I’d give them to my doctor if I thought he’d read them.
OFF SLEEP AIDS
-I do not naturally become sleepy until at least 4 am. With training I can shift that a couple hours earlier. It is very difficult bordering on impossible to go to sleep earlier than that though. I used to think I had insomnia growing up as it took me hours to fall asleep. When I fall asleep at my natural bed time however, I fall asleep within 10 minutes.
-I do not feel rested when I wake up unless I get at least 11 hours of sleep. This is not due to waking up during the wrong sleep stage, as I allow myself to wake naturally without an alarm.
OFF MODAFINL
-After 1-2 hours of waking up initially, my brain is hit by a wave of powerful sedation and fog that lasts hours. I cannot concentrate at all during this, and completing even simple tasks is very difficult.
-I can alleviate this by napping, during which I experience hallucinations, voices, sometimes sleep paralysis and vivid dreams. (Can be highly disturbing)
-The sedation does not wear off until 5 or 6 pm at night.
-If I drink (large) amounts of caffeine, it can make me feel normal for a time. However it does not prevent the sedation, merely pushes it back giving me a few more hours of alertness before it strikes. This can mean when the sedation does come it lasts until as late as 10 pm on some occasions. If I try to go to sleep for the night during one of these sleepy spells, I simply wake up very shortly after and am unable to fall back asleep for hours.
ON SLEEP AIDS
-I feel well rested after just 8 hours of sleep, even 7 is ok.
-However I will still be hit by a wave of sedation 1-2 hours after waking up the next morning unless I take modafinil
ON MODAFINIL
-I do not get the sedated feeling during the day. It does not energize me, I can still feel tired, but I am not SLEEPY. I can focus and go about my day normally and function well.
-Caffeine effects me as I imagine it does a normal person. It gives me an energy boost. If I drink large amounts of caffeine on this med it makes me very jittery and crazy. Just a simple cup of coffee works fine.
-If I do take a nap for whatever reason (maybe I didn’t sleep well the night before or just had a long day), I do not experience hallucinations, voices, sleep paralysis, etc. If I do fall asleep at all it is very light. I can’t take modafinil too late in the day or I have trouble getting to sleep at night, not because I’m not tired but because I’m not sleepy.
IMPORTANT NOTE
-With 11 hours sleep REGULARLY, I do not experience any symptoms of psychosis. Even under stress or other regular triggers the symptoms will not appear or if they do are very very mild and brief. I also do not appear to get sleep spells.
-With 8-9 hours of sleep regularly, my symptoms are there but mild unless aggravated by typical triggers i.e. stress in which case they can get bad.
-Less than that regularly I can get really bad symptoms, and even go into psychotic episodes. Since I have gotten better at managing my sleep and have literally changed my life to accommodate my sleep issues I have not had a major psychotic episode in 3 years now despite not being on an antipsychotic for the grand majority of that time, only for a few months here and there.
summary: Sleep is incredibly important and I’ve drastically changed my quality of life by targeting it. I don’t know if all of this truly is narcolepsy or what, but I am firmly convinced my issues are rooted in my brain’s fundamentally dysfunctional sleep system. While I wish I could regularly get 11 hours of sleep it is INCREDIBLY hard for me to do and have a life on top of that, especially when my circadian rhythm is practically backwards from what a normal person’s is. I hope some day we can understand more about sleep and learn what may cause issues like this and their connection to mental illness.
