7 months still tired.

[BigB504]

I have been using my cpap for 7 months now faithfully every time that I sleep and I am feeling no difference.I am seeing some changes such as no more nightly bathroom trips,my face now has the look,when I wake up that i really was sleeping and a few people say that I am looking better and acting better but I am still feeling the same way as before cpap,very tired and run down.There was 2 days somewhere near the 3 month mark that I felt about half better but it went away.I am thinking that it could maybe be sleep debt that I am paying off or maybe that I am having leaks due to my full face mask or my pressure setting is off.I am going to schedule an appointment in the morning with my primary doctor to try to get a data capable machine.So that I can check my info.But what I was wondering is,have any of you had the same or close to the same experience as I have?

Thank you very much.

[rosacer]

Hi BigB

Your equipment listed appears to be a CPAP. Are you sure you have the good pressure set? some people have discovered the pressure found at the sleep test was not sufficient.

When I started 2 years and a half ago I had a CPAP too the only difference is it was data capable. The Dr had prescribed a pressure of 7 cmH2O (never had a titration at sleep test). I was on that pressure for a couple of weeks, my AHI was what we could find acceptable (although not too low) for a lot of people but I was still tired and not improving very fast at all.

To make the story short, I discovered I needed to have a really lower AHI to feel rested somehow in the morning, I changed to a autocpap and I discovered my real pressure needed was 9.5 to 10.5 cmH2O depending on how I was sleeping ; on the back or the side.

After that it toke me something like a good 1.5 year to paid all the sleep debt I had, don't get discouraged each person needs a different number of months.

It is very important you get a data capable machine and if you can have an auto cpap it is the best. If it happens you don't like the auto mode you can still set it on CPAP mode and use the auto from time to time to check if your pressure is still correct. Yes the needed pressure can change in some cases, going lower or higher with the time.

All the best

[kaiasgram]

I have been using my cpap for 7 months now faithfully every time that I sleep and I am feeling no difference.I am seeing some changes such as no more nightly bathroom trips,my face now has the look,when I wake up that i really was sleeping and a few people say that I am looking better and acting better but I am still feeling the same way as before cpap,very tired and run down.There was 2 days somewhere near the 3 month mark that I felt about half better but it went away.I am thinking that it could maybe be sleep debt that I am paying off or maybe that I am having leaks due to my full face mask or my pressure setting is off.I am going to schedule an appointment in the morning with my primary doctor to try to get a data capable machine.So that I can check my info.But what I was wondering is,have any of you had the same or close to the same experience as I have?

FWIW, in case it has any relevance to your situation -- I haven't been on cpap for as long as you have, I'm at the two month mark. But it's shocking to me and my doctor that despite good apnea treatment I've had no improvement in how I feel. I fall asleep quickly and wake up with a glorious AHI but feel like I've been hit by a truck most mornings. Recently a private sleep doc I consulted with told me that the patients who don't show improvement on cpap often have a history of chronic fatigue, recent or in the past. I don't know if this applies to you at all, but it does to me and may to others on the forum. Chronic fatigue is a syndrome, not a specific diagnosis. There are a number of related conditions on the chronic fatigue/fibromyalgia spectrum that could affect a person's sleep. I just watched a demonstration video comparing the delta wave sleep of a healthy person with the "alpha delta" sleep of a person with fibromyalgia. I don't think researchers know yet whether fibromyalgia causes the "too busy" alpha delta sleep, or if the alpha delta sleep is the cause of the fibromyalgia symptoms. But it was interesting to see.

This is just one of many reasons why excessive daytime sleepiness could persist after getting on cpap, but it's one I hope there will be more research on. If the sleep docs are only looking at respiration and not EEG recordings, they could be missing some important diagnostic information.

I hope things improve for you.

[zoocrewphoto]

It may also be that even with reduced apnea events, that you may still be having some bad ones. When my mom used my machine for half a night (set at her prescription of 10), she had an ahi of 3.4 which is considered good. But when I looked at the data, she had a cluster of 8 apneas within 10 minutes, and one of them was 62 seconds long! That is NOT good.

She got a new machine, apap set 10-15. Within a week, she said she felt a little better and was waiting until later in the day to take a nap. She has had cpap treatment for almost 20 years, but never with any data.

[kteague]

I agree with what's already been said - confirming that your treatment is indeed therapeutic would be #1 on my list of things to check out. If getting a data capable machine is going to take very long to accomplish, you could start with having your doctor order you a 2 week trial period on an auto pap, which should give them an idea how your treatment is going. I'd still want a machine for self monitoring. Do you seem to be sleeping well - like do you wake up often, etc?

Besides OSA, there are other sleep disorders one could be dealing with, like maybe limb movements during sleep. Even when my CPAP was working just fine, RLS & PLMD kept my sleep so fitful I still didn't get any rest. Are you on any meds that could be causing your tiredness as a side effect? What other medical conditions has your doctor tested you for? I would want to be tested for nutritional deficiencies, thyroid function, diabetes, anemias, and cardiac health - for starters. Don't accept anything short of proof that nothing else is going on. My doctor, frustrated with my declining health, suggested my misery and chronic pain could be fibromyalgia or CFS rather than first do due diligence in ruling out identifiable and treatable causes of my residual symptoms. Turned out the major culprit was PLMD with augmentation on the medication for it. After yet another normal test result, my doctor gave me the result in a dismissive manner, like he had done the test just to shut me up. I said, then what's next, because I don't want you to stop until you can give me the test result that is abnormal and explains why I feel like this. Not everyone finds an answer like I did, but there should be a valiant effort. Hopefully you'll find some CPAP adjustments will suffice for you.