Should online cpap stores post pressure setting instructions

johnnygoodman · Post by **johnnygoodman** » Sat Feb 05, 2005 11:30 am

Howdy,

We're wondering what the community thinks:

Should cpap websites post machine pressure change instructions?

Johnny

unclebob · Post by **unclebob** » Sat Feb 05, 2005 12:02 pm

Hi Johnny,

I voted yes because you didn't have a maybe choice. Muck is my hero in this regard as I got the needed info from him.

I'm not convinced everyone should have this info as they may not know how to properly use it and may complicate their treatment. If they were an informed user and could monitor the results then for sure,

rested gal · Post by **rested gal** » Sat Feb 05, 2005 1:49 pm

I voted "no".

I do think cpap.com should continue to include the clinician's manual with any machine they sell to any individual.

I'd also have no problem with cpap.com's support people sending a copy of the instructions to anyone who asked for it, regardless of whether the machine was bought from the company or not.

I have no problem with message board users posting how they themselves access the clinical menu on a machine.

But for the supply company itself to put those instructions out in the open on its website - nope.

wading thru the muck! · Post by **wading thru the muck!** » Sat Feb 05, 2005 2:06 pm

I'll second rested gal's post.

My thoughts exactly...really...exactly word for word.

chrisp · Post by **chrisp** » Sat Feb 05, 2005 3:11 pm

Yes,
If someone needs or wants to change their settings they should be able to get the instructions . Not have to beg on the web or wait for someone to answer the phone. Some people are from africa , India , whereever. If they want to change the settings let them. If they have a question they can phone or post their question. Ultimately we must all be responsible for ourselves. Just look at the crappy service some get from so called Professionals . DME , RRT and Drs. We could hardly do worse by ourselves.
Do we have to take a test now to determine if we are capable of operating our cpap ? Some brands already have their clinician instructions on the web. Invacare comes to mind.

We tell folks to take control of their therapy then we want to deny them the ability to do it.

If the supply company want to take the chance and post the instructions I have no problem with that. I'm sure they have already cleared it with their legal folks.

If these instructions are so sacred why are the DMEs selling the instructions on EBay ? These are the clinician instructions that they didn't give to their patients/customers.

Cheers,

Chris

guest · Post by **guest** » Sat Feb 05, 2005 5:06 pm

No. Placing instructions out there for anyone to get hold of is overkill! Only prescribed users should have access to the coded information. They are the ones using the machine and they should be the only one in the household able to change the settings.( And even some may choose designated individuals to perform this task for them.) In any case, I view PAP use no different than medication use. Both are prescribed but in the wrong hands can cause damage.

Guest · Post by **Guest** » Sat Feb 05, 2005 5:28 pm

guest how can it cause damage? I am intreagued by this comment. Where is the evidence for this?

Fifi · Post by **Fifi** » Sat Feb 05, 2005 5:55 pm

With regard to prescriptions the medical World does not hand out one tablet at a time. People are clearly told, although it is not necessarily written on the label, that if we take more than the prescribed amount it could be detremental to our health.

Surely, there is a danger there, that an adult patient may decide to take the whole pot of pills to feel better quicker! Most adults do not resort to taking the whole pot at once, which is quite amazing, considering the amount of intelligence credited to most individuals by the medical profession.

The Doc does not hand patients one tablet at a time, since it is dangerous for them to have a box full of pills. The individual is credited with some intelligence which means he then has a choice to overdose or not. The decision is left to the patient.

CPAP is still relatively new and in a way it is like a new toy, docs and dmes [b]need to keep control[/b]. In this area individuals are currently credited with Zero intelligence, just cos individuals will not take the whole lot of pills, it does not mean they won't ramp the pressure up to max or turn it right down.

By all means spell out the potential dangers of individuals fiddling with pressures, but normal adults should be allowed to make that informed choice, for themselves, just as they currently are with prescribed pills. this is no different.

I am sick of being treated as mentally deficient, when it comes to making health decisions about my own body.

I feel really passionately about this, does it show????????????Glad to have been able to get that out of my system.

Guest · Post by **Guest** » Sat Feb 05, 2005 8:17 pm

guest wrote:No. Placing instructions out there for anyone to get hold of is overkill! Only prescribed users should have access to the coded information. They are the ones using the machine and they should be the only one in the household able to change the settings.( And even some may choose designated individuals to perform this task for them.) In any case, I view PAP use no different than medication use. Both are prescribed but in the wrong hands can cause damage.

What . Do I now have to worry about some stranger sneaking into my home and adjusting my cpap while I was out because he found the instructions on the web. Give me a break.

That kind of thinking works in a socialist system. Not where I live. I dread the day when I a forced to buy aspirin and cold medication in tiny packets because I might use then to harm myself.

I think if you had the intelligence to find this site you'd be able to adjust your cpap.

You must be one whom uses a DME . Some of us would rather sort this stuff out for ourselves . Others have no choice because we cant afford a DME or sleep Doc. We are cpap do it yourselfers from the start.

If you dont want to adjust your own cpap thats fine. Don't deny me the ability to adjust mine when I want where I want.

Yoga · Post by **Yoga** » Sat Feb 05, 2005 11:22 pm

I vote a resounding yes.

I was told to increase my pressure 2 cm. because I continued to snore at the titrated pressure. I prefer to increase my pressure 1 cm. at a time. Do you think my DME is going to come out and adjust it 1 cm. at a time?

I had an appointment with the DME which I had made 2 weeks ago to try on masks. She tried to contact me on the day I had the appointment but I missed the call. I mad the trip but she had run out of masks.

Dave Hargett · Post by **Dave Hargett** » Sun Feb 06, 2005 1:41 am

I voted no. I've known too many people who think that adjusting the pressure up or down at their own whim, especially if they are having trouble adjusting to CPAP, is something they should be able to do. Generally, adjusting the pressure downward will UNDER treat your sleep apnea. Some folks prefer comfort and inadequate treatment I guess, but I have a hard time condoning that.

I also think that anyone who changes their pressure without having a manometer to check that the pressure setting is correct is again playing with fire a little bit. I've had a machine that was a little off and had to be set at a higher pressure to actually deliver what was prescribed.

My original feelings on this topic were developed years ago when the settings were mechanical adjustments inside the machine, too, and not just a matter of pressing a few buttons in a certain sequence.

I don't disagree that an individual patient, in some circumstances, may need the ability to adjust his/her machine and that the instructions can be given to him/her, but I think posting the instructions widely on the web (or even on this website) should not be done.

As far as damage goes, as I mentioned above, a lower pressure than what was titrated may undertreat the level of apnea. I've heard, but don't know of a study that validates it, that higher settings (above what is required) may actually cause some central apneas.

I don't second guess my medications without talking to my doctor. I don't second guess my CPAP pressures without talking to my doctor either.

Guest · Post by **Guest** » Sun Feb 06, 2005 8:43 am

"Damage" can be brought about if pressure is set too high /too low. Results could include central apenea events, an increase in HI and /or a decrease in Rem sleep.

Guest · Post by **Guest** » Sun Feb 06, 2005 9:09 am

In response to the guest commenting about a stranger breaking in and tampering with his CPAP. please, think beyond your own circumstances. Well meaning caregivers and patients themselves may not be as experienced or versed in tweaking CPAP machines as yourself. If how-to instructions were posted online, my opinion is that some users would, bypass their Dr. and change settings too aggressively. Also, they might not be knowlegable about resulting symptoms. Certainly no one intends to harm themselves, but there are people out there that misuse medications. Some even feel better in the short term and will assume a false confidence in their judgement! Long term damage is a high price to pay for such false confidence! I have no problem with obtaining needed equipment and instructions through my doctor. All of my clinicians manuals have been requested by him for my use. With the software and manuals, I am able to be a vital partner on my care team!

Guest · Post by **Guest** » Sun Feb 06, 2005 9:47 am

A manometer Dave, This is 2005. I'm talking autotitrating units here. Adjusting the range should be no problem. So what is the difference if I get the instructions on line , from ebay or from a well meaning hosehead on this forrm.
I dont have a Dr. or DME to advise me . Just my cpap software and how I feel in the moorning when I wake. I'm not made of money and I dont really think I get my moneys worth from the so called "PROs"

Remember , these are the same people that sold you a $300 straight cpap for $1500.

Besides the clinician manual comes with the unit when you buy online so there is no point argueing with the do it yourselfer because we already have it.

"All of my clinicians manuals have been requested by him for my use. With the software and manuals, I am able to be a vital partner on my care team"

So you vote yes after all . You already have it but you would deny others the same.

Guest · Post by **Guest** » Sun Feb 06, 2005 11:04 am

When someone feels different than you on issues, critical remarks serve to represent you in a negative light. Please, try to respect the opinion of others, if indeed you value your own.