Wean off CPAP?

I've been using my S9 Elite for 5 years now. I travel frequently (including a number of 14-hour flights in a year) and always have my CPAP with me. Can't exist without it. I just came off from a 5-day visit to a secondary city in Czech. I froze when I unpacked the first night and realized I left my CPAP power cord. I went through one night of very shallow sleep while I had to wait for an overnight delivery of an overpriced powercord. I knew I had no choice. It's a bit depressing, I hope we all can have a different lifestyle. I thank CPAP and all when I first started it; better sleep, more energy, etc. But it's a totally different lifestyle being dependent on a machine when you're still mid-40s.

I've been diagnosed with "Severe Obstructive Sleep Apnea with oxygen desaturations and a high arousal index." My split night sleep study indicated I had 120 OSA and 16 CSA (longest event at 32 seconds) over 80-minute observation.

I booked for an overdue sleep test next month (the last one I had was 3 years ago) and have prepared detailed set of questions after some research I've done. I want to consider surgery and other options on the table.

Apologies for the long background. My question to the forum is: Has anyone successfully weaned himself off CPAP? Either via surgery, medication, lifestyle/diet modifications, etc?

Sorry, those people cannot answer.
(Removes hat)

jcruz wrote:I've been using my S9 Elite for 5 years now. I travel frequently (including a number of 14-hour flights in a year) and always have my CPAP with me. Can't exist without it. I just came off from a 5-day visit to a secondary city in Czech. I froze when I unpacked the first night and realized I left my CPAP power cord. I went through one night of very shallow sleep while I had to wait for an overnight delivery of an overpriced powercord. I knew I had no choice. It's a bit depressing, I hope we all can have a different lifestyle. I thank CPAP and all when I first started it; better sleep, more energy, etc. But it's a totally different lifestyle being dependent on a machine when you're still mid-40s.

I've been diagnosed with "Severe Obstructive Sleep Apnea with oxygen desaturations and a high arousal index." My split night sleep study indicated I had 120 OSA and 16 CSA (longest event at 32 seconds) over 80-minute observation.

I booked for an overdue sleep test next month (the last one I had was 3 years ago) and have prepared detailed set of questions after some research I've done. I want to consider surgery and other options on the table.

Apologies for the long background. My question to the forum is: Has anyone successfully weaned himself off CPAP? Either via surgery, medication, lifestyle/diet modifications, etc?

jcruz,

I am not anti surgery but my question to you is if cpap is working for you, why would you want to risk having an operation?

I haven't heard of people successfully weaning themselves off of cpap, particularly if they have the severity that you do.

49er

I wouldn't want to do the surgery and I am only 29. Way too many risks and the thought it could end up being way worse than before. But what do I know I just own a catering company.

One was cured, they had it all done. For every one that goes off XPAP in favor of other useless procedures, few gain good results, many times are lives are made worse, most go into De-Nile and Drown.

BTW, that one that thought he was cured, was found in bed after his heart attact, dead. The bad things about cures, they are few and far between, often fools can't tell the difference, until they gasp their last breath.

The good thing his wife has a "Lightly Used" CPAP to sell on Craigslist, probably it's a no data model, after all he didn't care. Jim

I was born tired. After a few scary events driving while drowsy, I decided to take control.

I started by working out, losing weight, eating better... I even started immunotherapy for allergies, thinking that was a contributor. Nothing helped, but I did lose 40 lbs, getting to a healthy BMI for my size, and I no longer require antihistamines to survive the seasons!

I bit the bullet and went in to a sleep doc. Oddly, they started me with the UPPP surgery before CPAP. I knew up front that the success rate for OSA is low; I think they told me 40% success rate. But I went through with it anyway, the reason is that I was having problems with a clear airway during the day (to the point where mouth breathing was labored, and the nose was NOT happening). Plus, to be honest... I was scared of the idea of CPAP. The docs said I had "textbook" (large) anatomy--very large tonsils, uvula, turbinates, with excess soft tissue in my trachea and a deviated septum. In a nutshell, the surgery fixed my daytime stuffiness (I don't regret the surgery) but as far as nighttime stuff--4 years post surgery and my AHI is the same as before. I just traded OSA for hypopneas.

Disclaimer, my AHI was never as extreme as some folks. But I can still tell when I've (relative to me) had "bad" sleep.

jcruz wrote: Has anyone successfully weaned himself off CPAP? Either via surgery, medication, lifestyle/diet modifications, etc?

Medication...to my knowledge there are no medications at all that do anything at all for OSA.

Surgery...you won't likely find a surgical success story here...let's face it...this is a cpap help forum and we all pretty much use the cpap machines. If we had surgery and didn't need cpap anymore then there would be no reason to be here...would there?
We do get a lot of people that come here for cpap help who have had some sort of surgery to "fix" the OSA and either the fix offered short term relief or no relief at all.
Right now I don't know of any surgery that would offer someone with such severe OSA as you have enough of a reduction in apnea events to make it a viable option for you. They just don't have that good of a success rate at this time. Now new ways of trying to fix OSA using some sort of surgical method are being tried and I have no doubt that in 5 years someone will have thought of something entirely new to try...so there's always some remote possibility that in the future something may be tried that has a good success rate.

Lifestyle changes/diet....I have known of a few people who lost a large number of excess pounds (either through surgery or major dieting) who were able to leave the cpap machine but those were people whose OSA was primarily caused by the excess weight and no other causes. Not all OSA is caused by excess weight and if excess weight isn't the cause then losing the weight isn't going to help. I was a skinny minnie when I was diagnosed...no excess weight to speak of and while I do have a few more pounds on me now...losing those pounds isn't going to change the floppy airway tissues that I had even when I was a skinny minnie.
I won't even go into the cold hard fact of life that in most cases lost pounds tend to have a way of eventually finding their way back. Gotta keep it off and that's hard to do.

So IF (big IF) your OSA is caused by only excess pounds...there is a chance that losing those pounds AND KEEPING them off could mean that you could lose the cpap machine but there's no guarantee that it would enable you to lose the machine. It all depends on the root cause of the apnea.
Lots of skinny people have OSA....so excess pounds isn't the only cause. For some it might be a combination of size of the airway and general airway tissue patency and not have anything to do with extra pounds elsewhere on the body.

For anyone who does lose a lot of weight and hopes to be able to lose the cpap...have a follow up sleep study to make sure the weight loss did the trick. There's no guarantee that weight loss alone will fix the floppy airway tissues.

And the likelihood of excess weight staying off is quite low.
Just walk through Wal-Mart.

The only surgery that is guaranteed to work is a tracheotomy. It was what my ENT doctor wanted to do when I was first diagnosed many years ago. But it has it's own list of major risks and complications. Today, it is not often recommended for apnea patients.

If cpap works well for you, then you're one of the lucky ones. Many are still working towards that goal. The masks and machines keep getting better - less intrusive, quieter, smaller, more comfortable, more effective. Is cpap such a big price to pay for the improvement in your life?

chunkyfrog wrote:And the likelihood of excess weight staying off is quite low.
Just walk through Wal-Mart.

OMG that's my problem. I go to Walmart too often and it's catching. I knew there was another reason (besides the screaming kids) that I shouldn't be going there.

yaconsult wrote:The only surgery that is guaranteed to work is a tracheotomy. It was what my ENT doctor wanted to do when I was first diagnosed many years ago. But it has it's own list of major risks and complications. Today, it is not often recommended for apnea patients.

If cpap works well for you, then you're one of the lucky ones. Many are still working towards that goal. The masks and machines keep getting better - less intrusive, quieter, smaller, more comfortable, more effective. Is cpap such a big price to pay for the improvement in your life?

Hmm, if nothing else works for patients with sleep apnea, a tracheotomy is their only choice. On a forum that is no longer active, there were member who came to that decision who seemed to be doing well.

And Mack Jones, a neurologist, has one:

http://www.amazon.com/gp/product/059552 ... =8-1-fkmr1

49er

Pugsy wrote:

chunkyfrog wrote:And the likelihood of excess weight staying off is quite low.
Just walk through Wal-Mart.

OMG that's my problem. I go to Walmart too often and it's catching. I knew there was another reason (besides the screaming kids) that I shouldn't be going there.

Wrong, it is Dunkin Donuts that is the problem. . They have this square pastry with chocolate icing and peanut butter filling that I can't resist. Last time I had one was right before my appointment with my cardiologist. .

49er

The worst thing about Walmart's image, their customer base is Americans, it gives them a bad image. Jim

49er wrote:Wrong, it is Dunkin Donuts that is the problem. . They have this square pastry with chocolate icing and peanut butter filling that I can't resist.

I guess one of the "advantages" to living in the boonies and the closest town has a population of about 6 K on a good day and our Walmart is a "mini" ..it's open 24 hours but with smaller selection of items...like they don't carry my RC soda. So we don't have a Dunkin Donuts anywhere around here.
We used to have a Krispy Kreme truck route stop but I guess I wasn't buying enough of them and they quit.

What I do have now that is my downfall is a local mom and pop bakery/tea cafe that is run by a woman who has become a really good friend. Awesome pastries and food all homemade. I try to stick to once a week and only one or two treats for the week. She doesn't do donuts though...what she makes is even more rich.

jcruz wrote:I've been using my S9 Elite for 5 years now. I travel frequently (including a number of 14-hour flights in a year) and always have my CPAP with me. Can't exist without it. I just came off from a 5-day visit to a secondary city in Czech. I froze when I unpacked the first night and realized I left my CPAP power cord. I went through one night of very shallow sleep while I had to wait for an overnight delivery of an overpriced powercord. I knew I had no choice. It's a bit depressing, I hope we all can have a different lifestyle. I thank CPAP and all when I first started it; better sleep, more energy, etc. But it's a totally different lifestyle being dependent on a machine when you're still mid-40s.

I've been diagnosed with "Severe Obstructive Sleep Apnea with oxygen desaturations and a high arousal index." My split night sleep study indicated I had 120 OSA and 16 CSA (longest event at 32 seconds) over 80-minute observation.

I booked for an overdue sleep test next month (the last one I had was 3 years ago) and have prepared detailed set of questions after some research I've done. I want to consider surgery and other options on the table.

Apologies for the long background. My question to the forum is: Has anyone successfully weaned himself off CPAP? Either via surgery, medication, lifestyle/diet modifications, etc?

First of all, you need to analyze the cause of the OSA. For many, the probability is that the OSA caused the weight gain. And, losing the weight doesn't get rid of the OSA. Some have "claimed" to have lost enough weight (in whatever ways) that they no longer feel it necessary to use XPAP therapy. Only time will tell in those cases. Many times we see people trying to sell their XPAP devices on the forum and claiming that it either didn't "work" for them or they've convinced themselves that they no longer have OSA because they lost 20 lbs. or something silly like that. Many of them are living in major denial.

The statistics bear this out, but for most who have had "surgery" (particularly UPPP), the benefits are only temporary (maybe 6 months or so), the OSA comes back and still requires XPAP therapy and sometimes at even higher pressures. And, the pain and lifestyle changes are also a big negative factor. The bad thing with surgery, is once the tissue is removed, it can't be replaced. It's a short-term fix to a long-term problem which is usually not solved.

Some surgery like on turbinates and septum can help people breathe better, but may not help the person get off therapy.

From 10 1/2 years of reading this forum and about the people reporting the results of their surgeries, I would NEVER advocate having it done.......with the presumption that the user will get off XPAP therapy. The vast majority of them regret it sooner or later and wish they'd have been more diligent at optimizing their therapy.

If you don't believe me, go up to the forum Search line and put in "UPPP" (or other word options) and start reading.

Oh, and I'm sure I don't have to tell you now.......but, the next time you take a trip.......make sure you pack at least ONE of EVERYTHING.


Den

.