the sleep lab. The Doctor interprets separately. The home medical equipment company sells you the machine. By law there is a split so the conflict of interest is minimized.

You have been diagnosed twice in two different labs so you have sleep apnea...confirmed. Mild to moderate vs moderate still confirms your diagnosis and your symptoms match dead on. But you have been scammed because you don't have all the symptoms? Who does? Each person with OSA has a set of symptoms that vary.

I know one thing for sure as long as you don't believe you have OSA then you won't accept therapy and you will throw it off everynight. The first step is acceptance without acceptance it's very difficult to find good sleep. Once you accept your diagnosis and accept CPAP as the treatment you'll tough it out and find solutions to your issues. Then you might find the sleep you are missing. I hope you start feeling better.

ResmedUser · Post by **ResmedUser** » Sun Feb 06, 2011 7:16 pm

scrapper wrote:
ResMedUser: Unfortunately, the insurance I had in 2000 sucked and the doctor I had at the time (a lousy PCP), refused to have me treated. I badly WANTED to be treated for OSA in 2000. I should go back and sue that doctor and have a pitbull trial lawyer rake him over the coals until he has a mental breakdown in court, but I bet the statute of limitations is over.

Mikey

Thankfully the statute of limitations is long since past. You should only blame yourself for not being a better advocate for your own healthcare. You could have chosen or followed up with a different PCP or specialist better to your liking, and forked over the money or found something within your budget. Please do not blame the doc, your insurance, or anyone else............it starts and ends with you. Hind sight is always 20/20.

I was too sick at the time to be a better advocate for my own healthcare. I was almost dead at that time. All it takes is two or three days on properly titrated CPAP and I suddenly improve and become a better person.

There are lots of folks IMO who off CPAP are so bad off they cannot do a good job advocating for their healthcare. This is the shame and dishonor we have in our American healthcare system. A wealthy nation who treats its sick and disabled like dogshit.

Mikey

Twentysix · Post by **Twentysix** » Sun Feb 06, 2011 7:21 pm

ResmedUser wrote: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

Why can't you make it to law school now? You can study at any age and at any pace. If you work, just do it in a slower pace. But don't forget about it if that is what you want to do!!! go for it, Mikey!

Bookbear · Post by **Bookbear** » Sun Feb 06, 2011 11:23 pm

Adrianbos, others have made all the points I would have mentioned, so I won't repeat, except to say this: the mask is CRITICAL. More than any other single thing, a comfortable, good-fitting mask (i.e. minimal leaks) is the key to successful cpap therapy. Your original post shows that you have experienced this to a degree. Cpap machines must be used every night to be effective, so the comfortable mask is imperative for compliance. Try as many masks as you can, buy and resell if necessary (cpapauction, etc.) until you find the one that works best for you. And don't be surprised if your needs change as you age and your face (inevitably) changes shape. This is especially true if you use a full face mask, less so with nasal pillows or a nasal mask.

Good luck with your therapy!

adrianbos · Post by **adrianbos** » Sun Feb 13, 2011 9:04 pm

I just wanted to thank everyone for their response to my post (I was half-expecting to log in to cpaptalk.com and have 0 responses!). Even though I've been a member for a year, I obviously haven't dug very deep or read many posts, and I can see by your responses that cpaptalk is going to be a big help/support as I move forward with osa treatment.

Just a few points of clarification: I never said that I believed OSA was a scam - just that I thought that it was over-diagnosed, and that perhaps my diagnosis was a scam (poor choice of words perhaps).

Also, this is the strange thing... I tend to stay up late - midnight every night (I don't have to wake up for work until 7:30). And even though I start to get tired around 11, I find I feel pretty productive till about midnight. Just one of those things that seems contradictory to OSA symptoms - but as a few people have pointed out already - OSA comes in different flavours.

As some of you pointed out - I'm in denial. I'll be honest and say part of me still doubts I have OSA, but I know that I owe it to myself to apply myself and use the CPAP machine nightly until I iron out all the kinks... just to see if it makes a difference (and I know there won't be an overnight improvement).

The hardest thing for me at present is the fact that my movement is restricted. I have a nasal pillow mask which is relatively comfortable... but after lying in bed for an hour or two without really moving I start to go crazy and feel I'll never sleep - so I rip of my mask, turn on my side and fall asleep fairly quickly. Perhaps I need one of those mask pillows.

Thanks again for your responses!

Is my OSA/sleep apnea diagnosis a scam?

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Mask	Humidifier

Additional Comments: I actually own the Resmed S9 full maxed out APAP, but Id rather have an older S8 APAP as I think the S8 APAPs were better.

Machine	Mask

Additional Comments: Avg. AHI .4