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Dangers of Using a CPAP Machine
#21
(06-22-2012, 11:54 PM)Dreamcatcher Wrote: There is no cases that I can find of anyone being harmed by a machine.

Mine dropped on my foot a month ago and it really hurt.

There. That's one example for 'ya, DC. Bigwink

Too-funny
SuperSleeper
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www.ApneaBoard.com


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#22
Hi there,

I am from Canada and so regulations for CPAP and BiPAP machines will be different, I am a Registered respiratory Therapist (so my knowledge is accurate) I will start off saying I do not believe that these machines are regulated because they are afraid they will kill you if used improperly, its because it takes years of training to understand what all the data means. Yes after you become familiar with a CPAP machine you may feel like you can turn it up a notch if needed but there are reasons your machine is set to the numbers it is set to.

Also not all apneas are the same, central vs. obstructive, which are treated differently. Also you do a sleep study and titration to determine the pressure you need. It takes medically trained people a few hours to mark or score your study, you have to know how to read heart rhythms and arrhythmias, sleep patterns, snoring, apneas,Cheyne-Stokes Respiration, Complex Sleep Apnea, Hypopnea, sleep disorders and be able to read the whole test. That takes years of training.

Just because you can Google how to change the pressure of your machine does not mean you are qualified to do so. There are a number of things you can learn to do on google - building a house for example- that does not mean you should do it and it would be safe to do.

I do not believe that if your pressures are improperly set it would kill you - the danger arises when someone on a pressure of 14cmH2O decided to turn it down to 9 or 8.. then you could die because if you have a long enough period of apnea you could stroke or have a heart attack. This would be the same as deaths from untreated sleep apnea. As far as too high a pressure the only thing I could think of is if you have damaged lungs and your pressure is too high you could blow a pneumothorax - this could kill you.

It is a known fact that improperly treated sleep apnea or untreated sleep apnea can kill you - see Reggie White NFL star, Justin Tennison (Deadliest Catch tv series), Jerry Garcia (Grateful Dead tv series)
#23
tocute- A couple thoughts come to mind in response to your post. I've learned that even qualified, trained medical personnel spending hours can come up with incorrect titration results in conducting and analyzing a sleep study. One reason, as many posts on this board have mentioned, is that a titration is only one night's snapshot of a pt's sleep patterns--a very tiny sample indeed.
When I had a new study (after being on cpap for 5 years), the newly determined pressure was not controlling my apnea. My wife, who is an MD, reported that I was still snoring in my mask and struggling with apneas. The sleep doc, who is board certified in sleep medicine and a pulmonologist, couldn't understand why and told me he had spoken with the tech who conducted my sleep study to make sure it was properly done. The doc told me he was puzzled. He began raising my pressure in small steps above the titrated pressure. After 3 or 4 increases, I was still having problems with apnea. His suggestion was another sleep study.
That's when I suggested to him, and he agreed to write for an APAP for me on a trial basis. It worked so well, that he later changed my script to a permanent one. While the doc told me that there has not been a clinical study that shows an APAP to be superior to a CPAP, the APAP certainly did a great job of locating the correct pressure for me! And when checking my data from day to day and week to week, I see that my pressure needs do indeed change. Meanwhile, the APAP adjusts to meet those needs, and my data has been looking quite good ever since.
P.S. Although I'm not a medically trained professional, I do have an understanding of almost every sleep related term you mentioned--much of that knowledge comes from reading, and much of it from this board, believe it or not.


#24
tocute4u16,

This board exists and thrives due to the ineptitude and abject failures of the extant system you seem to advocate so sincerely.

You might want to take a look around, read some threads, see what kind of advice has been offered and maybe get to know us a little bit before condescendingly asserting that we are too ignorant to understand the things you have mentioned.

#25
It took a month of downloading and reading my data every morning before I understood it well enough to manage my own CPAP therapy. There are some important differences between managing one's own care and scoring a sleep study. First, I would not know where to begin if I were to try to analyze another patient's data (which would be practicing medicine without a license). I depend on a subjective understanding of how well I sleep each night when reviewing my data. I could never communicate this type of info with someone else in sufficient detail to allow me to analyze their data. I also cannot make use of my own data if it is more than 2 or 3 nights old because I don't remember the night well enough.

Second, it does not matter if I achieve an optimal pressure setting on the first try since I can try again an unlimited number of times. I am looking for incremental improvement, not the best possible results. If I think a new setting would be beneficial, I make a slight change, try it for a week or two, and decide whether the results are better or worse than before. After 16 months I have been able to achieve an AHI of 1.5. If a doctor tries to tell me that my machine is set improperly, I will tell him that my sleep apnea is well-treated. If he wants to prescribe a different setting, I would try it long enough to decide if the results were better or worse than my 12-16 range, which was self-titrated. Then, if I get poor results with his settings, I will print reports using both settings, to persuade him to accept the settings I prefer. Then, if he continues to insist that his settings are better in some theoretical way, I will fire him.

I was forced down the path of managing my own treatment because I lost my insurance after my diagnostic sleep study and before I could get a machine. It wasn't easy. At first, it seemed like a trip down Alice's rabbit hole, since every time I thought I had a good understanding of CPAP, something very strange that I wasn't expecting turned up. If you have access to well-trained medical professionals who listen to you, by all means, make use of their expertise while it is available to you. But, learn enough so you're not dependent on them.
#26
(08-22-2013, 05:12 PM)jgjones1972 Wrote: tocute4u16,

This board exists and thrives due to the ineptitude and abject failures of the extant system you seem to advocate so sincerely.

You might want to take a look around, read some threads, see what kind of advice has been offered and maybe get to know us a little bit before condescendingly asserting that we are too ignorant to understand the things you have mentioned.

I don't see any condescension in tocute4u16's post, and I believe her information is mostly true. There are skilled medical professionals out there even if there are also a few quacks. Unfortunately, sleep apnea patients with quack doctors/RT's/DME's are overrepresented on the board, as are uninsured patients. This has unfortunately given the board a cynical atmosphere at times.

That said, I believe I have achieved a valid self-titration, albeit by a different method. To grossly oversimplify, a sleep study technician is hitting a bullseye, while I have been playing the old getting warmer / getting colder game. The proof is in my stats and in how I feel each morning.


#27
As a medical professional, I fully agree with tocute4u16, but I also see and understand the need for patients to take matters into their own hands and an glad to see this board in operation in order to help people do so.

That said, all of the caveats mentioned in her post are utterly correct.

So are the critiques of some of the sleep medicine professionals in the posts.

Be aware that we in the medical profession are here to help people, and it DOES take years of training and many more years of experience to understand the complexities of a patient's problems and look for an effective cure. Therapeutic sleep medicine is in its infancy, and there is much to learn from the body of experience of the current crop of patients. Working together, new and better therapeutic methods will be created, and that is another reason why this forum is valuable. We don't get to spend hours and days with patients, not under the current system, and so it can be that we get it wrong sometimes. But just as often, it is the patient, misunderstanding the therapy or going off on their own that is to blame. Either way, we are here to help, and when it does go wrong, the first thing to do is consult your doctor or therapist, and discuss a better method. We have an overview of a body of knowledge that is simply not available to those outside the profession, and see patterns that can point to other problems or methods of therapy.

CPAP is not a one-size-fits-all sort of thing, and the current guidelines do not always fit the needs of individual patients. That is why there always has to be adjustments made - this is not a "here you go and take it home and it works" system - it is a "let's try this and if not try that" system. That is why we have follow ups and readjustments and retesting.

And while I appreciate the deep feelings of the members here, I do think that the strength of the reactions to tocute's post to be out of proportion. Her statements are fully legitimate and should be taken in the spirit they were offered - a spirit of helping and sharing.

#28
What needs a prescription is arbitrary. You can not buy a Zzoma "bumper belt" to discourage sleeping on your back without a prescription, but a Rem-A-Tee bumper belt does not require a prescription. Pro-vent nasal valves are sold without a prescription for anti-snoring purposes, but essentially the same product requires a prescription for anti-apnea (wishful thinking??) purpose.

Too much Tylenol will cause a person who drinks to turn yellow with major liver problems, but you can buy all the Tylenol you want.

It is all politics and not with consistent rational basis.
#29
Much to do about nothing. Who in heir right mind would go out and attempt to misuse a Cpap? You would then have to crank it up to the highest pressure possible and even then I don't believe you could hurt yourself. My opinion. But with lawyers today, they could convince a jury that you killed yourself by using the wrong pillow and choked yourself to death. And on top of that, it was Macy's fault for selling you that Ralph Lauren down pillow.


#30
Sorry, but cannot sanction the idea of CPAP devices without an Rx. CPAP is potentially harmful if not used for the purpose it is designed for and correctly adjusted, like any medical device or drug.

If you do not have apnoea, it provides no help and may possibly harm, if you do have apnoea (well, how would you know you do without correct testing?) then it has to be the right type and adjustment for your type of apnoea or it will be of no benefit. Hearing aids are not sold over the counter because unless properly adjusted they can harm your hearing, eyeglasses the same. PAP devices are rather expensive machines that are designed for a specific ailment, and no person coming in off the street who has not first been properly tested will be able to correctly assess if they even need one or not.

There is a further reason for the Rx. It is to protect you from cheap knock offs, money making scams and most of all from stores trying to cash in by selling discounted devices to a public who don't need it, but will respond to advertising and in store come ons to buy them although they have no need of them and no one in the store is qualified to assess if they do or not. This way, it remains controlled and prevents such exploitation.


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