Goodbye CPAP Two

Guest,

True that it hasn't been tested yet, but Ken feels great. Does that not count for anything? And unless I am mistaken, one of the big signals that goes off when you have OSA is LACK OF ENERGY, which seems to have been eliminated with Ken'use of this device. Try to look at it this way: Could you keep an open mind to things that haven't been tested and confirmed yet? You may be surprised that maybe some of these things can work. As far as the bridge you have to sell, on the other hand, I don't think you'll find very many takers here. We are not all a bunch of naive jerks as your eloquent analogy implies that people who are behind Ken are. We don't all have to doubt something without the proof yet that it can't work. Maybe it does and maybe it doesn't. But it hasn't been proven one way or another yet.

And, just an aside, but why is it every time a less that polite comment is made it is always by someone "identified" as "guest"?

Sleepless on LI wrote:Guest,

True that it hasn't been tested yet, but Ken feels great. Does that not count for anything? And unless I am mistaken, one of the big signals that goes off when you have OSA is LACK OF ENERGY, which seems to have been eliminated with Ken'use of this device. Try to look at it this way: Could you keep an open mind to things that haven't been tested and confirmed yet? You may be surprised that maybe some of these things can work. As far as the bridge you have to sell, on the other hand, I don't think you'll find very many takers here. We are not all a bunch of naive jerks as your eloquent analogy implies that people who are behind Ken are. We don't all have to doubt something without the proof yet that it can't work. Maybe it does and maybe it doesn't. But it hasn't been proven one way or another yet.

And, just an aside, but why is it every time a less that polite comment is made it is always by someone "identified" as "guest"?

You can keep an open mind, you don't have SLEEP APNEA! The rest of us HAVE sleep apnea, and if we don't treat it properly, will negatively effect our health. And we ABSOLUTELY have to doubt that which is unproven, as it is our lives that are at stake. Because it isn't proven is EXACTLY the reason that it needs to be questioned HIGHLY. There is a difference between an open mind, and blindly thinking that you are treating a life threatening illness.

Try to look at it this way, your support of an unproven product might lead to someones early demise. Do you think you could live with that?

First of all, YES, I did have sleep apnea and all the trimmings. I, however, did what I personally needed to do and was able to stop the therapy. So please don't take that attitude with me. I take extreme offense to you speaking to me as if I haven't been there and done it all. I have, thank you very much. Because I was lucky enough to be one of the people who have eliminated the need for it doesn't give you the right to speak to me as if I know nothing about the illness or what is associated with it. Very poor assumption on your part. I know all about having studies, being diagnosed, learned all about the different methods of treatment, equipment and what was necessary to do to help myself, so much so I was taken off the machine. I do not think you know me if you can say what you did. Very offensive.

Second of all, no one is ENDORSING this product or offering it as a cure. So it won't be on my head, as you'd like to place it, if someone uses it and ends up DYING from it. Aren't you getting a bit melodramatic? My point to you was to not shut the door on things that haven't been proven NOT to work yet. And, yes, I do know what it feels like to suffer from OSA. So please don't think you're talking to someone who doesn't have a clue. Once again, it's been lovely, G U E S T...and I'm not afraid to put my name or my face to my viewpoints.

Sleepless on LI wrote:
.... And, just an aside, but why is it every time a less that polite comment is made it is always by someone "identified" as "guest"?

Here I am again, in defense of guests.
Does it really make all that much difference if the comment comes from a guest or a member? This is a discussion board. We discuss. We do not always agree, but we discuss. We don't all discuss the same way. We are not all the same person.


But there is one distinct difference in this kind of discussion board -- it's about a serious health issue. A SERIOUS HEALTH ISSUE. Sleep apnea is already one of the most MISUNDERSTOOD health issues around. There is so much confusion out there by people who are not yet diagnosed or started on therapy. There is nothing wrong with something unproven working for someone and they continue to use it. But, I would not want to see people out there get the mistaken impression that cpap therapy is so inconsequential that it can be dropped in the trash can like yesterday's newspaper, to not try it because they trust in something unproven. It's one thing to congratulate someone's unusual success, but do not give the impression people should run out, toss their cpap machines in the garbage, and buy some unproven therapy.

You don't recommend a diabetic to give up their insulin if you think there's some other funky solution out there.

You don't say "oh stop your chemo therapy, I heard there's an herb in Mexico you should try instead."

My point is, we should be here encouraging people to get the most reliable therapy around, that is proven to help and not harm. You may not have intended to endorse, but the impression can have consequences. My thought is that anyone is certainly welcome to try anything at their own risk and certainly talk about it, but not at the price of turning away people from getting the proven therapy they deserve. There was nothing melodramatic about the guest. The guest is passionate about people getting treatment for what is a life-threatening health condition. We, guests and members alike, tend to get a little emotional if we think even one person might turn away from the care they need.


Linda, stepping down from soap box

Hi All, I didn't realize there had been so many posts about this. When I had my nose punched a couple of times I stayed away until I got a private message this morning from Kirk.
I'll answer some of your queries.
I was diagnosed with OSA a little over 3 years ago. The original pressure I was on was 8.5cm H20 - this year I was checked again and they put my pressure up to 11cm H20. If I tried to sleep without the machine I used to get violent apneas as I was drifting off, two or three, then I would go to sleep. Since using the TSD I have not had one of these apneas. I feel just as good using the TSD as when I'm on the machine. If I didn't use the machine before this I would be incredibly tired all day.
People keep saying the TSD is not tested - maybe you should read the website properly http://www.aveosleep.com. The guy who developed this started work on it 8 years ago - he is a Dental Surgeon from Dunedin in the South Island - he specialized in Sleep Medicine and was the designer of a mask for CPAP. The device has been tested for five years, in this country and in the USA. According the the website it HAS been granted FDA Approval.
I first heard of it on our National News TV broadcast and waited for two months for its introduction. I admit I was sceptical but the thing has worked for me.
For those who think it must be aweful because it holds your tongue forward - it really is not a problem. I found I needed to have my tongue as far forward as possible. There is some squeezing pressure on the tongue because of the suction but it soon becomes comfortable. Its like sleeping with a babies dummy in the mouth. It took me 3 days to get used to it but it got better as I learned to create maximum suction. I repeat this is not uncomfortable, a little at first but you soon get used to it.
This device will not suit everyone - the website says that in tests that it was 90% successful.
I am grateful that this device has worked for me because I had a really miserable time with the Cpap - compared to that this is bliss!
I will now reply to any further queries which come up.
Regards Ken

Linda,

I don't disagree with one thing you said in your post. However, just because something is not proven effective YET, and maybe it won't be, isn't a reason to compare it to selling someone a bridge, insinuating anyone who would believe it COULD work is a naive fool.

I am the first person to tell people to stick with their CPAP therapy. It was what worked for me. But I will not shut my eyes to something that might work for someone else just because it hasn't been tested and proven yet or because it is not the most popular or suggested route to go. I was the first one to suggest to Ken at the start of this thread that he go for a new PSG with the device to make sure he was "cured." Most people, myself included, wouldn't think that there are instances, short of incredibly successful surgery or an obese person losing their weight, that would allow someone to get off the machine, yet I was able to. I would have been skeptical about that, too. And I was!!! But here I am, off the machine.

And my point about guests was, it seems that when people say things that aren't polite, which is how I took that comment about people not finding fault with what Ken was doing and comparing us to people to whom you could swindle into buying a bridge, not to mention telling me I don't have OSA, it always seems to come with the tag "guest" attached. I don't understand why people who feel so passionately about something are reluctant to identify themselves. I have no problem with a comment coming from a guest. I was just noting an observation that the rudest comments I've ever seen on this site seem to come from those unidentified "guests." My mother always taught me to be on my best behavior when I was a guest somewhere. Doesn't seem to hold true on this site, though.

And do you find it particularly kind that this "guest" seemed to throw in my face that I don't have SA? Was that a relevant comment to make? That was rude. It was also an insinuation that I know not of which I speak because I no longer suffer from it. That was my point in my other thread before, saying most people don't want to hear what I have to say anymore because I no longer have the illness. I just proved my point. I should just walk away if most people are going to agree with someone like this.

Sorry, it wasn't Kirk I got the Private Message from, it was Stryker.
Ken

Note - The aveoTSD is a first line treatment for SDB. Where Snoring is the Health Warning , the FDA approval is for this Warning.

SNORING NOT OSA!!

Yet a search of the FDA database comes up empty. If you are going to say that it is approved at least be honest about the approval. It is NOT for Sleep Apnea and you are either trying to sell the thing, or actually believe that its "cured" you. I hope its the former and not the latter as you are potentially jepordizing your health by using a device for snoring to treat sleep apnea.

Guest, please buy 10 of these devices and put one on each finger so you can't type.

Please!

And when you slap Lori in the face it is inadvertantly felt by us ALL. She has done NOTHING but help hundreds of people on this board including me.

Please be nice, or my Karma will run over your Dogma.

Kirk
Slpyhed

SLPYHED wrote:Guest, please buy 10 of these devices and put one on each finger so you can't type.

Please!

And when you slap Lori in the face it is inadvertantly felt by us ALL. She has done NOTHING but help hundreds of people on this board including me.

Please be nice, or my Karma will run over your Dogma.

Kirk
Slpyhed

Thank you, Kirk. I'm fine, just a bit ruffled. I appreciate your support a lot!

Sleepless on LI wrote: .....
And do you find it particularly kind that this "guest" seemed to throw in my face that I don't have SA? Was that a relevant comment to make? That was rude. It was also an insinuation that I know not of which I speak because I no longer suffer from it. That was my point in my other thread before, saying most people don't want to hear what I have to say anymore because I no longer have the illness. I just proved my point. I should just walk away if most people are going to agree with someone like this.

There's no reason for anyone to "just walk away." Everyone can contribute something, and you've contributed lots. And you should be grateful you don't have OSA. Noone wants OSA, or at least not anyone I know. But just remember, you say lots, and people look up to you, like you, listen to you. You are in a position to really do good. Unlike me, who noone listens to. But remember too, this forum is made up of FAR MORE non-posting visitors than there are members and posting guests. So many people visit just to read, many wondering, scared, if they might have sleep apnea. They're looking to our discussions for advice. We're not medical people, we're a discussion board. But what we say about sleep apnea is read by a lot of people. This board reaches LOTS of people. All I'm saying is let's not mis-direct people who desparately need help. People are watching, looking for others who also have this condition. I remember what it's like, desparately looking for other people who shared this condition.

As to rudeness. Rudeness can be rudeness. But sometimes rudeness is in the eye of the beholder. I say get over it or ignor it. I suppose I'm being rude by the things I am saying. Give us all a break. We're suffering from sleep apnea here. We have reason to get a little snippy from time to time. I have a friend who told me today he's been diagnosed with bone cancer. Now HE has something to be snippy about, don't you think? And news like that tends to make me a little snippy too. There's no reason to leave, Lori. Just be tolerant of the rest of us who have more than a few reasons for being rude. It doesn't change my opinion of you, I'm happy for you. You don't have sleep apnea. Rejoice in that!


Linda

Anonymous wrote:

Note - The aveoTSD is a first line treatment for SDB. Where Snoring is the Health Warning , the FDA approval is for this Warning.

SNORING NOT OSA!!

Yet a search of the FDA database comes up empty. If you are going to say that it is approved at least be honest about the approval. It is NOT for Sleep Apnea and you are either trying to sell the thing, or actually believe that its "cured" you. I hope its the former and not the latter as you are potentially jepordizing your health by using a device for snoring to treat sleep apnea.

I do wish you would listen! I am saying that the Website says that it has FDA approval - if that is not correct then so be it - I haven't checked FDA myself and I have no intention of doing so. I am going by one thing and one thing only. IT WORKS FOR ME!!!!!!!!!
That is all I can say and I say it again - IT WORKS FOR ME! and I don't give a monkey's toss whether or not you believe me - Gee some of you guys really suck!
Ken

Different strokes for different folks.



Not that long ago that CPAP was just a glorified Dirt Devil.

But we all know that CPAP works for most. That's why this is CPAPtalk, not TONGUESUCTIONtalk, or BOILANDBITEchat.... not that these other doo-dads don't work for some, because they clearly do. Nothing wrong with that.

Just my .02

http://www.sleepnet.com/apnea18/messages/399.html

John,
Usually, dental devices only work on very marginal SDB or sleep disordered breathing, and even then not very well.
I have a good story to share with you. We had diagnosed a dentist with obstructive sleep disordered breathing. His SDB index was in the high twenties. He had decided to try a type of dental device that worked by mandibular advancement. He wore this device religiously for several months, reporting that he felt a little better during the day.
During his follow-up sleep study, his dental device was in place, and his SDB index was actually higher than his original study perfomed without any treatment. Upon learning this, he decided to give NCPAP a try.
His dental assitant whom had worked with him for over 15 years phoned to thank us. She had told us that she has seen a marked change in her boss. stateing that he doesn't fall asleep at his desk anymore. He now wont sleep without the device.
Anyway, try dental devices if you would like. If your SDB index is higher than 10/hour, you probably wont be cured. Many different devices can be tryed, stand alone mandibular advancment devices, mandibular devices that are sugically inplanted, TRD's or Tongue Restraining Devices etc. All of these work on the premice that moving some of the tissue that is blocking the airway, out of the way, should improve obstructive breathing. They do, but very marginally. If you still have the events, then you will still have the systemic effects from said events. Sleepiness, systemic hypertension, headaches and possibly right side heart failure.
If complied with, NCPAP resolves the problem.
Good luck.

For OSA: (n=304) Reports all showed statistically significant improvement in average AHI. There were no consistent differences between types of devices. Of 271 cases, AHI pre treatment averaged 42.6; post: 18.8, with an average reduction of 56%. Degree of improvement varied, but 70% of patients experienced at least a 50% reduction in AHI, but some patients had no reduction, or became worse. 8/9 studies reported modest improvements in oxygenation. Treatment success depended on initial AHI, in 3 studies. Two studies suggested that success is unlikely with AHI over 50-60, but there have been case reports of exceptions. Tongue restraining devices have a similar effect on apnea and oxygenation, compared to other oral appliances. Predictors of success: body weight < 125% ideal, AHI twice as high supine compared to laterally. Tongue-restraining devices may be a useful adjunct to failed UPPP surgery, in some reports.

Feeling better isn't always a good indicator. Even if you are getting a 56% improvement and your ahi matched the above example, you would still need CPAP therapy. Ken, if you can't afford a sleep study, at least make sure that your O2 isn't dropping. An overnight Pulse Oximetry Test will at least let you know if you are desating. You are only cheating yourself, and your loved ones if you are not getting good therapy.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, AHI

Mikesus - thankyou for that information. I must admit that for me how I feel is important but I take on board your warning that not all may be well. I am seeing my specialist on the 25th of this month and I will discuss it with him - however the problems I have had with the CPAP would probably make me stick to the TSD in any case. I am almost 72 and have other health problems so that I don't think I will be around for ages anyway. I understand that the guy who designed the TSB had a lot of experience with other oral devices held by the teeth - my understanding was this this device is much better. The testing that was done covered both Snoring and OSA and far as I know so the 90 percent success rate may well cover both of these problems. I contacted the Sleep Clinic at my hospital last night and spoke to a Sleep Technician - she told me that she knows of three other people who have transferred over to the TSB. The bottom line for me really is how much energy I have during the day and the TSB seems to be doing a good job for me. Once again thanks for your input - nice to talk sense in a while.
Regards Ken