Ticked off a little

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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RogerSC
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Re: Ticked off a little

Post by RogerSC » Tue Jul 22, 2014 2:00 am

zoocrewphoto wrote: Do you wake up to use the bathroom several times?
Do you wake up with headaches?
When somebody asks "How are you?" is the answer always "Tired"?
Do you wake up coughing or choking? Maybe to point of vomiting?
Do you feel grumpy often?
Do you have bad dreams? Drowning, running, being chased, scared?
Do you have high blood pressure?
When your Mother asks you if she can help in the kitchen, do you respond in a loud, irritated voice, "Mother, I'd rather do it myself!!"?

Sorry, couldn't resist...must be getting old to remember that one *smile*.

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kaiasgram
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Re: Ticked off a little

Post by kaiasgram » Tue Jul 22, 2014 2:16 am

You do need a prescription to buy a new machine from an online retailer, also if you buy from secondwindcpap.com (a very trustworthy seller of gently used machines and zero hour, open box machines). You can buy from a private party (like from a trusted forum member here) and/or Craigslist without a prescription but you need to be sure you're getting what you pay for.

Whichever route you choose, I suggest you read over janknitz's blog which has important info about data capable machines and "bricks" as we refer to them. If you decide on the DIY approach you will need a fully data capable machine so that you can use the free software available to see what's happening when you use the machine, and ultimately to find the best pressure or range of pressures for you. http://maskarrayed.wordpress.com/

If you go the DIY route, I suggest you look for an auto-adjusting (APAP) machine rather than a fixed-pressure CPAP. The APAP auto-adjusts to the pressure you need throughout the night. After a week or so you'll be able to review the data from your machine and narrow the range of pressures (min and max) to your ideal range. You might end up doing well on a fixed pressure in the end, but the APAP gives you the most options and is extremely helpful if you're trying to determine your own pressures (vs. having an overnight sleep study with a machine).

I hope all this makes sense. It can be pretty overwhelming getting started and there's a lot to learn. We're here because we needed help and support getting started, and many of us have stuck around to help other people just getting started.

We've had people come on the forum who had no insurance but who knew or strongly suspected they had sleep apnea. They educated themselves, got support here, bought a machine in a private sale, and figured out what pressure they needed. In cases of plain old uncomplicated obstructive sleep apnea, it is doable.

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49er
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Re: Ticked off a little

Post by 49er » Tue Jul 22, 2014 3:33 am

kaiasgram wrote:Hey, before we start jumping all over another newcomer...

aav, do you have a copy of that sleep study report? If not, can you get it and post it here (w/o personal info)? Even with the nasal cannula falling off during your study there might be other indicators of sleep apnea, such as your oxygen levels dropping throughout the night (Assuming you had a pulse oximeter on your finger.)

None of us here have anything to gain, financial or otherwise, by giving you our honest impression of your sleep study report.
Definitely agree with kaiasgram and welcome by the way.

AAV, your skepticism of the sleep medicine industry is definitely warranted. But diagnosing apnea is pretty cut and dried and isn't subjected to the whims of the physician. And obviously, having untreated apnea is a big time health risk.

Stick around on this board as these folks are extremely knowledgeable. I have learned more here than from any sleep doctor.

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kteague
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Re: Ticked off a little

Post by kteague » Tue Jul 22, 2014 6:11 am

Hello and welcome. A healthy dose of skepticism is.... well, healthy. When that crosses into denial - not so healthy. You sound like a person who needs the facts. Go ahead and get a copy of the report for your test that was cut short by the stuff coming off. As others have suggested, there's always the possibility that prior to the study stopping abruptly, enough data was gathered to make a diagnosis. If you could see the answer in black and white on paper, it will either confirm your suspicions, alleviate your doubts, or let you know where to go from here to gather more information to proceed with knowledge. They do these tests all the time, and are used to seeing equipment issues and would not make a diagnosis based on something falling off. To even get a diagnosis of sleep apnea there is specific criteria that must be met, and one incidence of stopped breathing is not going to meet it. On the other side of them doing so many of these tests, it can become so routine that providers seem to forget that for each new patient, it is their first and only experience with this. Satisfactory communication is often lacking. As far as the investment, if you buy a reasonable quality machine outside of insurance, you can always resale it and recoup much of your money. How you go forward depends on your inclinations regarding self direction in medical matters. In my mind your first step here, considering your concerns, would be getting the facts.

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JustTia
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Re: Ticked off a little

Post by JustTia » Tue Jul 22, 2014 7:24 am

zoocrewphoto wrote:
I did a split night study. I only did the diagnosis phase for 2 hours and 15 minutes since I had already proven in that time that my sleep apnea is severe (over 30 times an hour). I actually have events 79 times an hour (more than once a minute).
This was my experience as well. The diagnostic portion of the study only took 2 hours, and we spent the rest of the night working on titration (figuring out what pressure would work for me). So it is VERY possible that your sleep study collected enough data to confirm diagnosis before the equipment fell off/malfunctioned. I also have borderline severe apnea at 30.2 times/hr.

The effects that I have/had, from years of ignoring apnea and not seeking treatment:
*High blood pressure (high enough that my doctor was urging me to take medication)
*Insulin resistance (Type 2 diabetes)
*Obesity
*Heart palpitations
*Constant fatigue and low energy
*Sleepiness during the day (I'm a book worm, but reading became nap-time unfortunately)
*Depression/anxiety/irritability
*Chronic headaches (took Amitriptyline for a year to try to manage the chronic, every day pain)
*Brain fog and forgetfulness, likely connected to:
*Severe ADD, which I've always had but has previously always been manageable without medication, with only lifestyle coping skills. It got bad. Really bad.

And the above are just the most obvious effects that I dealt with constantly. There's no telling how many other, secondary, insidious effects I've been dealing with that I had no idea stemmed from sleep apnea. I've had my cpap for about a month now. The above list is showing improvement in the following ways, with no changes to medications or lifestyle beyond cpap therapy being added:

*Blood pressure has dropped so significantly that not only is it not considered "high" anymore, but it is now borderline "low"!
*Insulin resistance is beginning to decrease. I will likely have my diabetic medication doses reduced at my next appointment because my need for them is already decreasing.
*No more headaches! I have not had a headache all month, since starting the therapy.
*Along with the lack of headaches, my mental acuity has significantly increased. I'm no longer doing things like leaving my car keys in the freezer. And my moods have greatly stabilized. I have MUCH more patience with my kids and husband and stupid drivers on the road than I had before.
*I'm down 3 lb in two weeks. This is HUGE because I have been trying to lose weight for a very long time now, and no matter what I did the weight would NOT come off. At every diabetic appointment (every 3 months) I would see 1-3 lb gain, without fail. This added to depression in a big way.

I haven't yet noticed a huge increase in energy yet. However, I was chronically sleep deprived for YEARS before getting the apnea diagnosis and starting treatment. I imagine it's going to take months to undo that sleep deficit. But I'm seeing enough improvement in other areas of my health that I am now a big believer in this therapy and will continue to be compliant for that reason.

Are sleep studies and cpap therapy a money racket? Only in the same way that penicillin is a money racket to the man dying of a bacterial infection.

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Redonthehead
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Re: Ticked off a little

Post by Redonthehead » Tue Jul 22, 2014 7:52 am

If your home sleep study failed due to connections coming off, why not re-do it with more tape?

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palerider
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Re: Ticked off a little

Post by palerider » Tue Jul 22, 2014 7:59 am

aav amphibs wrote:
palerider wrote:
aav amphibs wrote:I never got the results, only that I stopped breathing which, DUH! of course it didn't register anything when the tube fell out.
don't you think maybe they can tell the difference in the tube falling off and when you're breathing and stop and start and gasp for air?
When I woke up and found the tube laying on the bed, I'd say I stopped breathing. no input into the machine means no what? ... I must have died......
if you do something really weird and actually stop and think, you might realize that nobody is going to look at your test results, (which you haven't seen, apparently) and say "oh, look, everything was fine until here, when the patient stopped breathing completely.... well he must need a cpap for his corpse. (generally if you stop breathing completely, it means you're dead, yes?)

that's absurd.

did you consider that it's more likely that they got useful data *before* you managed to knock the machine off?

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Daydream Believer
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Re: Ticked off a little

Post by Daydream Believer » Tue Jul 22, 2014 8:54 am

My home sleep study included the nasal tube, a tube with sensor around my chest, and a pulse-ox on my finger. If the nasal tube fell off it would still record your chest movements and inhalations or obstructed attempts at breathing. It also still records oxygen levels from the finger sensor.

It really is important to address a confirmed apnea problem. It's not about selling a machine. It's not like some scam snake oil solution - it's for real. When you see people here in the forum hitting 0 apnea nights instead of losing brain cells and heart muscle from high apneas... It makes it clear that most of us can improve our lives if we take time to try. And there's some great practical experience here to help make it easier.

I sure hope you can find what you need to turn this negative experience into a positive experience. Who cares what the doctor, insurance, or medical supply company wants? This isn't about them - it's about you. Your health is what matters.

Keep in touch!
Amy

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Sir NoddinOff
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Re: Ticked off a little

Post by Sir NoddinOff » Tue Jul 22, 2014 12:15 pm

I like the fact that aav amphibs has obviously read our replies and then provides some decent information, even after that somewhat entertaining initial 'blowing off steam'. SOOOO many folks just come here for one giant rant then immediately stop answering - I guess they simply fade away to whatever fate has in store for them. So, aav amphibs, keep asking questions and coming back... soon you will be giving advice and responding to 'rants, moan-fests and rivers-in-Egypt' posts. More importantly you will definitely be sleeping better.

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Janknitz
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Re: Ticked off a little

Post by Janknitz » Tue Jul 22, 2014 1:52 pm

Aavs, I'm going to apologize now for the harsh reply, but you seriously needed a good, swift kick in the pants. It brought you from "
I basically told her on the phone, thanks for the call, no way can I afford this and hung up.
The truth is, I can afford it, but I feel I'm being scammed. I don't believe I have sleep apnea, and the price for this machine is way more than I want to go on a limb for."
to
Can I buy this online? Need prescription?
. Looks like my kick hit its mark.

It's good to see you thinking a little more clearly and making an effort to learn more, because it WILL make a positive difference in your life. Nobody promises it's going to be easy, fun, or cheap, but you will feel the benefit and live to tell about it. There may be a little more tough love coming your way, but you've proven yourself worthy of it.

And as for this
I see.....let me sell you a machine or you die right?
, when you find out how I get paid for this, please let me know
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Sir NoddinOff
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Re: Ticked off a little

Post by Sir NoddinOff » Tue Jul 22, 2014 4:36 pm

One final note: Years from now, after you've danced at all your grandkid's weddings, you can come back and thank us all (those of us who are left). Maybe you'll think back on these last few days when you got your life turned around

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I like my ResMed AirFit F10 FFM - reasonably low leaks for my ASV therapy. I'm currently using a PR S1 AutoSV 960P Advanced. I also keep a ResMed S9 Adapt as backup. I use a heated Hibernite hose. Still rockin' with Win 7 by using GWX to stop Win 10.

aav amphibs
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Re: Ticked off a little

Post by aav amphibs » Tue Jul 22, 2014 7:06 pm

UPDATE.....ok 850 bucks on my credit card, now the lady is shipping to the sleep study joint for me to pick up. I guess I'll be joining all you "snoozers". What kind of machine do I have? She said it was a HVAP or VPAP something like this, supposed to be good enough where my insurance company considers a good make or so. I really don't care about the money, its just the lifestyle change involved, but ok, we shall see what kind of results this brings......I'll post it here.....and no offense noted by anyone here. I am not thin skinned about anything here. In fact, I appreciate all of your comments and no apologies needed.
Last edited by aav amphibs on Tue Jul 22, 2014 7:15 pm, edited 1 time in total.

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bwexler
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Re: Ticked off a little

Post by bwexler » Tue Jul 22, 2014 7:13 pm

You really need to call back and get the exact make and model of the machine you are getting, before you pick it up. It sounds like you may be getting an advanced machine, which might explain part of the price variance.

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palerider
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Re: Ticked off a little

Post by palerider » Tue Jul 22, 2014 7:15 pm

aav amphibs wrote:UPDATE.....ok 850 bucks on my credit card, now the lady is shipping to the sleep study joint for me to pick up. I guess I'll be joining all you "snoozers". What kind of machine do I have? She said it was a HVAP or something like this, supposed to be good enough where my insurance company considers a good make or so. I really don't care about the money, its just the lifestyle change involved, but ok, we shall see what kind of results this brings......I'll post it here.....and no offense noted by anyone here. I am not thin skinned about anything here. In fact, I appreciate all of your comments and no apologies needed.
huh, if I'd spent 850$ on something, I'd know what it was.

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Bill44133
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Re: Ticked off a little

Post by Bill44133 » Tue Jul 22, 2014 7:19 pm

aav amphibs wrote:UPDATE.....ok 850 bucks on my credit card, now the lady is shipping to the sleep study joint for me to pick up. I guess I'll be joining all you "snoozers". What kind of machine do I have? She said it was a HVAP or VPAP something like this, supposed to be good enough where my insurance company considers a good make or so. I really don't care about the money, its just the lifestyle change involved, but ok, we shall see what kind of results this brings......I'll post it here.....and no offense noted by anyone here. I am not thin skinned about anything here. In fact, I appreciate all of your comments and no apologies needed.
It is important to know exactly what machine they are selling you. You don't want to get stuck with a brick.
Please keep us posted

I wish you well

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