Why do Those on CPAP attack Those who found alternatives

[RickRed]

To All,
I've come to this forum many times to share good news. The news is there are succussful alternatives to treat APNEA, and for many it is possible to treat apnea without CPAP. I had a pillar, a nasal somnoplasy and use a dental appliance. I'm off CPAP I hope forever. I often take the time to share that with people on this forum who can't take CPAP any more.

At almost every thread someone will come on and say things, that are either hostile, sarcastic, filled with ridicule or the most common response is to simply ignore what I've posted.

I don't get the motive behind this kind of behavior and if someone would explain it to me I'd appreciate it.
Rick- Former CPAP user

[Less Sleepy]

Don't get too upset by the comments of ONE poster. I use CPAP, and I support your efforts at finding alternatives. I hope insurance companies will one day support the less expensive and more effective alternatives to UPPP and CPAP. I think I represent the vast majority of CPAP users. Please don't paint us all with the brush of that ONE annoying poster.

[RickRed]

Less Sleepy,

[HH]

I tend to think that some people are so happy with the relief they get from pap treatment that they either don't want to change, or are concerned about changing.

For me the issue is two fold.

The first issue is blood pressure increases caused by OSA. I read a bit about a trial where a group of OSA patients with high blood pressure were treated one night with minimal (a pressure of 4 or 5) cpap for the night. They didn't snore and felt god the next morning, but their blood pressure remained the same. The next night they were treated with an autopap to give them the best pressure for their individual conditions and the upper blood pressure level dropped an average of 10 points, which is rather significant. Relating this to a dental device, I believe (without reading any studies) that the devices may be best for those with "normal" blood pressure and that close follow-up should be given to those with high blood pressure. It certainly doesn't mean that dental devices should not be used in all situations, but care should be used when selecting the devices and blood pressure should be monitored on a regular basis.

The second issue relates to other medical conditions and/or treatments a patient may encounter. I used an autopap after major surgery and there was a significant increase in the pressure needed (from 10 to 16+ with oxygen being pumped into the hose) on the first day, with the pressure needs dropping over a few days. Medications that can impact pressure (especially those that relax the muscles) may cause problems for those on dental appliances or cpap - a general anesthetic certainly does.

Personally, I am delighted that there are options for those that have problems being compliant with cpap - be it an autopap or a dental appliance. I believe that these patients should be given information on the alternatives and should go with the one that takes care of them the best - and comfort & compliance is definitely one of the deciding factors.

At the same time, I believe that these patients who go on a set device (be it cpap or a dental device) should also be monitored on a periodic basis. Just as we moved from a non-OSA condition to OSA we can also move to a more severe level of OSA. I started on a pressure of 8 and now my 95th percentile for a night can be in the 10 range or the 13 - 14 range on any given night, plus my blood pressure has slightly increased over the years. That puts me into a group that is best served by an autopap, but does not make me anti dental appliances or basic cpap.

Personally I do not believe that the medical community in general really knows which approach is best for specific patients. These boards can provide information or experiences related to what has been successful for the posters and, in many cases, the posts are ahead of what a patient's doctor knows. I'm much like you in that I'm a strong supporter of what I use (an autopap), but I know that I'm not an expert - and the others on the board know it also!

Keep posting your best thoughts and don't worry about those that don't receive them well. I'm sure that there are a lot of people on the board that are tired of seeing old HH and his autopap posting yet again!

[Guest]

this must be the new cry me a river thread for Pillar rejects? All one has to do is go back and read your first posts here, you were crying , whining and complaining every day from day one on CPAP and your still whining today after being cured.

Or is it now your admitting the experimental procedure doesn't work so well after all? As I recall your OSA wasn't all that severe to begin with, your pressure wasn't that high.

I think you just like to hear yourself complain.

[Billinseattle]

Hi Guest.

Look who's being whiney. If you don't have anything productive to add, don't say it.

Everyone who has a reasonable and viable option in treating OSA should be able to present it without baseless attacks.

If you have constructive and accurate commentary to refute an option(such as the pillar device has no supportive evidence in patients with severe OSA), then state it.

B.

[Darth Vader Look]

I am fairly new to this board even though my condition has been with me for almost 6 years and I really have only known anything about it for the past 2 or 3 years. Yet with this board and in a such short time I have learned so much about sleep, how complex it is (it's not rocket science, its worse) and that we have only barely touched on it's complexities and solutions to them. People come here for help, to learn, to vent and to share their experiences with others afflicted with the same problems. Commonality, cause, effects and solutions to say the least. RickRed is looking a solution because the one remedy he did try didn't work for him. No need to bash him for this. I know with my short discussions with my sleep doctor, the operation side is a last resort and even then you usually out age the cure within 10 years or have to still use PAP therapy all be it at reduced levels. It's great to have a resource like this and I hope RickRed can get a remedy to his ongoing health concerns.

[Sleepy Stoboy]

Hey Rick,

I know what you mean, and I don't know what you mean, know what I mean?

Less Sleepy nails it. There are some posters out there who just want to stir things up, make a little noise, hear themselves talk. They usually offer nothing of evidence, don't ask particularly probing questions, and use words like "snake oil" and other silly words or phrases to scare people. There are also posters like Dizzy, who do a good job of offering CPAP advice, but fight hard to keep the discussion closed when it comes to options like pillar. They are a small, small minority.

Yet, here's the weird part. You know who was the most supportive when I decided to tailor my own "alternative" treatment? They were the diehards on this board, many of them really serious xPAPers, but the ones who were always intrigued by data, trial study, and new thoughts and approaches. People like Less Sleepy, Rested Gal, Frequenseeker, and I know I'm forgetting some of my other friends out there. They kept me motivated when it was hard to be motivated. They encouraged, they asked questions, and they said it was OK to go that route.

And, the masses that I think you think are ignoring you, are really probably a lot of people who are just trying to get their hands around their CPAP treatment and improve their own experience. For many of them, the cost, the time, and difficulty of trying a new therapy is worse than improving their current therapy.

To paint the picture of the negative ninnies out there (our guest above definitely included), I leave you with this literary reference which seems very appropriate:

Now, the Star-Bell Sneetches had bellies with stars.
The Plain-Belly Sneetches had none upon thars.

Those stars weren’t so big. They were really so small
You might think such a thing wouldn’t matter at all.

But, because they had stars, all the Star-Belly Sneetches
Would brag, “We’re the best kind of Sneetch on the beaches.”
With their snoots in the air, they would sniff and they’d snort
“We’ll have nothing to do with the Plain-Belly sort!”
And, whenever they met some, when they were out walking,
They’d hike right on past them without even talking.

When the Star-Belly children went out to play ball,
Could a Plain Belly get in the game? Not at all.
You only could play if your bellies had stars
And the Plain-Belly children had none upon thars.

[Billinseattle]

OK, since we are providing literary references, let me add an iconic statement.

"Can't we all just get along?" Rodney King 1993

B.

[Less Sleepy]

Actually, nobody can afford to be too dogmatic about all this. There just isn't enough science out there to support anybody's position.

I would think that the insurance companies would support some research into the efficacy of procedures, since it could have big potential for saving them a whole lot of money.

[Sleepy Stoboy]

Bill- idealistic and wonderful, but unfortunately it becomes necessary for us to defend our point of view. Let me ask if you could be so detached if every time you presented the facts from your MMA, some one came on and used terms like "snake oil" and accused you of being duped, even though you felt great. I know you'd respond in kind, so that if one more person could be helped by an MMA and it would give them their life back, you would be glad you took the time to respond.

Less Sleepy- I agree, with this exception. I feel great. After 20 years, I feel great. So while I don't have the medical proof and the clinical studies to ensure that this treatment will help everyone, I know it has the capability to help some who are interested. Being dogmatic is in the eye of the beholder. And this beholder has been seriously helped.

So, I think the Sneetches is appropriate for the Star Bellied types who feel their way is the only way. And perhaps that is just what Bill was getting at. We're all much more alike than we are different with this condition.

[Less Sleepy]

Your evidence is anecdotal. Anecdotal evidence can be very useful - it tells science where to investigate. Sleepy Stoboy, I hope you notice, I'm generally on your side in this!! Up to this particular post, I don't think you've been particularly dogmatic. Calling palatal pillar implants and dental devices "snake oil" is clearly being dogmatic, because there is evidence that these things work for some people.

We need scientists, now, to follow the anecdotal lead and gather some serious data in a systematic fashion. That is the only way we will persuade insurance companies to stop automatically paying for UPPP and just as automatically rejecting palatal pillar implants (can we call these PPIs?) and dental devices. Once the insurance companies stop automatically paying for UPPP (say, by requiring some justification in addition to the presence of OSA and some evidence that it will work in a particular case), doctors will stop automatically doing them. Furthermore, I believe doctors would like a little more science to guide them in selecting the best treatments for particular patients. I know my ENT was a little frustrated by the fact that it is very difficult at this point to determine who is likely to benefit from UPPP. He did tell me that I am unlikely to benefit.

[RickRed]

Stoboy,
First off, once again I want to thank you for all the help you've given me. I feel 100% better off CPAP than I ever did with CPAP. I have my life back, thanks to you and Paul.
I've ALWAYS appreciated your comments and this is the first time I think I disagree with something you said when you wrote:

[snork1]

my opinionated 2 cents.....

I THINK people get very defensive because there IS a lot of "snake oil" and people trying to take advantage of the handicapped (i.e. those suffering from OSA), and that would include the supposedly professional and "authorized" DME's and sleep docs taking advantage of their patients.

So many people are indeed going to have a defensive reaction. Unfortunately to the point of being closed off to even the possibility that SOME people might be lucky enough to have SOME alternatives work for them.

What is really sad though is the insurance companies that will not fund alternatives to CPAP...or even everything that people need for PROPER treatment by CPAP. Even though these alterantives COULD mean the insurance companies would be paying out a lot less money OVERALL if alternatives worked for some people.

I myself tend to be skeptical of "cures" that suddenly pop up and are being touted without a lot of research or statistical proof of them working. Unfortunately to get the stats, SOMEONE has to be the lab rat. I consider CPAP to be a primitive and stopgap measure until something better comes along. I myself look somewhat skeptically at the new approaches, but try to stay open and follow their progress and try to figure out WHY they work for some people and not for others and how that relates to MY OSA. I discussed pillars with an ENT And was told they would not help ME, sad to say. I feel lucky that I found an ENT that could do the procedure but was honest about my chances.

I am still investigating dental appliances and have mixed feelings for my case. Plus there is that "out of pocket" cost to TRY it.

Heck, I am even staying open to the possibility that the new Aveo TSD "tongue sucker" might be a valid device for some people, after I treated it extremely skeptically when it first showed up on the forums from New Zealand, out of the blue. The jury is still out on that one.

People fear change and fear the unknown. That is a simple fact.

If you are going to throw something new and not "commonly accepted" at the masses, then you better have a thick hide and learn not to take it personally when they respond with less than gracious questioning. Some of the great ideas throughout history had to buck some pretty tough static. On the other hand Barnum was right about "a sucker born every minute" and people will take advantage of that also.

Its all a fine line of balance....

[dizzy]

Sleepy Stoboy wrote: