CPAPtalk.com

Slinky,
I did update my profile - your knowledge of my location was more from common knowledge over time prior to yesterday it hadn't been filled in.

Re the software issue & its relationship to FDA

IIRC all the main software programs we had been using in the past (being AutoScan, EncorePro & ResScan. etc:) had the ability to change the machine settings. This was contra to FDA approvals if the software is sold to users rather than practitioners (as I understand it).

Either the companies had to stop selling this software (in the USA) to users, or they had to produce a version that had no capability to change the machines settings.

I suspect that the challenge faced by the vendors & what I also think may be behind much confusion (this is just an opinion), is that the new software must also be robust enough to not be hacked to allow changing the machine settings. The FDA can be pretty tough & their powers seem unlimited. They are not an organization any manufacturer wants to get on the wrong side of.

The reality for most folk is that ignoring the edicts re sale of the software, it can be bought by users without breaking the law, by purchasing it from countries where it is openly sold. Another dilemma for manufacturers not wanting to get on the wrong side of the FDA in the USA is what policy to apply outside the USA that won't offend the FDA.

If the machine vendors decide to sell software that can extract the data and doesn't include the ability to change machine settings, I think it may need to be proven to be un-hackable (is there such a thing ? ). I suspect that the vendors may be hoping someone else will develop data extraction software & get them off the hook, but, it seems unlikely they will be making that an easy task by freeing up access to the data formats & content & their protocols.

DSM

PS just for the record - I own more Respironics machines than any others & in just under 5 years I estimate
- 40% would have been using various Respironics machines - (Remstar Auto, Bipap Pro II, Bipap Auto, Bipap Auto SV)
- 25% would have been using Puritan Bennett machines (PB420S & PB330)
- 35% would have been using Resmed machines (S7 Elite, S7 Spirit, Vpap III S & S/T, S8 Compact, S8 Vantage, Vpap Adapt SV)

All the machines I have used have been great machines with terrific features. Each has its own story. Each also
had things I didn't like about them & I suspect there were a few design deficiencies in some of the older models.
I currently cycle between two machines one Respironics & the other Resmed. For some reason I am still looking into
I find it helps to switch between the two different algorithms. This switching is typically after 3-6 months on either
machine.

I have long wondered if some of us have a tendency to get used to the pattern of a cpap, then resist or thwart it.
This observation comes from myself and also from my wife who has long commented on how after some time
(months) there seems to be a patterned interaction with the machines leading to a decline in theraputic benefit. I
have also long wondered why some people report a big improvement (approx 2-4 months) when 1st on therapy, then
go into a decline (as described above). This has led me to wonder that there may be a segment of users who do get
into a declining therapy pattern after adapting to their cpap / auto, & who may then discover that the more variable
the machine is, the less the negative patterns occur. By variable I am thinking of the variability one can
experience from bilevel & servo ventilation machines as distinct from a single pressure machine (cpap / Auto).

The quickes decline in benefit for me happened with a cpap, similar happened after switching to auto. Then I got
close on 9 months of good therapy on switching to a bilevel, then 12 months on switching to an SV, but now am
tending to last 3-6 months on either before swapping them which then seems to provide a 3-6 month boost. It seems
an odd theory but it is what appears to be happening ?.

DSM

cinco777 wrote:it's only AIR.

So have you figured out the causes, effects and dangers of central apneas yet?

Blackspinner-- How do you tell a central from an obstructive by looking at your data? So you'd know whether to increase or decrease pressure?

LinkC wrote:

cinco777 wrote:it's only AIR.

So have you figured out the causes, effects and dangers of central apneas yet?

Blackspinner-- How do you tell a central from an obstructive by looking at your data? So you'd know whether to increase or decrease pressure?

Just how is a central any worse than an obstructive apnea? We have been having apneas for years before we knew it, both centrals and obstructives. And we thought we were sleeping good.

LinkC wrote:
Blackspinner-- How do you tell a central from an obstructive by looking at your data? So you'd know whether to increase or decrease pressure?

You should know from your sleep study whether you have a tendency to centrals. 95% of us don't and won't "induce centrals" by mistakenly setting the pressure higher than needed to treat our obstructives.

If you are part of the 5% that have centrals, it's a good idea to get a machine that distinguishes them.

Lately it sounds like you are arguing for government control of what we do at home in our bedrooms.

LinkC wrote:
Blackspinner-- How do you tell a central from an obstructive by looking at your data? So you'd know whether to increase or decrease pressure?

Well duh if I put it up and the AHI increases then I know I am going the wrong way.
Simple "IF ... Then... Else...." code I write dozens of those equations every day.
Assuming I was handed a simple check list by my attending physician or warned because they saw this in my sleep study I can make that very simple decision, Eve a cave man could do it, never mind a female homo sapien.

BlackSpinner wrote:Eve a cave man could do it, never mind a female homo sapien.

by LinkC on Fri Nov 13, 2009 5:58 am

cinco777 wrote:
it's only AIR.

So have you figured out the causes, effects and dangers of central apneas yet?

YES.
I am, however, keeping the cause(s) a secret.

LinkC, it appears, from your posts AND the multitude of rebuttals, that our Federal Government has added you to the Endangered Species list. How is that working for you?

GumbyCT wrote:Just how is a central any worse than an obstructive apnea?

I dunno. And, since no one answered, apparently neither does any of the "everyone should dump their doctor and go it alone" crowd.

BlackSpinner wrote: Well duh if I put it up and the AHI increases then I know I am going the wrong way.

So, just to be clear, you are saying that (assuming you have a propensity toward pressure-induced centrals), if you increase pressure and have an increase in AHI, you are "going the wrong way" and the proper action is to lower the pressure. And you would KNOW that just from the increased AHI. Is that correct?

LinkC wrote:

GumbyCT wrote:Just how is a central any worse than an obstructive apnea?

I dunno. And, since no one answered, apparently neither does any of the "everyone should dump their doctor and go it alone" crowd.

Centrals are probably not "worse" than obstructives -- just different in that centrals have a different cause, and centrals aren't usually treated by "more pressure."

Check out what christinequilts (who had almost pure Central Sleep Apnea, and very severe at that) had to say about "centrals:"

Links to Central Apnea discussions
viewtopic.php?p=22702

From one of her excellent posts:
viewtopic.php?p=47781#p47781

"And having centrals is not really any different then obstructive apneas- they just have a different cause, but they both mean you are not breathing as well as you should be."

rooster wrote: Lately it sounds like you are arguing for government control of what we do at home in our bedrooms.

Dunno where you got that... Unless you are using a "government" sleep doctor.

LinkC wrote:

BlackSpinner wrote: Well duh if I put it up and the AHI increases then I know I am going the wrong way.

So, just to be clear, you are saying that (assuming you have a propensity toward pressure-induced centrals), if you increase pressure and have an increase in AHI, you are "going the wrong way" and the proper action is to lower the pressure. And you would KNOW that just from the increased AHI. Is that correct?

Since the object is to DECREASE AHI it is a no brainer that the increase of pressure was not the answer.

ot only that but I am considered capable of practicing safe sex - probably far far more dangerous these days then using a cpap machine. Besides us women are also given the power to decide our fertility and monthly cycles with minimum intervention from our physicians plus if we decide to have a kid we can do so without the benefit of a physician - if you think using CPAP is a complicated and a pain try planning and having a baby sometime!

Isn't this the truth! People act as if it is inordinately complicated to use a cpap, and make minor adjustments that improve a good situation--it isn't as if most of us are throwing away our cpaps and opting for herbal therapy, or witchcraft. Minor tweaks make a lot of sense if done judiciously and with some planning and observation of the data. Some like to make this more complicated than it is--maybe it feeds their egoes, or makes them feel "special" that they can only get such sage advice from a DME or sleep doctor---that is assuming the sleep doctor or DME actually calls them back.

Autopapdude wrote:

ot only that but I am considered capable of practicing safe sex - probably far far more dangerous these days then using a cpap machine. Besides us women are also given the power to decide our fertility and monthly cycles with minimum intervention from our physicians plus if we decide to have a kid we can do so without the benefit of a physician - if you think using CPAP is a complicated and a pain try planning and having a baby sometime!

Isn't this the truth! People act as if it is inordinately complicated to use a cpap, and make minor adjustments that improve a good situation--it isn't as if most of us are throwing away our cpaps and opting for herbal therapy, or witchcraft. Minor tweaks make a lot of sense if done judiciously and with some planning and observation of the data. Some like to make this more complicated than it is--maybe it feeds their egoes, or makes them feel "special" that they can only get such sage advice from a DME or sleep doctor---that is assuming the sleep doctor or DME actually calls them back.

Yes, good points
One of the irregular members here (Banned) who occasionally gets jumped on for his forthrightness & bluntness ( ), once made a statement that I liked, it was along the lines of "There are no reports I know of where ordinary OSA/CA users killed themselves by adjusting their cpap machine". But there are some who come among us and try to argue that any tweaking of our own settings can be construed as potential suicide.

Naturally, commonsense says that if someone has a serious medical situation (CHF - COPD (Damaged lungs etc: )) then stick to the adjustments made by your professional advisor & vary from them at one's own risk. But for the great numbers of us conventional users, a bit of education & cautious tweaking isn't going to be life threatening - highly educational yes - but not a killer (the air went haywire & beat me to death ).

DSM

LinkC wrote:

BlackSpinner wrote: "Most Cpapers SHOULD be doing the same"

That would be nice, but only if they are educated, motivated and competent enough to do so.

Then it appears we are all agreed, now that the incompetent and disinterested have been pared from the list. Group hug!