Long Time Users: Have You Ever........

STOPPED using your XPAP for a prolonged period of time to see if you STILL needed it?

I've been on XPAP for a year now, my AHI average is <6, and I know that I still need to use it everynight. However, I've read in several posts of people with an AHI of <1 who are STILL using their XPAP. Do you really need therapy at that point??? Personally, if I ever get my (long term) average AHI down to <2, I'd try to go without therapy to see if I still HAD to use it anymore.

What are your thoughts????

Slippery slope at best. Apnea isn't 'cured' by using Cpap for a period of time, and if you go off your machine, your apnea will come back unless you have gastric surgery (Not UPPPI). Even losing a lot of weight isn't usually enough. Don't cheat yourself looking for ways to go off Cpap because it doesn't work and you'll just feel lousy again, not to mention the possibility of driving into a tree ! If you don't believe me and go off anyway, make an appt. for a new sleep study in about 3 mos. and see what the results are. That was NOT a challenge, just making the point. You may feel ok for a while, but gradually won't, though may not appreciate the slow slide, but a new test will show you what's what and you'll only have 'prolonged' the inevitable.

My thoughts----

I have been on cpap since September of 2002. I almost always get low AHIs - almost always below 1 but I sometimes get a 1 or 2 point something.

I think that it is because of the optimum therapy I am getting, every night, that I have such low AHIs.

Low AHIs do not mean, to me, that I am "getting better" but rather that the therapy I am getting is doing a good job for my sleep apnea. Without cpap, I believe my AHI would be up in the 60 again (where it was when I was diagnosed). I am not cured but am simply getting good therapy.

I would never consider going without my cpap (in my case apap).

Sleep Apnea is a medical condition. Some medical conditions can be cured (say pneumonia) and some can be managed (diabetes). The ones that can be cured -- you take the medication or treatment for a certain period of time, then you can stop and you're CURED. The ones that are managed require a commitment to continue the treatment to manage the problem.

Sleep Apnea usually can't be cured. It falls into the latter category. Most likely, stopping treatment will result in the condition worsening again.

I've been on cpap for a little over three years. The few times I've fallen asleep on the couch without it have convinced me to never try to sleep through the night without it! I was diagnosed in the mild range (19 RDI) and with cpap consistently have under 1 AHI. I still don't feel all that great, but I feel a lot worse without it and I know it's much better for my health.

The only reason I have AHI<1 with cpap is because I'm using cpap. It's very obvious from my naps without it that I still have OSA. Some people who lose weight do improve enough that they can quit using cpap, but as we all know, many, many people have OSA that are not overweight. You could have a home overnight oxymeter study done without using your cpap to see what your oxygen levels are without it.

Komodo wrote:STOPPED using your XPAP for a prolonged period of time to see if you STILL needed it?

I've been on XPAP for a year now, my AHI average is <6, and I know that I still need to use it everynight. However, I've read in several posts of people with an AHI of <1 who are STILL using their XPAP. Do you really need therapy at that point??? Personally, if I ever get my (long term) average AHI down to <2, I'd try to go without therapy to see if I still HAD to use it anymore.

What are your thoughts????

Never even considered it. As everyone else has said you usually can not cure apnea, but it can be treated with the cpap machine. Wouldn't it be great if you could?

rosie

WearyOne wrote:I've been on cpap for a little over three years. The few times I've fallen asleep on the couch without it have convinced me to never try to sleep through the night without it! .

I am not a long time user, but I had to post when I read the quote above. I fell asleep on the couch one afternoon last week and woke up to the loud snorts and gasps and speeding heartrate that I suppose I have had for years, decades maybe. What really struck me is how much worse it seemed than before. I used to just think that was the way I was...hey, three sleep studies told me I didnt have apnea, I just snored very loudly. Stupid me for taking so long to go to a different doctor and lab.

The really big thing was that I realized I had done that for years (snort, gasp, etc) and it NEVER felt as horrible as it did that afternoon on the couch, five months into CPAP. It's amazing.

Jeanette

Komodo wrote:STOPPED using your XPAP for a prolonged period of time to see if you STILL needed it?

I've been on XPAP for a year now, my AHI average is <6, and I know that I still need to use it everynight. However, I've read in several posts of people with an AHI of <1 who are STILL using their XPAP. Do you really need therapy at that point??? Personally, if I ever get my (long term) average AHI down to <2, I'd try to go without therapy to see if I still HAD to use it anymore.

What are your thoughts????

Have never even considered trying it.....and if I even thought about it, I quickly dismissed that thought. I can't sleep in a horizontal position anymore without it. I can manage a nap up to a couple of hours in my recliner, but not in bed. Besides, at this point, I'm not about to screw up my compliance. My first couple of months in 2005 were a little rocky......had a real bad cough/cold for about 10 nights (two weeks after I started) and then a couple of very short nights due to work situations. I haven't missed a night or been under the 4-hour minimum since July 21, 2005......and plan to keep it that way. It's my "comfort zone"......my "security blanket"

One thing you need to remember about those < 1.0 numbers you see us talking about......they're our TREATED numbers.
Our bodies have gotten used to it and we've tweaked our therapy to achieve those numbers. Take away the machines and we'd be back to our old pre-CPAP feelings in short order.


Den

Go naked...nekid as we say here in the South...are you nuts ? I like being alive waaay tooo much to even consider it! I have excellent numbers, AHI=1.3 for the past 189 days on APAP, who knows before when I had a data-less CPAP (since Aug '07). Haven't gone nekid for a single sleep period. No desire to experience what it was like pre-CPAP.

Interesting replies so far!!!!!!!!!!

I have to admit I'm surprized that nobody's posted a "horror story" of quitting and having to get back on therapy again.

I understand that OSA is a life-long condition that needs to be managed on a daily basis, I'm not THAT stupid. BUT, I am that STUBBORN! I don't believe every word that comes out of my doctors mouth. If I had an AHI of ~0~ for a year, I'd definately TRY going a few nights "nakid" just to see what happened. Doesn't mean I'd throw out my machine....just in case I was wrong.

I have been on CPAP therapy for almost 15 years now. My AHI numbers now are quite good, but a nap on the sofa only lasts about 5 mins and then I wake myself up with the snorting and gasping for breath. No need to prove that theory of your's any longer. As PP has said, some conditions can be cured, some can be managed. The tissue in my throat doesn't dissolve by using CPAP therapy, it's still there. I am well managed, not cured.

Komodo wrote:Interesting replies so far!!!!!!!!!!

I have to admit I'm surprized that nobody's posted a "horror story" of quitting and having to get back on therapy again.

I understand that OSA is a life-long condition that needs to be managed on a daily basis, I'm not THAT stupid. BUT, I am that STUBBORN! I don't believe every word that comes out of my doctors mouth. If I had an AHI of ~0~ for a year, I'd definately TRY going a few nights "nakid" just to see what happened. Doesn't mean I'd throw out my machine....just in case I was wrong.

I'm just curious why you'd even consider this? If you are being effectively treated and realize your condition has been treated, not cured, why would this be an option for you? Going back to my original post, what would you say to a diabetic that wanted to stop taking their insulin just to see if they still need it?

But -- you have to decide for yourself if you think this is something worth attempting. But I'm hoping you decide it's not a good idea.

No I never.

But I can tell you you don't need a "prolonged period" to know if you still need the machine.
I don't think it's usual or expected, but I hadn't seen my sleep doctor for five years, since I got the CPAP, really. Reading this forum got me informed to the point or REALLY wanting a data capable APAP, so I made an appointment.

Now I have an appointment for a new sleep study, seems expensive to me, but the insurance requires it. The doctor recommends it, too. Insurance requires me to spend the first few hours of the study WITHOUT my CPAP. I am NOT looking forward to that, but the doctor understands this and says the main thing is to try. If I can't sleep that way, say so and I can get hooked up to a hose right away.

So it doesn't take a whole night to know if you still have apnea, even for purposes of insurance.

You can stop using if you want. I'm going to keep my improved quality of life.

People here keep stressing to you that you are getting good AHIs BECAUSE your therapy is optimal. Using cpap, at an optimum level for you, is giving you those great numbers.

It does not get BETTER or get CURED, over time, with cpap use. It just gets better controlled or managed.

People with diabetes take insulin every day and, just because their sugar levels are good, it does not mean they are BETTER or CURED. Their diabetes is just controlled or managed - same with cpap.

This is not a medical condition that can be CURED. If you have an infection, you take a round of antibiotics and the infection is cured. Sleep apnea is not like that.

It's more like arthritis or diabetes. It can be managed but not cured.

I guess we should stop trying to persuade you not to stop but you asked!

Komodo wrote: I understand that OSA is a life-long condition that needs to be managed on a daily basis, I'm not THAT stupid. BUT, I am that STUBBORN! I don't believe every word that comes out of my doctors mouth. If I had an AHI of ~0~ for a year, I'd definately TRY going a few nights "nakid" just to see what happened. Doesn't mean I'd throw out my machine....just in case I was wrong.

If you decided to not use your CPAP for one night, it would be the same thing as before you started CPAP... Your airway is going to be obstructed, and you will have Apneas and or Hypopneas...

I sometimes (very rarely) but on the weekends when I am up late and laying down watching tv, I can feel myself start to dose off, and I feel like I cant breath and I can hear the snoring, which then wakes me up and I put my mask on... so even though I have been on CPAP for almost 1 year, and have had great success, I still need to use it no matter what...

Unfortunately, CPAP is not a cure, just a treatment to use to breath and sleep better. I know you know that, I am just saying lol