Is my OSA/sleep apnea diagnosis a scam?

[JayC]

I'm a side and stomach sleeper (always have been!) (and apneas are a major issue if I sleep on my back!!) so I am not sure why you are sleeping on your back! You say you are using nasal pillows....again, why are you sleeping on your back if that is not your sleeping preference especially?

I am using Resmed Swift LT mask (nasal pillows, correct?) and have no problem side sleeping, stomach sleeping, and usually have zero leaks.......

Care to share more to see if we can help you with whatever issues you are having mask and comfort and position wise.....?

J

[robysue]

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.

Before my diagnosis, I was hardly ever in bed before midnight. Most nights I wasn't even very tired at 11.

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.

Lying in bed for an hour or two trying to get to sleep unsuccessfully is a MAJOR way to encourage the development of a bad case of insomnia. (MORE ABOUT THIS LATER.) But the "cure" for your insomnia is NOT to simply rip the mask off and sleep without it---even though that allows you to fall asleep "fairly quickly". The sleep that you get without the mask is highly fragmented and it is damaging to your body regardless of whether you are still largely asymptomatic.

I'm a side sleeper and I've used the Swift FX nasal pillows mask right from the start. Yes, being attached to a hose does make it hard to move around in bed. And that is frustrating. Eventually you learn to deal with the hose and the mask. In my case the HOSE (not the mask) is the bigger restraint on my freedom in bed. You might find some potential solutions for managing the hose if you sear for HOSE management. Some people find hanging the hose over the headboard makes it easier to turn over.

The mask itself should fit well enough where routine movement in bed shouldn't cause leaks---unless the problem is the hose pulling the mask away from your face. If every little movement seems to trigger leaks, then chances are the mask is not fitted quite right. You really shouldn't need to lie absolutely still for hours on end---particularly while you're still awake and fighting for sleep---just to keep the mask on and leak free.

Now as I've adjusted to xPAP, I have noticed that on my best nights (in terms of both my apnea (low AHI) and my insomnia (low number of conscious awakenings), I don't tend to thrash around in bed the way I used to. Once I'm comfortable, I can usually fall asleep in 15 or 20 minutes without much trouble now; prior to xPAP it would easily take me twice that long to fall asleep.

Now recall you said:

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

Lying in bed trying to NOT move for an hour or two is teaching your mind to associate CPAP = BE WIDE AWAKE since you are NOT sleeping when you are doing this behavior. Not only is this making it much tougher to learn how to sleep with the mask on, but it is also leaving you at risk for developing a case of severe insomnia (if you don't already have one) since you are also inadvertently teaching your mind to associate BEING IN BED = IT IS OK TO BE WIDE AWAKE AND NOT ASLEEP. Once your mind decides that it's ok to NOT be asleep in your bed, it makes it tougher to GET to sleep when you want to be asleep.

And since you "start to go crazy and feel [you will] never sleep" as well, you are also worrying way too much about the time on the clock and what it says about how little time there is before morning. That's another sure fire way to keep the insomnia monster well fed too.

But the best way out of the conundrum is NOT to rip your mask off every night. Instead, what you need to do will take both hard work and some self-discipline.

First, read up on good sleep hygiene rules. A typical example can be found at http://www.umm.edu/sleep/sleep_hyg.htm and another can be found at http://www.sleepeducation.com/Hygiene.aspx (They say much the same thing.) The big rule that you need to get serious about enforcing for yourself is this: Do NOT spend more than 15-30 minutes lying in bed trying hard to get to sleep. If you are not asleep within 30 minutes, then by that time you are most likely TOO ALERT to fall asleep. The usual advice given to insomniacs is to Get out of bed and leave the bedroom and do something pleasant, but relaxing until you feel sleepy enough to return to bed to try again.

So my advice is to try this for at least a week or so: Go to bed with the mask on. Give yourself about 30 minutes to try to fall asleep with the mask on. During this time, move around enough in bed to get comfortable. (That MAY help you realize the seal is not as fragile as you seem to think it is.) Fix any leaks that occur when you are moving around, but don't worry about them. Try not to look at a clock. Just estimate the 30 minutes. If at the end of 30 minutes, you are still awake, then go a head and take the mask off---but also get out of bed and go do something in a different room to get your mind off the mask. Try to do something relaxing and soothing. Reading a boring, non-job related book is good. Listening to quiet music in a semi-dark room is better. Don't web browse or watch tv though. Those can be quite stimulating and make it harder to fall asleep when you go back to bed. And do NOT look at a clock and start worrying about how little time there is before morning. And if you can't resist the temptation to look at the clock during the night when you are lying in bed NOT sleeping, then move the clock to where you MUST get out of bed to see it.

When you go back to bed, put the mask back on. You want to make masking up into a habit---something you do with little or no thought---just like brushing your teeth is in a way. So when you return to bed, mask up and give yourself another 30 minutes to try to get to sleep. Eventually you will fall asleep with the mask on. And that's the key: Until you start to fall asleep with the mask on, your mind cannot start associating CPAP = SLEEP.

Now other folks will tell you that desensitizing yourself to the mask by wearing it during the daytime or early evening in the living room or den to watch tv or read or web browse may help you get to where wearing the mask is less of a problem. That may be useful for you too since all these activities require you to make small minor movements. And so this kind of thing might help you realize that you can move around in the bed with mask on---you just need to deal with managing where to put the hose so it doesn't pull at the mask and cause leaks.

[ozij]

Good to see you posting, adrianbos!
.

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

Here's kink number one for you to iron out. You have to find a pillow, mask, and hose management system that will let you move about and settle down comfortably.

Granted, all of us have to learn "a new way of sleeping" - but lying still in bed is not part of it.

[sardu]

I think back to my dad, who was overweight and had sleep apnea before it had been invented. He had a classic case of it, he was overweight, thick neck, fell asleep all the time, snored real loud and stopped breathing a lot. However, it all when away when he found out he was diabetic and lost 120 lbs. He kept most of that off but never had OSA return.

That said I think OSA, et al, is certainly overtested these days. And, I think you can debate just how accurate those sleep studies are. I still wonder how they got my readings when I hardly slept during the test. I do think drs tend to push you right to machine providers, and that most infomation on apnea, unfortunately, comes from dealers/sellers of the machines. In that environment it is easy to be diagonosed in error.

It's good to question what is going on. Blind faith is just as bad as blind ignorance. Some folks have OSA big time, and, without taking any other steps (most people) get the CPAP and love it because it allows them to maintain their current lifestyle. Facts are that losing weight, and others, can reduce OSA events and even lead to not having to use the machine. FOr some, an event pushes them into prime OSA level readings.

If your having problems accepting the diagnois try going to another dr and another lab. The best ones are at research centers or college medical schools, etc. I know with my tests, both done at a local hospital in a large metro area, I was funneled to a practice dr and given info on CPAPs and such and ways to contact the ResMed vendor (Mid Atlantic). Even the person paying no attention would figure there was some connection there. It does take guts to stand up to all of that pressure (not the kind coming from the CPAP level).

Good luck with your journey. There are many of us who agree with what your saying and welcome those who question this entire OSA thing. There has to be some connection between the tests, the machines and how well you take care of yourself and OSA.

[BlackSpinner]

I think back to my dad, who was overweight and had sleep apnea before it had been invented. He had a classic case of it, he was overweight, thick neck, fell asleep all the time, snored real loud and stopped breathing a lot. However, it all when away when he found out he was diabetic and lost 120 lbs. He kept most of that off but never had OSA return.

That said I think OSA, et al, is certainly overtested these days. And, I think you can debate just how accurate those sleep studies are. I still wonder how they got my readings when I hardly slept during the test. I do think drs tend to push you right to machine providers, and that most infomation on apnea, unfortunately, comes from dealers/sellers of the machines. In that environment it is easy to be diagonosed in error.

It's good to question what is going on. Blind faith is just as bad as blind ignorance. Some folks have OSA big time, and, without taking any other steps (most people) get the CPAP and love it because it allows them to maintain their current lifestyle. Facts are that losing weight, and others, can reduce OSA events and even lead to not having to use the machine. FOr some, an event pushes them into prime OSA level readings.

If your having problems accepting the diagnois try going to another dr and another lab. The best ones are at research centers or college medical schools, etc. I know with my tests, both done at a local hospital in a large metro area, I was funneled to a practice dr and given info on CPAPs and such and ways to contact the ResMed vendor (Mid Atlantic). Even the person paying no attention would figure there was some connection there. It does take guts to stand up to all of that pressure (not the kind coming from the CPAP level).

Good luck with your journey. There are many of us who agree with what your saying and welcome those who question this entire OSA thing. There has to be some connection between the tests, the machines and how well you take care of yourself and OSA.

One anecdote doesn't invalidate dozens of studies. Most people with OSA CAN NOT change their lifestyle to save their lives because the OSA is causing such a big problem in their lives to begin with. Besides which weight is only one of the causes, the most visible one, the rest are throat structure and brain function.

It is very easy to see people stop breathing - they stop breathing and their whole abdomen goes concave. If you can count higher then 10 you can physically count the times they stop breathing all night. Add an oxymeter and a heart monitor it is really easy to see the effects. Any caveman can diagnose basic OSA.

[Big Daddy RRT,RPSGT]

Poor man's sleep screener...You have some of these signs and symptoms...you snore loudly...you sleep terrible, or feel drowsy/sleepy even after a full night of sleep, or you have trouble concentrating, struggle with depression, or have frequent morning headaches, or have trouble sleeping on your back, or awaken gasping for air, or you are overweight or obese, or you have poorly controlled hypertension, diabetes, or cardiac arrythmias.

Start with snoring and add two others...you have a very high likelihood of having OSA.

Now ask your bedmate they'll tell you if you have obvious OSA...you snore loudly and stop breathing in your sleep...yep you got it.

Sleep alone?...tape record yourself sleeping...Whats a tape recorder? (Damn you are young!) Okay video record your sleep.

Mild OSA is not as obvious but can still give you sleep problems or make you feel drowsy as well and may cause other health problems...you have some of the above symptoms...your snoring is variable, louder at times, softer at times...you may have mild to moderate OSA...it's more difficult to tell...if you have mild OSA you may benefit from CPAP...only one way to know for sure...get a sleep study...and then if you have OSA...try CPAP. Once you get used to CPAP you may feel better.

Now you sleep and feel great, you don't have hypertension, diabetes, cardiac arrythmias or any other signs or symptoms but you snore a little...you probably don't have OSA...then why are you here wasting your time reading about OSA?...denial is not just a river in Egypt!

[no_more_headaches]

OSA gets WORSE as you age. I had a test 15 years ago and I was mild 10-15 events per hour. I walked away and di not do CPAP.
I took the test again 4 years ago and I was severe at 29.5 average events and 78 events when I am flat on my back.

[ARDECEE]

C-PAP MACHINES ARE GENERALLY A SCAM, WITH THE PHYSICIAN PRESCRIBING THE MACHINES GETTING BIG KICKBACKS.
THE PHYSICIANS ARE REALLY THE ONLY ONES GETTING ANY REAL BENENFITS FROM THE MACHINES. THERE IS AN INVESTIGATION ONGONG BY THE AMA AND CONGRESSIONAL COMMITTEE CONCERNING THIS SCAM.

[jmelby]

C-PAP MACHINES ARE GENERALLY A SCAM, WITH THE PHYSICIAN PRESCRIBING THE MACHINES GETTING BIG KICKBACKS.
THE PHYSICIANS ARE REALLY THE ONLY ONES GETTING ANY REAL BENENFITS FROM THE MACHINES. THERE IS AN INVESTIGATION ONGONG BY THE AMA AND CONGRESSIONAL COMMITTEE CONCERNING THIS SCAM.

Edit: RDawkinsPhDMPH.... it lists this as you, but reading your other posts, I find that hard to believe. Did someone else with the same IP address post this?

[archangle]

Well, a particular sleep apnea diagnosis could be a "scam". It could just another treatment the doctors tend to prescribe because they have a bias to prescribe treatment. We all tend to believe in and "sell" whatever it is we do for a living. The doctor may be overprescribing CPAP but fully believe it's the right thing to do.

However, a lot of people DO need treatment for apnea. If you need it and don't get it, bad things can happen. Blood pressure, weight gain, poor sleep, heart attack, etc. I had my machine set wrong and had terrible nausea and heartburn, probably from some kind of reflux until I fixed my machine.

[Bluecat]

Sleep apnea does come in different flavours It is not because you don't have all the predispositions and symptoms that your diagnosis is a scam.
I am overweight and snore loudly, and that's it.
I have normal blood pressure, slept soundly (never got up during the night), no problems getting up in the morning. Everybody around me has always considered me to be a very active person, which I am! My score on the Epsworth scale is 0 (even before the machine). I very rarely had to see a doctor (except for my yearly medical check-up for my pilot's license, which is how I was sent for a sleep study).
But the sleep study showed an AHI of 108, with terrible oximetry results (I don't remember the figures). And I don't believe it's a scam.
I was prescribed an APAP machine (the doctor didn't even want to wait for a titration study as that would have taken some time, as it takes several months to get an appointment! He was even doubtful the APAP would be enough)
I have been fully compliant since the beginning (7h30/8h per night) but I am lucky as the mask and machine don't bother me at all (and reading stories here, I can see it is not everybody's caase unfortunately). I have gone down from an AHI of a 108 to a 1.5 average, without needing a BIPAP or supplementary oxygen.
I see no difference in my everyday life (as there can't be any!) BUT I know that being compliant will lower the risks of many problems later in my life (Type II diabetes, heart problems...). I don't want to die of an OSA related cause, just because I couldn't feel an immediate and obvious benefit of using my machine.
I understand that it is difficult to accept such a diagnosis of what is probably a lifelong condition, especially when you feel you are perfectly healthy. But OSA is damaging your body, deep down. You have been lucky to discover it before it is too late.
The treatment is easy, you've got to make it a part of your living, just like brushing your teeth. There is a lot of advice to be found around this forum on how to become friends with your machine and mask. Come and share your difficulties but also your achievements here, you will find plenty of people to help you and listen to you.
We hope to welcome you in our group of happy (and compliant) hoseheads!

[Starlette]

I dont have time to go through all the posts. One thing that helped me in relaxing with mask. Once I've masked up and turn machine on is listen to the rhythm of the sound of moving air. For me it becomes hypnotic and I'm out.

Starlette

[dae3dae3]

I never had classic symptoms such as falling asleep during the day.

My sleep test had my AHI at 126.

[Big Daddy RRT,RPSGT]

C-PAP MACHINES ARE GENERALLY A SCAM, WITH THE PHYSICIAN PRESCRIBING THE MACHINES GETTING BIG KICKBACKS.
THE PHYSICIANS ARE REALLY THE ONLY ONES GETTING ANY REAL BENENFITS FROM THE MACHINES. THERE IS AN INVESTIGATION ONGONG BY THE AMA AND CONGRESSIONAL COMMITTEE CONCERNING THIS SCAM.

Yeah thats why I sleep and feel better...because I've been scammed!

[PhoebeDear]

I think sleep apnea is way over-diagnosed as a new money maker for the physician, the sleep study clinic and the folk that sell the CPAP machine. I am a 62 year old unmarried woman, who fits the category of baby boomer ' age 60 is now the new age 50. In other words, I just sent my kid off to college and got started dating again. I spent the night with a nice fellow, who in the morning informed me that I snore. Never heard from him again...so I went to a young ENT doctor with credentials and awards mentioned all over his website and asked to be treated for snoring. He said the insurance would not pay for snoring treatment unless I could be diagnosed with sleep apnea. I asked if I could just pay out of pocket for treatment and he scoffed at the idea and said it was 'too expensive'.
I agreed to the sleep study- and when I arrived at the study site, the woman assigned to me stated that the doctor had order use of a CPAP machine during my stay if I showed signs of apnea. She did not explain to me what a "cpap machine' was- just tried a couple of masks on me. At 2am she flips the light on and enters my room & states that she is hooking me up to this electrical device with a hose on it next to my bed. I told her that that was not going to solve my problem (which was being a woman a man would want to snuggle up to in bed-a woman breathing quietly through the night) and she started berating me for not caring about my heart (like I had any idea what connection that had with anything- since no one had bothered to explain anything to me).
She got the masks on me after much protesting on my part, I was so angry that I laid there for an hour thinking ###!!@@@## about this woman who had just verbal attacked me and got this mask on me- which I had no idea how to remove- which was frightening in itself- - so I felt like a tied-up hostage victim. In the morning, when I got home from that, I started my Google search on this. First of all, this young ENT MD did not offer cash and carry for snoring treatment in his office, but I found that many ENT MD's do and that I could either laser the back of my throat to make the soft palate 'tougher' or there is this thing called "the pillar procedure"- I found a new ENT MD that does both of these for cash & carry at $ 2000. which is way less than what my insurance would have ended up paying the first doc. (My out of pocket part of the sleep study was $750- insurance paid $750) New doctor told me to lose 20 pounds too (that would put me at 135lbs I am 5'6" I enjoy working out, and swim laps regularly along with enjoying Zoomba aeobics and weight lifting already- so yeah- 20 pounds would be easy to lose for me. The first doctor did not suggest obesity was a factor- but think about it, more fat around the neck, means a narrower airpassage-that fat is on the inside of the neckarea as well as what you see.

I got a copy of the sleep apnea study done that night. Sure there were some signs of apnea, but I was forced to sleep on my back for 75% of the time- - which only 15% of us do naturally out there- only other position allowed was on my side- and the apnea was very marginal. It also showed that with the CPAP machine I had more incidences of it than breathing on my own.

The second doctor explained how the "CPAP machine" game works... in order to have the insurance approve surgery to correct snoring (which required DX as apnea) I would have had to demonstrate for 90 days of use on the CPAP machine that I was not a good candidate for it. He said in order to do that, I would have to complain regularly during those 90 days to those that my insurance company rented the machine from (at $1000/month) that the mask was a bad fit- until they ran out of masks- (meanwhile more billing to the insurance- probably by the ENT doc as well for office visits to monitor my progress)

Then after wasting 3 months of my life -no dating during that time -because - I'm busy scamming my insurance for CPAP machine failure and with added stress of calling around- driving over to the place that fits the masks (when, on my lunchhour?) and messing with the mask & more rude healthcare people. If I failed to be cranky enough about the mask not fitting right- then the process would stop there & I would have wasted my time & still not have had my snoring corrected. but, if I succeeded in jumping through those hoops, I would then have proven that I was to be a candidate for surgical correction- but not for the 'classic' procedures offered to stop snoring, as they are not approved. Instead it would be more invasive surgery. (do your own google on that) .
Insurance renting the machine $3000- for 90 days- plus the surgery I was seeking out - by the time I was done I figure in less than 6 months no less than $20,000 would have been spent by my insurance & me (wasted money & valuable time) including the surgery they would approve (hopefully) and it would have been the wrong surgery.

For borderline cases, such as mine, I think it is much better to not become dependent on a machine blowing positive air pressure into your lungs all night, as you own diaphragm will get lazy and atrophy- then when you want to sleep without it, for post- love-making sleep or traveling purposes, you won't be able to take deep breaths naturally while asleep, as your body won't want to do it-its been pampered with this air machine gimick. Also, the psychological effect of being so 'deficient' that breathing without the assistance of CPAP just creates a person more and more dependent on the medical system and healthcare workers out there. BTW I need to mention, that when I sought out treatment I felt that my sleep was adequate and I was not tired when I woke up-I feel alert throughout the day. I am working 40 hours a week as a Registered Pharmacist and have a full and active life in my free time. I just happen to snore...and wanted to get it fixed and ran into a messy system setup that seeks out as many victims as they can get those $$$ through said victim's insurance....

I am sure that for people that are falling asleep throughout the day and can hardly drag themselves out of bed every morning- even though they allow the full 8 hours for sleep- a CPAP machine is a life-saver... but it looks to me that they just want to ensnare as many people into this CPAP trap as they can. When I left that sleep clinic, it was several weeks before I got over how intimidating the whole process was. I mean, think about it, breathing is right up there in importance as your heart beat...and when a "medical expert" tells you that you can't do it without a device- because some squiggly lines on a sleep study says so- it it pretty mind blowing- & I had to convince myself - even though I am symptom free-except for the snoring- that those 'experts' were wrong and to do my own thing. What a scam.