CPAPtalk.com

greatunclebill wrote:this thread just strengthens the argument for needing a prescription for at least the initial xpap purchase. i agree that this is lifetime condition and the initial prescription should be a lifetime arrangement. i can imagine wannabe doctors buying on off the shelf for every family member as chrismas presents and making them use it whether they need it or not. Thank God, it will never happen.

I am totally perplexed by this post. While I have known family members to be thoughtless in buying gifts, I never hard of this extending to unasked for medical supplies. Perhaps I am in the dark ages.

Anyway, the issue is that many people who desperately need treatment can't afford even a home study test. Yes, it could be they have something else but if people are allowed to take the risks in buying OTC meds, they should be allowed to do the same in buying a cpap machine.

49er

Wulfman... wrote:I don't think it's so far-fetched. It's been discussed (speculated) on the forum since about 2005 or 2006.
How many Walmart stores have optometrists (eyeglass departments)? Our local one does. You can buy Diabetic and blood pressure testing equipment and supplies there. Lots of stuff that used to require prescriptions no longer do.
I'm holding out hope.


Den

.

I can purchase anti acid over-the-counter with some very serious possible side effects and I haven't gone through a gastro-endoscopic test that I remember.... of course I could have and I simply forgot due to my untreated apnea as it was suggested here... my point is that the only side effect from purchasing an intelligent PAP and using it to help you stop snoring and breath better is that you may not needed and you wasted your money. I have not heard anyone dying from using a machine that allows air even when you don't actually need it. have you...? So what's the risk in allowing the customer to spend his own hard worked money in what could solve a dangerous problem?

remhunter wrote:
intellipap machines are made in the U.S.A. You can verify that in the internet. Are the parts imported? Who actually cares about it???? I certainly don't!

Assembled does not equal "made" except in advertising. Putting the imported components into a imported shell does not equal "I made it"

To me there is one truth one undeniable truth not any doctor here can't refute it:
THE AIR PRESSURE YOU (generically speaking meaning every one, others, etc.) VARIES BY THE HOUR, BY THE DAY, BY THE ACTUAL PHYSICAL WORK DONE IN A SPECIFIC DAY AND BY WHAT YOU EAT" which means that if you had a plate with beans made with a lot of seasonings, a piece of roasted pork and a dozen of corns you will probably need more air pressure than if you had a light dinner.

umm no. It doesn't. Not enough to make any difference to the average human. The pressure a cpap machine puts out is what is required to keep your airways from collapsing WHILE YOU ARE ASLEEP. When you are awake you are not asleep and your muscle don't collapse - assuming you have obstructive
sleep apnea.

FIXED PRESSURE MACHINES a.k.a. CPAPs are like type writers compared to apple computers using some word program. They are set to work at a top pressure all night and I have a cousin who really needs it and he is unable to sleep more than 3 hours without having to throw it to the corner every single night because of the uncomfortable HIGH pressure the machine was set originally. Don't get me wrong! He has federal insurance and a top of the line RESPIRONICS and he is fed up with it! You could say: "why isn't he going to the doctor?" HE HAS. The doctor told him that "the needs that high pressure at certain moments at certain stages of the sleeping process or he is going to die"

So there are some doctors who don't know or understand about bi level machines when they should. That doesn't mean all testing or all doctors are wrong.

"As someone who is uninsured, knowing what I now know, I would have skipped the home study test and purchased a machine from either CL or a trusted member on this site. I mean, the first sleep doctor was 99.9% sure I had apnea and I definitely had all the symptoms plus a strong family history.

And I received absolutely no help in finding the right pressure settings from her or the 2nd sleep doctor. Everything I have learned has been on my own thanks to this site.

Regarding the folks who feel they were misdiagnosed with apnea, did they get a 2nd opinion and if so, what did the doctors say? I understand your concerns but on the other hand, there are people who truly have it but are in denial. Unfortunately, it is tough sometimes sorting out everything in a manner that is fair to everyone."

49er

I applaud you and I will do just that. I don't see why I should depend on someone's opinion no matter who he claims to be. As you may know new intellipap machines (auto) offer you the possibility to see and print if you need it a list of indexes derived from the study the machine has done during the night...days months and even 90 days in a row. That smartcode has one index 'pressure plateau" that tells you literally the % of how many times the machine had to go over the set original pressure in the machine at the beginning of its use. In English now.... Assuming you began your own treatment with a pressure of 6 (just to have a number) and you set the range between 5 and 12 just to make an example. That specific plateau index will show you how many times the machine went over the pressure of 6 -if it did more than 10% of the time you sleep last- remember that machines set sleeping time between 4-5 hours for a normal person evaluation.

It is simple math.... If you see that your machine tells you that it has to go over the set pressure you thought or your doctor thought it was the correct one, and the % is over 10 then you know... let me repeat it again... YOU KNOW for sure that you need more pressure setting as the media. instead of 6 in my example let's say 7 or 8. It doesn't matter because the next report in a week or month after will tell you if that happened again or the % went lower the mark of 10.

You don't need to become a rocket scientist to see this.... even a kinder-garden child could figure it out.

I would like to see OTC cpap products. I wouldn't expect to see PR or Resmed products but I am sure a functional OTC generic products could be useful. The first cpap machine was not considered a medical device but it worked and evolved to what we have now. Basically it is just getting air blown up your nose. If your hose broke during the night wouldn't it be nice to just run to the store and buy a new one? How about a mask? What if your machine quit working? I do want to use the best equipment of course but in a pinch I would rather have OTC than nothing. Not everyone can afford a sleep study. Should those people be denied therapy. I don't think so myself. I think some therapy is better than no therapy. I don't think anyone that would buy OTC products would think they had the best equipment but realize that they had just generic OTC product that is better than nothing. Cheap hearing devices can be bought but I don't think anyone that is using one of those would think they were the same as the big name brands. Cpap therapy should not be limited to only those with a good insurance policy.

On the other hand you have an exact AHI from an intelligent machine that is showing the rate of your improvements as you [meaning YOU AS YOURSELF] changed the set pressure up or down according to what the machine is suggesting you to do. Is this dependency and ignorance of the actual health issue by patients who say they trust 100% in their doctors what I find so amusing.

remhunter wrote:No one day TEST that you can have done on anyone today is capable of determine with 100%% exactitude the cause of the problem

It's also true that you can't determine anything with 100% exactitude from the data pulled from a data-capable machine, either. And there is stuff that can be evaluated in a PSG that isn't on your machine (EEG, etc.).

Mind you, I am a big fan of APAP and of data-capable machines. I'm just willing to consider the possibility that my doctor might know a little more than I do. Not my DME though.

remhunter wrote: I have a few co-workers who given the state regulations they had to go through a medical test called "PHYSICAL". I won't go into more details... understood?

Trucker?

Thanks remhunter, I was able to figure out what pressure I need. Now, I have to solve the problem of staying asleep on the machine which is a whole other issue.

49er

remhunter wrote:"As someone who is uninsured, knowing what I now know, I would have skipped the home study test and purchased a machine from either CL or a trusted member on this site. I mean, the first sleep doctor was 99.9% sure I had apnea and I definitely had all the symptoms plus a strong family history.

And I received absolutely no help in finding the right pressure settings from her or the 2nd sleep doctor. Everything I have learned has been on my own thanks to this site.

Regarding the folks who feel they were misdiagnosed with apnea, did they get a 2nd opinion and if so, what did the doctors say? I understand your concerns but on the other hand, there are people who truly have it but are in denial. Unfortunately, it is tough sometimes sorting out everything in a manner that is fair to everyone."

49er

I applaud you and I will do just that. I don't see why I should depend on someone's opinion no matter who he claims to be. As you may know new intellipap machines (auto) offer you the possibility to see and print if you need it a list of indexes derived from the study the machine has done during the night...days months and even 90 days in a row. That smartcode has one index 'pressure plateau" that tells you literally the % of how many times the machine had to go over the set original pressure in the machine at the beginning of its use. In English now.... Assuming you began your own treatment with a pressure of 6 (just to have a number) and you set the range between 5 and 12 just to make an example. That specific plateau index will show you how many times the machine went over the pressure of 6 -if it did more than 10% of the time you sleep last- remember that machines set sleeping time between 4-5 hours for a normal person evaluation.

It is simple math.... If you see that your machine tells you that it has to go over the set pressure you thought or your doctor thought it was the correct one, and the % is over 10 then you know... let me repeat it again... YOU KNOW for sure that you need more pressure setting as the media. instead of 6 in my example let's say 7 or 8. It doesn't matter because the next report in a week or month after will tell you if that happened again or the % went lower the mark of 10.

You don't need to become a rocket scientist to see this.... even a kinder-garden child could figure it out.

Drowsy Dancer wrote:

remhunter wrote:No one day TEST that you can have done on anyone today is capable of determine with 100%% exactitude the cause of the problem

It's also true that you can't determine anything with 100% exactitude from the data pulled from a data-capable machine, either. And there is stuff that can be evaluated in a PSG that isn't on your machine (EEG, etc.).

Mind you, I am a big fan of APAP and of data-capable machines. I'm just willing to consider the possibility that my doctor might know a little more than I do. Not my DME though.

What else can be evaluated from a PSG besides restless legs syndrome and apnea?
Unfortunately, I haven't yet run across doctors who know more than I do. And I don't mean that in an arrogant way. They really don't.

49er

49er wrote:What else can be evaluated from a PSG besides restless legs syndrome and apnea?
Unfortunately, I haven't yet run across doctors who know more than I do. And I don't mean that in an arrogant way. They really don't.

49er

Obviously I'm dumber than you, 49er. I say this without sarcasm. I've had plenty of doctors who know more than I do about their specialties, no matter how well-educated I may be about my narrow condition(s).

Data that I got on my PSG that I don't get on my data-machine:

(1) my desats
(2) evaluation of positional impact of apnea
(3) EEG, confirming to what extent "clear airway" apneas were actually centrals (home machines can only make a guess)
(4) Ruled out PLMD

Some folks here have MacGyvered some of this with a pulse ox and a Zeo (may it rest in peace) and even a video camera, but that really underscores the usefulness of the additional data not collected by the machine.

Looking at it retrospectively, because I have simple OSA, yeah, maybe I could have gotten by with just handing me a machine and educating me. Not everyone is going to be in that boat. But how does someone who thinks they have apnea know for sure in advance that they have OSA and not CSA?

Hi DD,

Can you send some of those good doctors to my area? I am not the only one who has expressed frustration about this so I don't think it is just a "me" issue.

Good points about what the PSG picks up. Home study got desats but nothing else.

You're right, someone could have CSA and not OA. But that is the risk they have to consider when deciding whether to engage in self treatment or not. And if they can barely function and all signs point to OS and they can't afford even a home study, I think the risk in buying a machine on your own is worth it as long as you have done your homework.

49er

Drowsy Dancer wrote:

49er wrote:What else can be evaluated from a PSG besides restless legs syndrome and apnea?
Unfortunately, I haven't yet run across doctors who know more than I do. And I don't mean that in an arrogant way. They really don't.

49er

Obviously I'm dumber than you, 49er. I say this without sarcasm. I've had plenty of doctors who know more than I do about their specialties, no matter how well-educated I may be about my narrow condition(s).

Data that I got on my PSG that I don't get on my data-machine:

(1) my desats
(2) evaluation of positional impact of apnea
(3) EEG, confirming to what extent "clear airway" apneas were actually centrals (home machines can only make a guess)
(4) Ruled out PLMD

Some folks here have MacGyvered some of this with a pulse ox and a Zeo (may it rest in peace) and even a video camera, but that really underscores the usefulness of the additional data not collected by the machine.

Looking at it retrospectively, because I have simple OSA, yeah, maybe I could have gotten by with just handing me a machine and educating me. Not everyone is going to be in that boat. But how does someone who thinks they have apnea know for sure in advance that they have OSA and not CSA?

I think some form of inexpensive $150 home sleep study test will be made available from a walmart-type store too, with techs in Asia looking at your sleep study data and transmitting that data back to your PCP through some clearing house in the US. For the moment, I think there's still too much money to be had by insurance companies, manufacturers and sleep centers to put CPAPs in walmarts. When it does happen, sometime in the distant future, I suspect the first company to jump on board will be one of the newer companies like 3B with something like RESmart Auto CPAP, branded with a walmart logo, or at least in a walmart-branded box. You will probably still need a prescription for the APAP, but that can be gotten from a PCP, once your $150 sleep study suggests you need it.

Hopefully, the Wal-Mart employees will get a discount,
as the ones I have spoken to say their health insurance does NOT cover cpap equipment.
Even BiPap, as one friend needs.

What do you or doctors know about CSA?
A malfunction in the thalamus region? what else? Do they have some sort of technique to help relief in C.S.A.? Most apnea sufferers have OSA and CSA combined and that makes sense. I will get to this point in a moment but let me ask you a question so you could answer it later: WHAT'S FIRST THE CHICKEN OR THE EGG?" No kidding! This is very serious question>
Patients with OSA will experience breathing difficulties due to X reason... could be the nose or the mouth or the tong, doesn't matter. There are many reasons for OSA and that's a fact. What do we know about CSA? Graphics and EKG? We (humans) know about the brain what you know about astrophysics, Sr. This I know: You use high amount of sugar and carbohydrates and you begin (at one point) to lose control of the sugar levels (glucose) in the blood. There are multiple stages of diabetes -non-mellitus- and hypoglycemia [believe it or not] is one of them. The human body tries to adapt to a healthy issue that has been "ignored" by the 'HOST'...you or me. We begin to snore and we think that is funny because my father used to sound like the engine of a truck at night too. I had a girlfriend who used to say to me "I'm relieved that you snore because it tells me that you're alive". and I felt somehow complimented with her observation.
Who is to deny that CSA is just the point when the body -meaning the brain- reached the point when no other adapting function can be applied by it and some sort of malfunction and degenerative process begin to take place in some d... part of the thalamus? Who then?!!! All the PAP machines are capable of doing is fixing the OSA. By the use of pressured air and some level of humidity the air channels are kept opened and the sleeping process is not interrupted. CSA maybe an irreparable damage for a region of the thalamus just like diabetes is for a region of the pancreas when enough damage was done to it.

Now... allow me to illustrate you with another example of how erroneous a sleep test was with one of my co-worker (By the way... not a TRUCKER) He was diagnosed with apnea and the set pressure was 6, but he was given a testing machine that had a chip connected to a SIM so the doctor can monitor the results given by the machine AFTER THE TESTING DAY. My friend and co-worker was called back and the pressure was raised to 11!!!!!! my dear God! 5 points approximation? Oh! It was the machine at home used in his bed what decided to a new pressure and the doctor was like the monkey in the joke of the astronaut... the monkey was the one piloting the ship and the astronaut the one in charge of supply the monkey with the banana for lunch...

Drowsy Dancer wrote:

49er wrote:What else can be evaluated from a PSG besides restless legs syndrome and apnea?
Unfortunately, I haven't yet run across doctors who know more than I do. And I don't mean that in an arrogant way. They really don't.

49er

Obviously I'm dumber than you, 49er. I say this without sarcasm. I've had plenty of doctors who know more than I do about their specialties, no matter how well-educated I may be about my narrow condition(s).

Data that I got on my PSG that I don't get on my data-machine:

(1) my desats
(2) evaluation of positional impact of apnea
(3) EEG, confirming to what extent "clear airway" apneas were actually centrals (home machines can only make a guess)
(4) Ruled out PLMD

Some folks here have MacGyvered some of this with a pulse ox and a Zeo (may it rest in peace) and even a video camera, but that really underscores the usefulness of the additional data not collected by the machine.

Looking at it retrospectively, because I have simple OSA, yeah, maybe I could have gotten by with just handing me a machine and educating me. Not everyone is going to be in that boat. But how does someone who thinks they have apnea know for sure in advance that they have OSA and not CSA?