I Want OFF!!

[Sleeping With The Enemy]

I have been using CPAP since January 24, 2005. I have been compliant and I know it has helped me to get the sleep that I need.

I have severe OSA AHI 67.2. But I really want to get off this machine. I am my weight now is 210, I need to get down to 140 and the ENT thinks I have an excellent shot at getting off of this machine.

Has anyone, besides me--I've met one person, met anyone who has been successful at getting off of CPAP therapy?

I need to hear uplifting/encouraging stories, not just "you'll never get off of it"

Thanks,

Heidi

[I'mSewTired]

I have been using CPAP since January 24, 2005. I have been compliant and I know it has helped me to get the sleep that I need.

I have severe OSA AHI 67.2. But I really want to get off this machine. I am my weight now is 210, I need to get down to 140 and the ENT thinks I have an excellent shot at getting off of this machine.

Has anyone, besides me--I've met one person, met anyone who has been successful at getting off of CPAP therapy?

I need to hear uplifting/encouraging stories, not just "you'll never get off of it"

Thanks,

Heidi

I am not off. But, I was told that my apnea is much worst than my weight would lead one to think. My doctor felt my apena was more like a person over 100 pounds more than I weigh. I will guess that this means that I won't be able to get off. Sounds like have a shot at it!

[Someone in the field]

It's true that very few OSA patients ever "Get off it" the CPAP, that is. However, it is not impossible, at least not in theory. Many patients stop using CPAP for a variety of reasons including 'not emotionally accepting the mask and the idea of wearing it for the rest of their lives'. However, the alternative to not treating sleep apnea are heavily documented regardless of the severity of apnea, including decreased quality and quantity of life. Weight loss is a wonderful way to improve your apnea index and if not allow total freedom from CPAP may at least allow a adjustment of the pressure to a more comfortable level. Weight loss is a tremendous undertaking and very few patients are successful at loosing enough weight and keeping it off for the remainder of their lives. Keep in mind sleep apnea can and does get worse as we age and our muscle tone decreases so weight loss alone may help today but someday you may be handed an CPAP mask again. Oral surgery and dental appliance therapy should also be considered as another viable options for the CPAP intolerant patient. These options may also allow a reduction of CPAP pressure if not allow total freedom from the mask. Utilizing a combination of therapies such as weight loss, sleeping only on your side or with your head elevated along with an oral appliance or post oral surgery and/or with oxygen may improve your airway patency enough to allow more normalization of breathing and sleep efficacy and quality.
What ever you decide to do, adequate follow up and supportive care is essential to manage your condition. Speak to your sleep physician (not your primary care physician as they are usually not adequately trained in the management of sleep apnea or CPAP therapy) regarding your feelings toward CPAP and ask for options. Your sleep center, local medical equipment company and sleep apnea support groups should have resources to help you adjust and get the help you need.
Good luck and I hope you make it.

[ozij]

Has anyone, besides me--I've met one person, met anyone who has been successful at getting off of CPAP therapy?

I need to hear uplifting/encouraging stories, not just "you'll never get off of it"

Heidi,
I think those off CPAP are no longer posters on this forum - they no longer need it..... and they won't be here to tell you those uplifting/encouraging stories.

So don't get too upset if you don't find the answers you want here. It's kind of like expecting to get a recommendation for a good steak restaurant from a bunch of vegetarians....

Good luck in your quest, and I hope you'll find a weightloss support group as good a cpaptalk!

O.

[Sleepless on LI]

Ozij makes a strong point about the ex-CPAPers are probably not on this site anymore to tell you.

I have been given hope, however, by an ENT in early July who said even though my weight, which then I had to lose 25 lbs, now 11, was not considered obese, I had no anatomical reason for having OSA and he thought if I lost this weight that my body was not used to carrying its whole life, that I may be able to say goodbye to the machine. I do not have a bad case of apnea to begin with, so I don't know if that matters or not. My only concern after thinking about him not seeing anything anatomical to cause OSA is that perhaps I have the central apnea type, which means it's chemically induced from my brain. Wouldn't be hard to believe since I had a problem with my brain triggering irregular and rapid heartbeats my whole life that was finally corrected in November of 2001. So maybe the apnea comes from that; in which case, I will be a lifer.

I will just end this post by saying, please try to remember that this is not the worst thing you could have been diagnosed with. Yes, it doesn't lend itself to the optimal sleeping conditions, but it's not a death sentence unless you don't comply. I think looking at it from the other viewpoint is far more beneficial to your mental health than being upset over it, not to mention the physical rewards, too, when you are compliant.

[rock and roll]

If nothing else come of this, if it inspires you to lose the weight you need to lose, you will get tremendous health benefits from just that. Try it and then let us know if getting off the machine is a true option.

[skinnysleepapnea]

The reason I'm called skinnysleepapnea is that, in an effort to cure sleep apnea and high blood pressure, I lost 80 lbs. (from 250-170). Of that I kept 60 off for several years, and still have them off. Did it help my sleep pattern any? Sorry. It didn't. It might help you, though, and certainly is worthwhile thing to do on its own.
In any case, be very careful about the weight loss. I had lost it several times, and each time regained it all and then some.
This time that I was successful, I put in place a firm program for keeping it off (lots of self-observation and correction, also water drinking, bringing food home from resturants for later meals rather than stuffing my face right there, using exercise as much as possible as a weight loss mechanism, rather than dieting... indeed, I never go on a diet for more than a few days that I can't comfortably maintain for the rest of my life... therefore, I virtually don't diet.
I try to eat my heavest meal at breakfast and eat less as the day progresses, to a light, light dinner.
And lastly, if you can learn to maintain your weight from one week to the next, you can learn to loose 1 or 2 pounds a week, which is plenty and amounts to a lot in the course of a year.

[SnoreNoMore2005]

I haven't seen any numbers on it but it seems like a large percentage of people with OSA also happen to be overweight. Coincidence? I know five people with OSA and all of them are at least 40 lbs overweight.

I have read a survey where most overweight people with OSA say that losing weight does significantly reduce their OSA symptoms so there must be some type of connection between weight and OSA.

However, I'm 6'1", 190 lbs and a little on the thin side and I have OSA... so I wouldn't bet on weight loss being a cure for OSA.

SnoreNoMore2005