Might Quit APAP Therapy

I'm creating a new thread with several screenshots. I hope you will all look at it and tell me why I feel more tired not less.

Put a link to that thread in this thread.

My data has been posted. viewtopic/t85037/As-Requested-SCREENSHOTS-and-Data.html

Mozart22 wrote:

xenablue wrote:Mozart, please consider changing your way of thinking. It's only been 10 days - I've been at this for two years and I still have days I wake up dragging... but...those days are becoming less and less.

Cheers,
xena

If you've been on this for 2 years and still have some bad days, then I don't think xPAP will help all that much. 24 months is an awfully long time.
If you're starting to feel a bit better after all that time, then it's probably due to other factors like less stress, losing weight, exercising more, diet changes,
secondary health condition, etc.

Some other factor must have changed for you to have more good days than bad. I don't think it's realistic to have to use an xPAP for 24 months
and then assume that is what helped with the fatigue, sleep debt be darned.

I really think you should reread your above post. It's not realistic. Most people here would consider Xena a success story. Even non-cpap users like myself(my hubby is the cpapper) don't always have perfect sleep every night and wake up raring to go every day. Give this more time and be patient with yourself. You just may need some tweaking of pressures and a mask change.

Mozart,

I think your sleeping too long. 10 hours is way too much sleep and will make you feel worse not better. I felt great my first night, then I started having problems and went from my usual 8 - 10 without CPAP to only about 3 hours with CPAP. I guess I was experiencing CPAP induced insomnia. But even with that little sleep in actuality I was feeling better than before CPAP. I did some reading on sleep hygiene to try to get rid of the insomnia and started going to bed earlier and started listening to binaural beats and Kelly Howell's guided mediation on youtube (with headphones.) and I am feeling almost normal now on most days.
It is a known fact that too much sleep makes you feel like S***.

I do know it's never going to be perfect and there will probably be nights when my sleep suffers, but it will never suffer like it did before CPAP.
See if less sleep makes you feel better. Try setting your alarm to wake you up after 6 or 8 hours of sleep instead of 10 and give your body about an hour each morning to adjust. Sleep apnea drains you, not the CPAP, and your circadian rhythm is messed up. read about it, learn as much as you can about sleep hygiene, try the suggestions that others give you and you will start to feel better.

Go check your vitamin d level too, you probably have a deficiency.

Hang in there!

Mozart, This is what you posted in a previous thread:

I did sleep for 10 hours, but about 4 or 5 of those hours are not a very deep sleep. My eyes are closed and I'm in bed, but I'm still
conscious.

You are telling us that you are sleeping full nights, but sleep is not defined as eyes closed and in bed. If you are conscious, you are NOT asleep. And if you are are only getting 5-6 hours of sleep per night, you are NOT sleeping a good night.

Even if your therapy is great for 5 hours a night, those other 5 hours of non-sleep are hurting you. You have to solve THAT problem before you can determine if cpap is helping you or not.

Hi Mozart,

We have spoken on Paxil Progress about apap therapy as an FYI.

To recap my story, I have been unable to stay asleep on my machine for any significant amount of time. I started therapy in February of this year. Finally, last night, I had moderate success which I will get to in a minute.

Anyway, what is frustrating about this therapy which you are discovering is there can be a "million" reasons why something isn't working. And if you have to troubleshoot each possibility which makes it even harder when you're tired as heck and can barely function.

Like you Mozart, since I was only able to stay asleep on the machine for slightly over an hour and had a horrific time getting back to sleep on it, I felt initially that I functioned better off of the machine even though it wasn't great. But I felt it was better than practically zero cpap sleep.

Unfortunately, I noticed myself getting worse as my cognitive skills seemed to be deteriorating considerably. Once a temp assignment ended and I noticed that I couldn't do basic things like focus on rewriting my resume, I knew I had to make this treatment work no matter what.

Finally, after several stops and starts, last night I slept 4 hours with one quick wakeup and while obviously I am not ready to bounce around with energy, compared to my previous situations, I feel great.

I guess my point after all of this is I totally understand your frustrations. But just because you feel better off of the machine vs. on it doesn't mean it will stay that way forever if you don't do anything about your apnea. That is why I wanted to tell my story as a caution.

I wish you well.

49er

Have you in fact tried (for a few days in a row) to only sleep e.g. 7-8 hrs? Because many people do that and after a short time in the a.m. feel better than on waking up, and get past the dopey feeling. It's not good to sleep 10 hrs and no doctors have said it is. It may not be a good idea to only get e.g. 5 or 6, but many function quite well that way, with and without apnea (me included), and it's natural, never used an alarm. Try giving yourself a chance to wake up after you're 'conscious', rather than lying there for another 4 hrs or whatever, and see what happens.

Hello Mozart,

I am very much a newbie and this is my first post. I have to say that reading your post made me sad. I have been on my APAP machine for 6 whole days now and I understand the tiredness and exhaustion. After my first night, I felt so tired but noticed a subtle lifting of the fog. There has been no burst of energy and I didn't get the fireworks that I thought I would have after one night! Today, on day 7, I am so tired. I slept for 9 hours straight and then went back to bed for another three. So I would consider today a bad day of exhaustion but I am not giving up. Why? Because I didn't snore, didn't deprive myself of oxygen 104 times per hour and know that it will take a long time to replace the energy that has been zapped out of me for YEARS. Plus - I want to be around for years to come for my dear boyfriend and family. I have also taken the same class of anti-depressants as you and understand the horrible withdrawals. I say keep going and try to remember that you are helping your body heal from the year's of no sleep.

Brook

You may have Epstein Barr virus or chronic fatigue syndrome? Possibly a bad mattress?

Honestly the best person to talk to at this point is an actual sleep medicine physiscian or a neurologist. You don't seem to be getting a satisfactory answer from all the above posters trying to help.

If the CPAP machine shows you are getting good pressures and limited RERAS and apneas or other problems, then it may be something totally else.

At the end of the day, its just a box that blows air up your nose with a rubber hose. It's not a guarantee of perfect sleep.

I have been on CPAP for three months and I still wake up tired a lot of times. But my numbers are low. I should go to sleep earlier I know, and remember to put the mask on before bed every single, so things do happen. But even with perfect use, I still sometimes end up waking up sleepy.

You want to sleep great? Smoke a bowl before bed. U will sleep perfectly, your AHIs will even go down and you will wake up refreshed in the AM. .....so I have heard....

Otherwise, you may need to talk to an MD and/or a new mattress salesman.

Mozart22 wrote:

xenablue wrote:Mozart, please consider changing your way of thinking. It's only been 10 days - I've been at this for two years and I still have days I wake up dragging... but...those days are becoming less and less.

Cheers,
xena

If you've been on this for 2 years and still have some bad days, then I don't think xPAP will help all that much. 24 months is an awfully long time.
If you're starting to feel a bit better after all that time, then it's probably due to other factors like less stress, losing weight, exercising more, diet changes,
secondary health condition, etc.

Some other factor must have changed for you to have more good days than bad. I don't think it's realistic to have to use an xPAP for 24 months
and then assume that is what helped with the fatigue, sleep debt be darned.

Mozart - even if I felt like crap every morning after two years of CPAP, then I would STILL tolerated the therapy!!! Ya know why??? Because during my sleep study (which I actually slept for 6 hours) I stopped breathing NINETY SIX TIMES PER HOUR!!! As soon as they put the CPAP on my events dropped to almost ZERO.
I've been monitoring and tweaking my therapy every night and my AHI hasn't been over 0.9 in that two years, so for ME (and so says my neurologist) I am one of the lucky ones for whom XPAP therapy is the perfect solution to my OSA.

You see, even if things had changed with my other health issues, my CPAP therapy would still be a success - the numbers don't lie. Every now and then I go to my binder that has all my lab and sleep study results, to remind myself how serious my OSA is without CPAP.

IMHO OSA is a little like my T2 diabetes - I could forego testing my glucose and eat whatever the heck I wanted and pretend I don't have diabetes - OR - I can rigorously test every new food, monitor my glucose so I can SEE that I'm not killing myself with DeNial. I don't want to suffer the horrible side-effects of untreated diabetes, nor do I want to die of those from untreated OSA.

I hope this explains why, despite having an occasional less-than-ideal night's sleep, I continue to see that CPAP works.

Cheers,
xena

Xena, thanks for telling your story. I'm sure you've given encouragement to many who read it.

Mozart22; I'm truly sorry if anyone led you to expect an overnight miracle.
In my case, it feels like a little one, but it took months and months for it to take shape.
It was not a passive process,(would that it were),
but it required a great deal of effort, patience, and imagination.
(and the help and support of the kind folks on this forum)
I sincerely hope you are up to it; because I believe it is totally worth it.

I've only been on this journey a little longer than you have, Mozart, having started on CPAP therapy on November 27. I too had a little bit of that mostly-buried hope of a 'miracle cure', no matter that I knew it wasn't likely or common based on everything I'd read. But I couldn't quite kill all the hope that I'd be one of the 'lucky ones'.

Alas, I wasn't one of the lucky ones. I still wake up tired most of the time. I've been looking at reports and have tweaked a few settings, changed my mask, added a pulse oximeter and Zeo sleep manager so I can see what *kind* of sleep I'm getting, blah blah blah, and I continue to monitor things. And to be patient.

On the other hand, just this past Friday night, I wasn't feeling at all well and so I went to bed without putting on any of the equipment. No mask, no machine, no pulse oximeter, no Zeo. I felt as if I slept okay, didn't remember waking up. But I was still tired when I got up...and for the first time since I'd started CPAP therapy, I was reallllll tired later in the day and felt like I needed a nap. In fact, I unintentionally and inadvertently nodded off while reading! I haven't felt *that* tired since I started, no matter how tired I did feel.

So obviously the therapy is doing me *some* good, even if it's not the immediate all-out miracle I'd hoped for.

Patience and persistence. You either learn it or you don't, your choice.

Mozart - even if I felt like crap every morning after two years of CPAP, then I would STILL tolerated the therapy!!! Ya know why??? Because during my sleep study (which I actually slept for 6 hours) I stopped breathing NINETY SIX TIMES PER HOUR!!! As soon as they put the CPAP on my events dropped to almost ZERO.
I've been monitoring and tweaking my therapy every night and my AHI hasn't been over 0.9 in that two years, so for ME (and so says my neurologist) I am one of the lucky ones for whom XPAP therapy is the perfect solution to my OSA.

That is so true. Even if we don't feel the improvement, the simple fact that we are no longer damaging our internal organs and our brain with oxygen starvation is a huge improvement. Without treatment, I have about 79 events per hour. It could actually be worse since my sleep study only did titration for 2 hours and 15 minutes. Many people are worse during REM which is usually more during the later hours of sleep. So, my average could be worse if the whole night is taken into account.

With treatment, I am rarely above 2 events per hour, and often below 1.

Also, keep in mind that even people without sleep apnea have bad nights and feel tired sometimes. CPAP treatment doesn't automatically make you stay asleep all night. That's not what it is designed to do. It is designed to keep you breathing as long as you are wearing it. If you aren't sleeping long enough, or you have a lot of interruptions, then you will still feel tired. But as long as you use your machine with the correct settings for you, then you will be getting good oxygen during that whole time.

Without cpap treatment, you will still be oxygen starved. You may think you are sleeping better, and you may be unconscious longer, but you will be killing yourself slowly.

If you are sleeping worse with your machine than before, it is probably because you need to get used to it. You may need to adjust your mask better or find a better mask for you. You may need to try straight cpap or use a tighter range of pressures if the change disturbs you. You may need to allow for some time for your brain to TRUST that alien that is stuck to your face. Your brain has spent years trying to protect itself by waking you up to keep breathing. Now it needs to learn to trust the machine and relax and let you sleep. It takes time. And patience.