CPAPtalk.com

123.Shawn T.W. wrote:Ah ... Canada!

That explains why ... I just sold a new PR S1 60 series auto for $450 plus shipping to a guy in Alberta ...

You probably will find a machine from cpap.com cheaper than your full price (if ins won't cover it)

Every once in awhile a machine will pop up on here for sale too ...

It'll almost always be cheaper to buy with OHIP coverage. They kick in 75% of the 1040, so I'd only be paying ~$375 for a brand new Elite, still a little out of pocket, but workable.

Coastal, I know BC's a little strange when it comes to health care, I lived there for two years but kept my Ontario address to make things easier. I'd definitely go with a used unit if I had to pay out of pocket. It's taken me a year to get my savings account back to $2k lol

ironhands wrote: Place was filthy too. Holes in the wall where conduit used to run, bits of broken plaster, moldy/mildewy crud in the bathroom/shower, stained sheets. I know we're not talking 5-star hotel expectations here, but it's a medical clinic, I'd expect a certain amount of professionalism, especially when many of those things could aggravate allergies of the patients.

Time for another coffee, it's going to be a long day.

Wow, I think I would have taken one look and left. I had my sleep study done at the Court Yard Hotel by Marriot. I am sorry to hear you had a bad experience with this. This is a condition that erodes your health over time, it is so important that this gets taken care of. No amount of money can take the place of your health whatever the cost I would get this taken care of.

I wish you good luck with this

ironhands wrote:

Pugsy wrote:

It's one study, per year covered by OHIP. Re-titration is once every 2 years

Are you in Canada? Ontario by chance?
If so then you know that your insurance is a lot different than our insurance.

Your sleep study may not be the total waste of time that you think it was. There's normally certain criteria that needs to be met for the mask and machine to be utilized in a split study. You may not have met criteria (whatever that might be) but you still could come up with the diagnosis and I think what is done in Canada is a trial with an APAP machine to find the best pressure then RX for cpap machine is given.
FWIW...I didn't make criteria either and my OSA is severe in REM with over 50 events per hour. My sleep during the diagnostic study was horribly fractured because every time I would get to REM stage sleep I would wake up and then I had to start all over with the sleep stages. It wasn't until the very wee hours of the morning that I met criteria and by then there was no time to do the titration.

Yup, OHIP = Ontario Health Insurance Plan. Very different than most US plans from what I understand. Everyone gets it here, but it's not premium-care like some US companies offer.

That sounds like what happened to me - though I don't know if I even had any events, that's why I'm so worried that this was all a big waste of time; I don't even know if I had a single event, and it's really aggravating, especially since part of the reason I couldn't sleep was the poor environment

You had fractured sleep, and you woke up during a dream. Odds are, there was an apnea event during that dream.

I know it is frustrating, but wait until you get the results. There could have been loads of data, depending on your version of sleep apnea.

Keep in mind that split studies have specific criteria (that they are not allowed to tell us), but I suspect are for severe levels. In other words, if you are known to be severe early on, why bother to find out that you are even more severe. We can start with the titration. But if you are moderate and barely severe, or only when on your back or in REM, then it helps to get that specific data.

I qualified for a split night in just over 2 hours of sleep (with a bathroom break in the middle of that). I was severe in any position and never reach REM during the diagnosis phase. ahi of 79. I had 172 apnea events during that time. I only remember waking up once, to use the bathroom. Our perception of a night may not be anything close to what really happened. You may have loads of data.

Yeah, quite true, but the tech didn't seem to disagree when I said there probably wasn't any/much data because I didn't sleep. Though, I was still half asleep, angry, and English was a factor. It's this waiting that'll kill me. On a lighter note, I had an awesome sleep last night, woke up 3 times, at exactly 2, 4 and 6. Usual symptoms of feeling the need to take some massively deep breaths... Not so much out of breath, but more way you stretch and arm or leg after not using it.

ironhands wrote:Yeah, quite true, but the tech didn't seem to disagree when I said there probably wasn't any/much data because I didn't sleep. Though, I was still half asleep, angry, and English was a factor. It's this waiting that'll kill me. On a lighter note, I had an awesome sleep last night, woke up 3 times, at exactly 2, 4 and 6. Usual symptoms of feeling the need to take some massively deep breaths... Not so much out of breath, but more way you stretch and arm or leg after not using it.

No, the waiting won't kill you... you may get pretty frustrated though by the waiting. How about if you were referred to a sleep doc in July, finally saw him in November, then got into the lab for your study in February, finally got your machine mid April.... frustrated yes, kill you... no. If you are over worried, try elevating the head of your bed by about 6 inches or sleep with your head elevated on pillows. I had to wait almost 10 months to get my machine and that is what I did.

I started my testing in 2008, with non conclusive results, so more tests until 2009. A few delays while trying to find a better clinic after going to a dud. Finally got into the right clinic in 2010 and got my machine in early 2011. Used it for a few times then stopped after a major family emergency resulted in unexpected and traumatic death in family, throwing life upside down for 2 years. Here I am in 2013 *finally* starting to use it regularly, with good results after several weeks. I even took the machine on a trip this week. It took 4 years from first study to my actual resolution. And I've been able to stay awake through the day without debilitating fatigue for the first time in decades. I'm a few weeks in and my life and attitude are improved greatly.

Just keep on keeping on, no matter how long it takes. Patience will pay off.


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Hope so. Still another week until I (hopefully) have my initial results, and another 3 until I can discuss them with the specialist. I hope the specialist speaks English fluently.

Ugh. Just called them to make sure my results would be forwarded to my family doc by Wednesday to coincide with an appointment. It suddenly takes 2-3 weeks instead of 1-2. Fun.

Just keep on plugging away. Don't stop no matter what obstacles come. It will be worth it.

When its time to find a mask that fits well, this is often the most challenging phase. Remind yourself not to give up till you find the right one. Took me trying about 10 different types until I found the one that works. (Nasal pillow swift FX). Your unique facial shape will dictate which one works for you. None except nasal pillow type will stay sealed on my small-ish face. I was almost ready to give up when I tried the nasal pillow, which was perfect for me. I also feel no claustrophobic sense which was a prob with the nose only and full faces masks. But the leaking was their main issues. Couldn't get a good seal, and if I did, it was only temporary. And after a few days the masks got misshapen. None of these probs (so far) with the nasal pillow type for me


Good luck to you.


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That's the part I'm dreading, it'll be the most expensive part. $278 for my machine after government rebate, and then who knows how much for a mask from the sketchy DME up the street.
A "basic" mask is supposed to be included in the package cost, but I don't know what they consider a basic mask to be. It may be suitable, but impossible to tell at this stage. I have to see if there's a list of what a basic mask is under the government plan, and then just find what I believe is best online. I really don't want to spend more than 5-10 minutes at the DME. I know how the equipment works, I've done my research, and I trust the people on here a million times more than anyone in the shop if I have a question

Here's a link to the approved devices/costs for Ontario residents. Unfortunately they don't know what constitutes a "basic" mask.

Yes, I didn't get enough sleep for the titration phase, as well. They told me that if I slept well enough they'd try that, but I only got about 3 hours sleep, after laying awake for several hours due to discomfort and noise. It was enough sleep to verify that I had sleep apnea, get some numbers, and decide what should work (they only saw OSA). So my sleep doctor was able to prescribe an apap machine, and a range of pressures that got me started. The apap he prescribed has data, so I was able to carry on from there. Anyways, despite the short amount of sleep, things have worked out just fine.

Seems like I might as well have had a home test, although it appeared that they got more data in the lab than would have been available from current home tests just due to having more electrodes. But that would have been much less traumatic, and more useful, if they could get the data that they needed from it.

Got sick of waiting and had them fax over the assessment earlier.

API 2.15, none respiratory related.

non-apneic snoring - very loud, 91% lowest oxygen saturation.

4.2 hours of sleep

Here's where things get odd.

REM latency abbreviated at 6 mins(60-120 normally).
efficiency 56%
only 10% REM sleep

Thing is I know I've been having breathing events, and have recorded myself on audio having them, and no mention of the catathrenia-like noises.
Fun.

ironhands wrote:Got sick of waiting and had them fax over the assessment earlier.

API 2.15, none respiratory related.

non-apneic snoring - very loud, 91% lowest oxygen saturation.

4.2 hours of sleep

Here's where things get odd.

REM latency abbreviated at 6 mins(60-120 normally).
efficiency 56%
only 10% REM sleep

Thing is I know I've been having breathing events, and have recorded myself on audio having them, and no mention of the catathrenia-like noises.
Fun.

I don't know what API is. Do you mean AHI?

Also, you seem very focused on catathrenia, which is very different from sleep apnea.

From http://www.sleepassociation.org/index.php?p=catathrenia

Catathrenia, or nocturnal groaning, is a relatively rare and undocumented parasomnia, in which the subject groans during their sleep - often quite loudly. This disorder is long lasting, and seems to occur nightly in most people. It can occur during any stage of sleep, but seems to happen with the most frequency during REM or deep sleep. It can come and go during the night, and restless sleep with a lot of tossing and turning may actually ward it off, as it’s been documented that subjects who move around a lot experience breaks in the groaning after shifts in position. This also may tie into the contention that it occurs mostly during deep sleep.

Contrary to snoring which occurs during inhalation, groaning occurs during exhalation, and one groan can last as long as 30 seconds. The groans are usually succeeded by a snort or sigh at the end. Groaning usually comes and goes in stretches, with any one stretch lasting as long as an hour.

Groaning is not related in any way to sleeptalking. It has also shown no connection to general breathing problems or sleep related breathing problems, any abnormal brain activity or mental disorders, or any other sleep related disorders in general. What causes the groaning in people is still a relative mystery.

The groaning bears no connection to any mental anguish or dream state the person may be in, a common misconception. Though people in these states have been known to make small groaning noises, they are not related to catathrenia. Other sleep related groaning type noises that could be misinterpreted as catathrenia include some types of snoring, and the moaning noises that may be made during an epileptic seizure. People with catathrenia usually have calm facial expressions and peaceful sleep despite the noise. The easiest way to distinguish snoring from catathrenia is that snoring occurs while inhaling, and groaning while exhaling. A careful examination of a partner’s breathing pattern in conjunction with the noises should be able to clarify which of the two it is.

Most people with catathrenia are not bothered by their own groaning, and will not rouse due to it, though it may be quite loud and potentially sleep disturbing to a bed partner. Most people with catathrenia will not even be aware of the disorder unless told by a bed partner, and likely will not believe the partner when told. Groaning appears to affect more males than females, and can start at any age. It appears in most cases that the groaning remains for many years. Subjects may wake up with sore throats the next morning, depending on the extent of the groaning the night before.

As the catathrenia has little to no effect on a person’s sleeping quality, and bears no connection at present to any other disorders that may be causing it, or that it may lead to, it may be unnecessary to have it looked into. If the disorder is causing distress to a bed partner, the easiest course of action may be for the partner to wear ear plugs while sleeping.

If it is decided to have a doctor look into it, they will need to know to the best of your knowledge when the groaning started, any medications you may be taking and any other sleeping disorders you may have. There is some thought that medication use may cause catathrenia in some patients, but there are no statistics to support this yet.
You may be asked to take an overnight sleep study to give the doctors a sense of the severity of the groaning, and to help detect any other sleeping disorders that may be present. As catathrenia is considered separate from other disorders, and unrelated to any other medical issues, this may be unnecessary.

There is limited data on effective treatment plans, but there is some evidence to suggest that positive airway pressure (PAP) may be beneficial in limiting the frequency and ferocity of catathrenia.

Reviewed September, 2007

Yeah, I meant AHI - I'm a coder, so API comes more naturally when I type

Yeah, I know what catathrenia is - but no doctors I've spoken to yet have ever heard of it. I know that it's not an apnea event, BUT, there are many studies suggesting CPAP therapy works for it, and, considering I wake myself up while doing it, it's a concern. Not as much as not breathing, but it's interfering with my sleep patterns, and those I share a room/apartment with. It's really loud, and embarrassing.

Going by the info I have, it'd seem my results are indicative of narcolepsy (without cataplexy). The depression, massive appetite, lack of wakefulness and incredibly low REM latency all point to an orexin deficiency. Unfortunately, not much can be done other than pumping myself full of stims. I was really hoping CPAP would finally set things right

Looks like no CPAP machine for me this time around. Have to wait another year to be re-tested. I'm certain I would have exhibited more symptoms had I had a better experience at this clinic.

It is very disheartening to go through all this and feel like something is going on that just wasn't able to be picked up on the night of the study. Did your study say anything about limb movements? What about arousals? If your sleep is short or fragmented over a period of time, it can do strange things to our sleep. I wouldn't automatically think narcolepsy based on the symptoms you mentioned, as they can also be a result of sleep deprivation. Did you get any Stage 3 sleep in the study?