12 years on cpap and it's time to move on.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
debtheveg
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Re: 12 years on cpap and it's time to move on.

Post by debtheveg » Tue Feb 21, 2012 7:30 am

Hi there Corky. Just want to wish you all the best with the device. I posted on here a few days ago asking if anyone has had any experience with this as I am at the very beginning of being considered for the Apnex stimulator. I think the whole of idea of it is very amazing and I'm hopeful of being able to take part in the trials.

I find it confusing and very odd how many people on this forum (not all) appear extremely negative about the idea of alternatives to CPAP. For those who are doing well with it, fine, but it would be nice if they were encouraging and supportive to those who wish to try new ideas or be involved in the development of better treatments.

Good luck to you and the others participating in the trials .....
Last edited by debtheveg on Tue Mar 06, 2012 11:14 pm, edited 1 time in total.

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49er
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Re: 12 years on cpap and it's time to move on.

Post by 49er » Tue Feb 21, 2012 7:53 am

Hi Deb,

As one who is not ready to give up on CPAP but who definitely has some concerns about whether it is the right treatment long term for various reason, I am definitely interested in hearing about alternatives and how you progress regarding the Apnex stimulator. I don't regret not going to the seminar on it because I don't think the severity of my apnea would have been enough to benefit.

However, I want to hear about all options no matter how crazy they sound. And before anyone says, well, cpap works as it is the gold standard treatment, here is my response. Hawaii works for most people also. However, if you found you had to take a sailboat to get there from Australia or California, you might feel differently about going there.

That is how navigating CPAP treatment feels. Until medical professionals understand that dealing with so many issues in a compromised cognitive state is extremely overwhelming and frustrating, cpap succes rates will continue to be low.

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Mary Z
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Re: 12 years on cpap and it's time to move on.

Post by Mary Z » Tue Feb 21, 2012 9:09 am

debtheveg wrote:I find it confusing and very odd how many people on this forum (not all) appear extremely negative about the idea of alternatives to CPAP. For those who are doing well with it, fine, but it would be nice if they were encouraging and supportive to those who wish to try new ideas or be involved in the development of better treatments.
....
Considering how many machines end up in the closet anything that may help those intolerant of 'PAP has got to be a good thing. I think it's in our best interest to support research into any device that will treat sleep apnea. These are well conducted research studies with plenty of nights in the lab to determine and fine tune effectiveness. It's a legitimate research project. What if they had invented 'PAP and stopped before developing Bilevel, AUTO, or ASV? Even if the device only reduces pressure needs for some people it may be enough to enhance compliance with 'PAP. Thank goodness for pioneers.

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Re: 12 years on cpap and it's time to move on.

Post by Guest » Tue Feb 21, 2012 10:41 am

Go see the Dr's in the morning. Things seem to be healing well. I'll fill everyone in on what they say. Thanks, Corky

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Arizona-Willie
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Re: 12 years on cpap and it's time to move on.

Post by Arizona-Willie » Tue Feb 21, 2012 10:56 am

Just looked at the site.

It is somewhat like a tens unit or a pacemaker.

But, it only sends the shock to the nerve AFTER your breathing is obstructed and does ( apparently ) nothing for central apneas since they are not caused by the airway collapsing. Hypopneas would be ignored also.

Might be good for some people but I would think using a *pap machine would be easier than going through surgery.
And, can they remove it if it doesn't work for you?

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Mary Z
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Re: 12 years on cpap and it's time to move on.

Post by Mary Z » Tue Feb 21, 2012 11:30 am

The unit sends a constant current, it does not respond to events. The current needs to be titrated in the lab.
I have a deep brain stimulator for essential tremor (same as used in Parkinsons) and the battery/programmer can be turned off at night.

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corky
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Re: 12 years on cpap and it's time to move on.

Post by corky » Tue Feb 21, 2012 11:47 am

Unit is only on at night. I'm told battery will last 10 to 12 years. Vs. 5 to 6 years for devices that are on 24/7 .

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Cereal Killer
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Re: 12 years on cpap and it's time to move on.

Post by Cereal Killer » Tue Feb 21, 2012 11:50 am

Mary Z wrote:The unit sends a constant current, it does not respond to events.

Half wrong, half right. Check the latest info on Inspire's website.

The device sends an intermittent current at the appropriate time during the breathing cycle.

The device does not respond to events. It sends the current on each breathing cycle.

Originally Inspire Medical was programming the device to respond to events. Apparently this was a failure and they now titrate the device to give a jolt to the nerve on each breathing cycle.

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Cereal Killer
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Re: 12 years on cpap and it's time to move on.

Post by Cereal Killer » Tue Feb 21, 2012 11:51 am

corky wrote:12 years on cpap has come to a end ( I hope).
I bet you never had CPAP software and got a really good CPAP therapy.

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chunkyfrog
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Re: 12 years on cpap and it's time to move on.

Post by chunkyfrog » Tue Feb 21, 2012 12:17 pm

Just a thought: a pacemaker for central apnea would probably have to link to the nerves controlling chest muscles,
and be programmed to work when normal breathing stops due to a central event.
The next step?

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corky
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Re: 12 years on cpap and it's time to move on.

Post by corky » Tue Feb 21, 2012 12:22 pm

About my study at M.U.S.C. http://www.musc.edu/pr/apnea.htm.

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Starlette
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Re: 12 years on cpap and it's time to move on.

Post by Starlette » Tue Feb 21, 2012 12:53 pm

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corky
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Re: 12 years on cpap and it's time to move on.

Post by corky » Tue Feb 21, 2012 1:08 pm

Thanks.. BTW.. what time is the fox show tonight?

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NightMonkey
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Re: 12 years on cpap and it's time to move on.

Post by NightMonkey » Tue Feb 21, 2012 1:14 pm

corky wrote:Thanks.. BTW.. what time is the fox show tonight?

Seems to be the local Fox affiliate in Denver, http://kdvr.com/2012/02/21/sleep-week-p ... -at-night/

Check their website tomorrow. Maybe they will post the segment.

Did you manage your CPAP therapy with the software?
Cereal Killer wrote:
corky wrote:12 years on cpap has come to a end ( I hope).
I bet you never had CPAP software and got a really good CPAP therapy.
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corky
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Re: 12 years on cpap and it's time to move on.

Post by corky » Tue Feb 21, 2012 1:48 pm

I did.