After a year of CPAP.. still TIRED!

[DreamToSleep]

So it has been a from starting my CPAP treatment.

I am not satisfied. I still wake up tired. I cannot focus, and my memory is getting really bad.
I have taken skipped work many days only to have a couple more hours of sleep!
Yes, I am a little bit more energetic once I get out of bed, yes, I do not NEED a nap every day, but I am still feeling tired, especially after sunset.

I have tried.. everything.
Changed device settings, slept 8 hours, 10 hours, 6 hours..
With humidifier, without..
winter.. summer..
everything.

What is worse, my memory is worsening every day.
I used to have a VERY VERY sharp memory. Like one of the best ever.
Now I can't remember what I had for dinner yesterday.. or breakfast today.
I am unable to focus.. at all.. I was SMART. very SMART. (I have a PhD)
but now... OMG I am unable to solve a simple math problem..!

Please advice me on what to do!
Not only about CPAP, but ANY other advice.
what tests to do..
blood.. hormones.. etc.

Thank you...

[Julie]

Are you using software to track progress? What do the graphs say? Without much to go on (AHI, leaks, pressure settings) it's hard to advise. And when's the last time you had a regular check with labwork, etc? Not everything's related to OSA or Cpap. .

[DreamToSleep]

Julie, thank you for the reply.

Last time I checked my AHI was below 4.0. I am also comfortable with the mask and the pressure.

What blood tests do you recommend that I do?

[Sheriff Buford]

If you are "cpap compliant" all your numbers, leak rates... are ok, then appears you have another medical condition. Looks like it's doctor-time.

Sheriff

[Daydream Believer]

Sounds a lot like me with CFS/ME. Hope I'm wrong though. Look it up.

Doc will need to rule out other causes - thyroid, anemia, etc.

Amy

[bwexler]

Before we can help we would need to know a lot more about you and your cpap therapy.

First, you can go to the user control panel and change your equipment settings from pictures to text so we know exactly what you are using. Then tell us the settings. Are you using software? If not you can dowload SleepyHead software for free and learn how to use it. There is help available here.
It might also help to know if you are male or female, young or older (going through menopause?), what part of the world you live in, what type of work you do (ditch digger or office worker).
Your sleep hygene can make a big difference.
What drugs do you take, prescription, OTC or other. Tobaco and alchahol consumption.

When was your last full physical exam? Did it take longer than 5 minutes?

You probably need a full battery of blood work, but 2 tests many doctors over look are 25 Hydroxy Vitamin D and VAP, which is an advanced cholesterol test that provides a more complete breakdown of the lipid components.

[robysue]

And in addition to everything else the others have said that we need to know, we also need to know some things about your sleep patterns:

Do you find yourself waking up frequently at night? If so, how often?

Do you find yourself very restless during the night? Do you think you're spending much of your sleep time in very light sleep?

Do you have any chronic pain issues?

Do you have other medical problems that are being treated? How well under control are they? Are you on any medications?

[Wulfman...]

Julie, thank you for the reply.

Last time I checked my AHI was below 4.0. I am also comfortable with the mask and the pressure.

What blood tests do you recommend that I do?

You're still not giving us any information to go on. We need to know what settings are in your machine, what your leak numbers look like (please post any software reports so we can see them).

The heated humidifier in your profile is incorrect.

Since your profile shows an Auto CPAP, my first guess is that you're using a range of pressures that is/are suboptimal and/or the pressure changes are disrupting your sleep. That will leave you feeling like you're unrested......which may be true. The pressure changes can bump the user out of the needed sleep stages.


Den

.

[robysue]

Julie, thank you for the reply.

Last time I checked my AHI was below 4.0. I am also comfortable with the mask and the pressure.

When was the last time you checked? And did you check just the machine's LCD or did you check the data in something like SleepyHead or Encore?

If the long term AHI is just below 4.0, it's possible that you are still having some pretty nasty clusters of events on most nights. And that could explain the on-going daytime sleepiness issues and brain fog. Are you willing to install SleepyHead and see what the daily graphs look like?

[kteague]

Probably feels like a lot of questions coming at you. It is in the details that you'll be able to narrow things down and get more targeted suggestions. It can be a process of elimination. Making sure your cpap treatment is therapeutic is first. Ineffective treatment can leave you with symptoms that will have you chasing down rabbit trails unnecessarily. Aside from cpap treatment, just because of my own experience, I always wonder if there is any problem with limb movements or with RLS. Then my mind goes to medication side effects, deficiencies or imbalances in the body, or medical conditions. You've got a good team here to help you hone in on possible issues. Have fun answering the questions.

[zoocrewphoto]

Julie, thank you for the reply.

Last time I checked my AHI was below 4.0. I am also comfortable with the mask and the pressure.

What blood tests do you recommend that I do?

Have you looked at actual reports from various nights?

A couple years ago, after I got my first machine (with full data), my mom asked to use my machine for a partial night as her machine didn't have data. Her ahi was only 3.4, but she had a cluster of longer events, one over a minute long. So, her numbers at her pressure setting looked good, but she was still experienced bad events, just not as many of them. She got a new machine with a range of pressures, and she no longer has longer events.

There is more to treatment than the ahi.

Other problems could be waking up frequently. Even with a great ahi, those disturbances will ruin your sleep. Some people are very sensitive to pressure changes, so a range of pressures can cause problems while somebody else will sleep right through them with no problem at all.

Many medications will make people feel sleepy, and it could be worse for some people. There are lots of medications that have the potential side effect of sleepiness that don't bother me at all, but they make my mom very sleepy.

Pain at night can cause major sleep problems as well.

This will take some detective work to figure out.

[CrazyLife]

You sound a lot like me. I started having extreme fatigue as well as memory issues about a year ago. The changes have been subtle but I can tell that I'm just not the same as I was before (only 32 yrs old). Since I have started CPAP I've seen a minor improvement in fatigue but nothing to write home about. I thought it would solve all my problems. It didn't. I decided to be proactive in finding a diagnosis and ordered a complete blood panel online thru one of the various online lab testing sites. For about $250 I was able to get more blood tests done then any doctor has ever ordered for me. The results indicated I had a pituitary issue which likely has existed since I was born. None of the doctors in my childhood ever did comprehensive blood work. Doctors only test based on symptoms and they are restricted based on the insurance companies they contract with. Reason I bring this up is it sounds like you may be suffering from a hormone issue. Memory problems can be a result of many things but from my experience this could be related to a growth hormone deficiency. There is only one way to find out for sure and that is to order a complete workup on your own. Once you have the lab results bring them to your doctor and he/she can the recommend treatment

[DreamToSleep]

Thank you everyone for your replies.
And please accept my apologies for replying late, as I got overwhelmed by work.

Here is a link for all my data for those kind enough to go into the details.
https://app.box.com/s/soof99n99mqkox7a6g42
I tried viewing them on sleepyhead and encore, but for some reason I am unable to. Some error message comes up saying no data is available.

Let me tell you a little bit about myself before I reply to each question.

I am 30 years old man.
Used to be very SMART.
I do not smoke, do not drink, and am working as a researcher.
Most of the time I am working on a desk in an office.
No medical conditions or drugs.

PhD did put alot of pressure on me, because of the difficult requirements.
I became very stressed, very stressed. I noticed I started to gain weight, until I reached 100+ kg. (220+ lbs)
When I reached 25 years old, I started to notice that I sleep alot. I only think about sleeping, and sleep all day in weekends. ALL DAY.
I thought this was normal because of PhD stress, but after graduation (29 yeayrs old) and going to work, this has started to affect my performance.
I became unable to process simple information, and faced difficulties completing very simple tasks. I cannot wake up happy. Always sleepy, always tired, always dizzy, and always angry. So I decided to find a solution.

I searched alot before I found out about sleep apnea. But then, I became sure I have one. Indeed, after the medical exams, the results showed that I have AHI around 29, and using CPAP is a must in my case.

I started using the CPAP, which showed AHI<5. I started to feel more energy during the day, but WAKING UP is still very difficult. I stopped napping every day, and my weekends are now more active.
Yet, I am still facing the same problem I faced during the last 10 years of my life, which is waking up. Every day I feel it is the impossible mission. I cannot wake up happy. Always sleepy, always tired, always dizzy, and always angry, exactly like I was before.
I started to skip work just to sleep an hour or two more. This is affecting my life, even while using CPAP.

So I decided to take another route in solving my problem.
I consulted with an experienced nutritionist and crafted a program for me to lose weight. I thought this should definitely help. I hit the gym, and watched out for what I eat.
My weight went down from 100+ to 83+ kg now. I feel very refreshed during the day, and my mood is good most of the time... except when waking up. I cannot wake up happy. Always sleepy, always tired, always dizzy, and always angry. Still the same, no change, and I am still skipping work just to sleep.

I usually sleep long enough. 13+ hours per day on vacations, and 9+ hours on weekdays.
I never sleep less, yet, waking up and feeling refreshed is always a problem.
I do not wake up at night, even for the bathroom.

One more thing, I am married, and sexually active. 3~4 times per week.
Could this be a major reason for the sleepiness I am having?

PLEASE HELP ME.

Now let me reply to your questions in specific.

Julie,
I used to track my progress the first 3 months to ensure I am using the device properly. Then, I only checked occasionally, and always saw AHI<5, so I knew the problem is not the device. Can you please advice me what labwork to do exactly?

Sheirff,
Which doctor shall I visit and what to say exactly?
I tried going once to a general doctor and when I mentioned the CPAP treatment he said it's not his field. I went back to CPAP doctor and he said I should just continue like this using CPAP!

Daydream,
What is CFS/ME? would you please help me with more details?

bwexler,
Thank for the information.
I replied about my details above, and changed my equipment to text.
Can you please tell me more on which blood tests to take?


robysue,
I sleep alot, and when I do, I never wake up.
When I open my eyes, I am tired. Very tired. Always want to sleep more. Always.
I sleep 9+ hours on weekdays, and 13+ on weekends.
No medical conditions or medications.

Wulfman,
Thank you! This is the first time I think of this.
What settings do you recommend that I use? Please refer to all my data on the link above.

kteague,
Now after I answered most questions, what advice do you have?

zoocrewphoto,
Thank you for the details. I would be thankful if you help me analyze my data in the link above.

Crazylife,
How would I do a complete test online?
I do not live in the US, but in eastern asia.

Thank you, and again sorry for the late reply.

[Julie]

Hi - I'm not a doctor or anything close to it, though worked all my life in teaching hospitals, mostly in neuro. and related research depts - long enough to know that it would be best for you to be talking to your GP and asking for e.g. an appt. with a neurologist to rule out any serious problems that you cannot hope to diagnose with a bunch of relative strangers on the net here, much as we'd love to be able to help, and certainly can come up with an endless array of guesses. There are way too many conditions, problems, etc. that may be related to OSA/Cpap, and way too many that are totally unrelated for any of us to begin going down the right path. You may (unlikely in a young person - but not unheard of) have the beginnings of some possibly quite serious problem, or not, but please go the medical route for answers now, because you need them... whether or not you sort out minor issues with Cpap. A neurologist will have questions (and possibly tests) that you cannot anticipate being asked unless you're already very knowledgable about conditions that have nothing whatsoever to do with OSA.

[DreamToSleep]

I was able to download my data fortunately.
Please check my reports on this link.
https://app.box.com/s/kb542k0w1ea9t144dyjh


I would be thankful if you tell me in details if you see a problem.

Thank you.