New and freaked out

Oh, I definitely agree that Janine needs a sleep study. But in the meantine, an M Series Auto will give some needed therapy.

I was titrated at the hospital during my sleep study and they perscribed me at a pressure of 9 which wasn't enough and using the Resmed s8 series howeer it was set at straight Cpap and not Auto.

I raised the pressure on my own to 9.8, thanks to the people here who advised me how to do it, and I have been feeling great.

Last night, my AHI was only 2.6.

I did have .76 leaks, how many is too much when it comes to the leaks?


Kleri

Inpjs, that leak rate is too much. But you are using a full face mask so they have to be mask leaks as opposed to mouth breathing.

You probably need to make adjustments to get the leaks lower. Tighten or loosen the straps, get a different sized seal, etc, etc, etc,. You know the drill.

But, if you are feeling better, it's not as bad as other problems. IMO - others may and will disagree. .......

Yikes!!!

Okay, no delayed joke. They don't do sleep studies here. The gp sent me for oximetry at home, and then the tech sets you up. That's it. Unless I missed a big step, and I don't think I did. Of course, I just moved from Vancouver, where I am sure they do sleep studies, and if so, I will go over there and do it.

As for data, I got taught on/off, ramp, humidity. No discussion of date analysis.

I am making a list of questions and ideas. I had no idea it was this complex (and of course it is). Now I feel like an idiot for not asking more questions. I have been on an insulin pump since 1984, and I am used to having to teach doctors, but I figured this would not be one of those cases.

I am so glad I found this place!!! Thank you all!

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CPAPopedia Keywords Contained In This Post (Click For Definition): Ramp

Janine

What you said, sounds so scarry.

I totally agree with Linda, go for a study. Or if need be get an Auto and monitor yourself.

oximetry is not a good indication of OSA, you can have a heart problem, sometimes you can have a sleep problem but oxygen saturation not drop "that low".

Janine, get over the embarrassment of not asking more questions. Start asking them now.

As a patient, you expect good competent medical service.

Janine wrote:Okay, no delayed joke. They don't do sleep studies here

Do you have an airstrip close by Janine? There is a wonderful organization called Angel Flight http://www.angelflight.org/

They fly people needing medical help anywhere for free.

Week after next, they will most probably fly me from Santa Barbara to Palo Alto and back for a sleep titration.

But anyone who wants to fly with them, please pm me first.

John M

By the way Janine, this group told me to keep on trying until it worked and this is what I am doing

Janine,

Oximetry does NOTHING to help with titration (determining your optimal CPAP pressure).

Unless you're been titrated in a real sleep study (PSG, Polysomnogram), your current pressure is nothing but a guess.

I'd demand (or pay for myself, if necessary) a real PSG sleep study and a real titration, as soon as possible.

Obviously, a sleep study would be the best, but if Janine can't do one, then getting an Auto machine and self-titrating can be done. Self-titration is certainly better than not using cpap at all.

Here's a link (courtesy of Rested Gal) for self titration:

http://www.alaccoast.org/pdf/Phillips_0830.pdf

Linda, thanks for that link. You have been incredibly helpful!

John, thanks for the info. I am not that far from Vancouver, so can get there if needed.

I went in today and the RT was great. She listened to my concerns, and I now have a Remstar Plus with cflex and a full face mak. She ramped it to 5 and I could have gone to sleep there. I find the full mask less claustrophobic. She set it to ramp to 5, then go up to 8 over 45 minutes. This machine has a smart card in it, so we can assess.

As for a sleep study, it would seem that in BC most places use oximetry. Apparently the wait for a sleep study is 1-2 years and I am not sure if you can get them privately. I am seeing my gp on Friday, so I will talk to her about it then.

I am beginning to think I should do my MA thesis on the mental health effects of sleep apnea. I had no idea how complex this was, and I now know I have had counselling clients that probably were miserable because they were seriously sleep deprived!

I am actually looking forward to trying this tonight. I will post tomorrow. All I can say is that I am so glad I found this place!!!

I went in today and the RT was great.

Maybe not as great as you thought... read on.

She listened to my concerns, and I now have a Remstar Plus [...] This machine has a smart card in it, so we can assess.

Apparently she either didn't listen too well to those concerns, or she's extremely ignorant of the basics of her own job. The Remstar Plus can be configured with a smartcard, yes, but it ONLY records "compliance" info on that card... basically, ONLY the number of hours you used the machine each night. Only the higher CPAP models like the "Remstar Pro2" or the more recent "Remstar Pro M" (or the "Remstar Auto" for APAP) record the detailed data that's necessary to evaluate how you're doing, like apneas, hypopneas, leak rates, etc. on a minute-by-minute basis.

All your smartcard from that Plus is going to contain is "she used the machine 7 hours last night, and 6 the night before, and 6.5 the night before that..." which is useless for figuring out how well the therapy is working.

Furthermore, a Plus is a CPAP machine! If you've not been titrated, you need an Auto (APAP) machine! A CPAP only blows one set pressure at you (the RT's worthless guess pressure) whereas an APAP will intelligently watch you and your respiratory events in realtime and will adjust its pressure adaptively to try to clear them... and the *detailed* data (not just compliance data) on its smartcard will reveal what your ideal CPAP pressure would be. Then, often you can switch to a CPAP at that pressure (or just keep the APAP, running in either APAP or CPAP mode).

Why the heck is this person a professional RT when most of us here know volumes more than she does, and we're just amateurs! That's pathetic.

As for a sleep study, it would seem that in BC most places use oximetry.

Which, again, is useful for helping to screen for sleep apnea (not a real, full diagnosis mind you, just one metric), but is USELESS for determining what fixed pressure to use to TREAT it!

Apparently the wait for a sleep study is 1-2 years and I am not sure if you can get them privately.

Ah, that explains it. You're in Canada. Witness the joys of state-provided, socialist, "free" healthcare. Free, very slow (even with life-threatening issues like sleep apnea!), and often terrible quality services (an RT who's completely clueless, for instance).

I'm in the US, with private health insurance co-funded by me and my employer (the typical arrangement down here). No government involved. Sleep study night #1 was less than a week after my doctor ordered it. Night #2 was the two days later. I had a formal diagnosis, titrated pressure, mask and "Pro M" CPAP machine (with detailed data recording) the day after that.

One of my dearest friends had her sister die while waiting for cancer treatment over in Britain... again, slow, terrible but "free" socialist state-provided healthcare. If she'd had fast private insurance, she almost certainly would've lived.

The good news is that I *think* you *can* seek out a privately-funded sleep study in Canada. In England I'm pretty sure that going outside the government system using your own money is actually a crime (isn't the nanny state WONDERFUL?), but I think it's okay in Canada. Even if not, fly to the US and pay for one here. If you have sleep apnea, especially moderate or severe, it's worth it rather than letting your body be harmed every night for an extra 1-2 years.

At the very least, go have a chat with the so-called "RT" and request an APAP (a good one being the Respironics Remstar Auto or the more recent Remstar Auto M-Series). Auto-titrating with detailed data recording to assess the effectiveness of your therapy and gives an idea of what your ideal CPAP pressure would be.

Good luck!

I looked into BC medical, and oximetry is the standard for diagnosis. PSG is not even mentioned. Sleep apnea is not a covered condition apparently, and I know I will be paying 100% of the equipment costs myself. I know there is a sleep disorder clinic in Vancouver, so I will talk to my doc on Friday.

Socialized medicine is not perfect, and basically falling apart here, especially in terms of waitlists for appointments and procedures. But considering I have no insurance, my basic medical needs are covered fairly well. It gets tricky and rather frustrating when you go outside their "justified" coverage. Long term prevention is only barely being acknowledged. So I could rant about what is good and what is bad. It is a mix Unfortunately, some of the bad stuff is directly related to areas that need immediate change due to severe health implications.

This is an interesting study - I don't know enough about this area to be able to comment on validity etc, but I am sure that it will fuel the oximetry funding by BC med. I noticed who funded it.
http://www.annals.org/cgi/search?fullte ... sendit.y=0

top article Diagnosis and Initial Management of Obstructive Sleep Apnea without Polysomnography

That said, I had a great night last night. I wore it all night and slept well.

Sleep apnea is not a covered condition apparently

There are other Canadians on the forum that have at least partial coverage. You might double check that. Or other Canadians can respond.

I think it differs from province to province and I have no extended medical. However, please, please correct me if I am wrong!!! The RT was quoting me prices based on me paying 100%.