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.