Goodbye CPAP Two

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Kenv
Posts: 139
Joined: Sun Nov 06, 2005 4:09 pm

Goodbye CPAP Two

Post by Kenv » Sun Nov 06, 2005 9:44 pm

Well I don't know what I expected from my post on this but certainly not the rubbish I've just been reading.
This device has been on sale here in New Zealand for only 4 weeks. It was developed here and has been tested in several countries including the USA where it has received FDA approval.
The website for this device is http://www.aveosleep.com and it can be purchased from http://www.ebos.co.nz but I believe it is also sold in the USA.
I really don't care a hoot whether you believe me or not - I thought I was doing a service. If you're so happy with a CPAP machine just go on using it. When you get problems with your nasal passages as I have you may think differently.
I will not comment further, if you're not interested - go suck!
Ken


Guest

Post by Guest » Sun Nov 06, 2005 10:45 pm

You are a snake oil salesman!!! You come here touting a replacement for cpap, and state "FDA APPROVED" YOU forget to mention that it isn't approved for OSA, its approved for SNORING!!!
Where Snoring is the Health Warning , the FDA approval is for this Warning


Additionally, the only study on this device indicates
The results of this small pilot study indicate that the TSD may be effective in reducing snoring severity and microarousals, with favorable trends for reducing SDB severity in selected individuals. Additional larger prospective studies are required to identify suitable candidates for TSD use in the treatment of snoring and SDB.


http://www.thieme-connect.de/DOI/DOI?10 ... 2002-32320

So, even the good doc that invented it only says it can reduce the severity. So where exactly is the cure?


Guest

Post by Guest » Sun Nov 06, 2005 11:05 pm

Guest this is Severeena, I cannot log in for some reason.

The FDA takes its good old time in allowing anything to be accepted for use or even medications that we need.

I am glad you did your home work on this.

Sharon

Guest

Post by Guest » Sun Nov 06, 2005 11:08 pm

Anonymous wrote:Guest this is Severeena, I cannot log in for some reason.

The FDA takes its good old time in allowing anything to be accepted for use or even medications that we need.

I am glad you did your home work on this.

Sharon
In this case that would be a good thing. The initial study shows it only effective for snoring, and might help sdb...

Also, this is not new, its also known as the daddy dummy (daddy pacifier)

Sleepless on LI
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Post by Sleepless on LI » Mon Nov 07, 2005 5:59 am

Ken,

I went back and read the first post you wrote. May I just make a suggestion FOR YOUR SAKE? Get a PSG done with no CPAP and your mouthpiece just to make sure you are not endangering your health if you are still having a lot of events or maybe oxygen desats.

I just recently came off the CPAP machine, but not before doing two things: Seeing how many events I had a the least amount of pressure, 4 cms., the lowest my machine can go, and it was in the 1 AHI range for just over a week, and then doing an overnight pulse oximetry test to make sure I wasn't desaturating without the machine.

You have to be sure you are not putting your health at risk. If you are feeling great, that is a wonderful thing and you may have been one of the lucky ones. If so, congratulations. That's wonderful. But I don't see something like this being a cure for everyone, especially with severe apnea or critical oxygen desaturations.

Let everyone know if you do go back for a study. Those results can turn a lot of naysayers into believers or perhaps do just the opposite in your own mind. Good luck.

L o R i
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sleepyred
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Thanks

Post by sleepyred » Mon Nov 07, 2005 6:03 am

Thanks Lori! You always have wise responses!

Sleepred

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Additional Comments: Aussie Heated hose for rain out/PapCap Headgear and chin strap

Sleepless on LI
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Re: Thanks

Post by Sleepless on LI » Mon Nov 07, 2005 6:19 am

sleepyred wrote:Thanks Lori! You always have wise responses!

Sleepred
Thanks. I don't know about "always," but it made sense to me this time. I think usually I miss the point that everyone else sees. I just don't see why we should jump all over this guy when all he was trying to do is put the word out there for us on what he thinks is working for him. Can't blame a guy for trying, can you?
L o R i
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Kenv
Posts: 139
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Post by Kenv » Mon Nov 07, 2005 4:12 pm

Thanks Lori, the only decent response I've had. All I can tell you is that I have used a CPAP for over 3 years and even then I had some problems with fatigue. Since starting to use this device I have had the clearest head I have had in years. I have no need to get checked out , I feel great. The thing really works for me. I have had big problems with CPAP - it caused me a lot of Rhinitis for which I used Alanase 100 every day - I then started to have problems with my nasal passages - I think from using Alanase. This thing came along and I bought one as soon as I could - it took me two or three days to get used to it and since then I haven't looked back. I will never willingly use a CPAP machine again. Its not expensive either so why not give the thing a go - you may be surprised.
Thanks again
Ken


Sleepless on LI
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Post by Sleepless on LI » Mon Nov 07, 2005 4:21 pm

Ken,

I am off CPAP as of last week. It turned out, my AHI was ridiculously low even on 4 cms (titrated to 10) and I did an overnight pulse oximetry test to make sure I wasn't still desaturating, and I wasn't. If you read my threads (don't want to be boring to everyone and repeat my saga), you'll see what was happening. But a quick recap was, my AHI was never high enough for CPAP, but they put me on for oxygen desat. reasons. I lost 18 of the 20-25 lbs. I needed to lose and had no anatomical reason, according to my ENT, to have OSA except maybe a little extra weight that I never had before in all my years. So fortunate for me, I am off.

I think most of the people on this site are skeptics. It's hard to believe that there are alternatives to therapy because I don't think other things usually end up working for the average person. You have to have an unusal circumstance or just not be the average OSA sufferer.

I think if we go by how you feel, kudos! Lots of luck. I am so happy for you that you are finally feeling well. Isn't that the whole idea of using the CPAP machine, is to feel well? If you felt like this, there probably never would have been a need to go for a PSG because you wouldn't have suspected you had OSA. The reason I suggested another PSG was to be safe and make sure that you don't end up with any further health problems down the road if this really isn't stopping your events. But if you feel this well, that's great and maybe you are one of the lucky ones. I certainly hope so for you sake.

Please check in and let me know how you're doing in another week or two. And I'll keep my fingers crossed that your new found energy remains. Good luck. I'm very happy for you. Enjoy it!

L o R i
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Apneaat22
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Post by Apneaat22 » Mon Nov 07, 2005 5:32 pm

Hey Lori, if your really off the hose, can I have your Aura

Heh just kidding.

But your really done? I had read a post previous where you said you were off your mask for 3 days but I had assumed you were trying a different type of interface. Guess I didn't read enough into it. I am still catching up.

Congrats though, and this after you telling me I wouldn't be getting off my machine?

Apnea@22


Sleepless on LI
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Post by Sleepless on LI » Mon Nov 07, 2005 6:03 pm

Oh, A@22, you must read my saga. I can't go through it all again, but it's all in these threads, believe me.

I didn't say you would never (oh, no, a misinterpretation) get off the machine, but it's not common to do so and not to expect to, like I thought you were saying you did. I had very extenuating circumstances and started my therapy with an AHI under the criteria for going on therapy, but had a bit of a desaturation problem with my oxygen level in REM sleep. Told to lose weight, did (had about 20-25 lbs to lose, lost 18 lbs), starting a lot of cardio exercise, eating right, all the good stuff, and did some testing and, voila, no need for the machine anymore...SO FAR!

I do not want to get too happy yet. I've only been off now about a week, so I really want to wait and see how my energy level is in a month or two. But my AHI and my oxygen levels are normal, so there was no use in staying on a machine that made me wake up more at night and was starting to tire me when I really didn't need it and could sleep better, and feel better now, without it.

I am laughing because I am going into this long explanation after I said I couldn't. Well, what can I say? How are you doing with your therapy? Things going well, I hope? You are my newbie optimist. I love your attitude. Hoping it is still holding that way. Let me know how you are.

L o R i
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JimH
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Post by JimH » Mon Nov 07, 2005 8:22 pm

Congrats Lori for coming off the machine. Best of luck with it. I sure am envious of you. Lately, I don't feel its doing me much good anymore. I am feeling tired again, woke up to a charlie horse the other day and with the winter coming, the darn rainout is driving me up the bloody wall. I knwo to some extent I am still better off than without cause I don't feel nearly as bad as I did pre-CPAP, but not nearly as good as a few months ago. Unfortunately, I put on some more weight. That probably has a lot to do with it. My work hours are crazy and its hard to eat healthy. And no time for exercise. Anyway, keeps us all apprised of the progress!!!

Again, Congrats!!!

JimH


Sleepless on LI
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Post by Sleepless on LI » Mon Nov 07, 2005 8:31 pm

Jim,

Thank you very much. I have to say, that's how I was starting to feel, too. I was waking every single night, though, multiple times and it was starting to take its toll on me. I was never one of the fortunate ones for whom CPAP enabled them to sleep through the night. When I started, I felt a resurgence of energy and that allowed me to take control again, exercise, eat right, drink water, cut out the bad foods/drinks and get back into shape. But as time went on, I felt the tiredness come creeping back. My son was the one who finally suggested that maybe I don't need the therapy, which is ironic because he was the one who suggested I go for the sleep study, too. But he felt that if the therapy that was supposed to be helping me feel alive and energetic was actually now causing me to be more tired, and the fact that my AHI's were so low, that maybe I needed to look into stopping it if I could.

So here I am, waiting for my world to fall apart. Will it? I don't think so, but I won't get too excited yet. I will keep you all posted. Worse things could happen than having to go back on the machine, but it's really not my first choice.

L o R i
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Apneaat22
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Post by Apneaat22 » Tue Nov 08, 2005 7:25 am

Lori,

I am doing ok. I am in need of a new mask as I am starting to laugh everytime I write the name "Comfort" gel. It just isn't working for me. I am waiting eagerly for my Swift to come. Last night I had to just take the thing off after I woke up an hour in because it just wasn't working for me. I have not had the problem before so I think I just needed to get my adjustments set before I went to sleep. I had just taken the mask apart to clean it so all of my straps were set wrong.

I was not sure I was really feeling much improved until I woke up this morning and was reminded what it felt like before. Today will be a long day, but I'm sure my exhaustion will allow me to sleep tonight.

I think thats why I was sleeping through the uncomfortable mask the first few weeks, I was just so tired it didn't matter. Now that I am feeling a little more normal, I wake up at night and it feels like I have a stack of books on my nose, I have to have that mask so tight to keep from leaking.

All in all I say its going well, and once I get a new mask that works for me all will be well. I was contemplating trying to get a script for ambien or lunesta or something to help on my problem nights until I get more used to things. Though I guess by the time I would know its a problem night, it would be too late. Any opinions on this?

Thanks for your encouragement, you were one of the reasons I felt comfortable enough to write on this board.

Congrats on your success so far, I hope it keeps up. Then I can have your Aura right? haha j/k


Apnea@22


SLPYHED
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Post by SLPYHED » Tue Nov 08, 2005 8:23 am

Kenv, apologies for the "rubbish" response you received from me on your first post.

Having APNEA and INSOMNIA I have seen all of the snakeoil treatments on these boards. When doing a FDA check I could not find this product.

After seeing SO MANY people trying to sell things on this board I ASSUMED that you were in the same grouping as them.

If this is indeed a legitimate product and it has helped you then I must indeed apologize to you.

Please keep us posted on any developments in your treatment.

I will tip back a StienLager as my way of being apologetic.

Kirk (slpyhed)