Might Quit APAP Therapy

[Mozart22]

I'm considering quitting APAP Therapy. After 10 days of full compliance I'm still very tired, in fact some days I feel MORE tired, not less.
My pressure range is 6-10 cm H20 and my AHI number is low, usually less than 5. No big leaks, and the leak rate seems normal based on
the Respironics True Blue intentional leak rate. But despite all that, I'm still really tired.

Last night I slept for 10 hours, all with the APAP. I could have easily slept another 4 hours, but I forced myself to get out of bed so that
I don't just spend me entire life in bed. 10 hours is a lot more than most people get. As usual the AHI and leak rates are good.

I feel exhausted from the moment I wake up. I can't live like this! No energy to do anything.
The reason why I coughed up $800 for an APAP was so that I could have plenty of energy like a normal 26 year old.
Instead I see no improvement and in some cases things are worse.

I'm considering quitting my APAP therapy. I want to be less tired not more tired. If I'm going to be tired either way, might
as well do it without a thing on my face all night blowing air into me. Some people have had success with APAPs and that's great!
But I've also read that about 20 percent of people do not have any improvement in energy and fatigue.
Certainly there are A LOT of people on this forum who use the machines every night and are still tired, even after months!
I also found plenty of these cases on other forums.

My thyroid levels are normal, glucose normal, blood pressure normal, I take no medication, but I have sleep apnea.
If this APAP isn't giving me a normal amount of energy, then I'm pretty much screwed. I don't know how I'm going to be able
to pay my bills because I'm too exhausted to hold a full time job

[2 B Sleeping Soundly]

Mozart22,

If you seriously think that 10 days of compliance is sufficient to diagnose your success or failure in using PAP therapy, well, I don't know what I could say to you to change your mind other than you need to do a whole lot more reading here to see what 'realistic' expectations really are in the use of PAP Therapy.

I hope you reconsider, you and your loved ones have a lot to lose.

John

[ChicagoGranny]

From your earlier posts:

I'm 26, male, and about 65 pounds overweight.

they said I have moderate sleep apnea when I sleep on my side, and severe sleep apnea when I sleep on my back

Sleep exclusively on your sides and lose 65 lbs.

Have another sleep study when you reach your target weight.

If "cured", maintain your target weight for a lifetime and continue to have sleep studies every five years (sleep apnea is a progressive condition).

[SleepingUgly]

Reasons why you shouldn't quit after 10 days:

• It's only been 10 days. There are plenty of success stories that didn't occur within 10 days.
• You "coughed up" $800 for this, so you might as well give it more of a try.
• While there are plenty of tired people here, that's also in large part because many people who feel good do not spend their time on a CPAP forum. In other words, this is not a random sample of CPAP users (in many ways), and most (not all) are here because they are having problems.
• With your inability to hold down a job, etc., it doesn't sound like you have much to lose, and perhaps much to gain, by trying harder.

Consider posting your data for people to chime in on. One thing that I noticed is that your AHI is "usually less than 5". Some people find that they feel better at lower AHIs than that. If your pressure is near the top end of your APAP range, I would consider raising it (and possibly raising the minimum pressure too), but I'd want to see the data and have others chime in also.

[BlackSpinner]

Another reason not to quit is that when you do get it working it is considered better then viagra and will help you have healthy children someday who won't be left fatherless at a young age.

[Mozart22]

Mozart22,

If you seriously think that 10 days of compliance is sufficient to diagnose your success or failure in using PAP therapy, well, I don't know what I could say to you to change your mind other than you need to do a whole lot more reading here to see what 'realistic' expectations really are in the use of PAP Therapy.

I hope you reconsider, you and your loved ones have a lot to lose.

John

I guess I'll give it another month. What really gets to me is that I seem to feel more tired than before.
Instead of going forward I've gone backwards. I'm nodding off as I type this.
Yes I was really tired before, but even this is too much.
I guess I'll just have to put up with 4 more weeks of feeling like a zombie while waiting for
a burst of energy that may or may not come.

[Todzo]

Hi Mozart22!

Only 20% of those medically commended to PAP are able to use it more than 4 hours a night at one year. You are not the only one quitting.

You need to find a doctor who is aware of and can treat CO2 maintenance issues, who understands the dynamics of stress, breathing, and what the constant pressure of PAP therapy adds to the mix.

You are wise to listen to your body.

Diet and exercise, by the numbers, will help 5% of those who try keep 5% of their body weight off for 5 years. Those with under treated OSA will do much worse.

Since I have learned to daily tune my CPAP therapy with understanding of CO2 maintenance issues the weight has consistently come down. I have taken at least 5 inches from my belt this year and am about to break the obesity barrier.

Have a great week!

Todzo

[Julie]

And I still don't understand why you'd be willing to quit altogether, but won't try a FF mask (a good one in your size, properly fitted).

[SleepingUgly]

I guess I'll just have to put up with 4 more weeks of feeling like a zombie while waiting for
a burst of energy that may or may not come.

I didn't say that. I said post your data. Have you?

[Phil_in_CA]

Even though I have only been on PAP for two months, I can say that it hasn't been a miracle... me popping out of bed after 5 hours of sleep, feeling like Superman.

What I CAN say is that over time I am feeling better and better, sometimes precious little, sometimes more so.

Before I was diagnosed and on treatment, I was tired and a bit brain-dead. Had trouble keeping priorities straight (was a classroom teacher) and feeling like my students were besting me occasionally! Not a good place to be. Now, a full two months down the road, I feel as though I can think more clearly and have regained my sense of humor (my wife said that that was the first thing to go...).

Oxygen deprivation is a strange thing and different for everyone, but I am sure that it is something that isn't reversed in 10 days.

IMO, AHI numbers at 5 isn't a magic thing. I am shooting for the lowest number I can, and my recent nights are almost all near 2.5 or lower (with occasional stressful days yielding AHI nights of 5+). You say that your numbers are usually less than 5 and that is good. Maybe you can do better.

If your machine records data, get some software downloaded to your computer and examine it with SleepyHead or Encore Basic (both available via people here, just ask). Do some homework! Learn what's happening while you are asleep.

Then, you can act on what you KNOW, not what you suspect. Knowledge is power. If you quit now, before you have done all you can, you commit to a life unfulfilled, by choice. I am not saying that CPAP is the only answer, but what I am saying is that you have come this far... go the distance before you change your mind. Make sure it is not working. Give it time.

Finally, if you haven't already, go to your Control Panel and turn on the settings for what equipment you have, which will help us to help you better. Different machines work differently/ masks the same.

[Thetoolman]

Another reason not to quit is that when you do get it working it is considered better then viagra

I am glad to hear that!!
I thought it was just me!! I was hoping my wife was slipping me the "viagra" pills. BUT it shure works I feel like I am 45 again!! STICK WITH IT KIDDO you will live a longer healthier life.. The feeling better will come.

[2 B Sleeping Soundly]

Mozart22,

If you seriously think that 10 days of compliance is sufficient to diagnose your success or failure in using PAP therapy, well, I don't know what I could say to you to change your mind other than you need to do a whole lot more reading here to see what 'realistic' expectations really are in the use of PAP Therapy.

I hope you reconsider, you and your loved ones have a lot to lose.

John

I guess I'll give it another month. What really gets to me is that I seem to feel more tired than before.
Instead of going forward I've gone backwards. I'm nodding off as I type this.
Yes I was really tired before, but even this is too much.
I guess I'll just have to put up with 4 more weeks of feeling like a zombie while waiting for
a burst of energy that may or may not come.

Mozart22,

I wish I could somehow make it work for you, I really do . For you time will tell the story, but your PAP therapy must be given enough time to really know for sure. Please try to hang in there and not give yourself the option of not 'making it work'! All it will take is some real consistency and/or success to happen and turn this all around for you. All of the advice you have gotten from all of the members here is very good, solid advice. It may or may not work, but you will never know if you don't press forward. Remember, it is your health and well being we are talking about, there is no option to quit! Please don't allow this extreme challenge to get the best of you, you have worth/value to your friends and loved ones who want this to work, and You Can Do This!

I copied a response from another thread because for me it is what I would need to hear if I was frustrated with the lack of success and time it was taking to see improvement and was thinking of giving up. *Imagine taking a cast off of your badly broken leg after just 7 - 10 days of wearing it and going for a nice jog down the street. It probably wouldn't go real well on the jog as it can take quite some time to heal a badly broken leg. Well, our ability to sleep properly, no matter if we want to face it or not, is broken! All the damage done to our bodies from untreated Sleep Apnea will take time to heal, sometimes due to other non-Sleep Apnea related issues, it will take a lot of time. For some it may never heal perfectly, just like the badly broken leg in where we could always walk with a limp, even after it is considered healed. Our sleep may never be perfect again, but it can certainly be improved upon with hard work and lots of patience. IMO, PAP therapy is a lot like a tool box that only has one adjustable wrench in it. You may be able to fix some things with it, but it is still only one tool and one tool will never be able to fix everything, no matter how hard we try or want it to.
I try to always remind myself that treating Sleep Apnea is never a sprint but a journey, and for some of us a life long journey. *The comment above was from a recent post in this thread: viewtopic.php?f=1&t=84887&p=771009#p770984.

I wish the best for you, and the best is for you to give this enough time to see improvement. How much time is that? I don't know, but you owe it to yourself to persevere and find out.

John

[Mozart22]

I'm gonna stick with my APAP for a while longer. I really hope I can find some energy soon.

I used to take Paxil, and getting off that drug is very hard for most people. I went through a grueling 18 month taper,
with help from the PaxilProgress forum. That taper ended successfully a year and a half ago.

It was really hard, and I was hoping I could live a normal happy life now. Instead, I have to deal with THIS.
Constant fatigue and an APAP that seems to increase my fatigue, not decrease it.

Getting off Paxil successfully took a ton of patience, tweaking, endurance, and support. (those of you who took SSRI's before
may know that many of them seem to stop working after a few years, your body builds tolerance. Getting off the drug is
VERY hard and you feel like total crap)

Anyway, I'm past all that, like I said my taper ended in June 2011.
But I cringe at the thought of having to deal with something all over again. I kinda "lost" 2 years of my life back when I
was getting off Paxil, because I felt like crap nearly everyday. I was so happy to finally be done with all that.
But instead of living it up like a 26 year old in his prime, I now have a whole knew challenge to deal with.

I wonder what happens to those people you hear about on this forum and other forums, who have been using xPAP for
several months, sometimes more than a year, and still feel exhausted. I wonder how they manage to work and pay their
bills or to socialize. Waking up very tired after 9 or 10 hours of sleep is truly a curse and makes living a normal healthy life
VERY hard

[johnthomasmacdonald]

I don't see where you REALLY have a choice - you've got to make it work. It's like being disgusted with diabetes treatment and then threatening to walk away from it - you can, but you are either going to die or return to it in worse shape than you were when you stopped treatment ( I know of what I speak as i had an aunt and cousin (her son) who basically ignored their diabetes and it was not a pretty picture as bits and pieces of them got amputated off). My first hearing of sleep apnea was a friend of the family - in her 40s - discovered she had sleep apnea by not waking up one morning with severe brain damage.

There are many options that you have yet to try - for example: dental appliance, surgery,surgically implanted pillars, bipap - combinations of the above - dental appliance + bipap. I was getting poor results on apap/cpap so i got a dental appliance that allowed me to drop the pressure way down - from 12 to 6 , then i switched to bipap which I found MUCH MUCH more comfortable even on its own without the dental appliance

YOu are at step one - MAKE IT WORK

[Mozart22]

I don't see where you REALLY have a choice - you've got to make it work. It's like being disgusted with diabetes treatment and then threatening to walk away from it - you can, but you are either going to die or return to it in worse shape than you were when you stopped treatment ( I know of what I speak as i had an aunt and cousin (her son) who basically ignored their diabetes and it was not a pretty picture as bits and pieces of them got amputated off). My first hearing of sleep apnea was a friend of the family - in her 40s - discovered she had sleep apnea by not waking up one morning with severe brain damage.

There are many options that you have yet to try - for example: dental appliance, surgery,surgically implanted pillars, bipap - combinations of the above - dental appliance + bipap. I was getting poor results on apap/cpap so i got a dental appliance that allowed me to drop the pressure way down - from 12 to 6 , then i switched to bipap which I found MUCH MUCH more comfortable even on its own without the dental appliance

YOu are at step one - MAKE IT WORK

I know, and I'm trying hard. I've spent hours reading these forums, I've made adjustments, I'm trying to give it time.
But to answer your question about not having a choice, I seem to feel MORE tired with APAP. In other words if I stopped using it,
I'd still feel tired but not this bad! That's the first point. As of now I feel like my fatigue has gone backwards not forwards.

The second point is that there are several people who say they've tried xPAP for MONTHS or sometimes years with no improvement
in energy. That's another problem. My point being, if I end up as one of the unlucky ones who keep using the APAP every single night,
achieve low AHI numbers, normal leak rates, and yet still feel exhausted, then I have the CHOICE to sleep tired without a machine
versus sleeping tired with a machine.

As I said before, I realize xPAP is about more than just fatigue. It's also about heart health, organ health, etc. But my number one reason I got
a sleep study and an APAP was to have enough energy to hold a job and socialize a bit and not feel exhausted all the time.
If several months were to pass and I still feel that way, or worse even more tired, then i have the CHOICE to get off it and continue
being tired but without a mask on my face and a machine blowing air into me.

I made the analogy before: if you are prescribed a pill, and after taking the pill over and over you still don't feel better, why keep taking that
pill?