How do I know if I am cured

I was diagnosed with apnea on the basis of a home study test. Unfortunately, I can't remember the name but I am sure if you google the subject, you can find one that might work.

49er

nanwilson wrote:Larry
You will need another test to tell if you still have it or not....and please do not get mad at me for telling you this.....there is no 'cure' for apnea. This is not a "lose weight and you will be cured" type of problem. There are folks here on the forum that have lost alot more than you and they are still on the hose.

Sorry -- but for some people you are completely wrong. YES, for some, losing a lot of weight can CURE you IF you maintain that weight loss. I am not just touting some statistic - I know this for fact as I did it. I had severe apnea, then lost 65 lbs and totally elimated OSA. Took a year and a half to do it, but I spent another night in the UVA sleep lab and confirmed it. I even got a letter from them stating that my OSA was cured.
I maintained that weight loss for another 7 years and had ZERO OSA, but then fell on bad times with my knees, gained all the weight back, and the rest is history.

So, for some of you .. DO NOT GET DISCOURAGED by posters here that claim you cannot cure OSA by weight loss. Some of you can and you can probably get an idea that you are making progress toward that goal by hints from you spouse telling you that you no longer snore when taking a nap without your CPAP. I personally believe that distance walking will greatly aid in this effort as it tones up your respiratory system.

You MUST get a proper diagnosis from your doctor and that diagnosis must be entered on your medical chart. Otherwise, no-one else will believe you and your conclusion that your are cured. Examples of why this is important?

1) you self diagnose that you are cured and stop using your xpap. Three years later, you die in a head-on car crash. Your life insurance company reviews the case and refuses to pay out on your policy because your medical records show that you have sleep apnea and you were non-compliant.

2) you are a truck driver and can no longer prove compliance with your therapy.

3) your doctor discovers that you have stopped using xpap and decides that it's important that you stop driving. He/she reports you to your state/provincial licensing office. You lose your license!

etcetera ........

Hose_Head wrote:You MUST get a proper diagnosis from your doctor and that diagnosis must be entered on your medical chart. Otherwise, no-one else will believe you and your conclusion that your are cured. Examples of why this is important?

1) you self diagnose that you are cured and stop using your xpap. Three years later, you die in a head-on car crash. Your life insurance company reviews the case and refuses to pay out on your policy because your medical records show that you have sleep apnea and you were non-compliant.

2) you are a truck driver and can no longer prove compliance with your therapy.

3) your doctor discovers that you have stopped using xpap and decides that it's important that you stop driving. He/she reports you to your state/provincial licensing office. You lose your license!

etcetera ........

Hi Hose_Head!

In a legal sense and for the reasons you bring up I agree with you.

In a practical sense, a measurement of "no apnea" made in a laboratory on a single night - means - the person did not have apnea in that particular laboratory on that particular night.

After reviewing my own data constantly for several years now, and observing in others close to me as well as others here, how variable our symptoms are over time I have come to realize that a single night measurement in a strange environment is of limited practical use. To get closer to the truth of what is really going on the test must be made in the persons real bed over many nights.

What I keep hearing are those who are confirmed "cured" but then OSA is brought back into the picture later on.

When we understand fully what causes OSA - THEN - we will be able to cure it. In the mean time we use a mechanical "splint' to treat a physiological problem.

We have a long way to go!

Todzo

Todzo wrote:

Hose_Head wrote:You MUST get a proper diagnosis from your doctor and that diagnosis must be entered on your medical chart. Otherwise, no-one else will believe you and your conclusion that your are cured. Examples of why this is important?

1) you self diagnose that you are cured and stop using your xpap. Three years later, you die in a head-on car crash. Your life insurance company reviews the case and refuses to pay out on your policy because your medical records show that you have sleep apnea and you were non-compliant.

2) you are a truck driver and can no longer prove compliance with your therapy.

3) your doctor discovers that you have stopped using xpap and decides that it's important that you stop driving. He/she reports you to your state/provincial licensing office. You lose your license!

etcetera ........

Hi Hose_Head!

In a legal sense and for the reasons you bring up I agree with you.

In a practical sense, a measurement of "no apnea" made in a laboratory on a single night - means - the person did not have apnea in that particular laboratory on that particular night.

After reviewing my own data constantly for several years now, and observing in others close to me as well as others here, how variable our symptoms are over time I have come to realize that a single night measurement in a strange environment is of limited practical use. To get closer to the truth of what is really going on the test must be made in the persons real bed over many nights.

What I keep hearing are those who are confirmed "cured" but then OSA is brought back into the picture later on.

When we understand fully what causes OSA - THEN - we will be able to cure it. In the mean time we use a mechanical "splint' to treat a physiological problem.

We have a long way to go!

Todzo

Agreed. I suspect that most of us on this board recognize the severe limitations of an in-clinic, single-night sleep/titration study. However, that's the ONLY standard that's likely to be understood or accepted by the "system". It's unfair, but it is our reality.

I read an interesting comment recently....

It said that when we THINK we got it licked, sleep apnea usually finds a way to come back. It's almost like a mutating virus, in that we hope we have "cured" it with say, a mouth guard, but the body changes and it rears its ugly head again.

I see this pattern sometimes on a short term basis. 97% of my nights I see AHI=1 or less. Then out of nowhere I get a terrible night with AHI=17. When I think I've got it licked (with therapy) it shows me who's really boss.

But for me, sleeping with no VPAP is like skydiving without a parachute. Skin diving without a tank. Driving at night without headlights. Having sex without...

Tom

LarryPer1 wrote:Howdy
Been on the machine for 2 years but I have lost 70 pounds since and heard maybe I won't need it any more
I don't want to try and sleep with out it and I don't want to get another sleep study at the hospital

Many Thanks Larry

If you don't want to sleep without it, don't.
Have you looked at your data?
You don't say what equipment you are using, or how you feel.
I wouldn't bother with another study if I felt I didn't need it... based on data AND how I feel.

LarryPer1 wrote:Howdy
Been on the machine for 2 years but I have lost 70 pounds since and heard maybe I won't need it any more
I don't want to try and sleep with out it and I don't want to get another sleep study at the hospital

Many Thanks Larry

If you don't want to sleep without it, don't.
Have you looked at your data?
You don't say what equipment you are using, or how you feel.
I wouldn't bother with another study if I felt I didn't need it... based on data AND how I feel.

Hose_Head wrote:

Todzo wrote:
Hi Hose_Head!

In a legal sense and for the reasons you bring up I agree with you.

In a practical sense, a measurement of "no apnea" made in a laboratory on a single night - means - the person did not have apnea in that particular laboratory on that particular night.

After reviewing my own data constantly for several years now, and observing in others close to me as well as others here, how variable our symptoms are over time I have come to realize that a single night measurement in a strange environment is of limited practical use. To get closer to the truth of what is really going on the test must be made in the persons real bed over many nights.

What I keep hearing are those who are confirmed "cured" but then OSA is brought back into the picture later on.

When we understand fully what causes OSA - THEN - we will be able to cure it. In the mean time we use a mechanical "splint' to treat a physiological problem.

We have a long way to go!

Todzo

Agreed. I suspect that most of us on this board recognize the severe limitations of an in-clinic, single-night sleep/titration study. However, that's the ONLY standard that's likely to be understood or accepted by the "system". It's unfair, but it is our reality.

Hi Hose_Head,

For me it is a reality that if I do nothing to change what I know is hurting others, I bear responsibility for their pain.

Have a great week!

Todzo

Lizistired wrote:

LarryPer1 wrote:Howdy
Been on the machine for 2 years but I have lost 70 pounds since and heard maybe I won't need it any more
I don't want to try and sleep with out it and I don't want to get another sleep study at the hospital

Many Thanks Larry

If you don't want to sleep without it, don't.
Have you looked at your data?
You don't say what equipment you are using, or how you feel.
I wouldn't bother with another study if I felt I didn't need it... based on data AND how I feel.

I certainly would not abandon CPAP without getting another workup done. Especially if the person had severe OSA before. Like I already said, if you've lost a ton of weight and exercised, you can get hints that your OSA is gone or greatly diminished, but you really need that confirmation from the sleep lab.

I think I'll take a stab at answering this one ..

Sometimes loosing weight does make enough of a difference to reduce or even eliminate the need for CPAP therapy. Sometimes, but not often.

In my own case, I'm pretty certain that when I was a teen (and underweight for my height), I developed obstructive sleep apnea. I suspect even if I loose all my excess weight, I would still suffer from obstructive sleep apnea (as well as the central sleep apnea - but that's another story).

You state you don't want to try to sleep without it, which is good. But you want to know if you need it. You might want to request the use of a pulse oximeter (or purchase one on your own). Then you can sleep with it and with your CPAP - and use that data as a baseline. Then try to sleep without the CPAP but with the pulse oximeter. If the pulse oximeter does not show low oxygen levels or stress on the heart, then you probably don't need the CPAP device to help you sleep.

Of course, if after a few nights you find you are really tired, you might then see if using CPAP will fix the daytime sleepiness. If yes, then you probably still need CPAP to help you sleep.

That's probably the best middle ground for not having the full blown sleep study, but knowing if the weight loss was enough to reduce the need for a CPAP device.

Hope that helps.

Todzo wrote:

chunkyfrog wrote:Someone else who has noticed white coats worn with little pointy hats.

Hi chunkyfrog!

The "many days" aspect of the data gathering helps to overcome what guess you could call the "one night effect". One single night of data, to me, after seeing many hundreds of nights of data for this one single person over that long time - well - one night I think is unlikely to be representative of what is actually the case.

This is especially true if there is a large pressure change involved. The body needs time to get used to using a different pressure setting. That is my experience.

The recent numbers I am reading indicate that only 50% of those who start PAP are still using it a year later. I think that the disrespect that our current medical community has for the "effects" and variability of the human person are some of the main reasons why.

I do hope we find a good way!

Todzo

and – try not to get poked by the pointy hats!!

I agree that one night is not adequate to determine therapy. The Lab set my pressure at 11 and that was done at the very last few min of my sleep study. I only sleep for 3 or 4 hours.Too short of a time I think. I used the Escape for the first 3 months with no data and leaks so bad that the machine showed no variance in backpressure for 2/3 fo the time used. DME has been NO help at all. They respond to my questions but do not answer them. I came unglued on them and got an APAP and the Liberty mask. Now I have been on my new APAP for three nights and my AHI's are, 15.5, 13.8, and 19 last night. I have been sleeping 7 to 8 hours with near 0 leaks. I do feel better but still too tired.

I have not downloaded my data yet into SH or ResSan but am set up to do so now. I will try to get this done today but I am a Newbe at it all. I am going to have to tritrate myself, HELP, I don't know what I am doing but I have been learning. Pugsy said to leave everything alone untill I get my data info going so I have and my machine is still in CPAP mode.

I am so glad there are knowledgeable people here to help because I am not going to get any from the Medical establishment. I can't even get into see a sleep doctor. My regular Dr takes care of follow up and she knows less than I do about all this stuff.

Lilly, You need to start a new thread so you can get some help.

Lilly, I agree with Liz. When you get your software reports up and running please start a new thread so we can devote it all to your problems and other peoples stuff won't get mixed in and cause confusion.
You AHI is too high...we know that but we need to know more before we help you on the road to self titration.

Thank You, I will, sorry if I got things off track. I just wanted to show how one night's worth of data is not always adequate to make changes or settings even with a Sleep study Lab doing the testing .

Pugsy wrote:Lilly, I agree with Liz. When you get your software reports up and running please start a new thread so we can devote it all to your problems and other peoples stuff won't get mixed in and cause confusion.
You AHI is too high...we know that but we need to know more before we help you on the road to self titration.