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About Nocturne

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  1. @NightmoreHi, sorry to hear you're not doing so well. I went through this type of period myself twice (tried Xyrem for two trials of three months). For me it also resulted in a very dark mood, and ultimately I decided it had to go and I had to find other ways of coping. It's different for everyone. The stress-part you mention is very important, even though quite subjective. Eventually finding ways to cope and to be at ease with the do's and don'ts is maybe the most important part. This is one situation that will not yield to presssure, (Believe me, I found out the very hard way) and it will take quite some time of experimenting to find out what works for you. There's not a one-size-fits-all solution that guarantees wakefulness, although I can say that staying active during the day, avoiding too much sugar and carbs and finding coping mechanisms for naps is very important. You have to get to know your body and how it responds in different situations. Documenting that (even if its a small notebook with daily times, food etc) gives you a sense of some more control and will also help with the foggy memory. You will find patterns quicker this way and get a sense that you're - not really controlling but at least - influencing what's happening. Sleep is very sensitive in ordinary people, and even more with us. And it's something you can't force into a mold. Also: a very big wakeup for me was (eventually) discussing it with others. You will find out that there are more people with lack of sleep, lack of attention and other difficulties in life that seem to frustrate them. Try not to read 'general notices' on sleep and productivity, because those rules just don't apply to us and even others. You have to find a way to restore some confidence in yourself and your body. Key is the idea that humans and the human body and brain are very adaptive, if given some time to adjust they will find a way. And when the going gets tough: try and find some distractions, be it gaming, posting here, writing, listening to music, etc. (in my worst period, about 3 years ago I was afraid of falling asleep, afraid of waking, afraid of everything, and what eventually got me through is plugging in the old iphone and listening my favorite piano music (Keith Jarrett) whilst lying in bed. Hope this helps somewhat, although it's probably not what you want to hear right now.
  2. @Pereise1That's a lot of interesting information right there, glad I joined the discussion since I've been figuring a lot of this stuff out for myself the past few years. To answer: after two unsuccesful trials with xyrem I have been faring quite well without medication. I generally don't eat a lot during the day, at least no heavy meals, and drink a lot of water, but that gets released quite fast, which would be explained by the vasopressin-part. As I already mentioned: I'm a fulltime artist, so I have a studio where I get to make my own hours, which makes coping a little easier, although keeping productivity up is still a hassle. I also work on large murals, which means I might be very active for a week or two (on my feet, and pushing through sleep attacks) and then recovering in my studio for the next week or two. My wakefulness seems very much tied to periods in which my main wakeful hours shift every week or two. I have tried xyrem for a while, but found its effects on my general mood quite bad. Did two trials of about three months each, slowly building up, but both times ended up with bouts of severe black mood, which I normally don't have. I also quite disliked the idea of being tied to this expensive drug for the rest of my days, and worried about being blacked out during the night. During the past two years a shift occurred in which general symptoms and severity of especially the hallucinations/hypnagogic state, lessened. At the same time my water/hydration management got out of whack, which stopped me from getting enough exercise. For the first time in my life I nearly fainted during exercise, which was a red flag. Also my heart seems to have trouble pumping enough blood, which could relate to dehydration yet again. Especially severe conditions like exercise or going on a rollercoaster made me feel very bad and light headed. While general wakefulness increased and cataplexy is quite manageable, my body does feel quite distressed all the time. Lots of aches and small things I never used to have: shaking muscles, especially after carrying stuff, a lot less general energy and trouble relaxing. As I also already stated I see quite a pattern in the cycles of dehydration, bodily stress, histamine release and breathing: each are very indicative of a sleep-attack onset, which (if not suppressed) occur just about every 2 hours. The attacks have shortened somewhat during the last two years. Oh, and I tend to do one test per year on general health/vitamins, which (even when heavily supplemented) always show very low vitamjn D and suboptimal B12. I keep a dated journal with experiments to improve wakefulness and productivity and also write down dreams and hypnagogic experiences in my sketchbooks. So there's a lot of stuff I'm leaving out here, but this is a general impression of the current state. Edit: I would be quite interested to know if you have solved your mold issue, and how. The last studio I had, and especially the one I have now did have some issues with mold that had to be resolved before moving in. Never thought about that. Could I be more susceptible to this by way of the low vitamin D/lowered state of immune response? Also: how would one best compensate for the absent AVP? I have tried upping my water intake to levels where I go to the bathroom more (now I go about two or sometimes three times every day, even when drinking up to 3,5/4 litres) but it's unreasonable to be chugging even more water I think. Also I just don't feel when I'm dehydrated: there's no real thirst, just as there is (almost) no sense of smell. I'm 6'8, so 4 litres is about the optimal I can go for during a day. I also tried drinking water with salt in it, which does seem to help with the tingling hands and feet.
  3. Hi guys, new here Seriously interesting research going on here. I've been trying to document everything I can find on the subject ever since my MSLT. Some questions regarding to the subject matter above: 1. Regarding to the interaction of Orexin and Histamine and water/electrolyte intake: ever since the symptoms worsened somewhat during the past two years, my skin and body seem to show what I would call symptoms of dehydration. (red indentations when leaning on things that don't disappear). Is there any research on this interaction? (both histamine and orexin are also involved in water/hydration of the body). While my wakefulness in general hass increased, I notice that my body produces much more histamine, or at least symptoms thereof: I somehow have the skin-writing thing now (a form of urticaria) which also increases a lot just before a sleep attack. Also the body temperature rises a lot in that period and blood-flow seems to become stagnant. (tingling hands, feet) 2. Is there any research on airway-function during the day (and leading upto a sleep-attack)? I'm a singer and swimmer, and in both my airway and long-function seem to change drastically when on the verge of a sleep or cataplexy attack. Also bodily posture and muscle activity seems to lower a lot in general. (in particular skeletal muscles seem to relax, the throat becomes narrow and particularly the exhale part of breathing is virtually non-existent or very passive). 3. I somehow have lost a lot of my sense of smell and taste during the past 1,5 year. Which is also pretty annoying and perhaps tied into the dehydration symptoms (nasal irrigiation is pretty much non-existent). The body gets used to cataplexy somehow (it seems to become much more rigid when the symptom arises). But I'm trying to find ways to optimize my productivity inbetween sleep and cataplexy episodes. I'm a fulltime artist, and one way I've found to deal with the crazy dreams and hallucinations, is by documenting them to use for my work. This makes you more curious as to what is going to happen, rather than afraid. But there are certain places where I had bad experiences that seem to take my mind immediatly to the spooky stuff. Thanks for this interesting forum, I now have a place to read up on research en try to explain what I've found so far myself.