Disadvantages to being diagnosed with Sleep Apnea?

I have two sons with sleep apnea. For complex reasons, we ended up buying an S9 on the "grey" market for my second son as the doctors battled the insurance company. He was finally sent to a DME and also got an S9, so we have a spare.

I am overweight, over 60, snore, etc. my wife egged me into trying the APAP. Bottom line it, it really helped. I wake up better, more alert, no snoring, and have had beneficial side effects, like no acid reflux at night, and vastly reduced PVCs.

It is helpful to go ahead and get diagnosed, or am I better off just staying "off-grid" with this?

Thanks
Jim

The only disadvantage I can see with accepting treatment, is longer life and better health. Jim

If you don't get diagnosed (even if only in a 'home' study using your sons' machines to titrate your pressure settings) you won't get a prescription for a new machine with software, etc. to tell you how you're doing (apart from how you feel) and/or what's not working if you suddenly don't feel so hot. No script, no machine, unless you take a chance on an old one from Craig's list with who knows how many hours on it. And you can't get masks without a script either, unless you buy all the parts from e.g. Cpap.com and put it together yourself, hopefully correctly, but with no choice of mask, nowhere to try on different ones as you would at a dealer.

And you won't feel great any more and your wife may end up an early widow, or worse, having to take care of you in whatever state you might be left in by a stroke, never mind an MI.

Stay off the grid, and play Russian roulette... at least your sons have been caught early, but you're already damaged goods by who knows how many years of not being treated.

jmdearras wrote:I have two sons with sleep apnea. For complex reasons, we ended up buying an S9 on the "grey" market for my second son as the doctors battled the insurance company. He was finally sent to a DME and also got an S9, so we have a spare.

I am overweight, over 60, snore, etc. my wife egged me into trying the APAP. Bottom line it, it really helped. I wake up better, more alert, no snoring, and have had beneficial side effects, like no acid reflux at night, and vastly reduced PVCs.

It is helpful to go ahead and get diagnosed, or am I better off just staying "off-grid" with this?

Thanks
Jim

Depends.......
Prior to the recent changes in health insurance rules, "pre-existing conditions" were a big deal. Not so much these days.
With a prescription, equipment and supplies are a bit easier to purchase. But, not impossible without one.

But, in hindsight, if I could have stayed "off the grid" nine+ years ago, I'd have done so. But, once you get tossed into the medical machinery and evaluated and labeled, it's kind of hard to do that.

Your call.


Den

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I believe that the OP has tried using a machine and feels better doing so. I believe his question is whether he should just get a machine and use it without going through the "medical mafia".

If I understand that correctly, my answer is to get one and use it, regardless of whether you go through the diagnosis and get a medical "label" in your records.


Den

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If you do have sleep apnea, it could hurt not to be diagnosed. Sleep Apnea can cause heart attacks, strokes, and more. Look at it this way: How many years will it be until your sons are grown and out of the house? Do you want to miss their graduations, their weddings, and the grandchildren that may come along? If you nod off while driving with your sons in the car, do you want to risk injuring or killing them because you drove into a brick wall when you fell asleep? A heart attack that kills you at age 85 won't be nearly as damaging to your family as it will if that heart attack kills you at age 45 when your sons are in college or about to be married.

I cannot think of any disadvantages, except for the expense and inconvenience. Seems to me it's worth the disadvantages.

Gotta be honest, I'm all for a diagnosis but it ticks me off that this stuff requires a prescription. I should be able to get one at a drug store. Where's the potential for abuse? It's not like anyone's going pay $500+ to buy a machine they don't need. Worried we'll use the wrong pressure? Heck most of us on these boards know more than our doctors! (Seriously, I told the doctor what to put on the prescription so I could get the machine I wanted).

As it is, if you don't know what you're doing, you get a diagnosis, get sent to a DME who gives you whatever he has in the back closet. Why not say, "here's you're diagnosis, here's your pressure, go get yourself a machine"?

/End Rant/

Because life is easier with a prescription and you might need help finding the right pressure I'd go for the sleep lab if you can afford it/your insurance will cover it. Sadly those are really the only reasons...

jmdearras wrote: I am overweight, over 60, snore, etc. my wife egged me into trying the APAP. Bottom line it, it really helped. I wake up better, more alert, no snoring, and have had beneficial side effects, like no acid reflux at night, and vastly reduced PVCs.

It is helpful to go ahead and get diagnosed, or am I better off just staying "off-grid" with this?

Thanks
Jim

The official diagnosis is helpful if you end up needing surgery or in the hospital for any other reason. It can make a difference for the anaesthesia and to be allowed a cpap in your room.

I fully intend to continue treatment that's not the question.as to getting the equipment, it's not hard to get good quality machines, even new. The grey market s 9 I bought was brand new, and new masks are available without prescription from some websites.I am currently using the AutoSet ResMed s9. I have monitoring software and can tell how I'm doing. Neither of my sons, who went through DMEs, get any sort of feedback at all.

the question is, are there disadvantages and advantages 2 a medical diagnosis of sleep apnea, assuming I am going to continue self treatment.

When I went to the hospital in 2011, nobody asked me whether I had a prescription for mine. I just brought my equipment with me. One of the hospital RTs plugged a digital manometer onto it to check the pressure it was set for, but nobody asked me to justify the pressure setting.


Den

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jmdearras wrote:I have two sons with sleep apnea. For complex reasons, we ended up buying an S9 on the "grey" market for my second son as the doctors battled the insurance company. He was finally sent to a DME and also got an S9, so we have a spare.

I am overweight, over 60, snore, etc. my wife egged me into trying the APAP. Bottom line it, it really helped. I wake up better, more alert, no snoring, and have had beneficial side effects, like no acid reflux at night, and vastly reduced PVCs.

It is helpful to go ahead and get diagnosed, or am I better off just staying "off-grid" with this?

Thanks
Jim

the autoset you have and sleepyhead allow you to keep on top of your therapy. you can continue to do it off the grid, as it were, or spend the money to have a doctor tell you what you already know. as Den points out, having a prescription makes it a little easier to get masks.

your comment about your sons who've gone through the system not getting any worthwhile advice is telling. no reason to think you'd fare any better

jmdearras wrote:I fully intend to continue treatment that's not the question.as to getting the equipment, it's not hard to get good quality machines, even new. The grey market s 9 I bought was brand new, and new masks are available without prescription from some websites.I am currently using the AutoSet ResMed s9. I have monitoring software and can tell how I'm doing. Neither of my sons, who went through DMEs, get any sort of feedback at all.

the question is, are there disadvantages and advantages 2 a medical diagnosis of sleep apnea, assuming I am going to continue self treatment.

I can't think of any disadvantages.....OR advantages to having the official "diagnosis". Sounds like you are heads and shoulders above most of the users who got chewed up in the "medical machinery". Good for you!
Quite a few of the forum members have bypassed the normal medical channels to treat themselves. I can think of one in particular who was a forum mainstay for years. She occasionally shows up to say "Hi". Most of us miss her.


Den

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It sounds like you are taking all the right steps for self treatment since you are monitoring your readings. It really depends on you, I got my diagnosis over 7 years ago and the only time I've talked about it with my Dr. was when I asked him for a 'script for an APAP instead of a CPAP. Some people like the reassurance of having professional guidance, some are just fine without. Sounds like you are in the last category and are taking the prudent steps to self treat. Were it me (and since I'm doing essentially the same thing I guess it is) take care of yourself and don't bother the Drs. with it.

jmdearras wrote:
I wake up better, more alert, no snoring, and have had beneficial side effects, like no acid reflux at night, and vastly reduced PVCs.

Jim

How do you know there PVC's, do you have verification by EKG?

We need to talk.