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Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 9:58 am
by Alshain
Wulfman... wrote:Is 6 cm. your "prescribed" pressure? Why is it so low? Do you have a copy of your sleep study?
It's been my understanding that (depending on the person) 6 cm. of pressure is probably not sufficient to expel the CO2........which sounds like what's happening to you.......you're re-breathing too much carbon dioxide and getting bad side effects. All things being equal (like your overall health condition), something in the neighborhood of 10 cm. would likely be more therapeutic.
Your last paragraph makes me think you're looking for an excuse NOT to use it. In reality, you would more than likely die VERY slowly. Only the "lucky" die quickly and in their sleep. You also don't want to be behind the wheel of a vehicle if you're very tired.......that's not good for the health of others.
Den
Still trying to get the reports. Not having a lot of luck there. I keep getting tossed around, stupid "medical networks".
Wulfman... wrote:Your last paragraph makes me think you're looking for an excuse NOT to use it. In reality, you would more than likely die VERY slowly. Only the "lucky" die quickly and in their sleep. You also don't want to be behind the wheel of a vehicle if you're very tired.......that's not good for the health of others.
No, I'm just pissed off that this machine is making me feel terrible when it was promised that it would make me feel better. That last paragraph was sarcasm, sorry but using the machine makes me more irritable too.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 10:02 am
by Alshain
robysue wrote:And for a small subset of us, starting or being on xPAP increases our daytime sleepiness significantly. I suspect the OP belongs to this group of "outliers", as do I: In the last 9 months, I have found that I've gone from having NO problems with daytime sleepiness pre-xPAP to serious, significant EDS problems with xPAP. And as a consequence? I find myself literally terrified that I will fall asleep while driving now---to the point of needing my husband to drive me to and from work about half the time now. Which is an improvement over the dark days of last fall when I became completely dependent on my hubby to drive me around because of the intense, daily, and constant EDS that developed during my first 10 days on CPAP.
EXACTLY! I feel the same way, except driving is my job... I can't stop and I can't have someone else do it for me.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 10:06 am
by datara
Hey Den, that is a question I would like an answer to. Why is my pressure prescribed at 6 cm, I have severe sleep apnea and the RT said the same thing "That's awfully low". I'm up to 8 now but 8 seems to make me feel worse as well. 7 seemed to be the sweet spot, and I think when my own machine arrives, I'll set it there as my numbers are consistent at 6,7 and 8. But at 8 I wake up with a weird feeling in my nose and mouth, yet leakage was the worst at 6.
I know what Alshain is feeling, it's frustrating to have slide down the stairs on your but some mornings to avoid the pain (yes it was that bad), and at times I got depressed and wanted to give up going to doctors and self medicate (Booze, and I don't drink). It seems like there are multiple issues going for Alshain. I got lucky, finally and it may even be too soon to deduce that.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 10:08 am
by Pugsy
Alshain wrote:EXACTLY! I feel the same way, except driving is my job... I can't stop and I can't have someone else do it for me.
What is your occupation? Is it DOT regulated?
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 10:13 am
by Alshain
Pugsy wrote:Alshain wrote:EXACTLY! I feel the same way, except driving is my job... I can't stop and I can't have someone else do it for me.
What is your occupation? Is it DOT regulated?
Nope, I service natural gas wells.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 10:56 am
by Wulfman
robysue wrote:Wulfman... wrote:
Is 6 cm. your "prescribed" pressure? Why is it so low? Do you have a copy of your sleep study?
It's been my understanding that (depending on the person) 6 cm. of pressure is probably not sufficient to expel the CO2........which sounds like what's happening to you.......you're re-breathing too much carbon dioxide and getting bad side effects. All things being equal (like your overall health condition), something in the neighborhood of 10 cm. would likely be more therapeutic.
Please cite a source for your claim that 6cm is not enough pressure "to expel the CO2". And please remember that many of us simply cannot tolerate pressures of 10cm without severe discomfort. If the OP's titrated pressure is at or close to 6cm there is no good reason to assume that bumping the pressure all the way up to 10cm will make things any better.
You also don't want to be behind the wheel of a vehicle if you're very tired.......that's not good for the health of others.
This is as true for folks who do NOT have OSA as it is for those of us with OSA. You don't have to have untreated OSA to fall asleep at the wheel.
And for a small subset of us, starting or being on xPAP
increases our daytime sleepiness significantly. I suspect the OP belongs to this group of "outliers", as do I: In the last 9 months, I have found that I've gone from having NO problems with daytime sleepiness pre-xPAP to serious, significant EDS problems with xPAP. And as a consequence? I find myself literally terrified that I will fall asleep while driving now---to the point of needing my husband to drive me to and from work about half the time now. Which is an improvement over the dark days of last fall when I became completely dependent on my hubby to drive me around because of the intense, daily, and constant EDS that developed during my first 10 days on CPAP.
WTF!?!? Please re-read my post. It's not a friggin' "CLAIM"! I didn't say it was an absolute FACT! There are "qualifiers" in what I wrote and the way I wrote it.
But, my "source" has been the posts by "Snoredog" (and others).
The subject of re-breathing or adequately expelling enough CO2 has been discussed frequently on the forum over the years.
Here.......read (some of) them for yourself. If that isn't enough, do a forum search on something like "rebreathing CO2" and see how many pages of links you'll get.
viewtopic.php?f=1&t=48664&p=444444&hili ... O2#p444444
Personally, I've never tried any pressure lower than 10 cm., so I have no personal experience with it, but I do have a Quattro mask that I've questioned as to whether it expels enough CO2 at ANY pressure I've used it with.
Den
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 11:05 am
by Alshain
Well at any case, apparently everyone agrees this is all conjecture until I can get study reports and machine data. I'm working on the reports but the sleep center can't release them, I have to go to the hospital and like a true bureaucracy, they can't figure out what I'm talking about. As for the machine data, do I HAVE to get that specific card reader? I found a $15 SmartCard Reader at Newegg, will that work? Also, is my Win7 x64 a problem?
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 11:21 am
by Wulfman...
Alshain wrote:Pugsy wrote:Alshain wrote:EXACTLY! I feel the same way, except driving is my job... I can't stop and I can't have someone else do it for me.
What is your occupation? Is it DOT regulated?
Nope,
I service natural gas wells.
Do YOU think that this could be part of the issue?
Do you wear any breathing apparatus when you work around them? Any H2S gas around where you work?
Den
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 11:27 am
by Wulfman...
Alshain wrote:Well at any case, apparently everyone agrees this is all conjecture until I can get study reports and machine data. I'm working on the reports but the sleep center can't release them, I have to go to the hospital and like a true bureaucracy, they can't figure out what I'm talking about. As for the machine data, do I HAVE to get that specific card reader? I found a $15 SmartCard Reader at Newegg, will that work? Also, is my Win7 x64 a problem?
Yes, the ONLY card reader that will work with the Respironics "Smart Card" cards is the Mako/Infineer DT3500 model (USB). There are some in the $40 (and higher) price range. $40 is a pretty decent price for them (if the shipping isn't too high).
Den
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 11:39 am
by Alshain
Yeah well, I can't afford that right now. I just got off the phone with the records department, I can't afford to get the records either, apparently that costs $50 too.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 11:43 am
by nanwilson
Where do you live....the records are YOURS they have to give them to you. If you are in the states you can use the HIPPA law...just tell them if they don't give them to you, you will report them.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 11:48 am
by Pugsy
Well, I would choose reports off the machine right now if money is tight. Better to see what is going on now, IMHO. Worry about what happened in the sleep study later.
And yes, unfortunately the only card reader that will work is the Mako DT 3500 Infineer. No way around it.
Perhaps someone here at the forum has one that is no longer used they would sell?
To NanWilson.. in the US while we may have a "right" to the records, the holders of the records have the "right" to charge a copy fee. There are no clear $ guidelines either.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 11:53 am
by Alshain
Well I tried, but I'm blocked at every turn. I don't have the money for this. I'm up to my ears in medical bills I don't know how I'm going to pay as it is.
If your hand hurts because your touching a hot surface, the reasonable conclusion is that you should stop doing that.
Thanks for trying guys but I'm going to do what makes me feel better.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 12:06 pm
by BrianinTN
You can't come up with $30? Because I bet someone here would ship you their old card reader for that.
Anyway, your analogy isn't a very good one. You get immunizations, don't you? They hurt you a little bit at the time. You put up with short-term pain to avoid longer-term problems.
Your answers could be very simple. All you need to do is share a little data from your machine and post your PSG results. Doing so is cheap, relatively painless, and could save your life.
Re: Sleep apena misdiagnoses?
Posted: Wed Jul 06, 2011 1:38 pm
by archangle
Alshain wrote:Seriously, if my choices are die young or live a miserable life... I choose die young.
What if the choice is to have a miserable life on CPAP or a long, miserable life with debilitating problems like heart damage, stroke, brain damage, etc. without CPAP? That's a lot more likely than a quick, painless death.
You could try putting your machine in auto pressure mode with a range of, for instance 6-10. Or try a higher pressure on manual CPAP. Don't change the pressure too quickly.