One Month on CPAP - Major Disappointment

[Mozart22]

I've been using my APAP for about a month now, and so far it has been a major disappointment for me.
Twice I came very close to stopping it, but I've decided to use it for 3 months before deciding whether to stop or not.

My AHI is almost always below 5, and usually it's below 3. The leak rate is normal for my mask, no major leaks.
I use the APAP all night, I'm not one of those who only wears it for 4 or 5 hours. It's on between 8 to 11 hours per night.
Most of the time the largest share of events are Hypopnea, followed by a smaller share of OSA, and an even smaller
share of Clear Airway events. This is consistent with the results of my sleep study with found Hypopnea to be my main
problem.

While I know that the APAP does the heart good, and I don't go to the bathroom as much at night, my number one goal
was and is to have a normal energy level. At age 27 I need to work full time, I have bills to pay. Right now I work only
part time and even that takes a lot of effort on my part. I'm also greatly underachieving, and it's because of fatigue.
There are many things a young man my age should be doing but instead I neglect most of it because I'm just so damn
tired all the time.

Some days the APAP seems to make me MORE tired, not less. It varies. What I can say for certain is that after about a month
of use, there has not been one single day where I woke up refreshed and full of energy. To the contrary, my days are pretty
much a constant struggle to keep my eyes open and prevent myself from sleeping my life away. I feel like I could sleep
for 18 hours, but that's no way to live. Work, errands, and responsibilities make that almost impossible for me.

I tried straight CPAP mode for a few days, and my AHI got worse not better, and I felt no less tired.
I narrowed down the APAP pressure range. I even turned off A-Flex to see if that was the problem.
These different adjustments were suggested on this forum and none of them led me to waking up refreshed
like a "normal" 27 year old would. I could sleep 8 or 9 hours and still wake up as if I got hit by a truck.

I know some people talk about sleep debt and a waiting period, but I also read some cases on here where people
have been using their device for 6 months or more and still feel tired all the time.

With one month down, I'm gonna give this another 2 months for a total of 3 months. If after 3 months of nightly use
I still feel tired as ever, I'm done with this CPAP stuff. I'm uninsured and paid a lot of money out of pocket for the device, mask, special
pillow, etc. I sincerely hope the next 2 months are much better, but for now it's just one big disappointment.
I can certainly understand why they say a majority of CPAP patients stop using their machine within the first year.

What bothers me the most is how I'm supposed to make a decent living and pay my bills. That's what troubles me.
Life costs money and money usually required a job. I have two degrees and I'm no idiot, but when I struggle a lot to work
20 hours per week, I know for a fact I could not survive working the usual 40 hours per week. Very little energy.
I've read that some people take Nuvigil or Provigil, but it can come with some unpleasant side effects and supposedly it's not
safe to take it everyday for years and years. I really need to find a way to be able to work before I sleep myself to
bankruptcy or eviction for being unable to pay bills. I am very willing to work and pay my own way, I just constantly
drowsy and half awake.

[RandyJ]

I don't remember from the other thread, but your vitamin D, inflammation (CRP) and thyroid levels are normal? I am assuming you've explored other avenues to rule out that your fatigue might not be sleep-related?

Even a gluten sensitivity, for example, can make your body feel so fatigued that it can be mistaken for not getting restorative sleep.

[Mozart22]

I don't remember from the other thread, but your vitamin D, inflammation (CRP) and thyroid levels are normal? I am assuming you've explored other avenues to rule out that your fatigue might not be sleep-related?

Even a gluten sensitivity, for example, can make your body feel so fatigued that it can be mistaken for not getting restorative sleep.

My thyroid is fine, my Vitamin D is a little low, I take 5,000 IU of D3 per day. I also take Vitamin B12 and try to eat plenty of fruits and veggies.
I don't take any medication.

I know I'm not the only one having this problem, I've read at least a dozen threads on this forum from people who still feel very tired after
months of CPAP use. I think that sometimes it just doesn't work for some people. Much like how some people respond quickly and positively
to a medication while others do not. With good AHI numbers, no central apnea problem, a mask that I'm comfortable with, low leaks,
and 4 weeks of continuous use, I would think I would wake up refreshed and ready to go.

Alas, that is not the case, and as such I am unable to work and succeed to my full potential. Under achieving with my career, almost no social life,
unable to maintain a relationship, all because of the fatigue.

[kteague]

It is a major disappointment when we desperately need relief yet don't see it happen as we'd hoped. I'm just hoping that the next couple months for you will turn things around enough for you to begin reaping some rewards of your diligent efforts. You may be one of us who takes longer to improve than others. At least your AHI is lower on treatment, which gives your body the environment to support healing. I don't have answers, just thoughts. Just thinking... with so much of the month being spent in experimentation, maybe it would help to not look at it as a month of ineffective treatment. You have the attention to detail and solution seeking mind that leads me to guess this WILL get better for you. Good luck in the next time frame you've allotted.

[Sheriff Buford]

I encourage you to continue to use cpap therapy because your numbers (AHI, low leak rates...) don't lie. I think there is something else wrong with you and there is something else going on in your body. I think you should see a doctor. I don't know what your insurance issues are, but you could see a bunch of doctors to find out what is really ailing you. You will be in my prayers today.

Sheriff

[RandyJ]

My thyroid is fine, my Vitamin D is a little low, I take 5,000 IU of D3 per day. I also take Vitamin B12 and try to eat plenty of fruits and veggies.
I don't take any medication.

I know I'm not the only one having this problem, I've read at least a dozen threads on this forum from people who still feel very tired after
months of CPAP use. I think that sometimes it just doesn't work for some people. Much like how some people respond quickly and positively
to a medication while others do not. With good AHI numbers, no central apnea problem, a mask that I'm comfortable with, low leaks,
and 4 weeks of continuous use, I would think I would wake up refreshed and ready to go.

Alas, that is not the case, and as such I am unable to work and succeed to my full potential. Under achieving with my career, almost no social life,
unable to maintain a relationship, all because of the fatigue.

First, if you were told to take 5000 IU a day of D3 by your doctor, your D must have been VERY low. Make sure your doctor gave you an order to retest your blood 3 months after starting that 5000 IU dose.

There is another important distinction to make. If your AHI is under 3, cpap is WORKING. You are preventing the majority of the oxygen desaturations that cause stroke and other organ damage, which is a good thing. The fact that you still feel fatigued does NOT mean that cpap isn't working. It just means that you have still have the symptom of feeling fatigued.

If nothing changes after a month, it would definitely mean that you should look ELSEWHERE for answers about why you feel fatigued. It does NOT mean that you should stop cpap and begin depriving your brain of oxygen again.

Good luck!

[xenablue]

As you may remember, after 2 years I still wake up feeling sleepy on occasions. I wouldn't give up my CPAP for anything as it's reduced my apnea events to a constant near zero.

I'm looking at other reasons for my sleepiness, with the guidance of my neurologist. One of the things she suggested was my oxygen levels during sleep, and as I have a recording oximeter will wear this nightly for the next 2 weeks. This will also tell us whether lower oxygen levels might be contributing to my RLS, or if THAT is caused by something else.

I also have a new Zeo, and this has shown that on every single night, my REM time is less than 15 minutes total per night - when it should be a total of around 1.5 hrs. This to me is a BIG reason I don't feel rested when I wake up.

Neither of these have to do with my CPAP therapy - that just prevents things like brain damage, strokes, heart attack, high BP, kidney damage etc., etc.

I suggest you now start looking for some other reasons you are still not feeling peppy when you wake up.

Cheers,
xena

[Madalot]

I suggest you now start looking for some other reasons you are still not feeling peppy when you wake up.

I second this. With the help & input of a forum member, I found a way to videotape myself sleeping, using a netbook I already had with a FREE software program I downloaded off the internet. While one night didn't shed much light on MY situation, it sure did give me some insight into why my husband is more tired that I would expect, despite his being on cpap for over a year with excellent numbers. There's no doubt in my mind that he has some serious RLS, despite the fact that it doesn't happen every night and NEITHER of us was aware of the magnitude of it.

Please keep looking and don't give up on CPAP. There's probably something else going on, conbributing to your fatigue. Once you find it and correct it (if you can) you should be doing much better.

[Suzjohnson]

[quote="Mozart22"

My thyroid is fine, my Vitamin D is a little low, I take 5,000 IU of D3 per day. I also take Vitamin B12 and try to eat plenty of fruits and veggies.
I don't take any medication.

That your thyroid is fine is good but doesn't actually reflect your iodine level, which if low, can result in excessive tiredness. Also check your iron levels. We often believe we are consuming adequate iron in our diet but don't see how often we are also consuming things that prohibit the proper absorption of iron.

It took me six months to really begin to feel the difference in my body and mind of pap therapy. Please don't give up so quickly!

[BlackSpinner]

As told to you in the other thread - "tired" is just one symptom of this disorder - just one and the most obvious external one and one not everybody has.

Are you keeping a journal? Because if you aren't then you have nothing but a flaky memory by which to compare your progress. Pain and discomfort are quickly buried, if they weren't no woman would ever have a second child.

[chunkyfrog]

Hang in there Mozart22.
The benefits are there, even if you don't feel them yet.
I had to go 4 or 5 months before I felt stronger and less groggy.
Be sure to rule out other problems; it sounds like there may be something else.
In any case, your APAP is helping give you the strength to fight whatever it is.

[johnthomasmacdonald]

the problem is your alternatives - you really don't have any. Most of us would dump cpap today if we could. We can't.

If you are really fatigued when getting enough oxygen while you sleep, how would decreasing your oxygen help?

I had an aunt and her son who both developed type 2 diabetes and refused to relate to it - they figured if they ignored it, it would eventually go away. What went away was bits and pieces of them by amputation and eventually their lives, long before they had to have died.

You can try other alternative treatments: dental appliances or surgery, but ignoring it will just make matters worse.

Personally, i've needed a dental appliance AND an Apap/bipap machine to get my ahi numbers below 5 ( and it is erratic, one night I'm 2 and the next night i'm and I may require an ASV machine.

But it makes it easier to stop debating about whether i need to do something about it - I accept that i MUST make it work.

Getting enough oxygen is not open to debate, brain damage is permanent.

And i NEVER debate: " Why me? " because the answer is obvious: " why NOT you? " Kids will die today from leukemia and they certainly didn't "deserve it".

[Ugly]

I've been using my APAP for about a month now, and so far it has been a major disappointment for me.

Then again it wasn't meant to be fun. Being "in bed" can be fun but sleeping is not.

Twice I came very close to stopping it, but I've decided to use it for 3 months before deciding whether to stop or not.

Only twice? Then you're not doing too bad.

My AHI is almost always below 5, and usually it's below 3. The leak rate is normal for my mask, no major leaks.
I use the APAP all night, I'm not one of those who only wears it for 4 or 5 hours. It's on between 8 to 11 hours per night.
Most of the time the largest share of events are Hypopnea, followed by a smaller share of OSA, and an even smaller
share of Clear Airway events. This is consistent with the results of my sleep study with found Hypopnea to be my main
problem.

It's great you have such stats. I was suckered into a low level machine (ResMed S9 Escape) that gives out very little data.
I'm trying to pester my stubborn respiratory therapist to replace it with an S9 AutoSet. I didn't know the difference until it was all in place.
So I have no way of currently knowing how apnea is hindering me or anything.

While I know that the APAP does the heart good, and I don't go to the bathroom as much at night, my number one goal
was and is to have a normal energy level.

That's part of what I need. I have so little energy most of the time with a "static" pressure setting.
Even then I had to fight for it. A sleep study supposedly indicated that my pressure was the same as before (8.0) even though I know that the study was hoplessly botched up.
My doctor adjusted the level to 11.0 instead.

At age 27 I need to work full time, I have bills to pay.

Lucky you. Not bad if you can swing it. I'm on permanent disability - I guess nobody in their right mind would hire me.

I tried straight CPAP mode for a few days, and my AHI got worse not better, and I felt no less tired.

If my machine had the ability I shudder to think what my AHI is nowadays.

I narrowed down the APAP pressure range. I even turned off A-Flex to see if that was the problem.
These different adjustments were suggested on this forum and none of them led me to waking up refreshed
like a "normal" 27 year old would. I could sleep 8 or 9 hours and still wake up as if I got hit by a truck.

While it's almost reassuring that I'm not the only one who feels that way, I still don't wish it upon anyone.

I know some people talk about sleep debt and a waiting period, but I also read some cases on here where people
have been using their device for 6 months or more and still feel tired all the time.

I've used a CPAP since 1998. If it's not set to meet your needs precisely then it doesn't matter how long you use it.

I can certainly understand why they say a majority of CPAP patients stop using their machine within the first year.

It's easy to say don't give up, but talk is cheap and I should know better. There have been times when I wondered if there is any point.
There is a point - if you can get it at an ideal setting that works. Unfortunately it seems that the "experts" don't always have enough interest in your case to bother with you.
I had to pester many people even to come this far and I'm not quite finished.

What bothers me the most is how I'm supposed to make a decent living and pay my bills. That's what troubles me.
Life costs money and money usually required a job. I have two degrees and I'm no idiot, but when I struggle a lot to work
20 hours per week, I know for a fact I could not survive working the usual 40 hours per week. Very little energy.

Some of us would love a paying job. I would also love to be able to work full time hours. I don't have the stamina - and that's something that goes well beyond the boundaries of sleep apnea.
I don't get rich on disability, but whatever limitations I may have (concentration, memory, co-ordination) are made worse by sleep apnea. You obviously know that the old adage, "Fake it till you make it" just doesn't work when you don't have the energy.

Professionals. Too bad they stand in the way of progress.

[SleepingUgly]

I've read that some people take Nuvigil or Provigil, but it can come with some unpleasant side effects

Every medication CAN have side effects. You don't know if these medications have any significant side effects for you, and you don't know if those side effects will outweigh the benefits.

and supposedly it's not safe to take it everyday for years and years.

What's your source for that? If you had a preexisting condition (e.g, heart problems, etc.), you probably shouldn't be taking it anyway. But I haven't read that there's any aggregate harm over years.

I really need to find a way to be able to work before I sleep myself to bankruptcy or eviction for being unable to pay bills. I am very willing to work and pay my own way, I just constantly drowsy and half awake.

Bankruptcy and eviction are unpleasant side effects too.

[cosmo]

Move to Canada and get their free health care.