I don't have CFS but i have something that makes normal living impossible, My 'body clock' which is not my circadian rhythm is stuck at 7am-6pm and wants to move forward unpredictably, melatonin has no effect on this clock but will grudgingly move my circadian rhythm but that has not effect on my sleep time nor can i change the 'body clock' with any known means (blue light/full spectrum light, blue light blocking glasses, melatonin)
Basically my night of sleep consists of two parts i call fundamental sleep (first 7-8 hours) and supplemental sleep (2-3 hours), If i am supplemental sleep deficient i am unable to concentrate, i have a fair amount of automatic behavior (like narcoleptics), i am 'burned out' and relatively tired and caffeine has no discernible effect on me whatsoever. If i am fundamental sleep deprived i am very exhausted and tired, more automatic behavior, and its a different kind of tired (hard to describe but i'm sure many of you here know what its like). Caffeine only has an effect in a very specific level of fundamental sleep loss that i have not fully deciphered, more or less then this the caffeine no longer has any effect.
Caffeine will prevent me falling asleep at "night" if i take it within a few hours of sleep if i have gotten supplemental sleep, but with fundamental sleep loss its actions are rather unpredictable. However it has no alertness effect outside the narrow window of fundamental sleep deficiency.
Also no amount of sleep deprivation will move my body clock earlier I cannot find any explanation or theory for this, i think the adenosine threory for this in mainstream medicine is wrong, or its only part of the puzzle.
Even when fully functional (for me) i wake up dazed and feel like someone has been kicking me in the head, my short term memory is extremely poor, my physical stamina is short, my ability to due complex math is almost non existent (i can't learn complex stuff, calculus destroyed me). I wake up by noise easily, and if woken up during supplemental sleep i am likely to be unable to fall asleep again screwing up that day and possibly the next few till i recover.
I am probably missing a lot of symptoms, i have had this all my life and though it slowly gets worse as i get older i am used to it and have adapted to what i go through, or don't know any different, having lived with people who are normal i am surprised by how their sleep reacts to stressors compared to me.
Naps are not fun, short (under 1 hour) naps can't be done and if forced zap my mental functioning and are a complete clusterf**k. I need to sleep 2-4 hours to have any beneficial effect (screwing up my ability to sleep later) and i'll often wake up with a strong headache, though sometimes with no headache at all but the headache or no has little effect on my condition, its just more or less unpleasant. I try to avoid naps.
I have tried more treatments then i can keep track of, to no effect or very paradoxical effect, i am wary of medications because they can cause life threatening reactions, for example effexor caused some type of stomach problem where i was throwing up all day everyday whether i had food in me or not (prior to this i had no stomach issues of any kind), and was on gravol injections for several weeks till it settled down, and to this day having not taken it in over a decade i have to take HCL with food and domperidone (which took years to figure out) because i feel sick to my stomach and like i have a 20lb lead weight in my stomach (they can't figure out whats wrong with me there either, and not form a lack of trying). I have gotten used to the nausea. Interestingly 5HTP will make me throw up, dose dependently, low doses i can keep myself from throwing up, higher doses not so much.
Neither 5HTP or tryptophan have any effect on my sleep problem.
I have had sleep studies that rule out apnea and other standard disorders, they did notice my delta sleep was less then usual but still there.
I appreciate any ideas you have or even things reading this brings to mind. I have tried many treatments, and i can tell you what effect it had if someone mentions something.
Basically my night of sleep consists of two parts i call fundamental sleep (first 7-8 hours) and supplemental sleep (2-3 hours), If i am supplemental sleep deficient i am unable to concentrate, i have a fair amount of automatic behavior (like narcoleptics), i am 'burned out' and relatively tired and caffeine has no discernible effect on me whatsoever. If i am fundamental sleep deprived i am very exhausted and tired, more automatic behavior, and its a different kind of tired (hard to describe but i'm sure many of you here know what its like). Caffeine only has an effect in a very specific level of fundamental sleep loss that i have not fully deciphered, more or less then this the caffeine no longer has any effect.
Caffeine will prevent me falling asleep at "night" if i take it within a few hours of sleep if i have gotten supplemental sleep, but with fundamental sleep loss its actions are rather unpredictable. However it has no alertness effect outside the narrow window of fundamental sleep deficiency.
Also no amount of sleep deprivation will move my body clock earlier I cannot find any explanation or theory for this, i think the adenosine threory for this in mainstream medicine is wrong, or its only part of the puzzle.
Even when fully functional (for me) i wake up dazed and feel like someone has been kicking me in the head, my short term memory is extremely poor, my physical stamina is short, my ability to due complex math is almost non existent (i can't learn complex stuff, calculus destroyed me). I wake up by noise easily, and if woken up during supplemental sleep i am likely to be unable to fall asleep again screwing up that day and possibly the next few till i recover.
I am probably missing a lot of symptoms, i have had this all my life and though it slowly gets worse as i get older i am used to it and have adapted to what i go through, or don't know any different, having lived with people who are normal i am surprised by how their sleep reacts to stressors compared to me.
Naps are not fun, short (under 1 hour) naps can't be done and if forced zap my mental functioning and are a complete clusterf**k. I need to sleep 2-4 hours to have any beneficial effect (screwing up my ability to sleep later) and i'll often wake up with a strong headache, though sometimes with no headache at all but the headache or no has little effect on my condition, its just more or less unpleasant. I try to avoid naps.
I have tried more treatments then i can keep track of, to no effect or very paradoxical effect, i am wary of medications because they can cause life threatening reactions, for example effexor caused some type of stomach problem where i was throwing up all day everyday whether i had food in me or not (prior to this i had no stomach issues of any kind), and was on gravol injections for several weeks till it settled down, and to this day having not taken it in over a decade i have to take HCL with food and domperidone (which took years to figure out) because i feel sick to my stomach and like i have a 20lb lead weight in my stomach (they can't figure out whats wrong with me there either, and not form a lack of trying). I have gotten used to the nausea. Interestingly 5HTP will make me throw up, dose dependently, low doses i can keep myself from throwing up, higher doses not so much.
Neither 5HTP or tryptophan have any effect on my sleep problem.
I have had sleep studies that rule out apnea and other standard disorders, they did notice my delta sleep was less then usual but still there.
I appreciate any ideas you have or even things reading this brings to mind. I have tried many treatments, and i can tell you what effect it had if someone mentions something.