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Doubting Diagnosis
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ozzydudemike Offline

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Sex: Male
Location: Australia

Post: #1
Doubting Diagnosis
Was diagnosed a little over 12 months ago with severe obstructive sleep apnea (One of the worst we've ever seen), and at this point my truck license was in doubt. Have been jumping through the flaming hoops one at a time, knowing full well I would be required to use a CPAP with SD card for proof of compliance, so I bought an S9 but hadn't really regularly used it until recently. The underlying medical condition that was causing me most difficulty in day to day life has been treated with Vitamin D mega doses, and the tiredness and lethargy has gone. Enter the CPAP machine. The upside is I can keep my license if I continue to use it. The downside is I don't feel any better for using it. The home sleep tests were horrible examples of a night's sleep because the electrodes on my face etc kept me rolling on my back, and this made things extremely bad as I use 2 fat pillows because I sleep on my side. I am certain that the test equipment made the results so bad. I am looking at the data from the S9 and it seems to confirm this. Will be seeing a specialist soon and should be able to confirm this, because this machine tells you almost everything. I use the nasal pillows, on a very loose strap, and am not uncomfortable using the machine, but I see conflicts with the people doing the sleep tests also being the ones to sell you your machine. Not denying sleep apnea. Definitely denying the severe label though. I am now stuck with it for life requiring me to spend money on Doctors and equipment. The success story part comes with 2 things though. I can keep my license, and I find this machine helps amazingly with my hayfever,Dancing
I thought I'd post up a pic of my Res Scan stats. It is definitely working, but I am just wondering if it looks like the stats of a severe apnea case.
   
12-01-2014 10:28 PM
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DeepBreathing Offline
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Post: #2
Doubting Diagnosis
G'day ozzydudemike , welcome to the forum.

Your stats look like your apnea is well under control on the occasions you use your machine. The big thing about CPAP therapy is that you have to use it all night, every night. Which is a lot easier said than done. I've been at it over a year now, and my compliance is borderline, so I understand how you feel. The other thing is that there's no real cure for sleep apnea. Think of it like type 1 diabetes - you can manage it with regular medication, but if you stop taking the insulin you get very sick, very fast. Same thing with apnea - if you stop using the machine you'll get sick, rapidly.

If you think your sleep test gave you a wrong diagnosis, then maybe you should consider another one. For sure, sleeping on your side is usually a lot better for obstructive apnea, but I don't think it will throw the result off so far that a non-apneac suddenly becomes a severe apneac just by sleeping on his back. If you haven't done so, ask the lab for a copy of your full sleep test report and see what it has to say - there might be some interesting insights there.

DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
12-01-2014 11:28 PM
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Sleepster Offline
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Post: #3
RE: Doubting Diagnosis
(12-01-2014 10:28 PM)ozzydudemike Wrote:  Was diagnosed a little over 12 months ago with severe obstructive sleep apnea (One of the worst we've ever seen), and at this point my truck license was in doubt.

Hi Mike. Welcome to the forum. I've moved your post here and created a new thread so more folks can see it.

Severe simply means you had more than 30 events per hour. "Worst ever" means it's much much higher than that. As an example, let's say it's 60. That means that you stop breathing 60 times an hour, that's once a minute! At that rate you're waking up so often that you never get any deep restorative sleep.

Quote:I thought I'd post up a pic of my Res Scan stats. It is definitely working, but I am just wondering if it looks like the stats of a severe apnea case.

There's no way to tell from that data. You'd have to set the machine to its minimum pressure of 4 and collect some data.

The data you showed us indicates that the machine is working well when you use it. But you aren't using it all the time so it's not giving you the benefit you need.

Try using it every time you sleep, the entire time you sleep, for the entire month of December. You'll start off the new year with a new lease on life. I could be wrong about this, but I'm not. Wink

Sleepster
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
12-02-2014 01:47 AM
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ozzydudemike Offline

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Post: #4
RE: [split] Doubting Diagnosis
Not doubting that it helps (the proof is in the charts), but with the pressure not really being that high, and looking at the flow of breathing graphs it doesn't look that bad. On my side the sleep test said I wasn't too bad, but supine with my chin pressed into my chest by my pillows it narrows the airway even further making blockage a piece of the proverbial cake (more like 87 than 60) The problem I have is that the second test I did I set up the old tennis ball in the back trick so I would stay on my side, and between that and the electrodes, I think I only got an hour of broken sleep. And my oxygen level was normal both tests Lol. I don't always sleep in the same place either, so I miss out on the odd occasion. Also due to the vit D and no more Prednisolone, I've already dropped 20kg. I knew I was bad at the time, because of my illness, as I would wake up gasping for air, and was falling asleep as soon as I sat down somewhere, not to mention the sore throat. That all went away with the Vit D, and no more prednisolone. If regular use of the CPAP machine is going to improve on this, watch this space for my Olympic Marathon results. Lol. Don't get me wrong, I like the fact that I wake up with clear sinuses with the machine, and it is definitely working near perfectly with me, I just think I should be fine taking in my SD card 6 monthly, and not have to go and see a specialist, in order to keep my truck license. If alertness was a problem I wouldn't be the only truck driver where I work to not hit anything (even though I drive the biggest oldest truck with the worst blind spots and largest turning circle), and by now one of the countless maniacs with petrol money and car keys would have been able to take me out commuting on my motorbike (believe me it happens at least 5 times a trip). I knew when I had a problem, and I took time off work, to make sure I didn't kill anyone, and to get the problem fixed (cost me thousands, but better than hurting someone). That problem is fixed now, and I no longer feel those effects. Not saying my apnea is cured. I'm saying that it was not the primary cause of my drowsiness, and fatigue, that is now gone. Obviously someone needs to do the testing, and this is a cheaper way out for the gov't, and probably makes it harder for seep clinics to make ends meet, but it would be nice to have independent testers (I know I'm dreaming...lol.) or failing that, a better way of testing one day would be cool. I'll just shut up now, lol, I've had my little cry. Like I said, at least I get to keep my license, and I've even got a Transcend for if I go away. Life is not that bad I guess.Dont-know But yeah, according to those details, the S9 seems a perfect fit for me.
12-02-2014 06:18 AM
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PaulaO2 Offline
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Post: #5
RE: [split] Doubting Diagnosis
When it comes to sleep apnea, pressure is not always indicative of severity. Neither is drop in O2. Some of us don't have O2 drops with each event, some do. That said, a pressure of 8 is not low enough to consider chucking the machine.

You have an Autoset which is a good thing. The machine can react to your needs as the night progresses. Which it does. You can see that because it goes on average as high as 10.7. Your 95% pressure is 8.4 which is the number you typically want to keep an eye on.

A person without sleep apnea would not need a pressure of 8.4 95% of the night to keep their airway open. And a person without sleep apnea would not have an AHI of 1.1 in addition to that pressure.

But what you could do to convince yourself is to set your machine in CPAP mode. Put the pressure at 5 (or lower if you feel as if you can breathe) and sleep that way one night. What this will do is provide just one steady pressure. It won't adjust as the night goes so if your airway needs more, tough cookies. The event will continue and your body and brain will react to kick you awake enough to open the airway yourself. My assumption will be the AHI will be higher. Probably not OMG higher but up there. It will show you the numbers you need to see. That the CPAP is doing its job and that you do need it.

Or you could just continue using it, every night, and continue collecting data, looking for trends. Some nights are going to be good, some not good. No two nights are the same because no two days are. You will start to see that your AHI falls between X and Y. Your 95% pressure falls between this and that. And overall, you're doing not so bad.

One thing to consider, though, is narrowing that range some. My suggestion would be to set your autoPAP range from 5 to 12. By narrowing the range, you give the machine less room to watch so it can watch better. In a sense.

PaulaO2
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
12-02-2014 02:03 PM
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archangle Offline
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Post: #6
RE: [split] Doubting Diagnosis
Remember that the machine only measures your apnea when the machine is running. You could have zero AHI on the machine and still have severe apnea without it.

You could set the machine to 4 cmH2O pressure and see what your AHI is, but even if you have no apnea at 4 cm, it doesn't mean you won't have apnea without it. However, if it shows apena at 4 cm, it's a pretty good indication you do still have apnea.

The fact that your machine goes up to a pressure of 8 indicates it thinks it's seeing some sort of breathing problem.

If your underlying problem was causing swelling, fixing it might cure your apnea, but don't put a lot of faith in that. I've also got my doubts about the apnea curative effects of vitamin D or stopping prednisone.

The only way to tell you're cured is to have another sleep test without the machine. If I were responsible for your safety as a truck driver, I'd want to see a negative sleep test.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
12-02-2014 04:25 PM
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ozzydudemike Offline

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Post: #7
RE: [split] Doubting Diagnosis
Wow. If you'll read carefully, I have outright stated that the machine is doing its job and that I have sleep apnea. The immune problem I have seemed to be causing the worst of my symptoms. It MUST have been, as they went away while I was NOT using the machine...at all. I am not denying the symptoms. I would know if they were still there, as I did originally when I went to get a CPAP machine before diagnosis. Nobody told me I had a problem. I told them. Wouldn't sell me one without doing the test first. I did the test when I was nearly dead. I never started using it because mask fit was an issue. Kept getting steered away from the pillows by the experts. In the meantime after doing a bit of a crash course into my condition, I discovered that vitamin D was responsible for controlling nearly every area that I was having trouble with, and the prednisolone kept sending me into shock. I can now walk without unbearable pain. I don't have massive joint pain, and I seem to have stopped crapping 600ml of blood at random times (yes I've 2 movie crews go in to investigate). I am losing weight and building muscle again...all BEFORE I began using a CPAP machine. I am on no other meds now. No painkillers, no anti inflammatory pills, just vitamin D. So while the apnea has not been cured, the symptoms that led me to get checked out are gone. The severity, I KNOW is less due to lack of sore throat caused by the snoring. No waking up gasping because I haven't breathed for a minute. Pretty easy to notice the difference.
12-02-2014 10:16 PM
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PaulaO2 Offline
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Post: #8
RE: [split] Doubting Diagnosis
Okay, but your thread title says you doubt the diagnosis.

So...what is your specific concern so we can help you?

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
12-02-2014 10:29 PM
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eviltim Offline

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Post: #9
RE: [split] Doubting Diagnosis
Make sure you are monitoring the vitamin D with blood tests. It's dangerous to take too much.

"Severe" merely refers to your AHI number. There are a variety of other factors (oxygen saturation for instance) that play into how bad the apnea makes you personally feel.
12-02-2014 10:47 PM
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ozzydudemike Offline

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Post: #10
RE: [split] Doubting Diagnosis
Thread title was created by sleepster I guess when the thread was moved. I was doubting the severity but happy with how the machine and I were working (the attachment) and there were added benefits, as in hayfever not as bad overnight (humidifier maybe?). I wasn't really after help (I have already gained loads of info off of the forum), but I guess my doubt about the severity came through strongest (a bit annoyed by it), so it was moved to here.
12-02-2014 10:54 PM
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