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Still tired after years of CPAP therapy
#1
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!
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#2
I'm relatively new to this (CPAP... not apnea) and I am not familiar with your machine. Does it show your AHI for the night? If not and your machine is data-capable (others can help with that) then I would get some software (such as SleepyHead) to view your CPAP data and see how it is working for you. If it has been 11 years (or even a few years) since you last had a sleep study, perhaps you should go in for another. It is possible that your needs have changed and 11.5 cm H20 of pressure is no longer sufficient for you. The only way to really know that is to go in for a sleep study but your machine's data can also clue you in to that.
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#3
(03-17-2015, 05:15 PM)sotiredallthetime Wrote: 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!

Hi sotiredallthetime,
So are you saying you have been using CPAP for 11 years with no improvement?
Do you use software to track your progress? How do you know what your AHI is?
You state that you use your CPAP nightly; does your machine give you any kind of data? Have you replaced your machine in the 11 years? I know it seems like a lot of questions, but it's hard to read between the lines.
I am not a doctor nor have any medical experience, but it sounds as if you need a
complete physical, possibly find a doctor who will look into this in more detail.
Good Luck,
OpalRose


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#4
A small percentage of folks (say 15%) feel un-refreshed even after quite a while on this treatment. Some have sleep study data that shows a rather low amount of Stage 3 and 4 sleep, or extremely low REM sleep. There are others who exhibit sleep disorders where apnea is only part of the syndrome. Narcoleptics sometimes have mild or moderate apnea that seems to be reduced by CPAP, but they leave unsatisfied. If you had sleep studies done in a lab/clinic setting, you should get your doctor to review the findings again with specific question of what percentage of deep (SWS) and REM sleep you had. If either is single digits, you have a harder road than most of us.

You can converse on many new levels if you get some software and data downloads to aid our observations and discussions. This will be harder with the REMstar Plus, as it's data in rather limited.

I agree that you should get a refresher trip to the sleep lab, and upgrade your machine to a fully data-capable version.

QAL

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#5
Hi sotiredallthetime,
WELCOME! to the forum.!
I'm sorry to hear that you aren't noticing much improvement after years of CPAP therapy.
You might talk to your doc about this, maybe get another sleep study to see if anything has changed from your last one.
Hang in there for more responses to your post and much success to you.
trish6hundred
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#6
I would definitely be doctor shopping for one that's going to be proactive after 11 years.
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#7
It sounds to me like you and your doctor need to look at other things as well. Common problems in young adults can include mono, thyroid, anemia, etc.
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#8
If you've been in tick country, lyme is a possibility.

The idea of chronic lyme disease is a very polarizing topic though...

There are tests, if you find a lyme friendly / lyme literate doctor.

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#9
I agree another sleep study and a new machine that is full data capable would do you justice
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#10
Greetings sotiredallthetime,

Reading your post, I could not tell when the two sleep studies were done. If the most recent sleep study was over 5 yrs old you need a new sleep study. Also, as mentioned earlier, Please get a data capable machine. Without the nightly data it is difficult for you or a medical person to know what is going on with your sleep on a nightly basis.

Also, if it were me, I would get a different primary care person. Meds are not the only option and, if it were me, I would be exploring other options.
Evpraxia in the Pacific Northwest USA
Diagnosed: 44 AHI when supine, O2 down to 82%
Treated since 20 Sept 2014:: 0.7 AHI, Settings 7-15, EPR on Full Time at Level 3
Better living through CPAP/APAP machines!
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