Avatar universal

Can you help me figure out what is causing my EDS and severe fatigue?

34 year old male.  6' 2" @ 230 pounds
sleep 6-8 hours per night and wake up feeling exhausted 99 out of every 100 days.

Fatigue is contstant.  Always battling fatigue and every 1 out of probably 100 days I have a day where it is almost like my sleep was normal (did I get stage 3 and 4 sleep).
VERY thorough physical every year with full blood work ups sent to Cleveland Clinic.
I have been tested and come back negative for mono, thyroid issues, diabetes, Lyme disease, HIV, Hep C.
Slightly high cholesterol.
negative for sleep apnea (tested)
tested for narcolepsy and IH 10 years ago.  Overnight and daytime sleep study.  No diagnosis.
Negative for cataplexy--never experienced this.  Positive for sleep paralysis (varies in frequency--can be multiple times per day and days in a row or can go month or two without paralysis)
I have dreams very soon after falling asleep or taking short naps.  Almost immediately.
I have suffered from depression before but I feel this is normally due to the constant and daily frustration of battling fatigue every day.  Affects my career, my marriage, and other relationships.
It is not an uncontrollable urge to sleep.  I am simply exhausted and want to sit on the couch and do nothing even though I have anxiety about all the work or personal work I want to do.  

Provigil helped but headaches were too bad and I stopped taking it 10 years ago.  Adderall 10 mg per day 3 times per day (sometimes more required but I try to make sure I maintain my 90 pill per month script.  1 ten mg pill or up to 5 ten mg pills per day.  3 is normal though). Been taking this dosage for 11 years.
Adderall has been the only thing to help me drastically, but it is a band-aid on a wound that doesn't heal.
Cymbalta started in early 2018 but I'm weaning off this currently.  Just didn't feel like the right drug.  Going to try to take 150 mg of Wellbutrin 2 X's per day but specifically hoping this will increase my energy level.

A daily nap helps but only if I take an adderall right before the nap and have some coffee right before the nap.  I will sleep for 30 minutes to an hour and wake up with the adderall and caffeine kicking in and feel good to go for a few hours.

I am wondering if anyone out there was diagnosed with narcolepsy without cataplexy but has had similar challenges.  I am very much wanting to try sodium oxybate under Dr. supervision to see if I can determine if lack of Stage 3 and Stage 4 sleep is an issue.  lack of REM sleep is absolutely not an issue!

Any help, suggestions, or direction to questions already answered like this would be so very helpful.  I am planning to do another sleep study within the next few months.  In particular I want to find a Dr. who listens and can help me.  The last sleep Dr. I had just thought I was trying to score stimulants (which I was because it is the only thing that helps) and thought I just had poor sleep hygiene and quality.  Hoping when I speak with a Sleep Dr. and can share with him immediately that I already take amphetamines/adderall and that is not my goal in seeing him as my PCP already prescribes these that he/she will be able to really help me.

Does anyone out there know what I mean by feeling like you want to just fall asleep but you know you are absolutely not going to fall asleep?  Fatigue/exhaustion that feels like you are about to pass out but even if you lay down you are not going to pass out for a while.
3 Responses
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Avatar universal
Try Nuvigil - better than Provigil perhaps for you
Helpful - 0
Avatar universal
You're so young to be battling all this.  First thing - if you can take some small incremental steps to do one thing
(like eliminate as much fast food and processed food (hard if you are young and on the go)- that stuff slows us down-burdens our systems.  Then try "completely dialing down" digital feeds - tv, phone etc....blue screens do impact your REM
Helpful - 0
Avatar universal
As far as I can tell, your last sleep study was 10 years ago. No one can diagnose from here, and instead of trying to do that yourself, I would do another sleep study now if you are unable to get regular sleep after trying - your story is a bit unclear since you don't explain why you only get 6 hours some nights.
You mention 6-8 hours of sleep every night, but most people need more than 6 so irregular sleeping habits are part if not all of the problem which you mention the last doctor said. I don't see anything in your story that says you accepted that diagnosis and tried to work on sleep habits. You can get a lot of info from sleep disorder books, so I would first work on that issue in conjunction with the sleep clinic study, instead of trying to self-diagnose that there is something different going on.   Good luck - some can't overcome sleep problems while others are able to.
Helpful - 0
Your situation is complicated since you have presumably been prescribed these meds by a competent and caring doctor to promote wakefulness, so it is something that you and a doctor have to work on, because no one here can figure what is right for your situation.
Thank you for your time in answering.  I am not expecting that someone can read this and give me a prognosis.  I would welcome speculation and hypothesis though.  I do not think that Amount of sleep each night is the issue for me.  I can sleep 8–10 hours and feel the same as waking up after 6.  If I sleep less than 5.5 hours and certaily less than 4 (which like most people only do if it is absolutely necessary for a job requirement/project) then My funtionality is low the next day.
What is the theory of the doc who gives you amphetamines/adderall?
He has worked with me for over 12 years and this is the only thing that has helped is the theory I suppose.  I am going to get another sleep study but I think it is beneficial that I won’t be dismissed as just trying to get stimulants since I alreay take stimulants.  Just want to figure out what is causing this.
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