Still tired after years of CPAP therapy

[sotiredallthetime]

Hi, I'm a 29 year old male with a diagnosis of obstructive sleep apnea since age 18. In retrospect, I think I actually started developing symptoms around age 13. My BMI is 23. I have had two sleep studies done, both of which state that my numbers improve significantly while on CPAP. However, I still feel exhausted all the time, even when using the CPAP nightly. I don't think I've ever felt completely rested since my early teenage years. I can sleep 14 hours/day if I don't have something important to do. Two serious relationships have ended, in part because I am so tired and sluggish. I just have no energy. At any given time, my favorite thing to do would be to lay down. It's difficult to keep up with work and social activities when I just feel so tired. Doctors have done blood work and said that everything is normal, except for a slightly low Vitamin D level around 30. I have taken vitamin D supplements for years but do not feel any better. The doctors generally tell me that there is nothing they can do. They have offered me stimulants such as Provigil, Nuvigil, Adderal, and Ritalin, but I do not like the way I feel on any of them. Does anyone have any suggestions? Has anyone had better success with an oral appliance than with a CPAP. I know fibromyalgia and chronic fatigue syndrome are more common in women than men, but does it sound like that's what I have? Any help, advice, or suggestions would be greatly appreciated. Thanks!

[Wulfman...]

Please fill out your profile with ALL of the equipment you're using and the settings.
Without any information, we have no idea what to suggest or any clue about what your problem may be.
If you have a fully data-capable machine, are you using software to analyze your data/


Den

.

[Pesser]

Hi, I'm a 29 year old male with a diagnosis of obstructive sleep apnea since age 18. In retrospect, I think I actually started developing symptoms around age 13. My BMI is 23. I have had two sleep studies done, both of which state that my numbers improve significantly while on CPAP. However, I still feel exhausted all the time, even when using the CPAP nightly. I don't think I've ever felt completely rested since my early teenage years. I can sleep 14 hours/day if I don't have something important to do. Two serious relationships have ended, in part because I am so tired and sluggish. I just have no energy. At any given time, my favorite thing to do would be to lay down. It's difficult to keep up with work and social activities when I just feel so tired. Doctors have done blood work and said that everything is normal, except for a slightly low Vitamin D level around 30. I have taken vitamin D supplements for years but do not feel any better. The doctors generally tell me that there is nothing they can do. They have offered me stimulants such as Provigil, Nuvigil, Adderal, and Ritalin, but I do not like the way I feel on any of them. Does anyone have any suggestions? Has anyone had better success with an oral appliance than with a CPAP. I know fibromyalgia and chronic fatigue syndrome are more common in women than men, but does it sound like that's what I have? Any help, advice, or suggestions would be greatly appreciated. Thanks!

You have indicated that you can sleep 14 hours. But how many hours do you sleep on average? Is it possible that you are not getting enough sleep....that is when you are not at it for 14 hours. Did your sleep studies indicate that you were getting enough sleep and the right kind?

[davecpap]

Are you taking any other medications or do you have any other medical conditions?

I saw a doctor for being tired, was diagnosed with sleep apnea, started CPAP therapy.. only to still be tired. I was offered Nuvigil, etc.. but I didn't want to go that route. Turned out it was a medication I was taking that had a larger impact on my energy levels than the OSA. Stopping the medication and CPAP combination is what turned my energy levels around.

[Punchyandtired]

Stopping ambien has helped my energy, though sill tired.

I have "long sleep" syndrome. Meaning= i need up to 12 hours of sleep. It is rare and they think genetic. Maybe you are wired for longer sleeps?

[library lady]

[quote="sotiredallthetime"[] I know fibromyalgia and chronic fatigue syndrome are more common in women than men, but does it sound like that's what I have? Any help, advice, or suggestions would be greatly appreciated. Thanks![/quote]

It could very well be fibromyalgia... I was diagnosed over 20 years ago. If your primary care doc doesn't know what to look for (many don't) then a referral to a rheumatologist is what you need if you want to find out. There are trigger points on your body the doc needs to check for and if you are tender or sore in at least 11 of them, they will probably say "fibromyalgia". My OSA diagnosis was a little over a year ago, and since using cpap I have more energy and I don't nap nearly as often (some days not at all). However, I'm still fatigued much of the time, and I have coping mechanisms that allow me to continue the daily grind. I'm definitely sleeping better now, which is probably what gives me more energy.

EDIT: Another thing I learned at the sleep center a year ago is that I have delayed sleep phase syndrome... my brain is wired to be sleeping from 3AM to 11AM, and probably has been all my life, thus the reason that from childhood it always took me several hours to get to sleep every night. The sleep center offered me a light box to help me change the sleep phase in addition to giving me tips for getting to sleep earlier - such as no TV, Computer or IPhone use (except to answer the phone) in the last couple of hours before going to bed. I chose to modify without a light box, which took a little time, but I was successful. These days, I read for a couple hours before going to bed around midnight.. I get up anywhere from 7 to 8:30 most mornings, and I'm usually asleep within 30 minutes and sleep through the night most nights, sometimes with one wake-up nature call.

[Drowsy Dancer]

Hi, I'm a 29 year old male with a diagnosis of obstructive sleep apnea since age 18. In retrospect, I think I actually started developing symptoms around age 13. My BMI is 23. I have had two sleep studies done, both of which state that my numbers improve significantly while on CPAP. However, I still feel exhausted all the time, even when using the CPAP nightly. I don't think I've ever felt completely rested since my early teenage years. I can sleep 14 hours/day if I don't have something important to do. Two serious relationships have ended, in part because I am so tired and sluggish. I just have no energy. At any given time, my favorite thing to do would be to lay down. It's difficult to keep up with work and social activities when I just feel so tired. Doctors have done blood work and said that everything is normal, except for a slightly low Vitamin D level around 30. I have taken vitamin D supplements for years but do not feel any better. The doctors generally tell me that there is nothing they can do. They have offered me stimulants such as Provigil, Nuvigil, Adderal, and Ritalin, but I do not like the way I feel on any of them. Does anyone have any suggestions? Has anyone had better success with an oral appliance than with a CPAP. I know fibromyalgia and chronic fatigue syndrome are more common in women than men, but does it sound like that's what I have? Any help, advice, or suggestions would be greatly appreciated. Thanks!

I hear you.

My first reaction is, are you sure your treatment is effective? You might have leaks, you might not be using a high enough pressure. If you have a data-capable machine, get yourself a copy of SleepyHead software (free! open-source!) and take a look. Sometimes people have an OK AHI but have clusters of events which means their treatment isn't effective.

[musculus]

Hi, I'm a 29 year old male with a diagnosis of obstructive sleep apnea since age 18. In retrospect, I think I actually started developing symptoms around age 13. My BMI is 23. I have had two sleep studies done, both of which state that my numbers improve significantly while on CPAP. However, I still feel exhausted all the time, even when using the CPAP nightly. I don't think I've ever felt completely rested since my early teenage years. I can sleep 14 hours/day if I don't have something important to do. Two serious relationships have ended, in part because I am so tired and sluggish. I just have no energy. At any given time, my favorite thing to do would be to lay down. It's difficult to keep up with work and social activities when I just feel so tired. Doctors have done blood work and said that everything is normal, except for a slightly low Vitamin D level around 30. I have taken vitamin D supplements for years but do not feel any better. The doctors generally tell me that there is nothing they can do. They have offered me stimulants such as Provigil, Nuvigil, Adderal, and Ritalin, but I do not like the way I feel on any of them. Does anyone have any suggestions? Has anyone had better success with an oral appliance than with a CPAP. I know fibromyalgia and chronic fatigue syndrome are more common in women than men, but does it sound like that's what I have? Any help, advice, or suggestions would be greatly appreciated. Thanks!

Low AHI doesn't mean effective treatment. Check your data in sleepyhead and look for flow limitations.