plexicat

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About plexicat

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  • Birthday 04/29/1962

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  1. Hi @Aprilshay Welcome to the forum from me! Sorry to hear about your situation. I too have N/C I was diagnosed last August. About 5 months in (as you are now) I was still trying traditional stimulants and my reaction was similar. Now I'm on Modafinil (Provigil) and the "buzz" is much different for me (and more bearable) than with amphetemine type stimulants. I hope it/when you get a chance to try it, it will work the same way from you and give you some alertness without the crazy anxiety feeling. Your doctor is correct that some insurance companies won't pay for Modafinil until you've tried the cheaper stimulants. With your reactions to the 2 stims he should now well have a "history of failure" argument for them if they balk at paying for Modafinil. And yes Prozac is considered a stimulating anti-depression and may be contributing to or causing your situation. Many doctors, I think, would have tried for Modafinil, possibly been rejected by insurance, gone back to the aderall/ritalin trials, then re-tried for the Modafinil (and/or Nuvigil - a newer version of Modafinil). But in the end you'd have got to exactly the same position you're in now. Without until failing and then hopefully with Modafinil. For me, The Modafinil wakefulness is much for focused and less jittery anxious than with regular stimulants. If when you get to the place when you can take it, no matter what the script says, start small for a few days, 50mg, say so that there's no chance that you take a little too much and think, well this is over exciting too. (50mg should really only feel like one too many strong black coffees) The thing about Modafinil also is that very soon it only seems to last a few hours but if you time it with the busiest parts of your day. those hours of wakefulness might/should/ be less manic than you feel now. You have not mentioned how you sleep and a big part of N treatment is to do with increasing sleep quality. Xyrem does this, increases restorative sleep in Narcoleptics but it's WAAAAAAAAAAAAAAAAAAAY more expensive (retail cost) than Modafinil, (many $1000s per month) so there are (again and usually) other sleep medications that insurance requires you to "try and fail" before many insurances will consider paying for it. So far, even with a script over a year old my insurance will not pay for Xyrem. Fortunately a small amount of Trazodone helps improve my sleep greatly (which makes saytime sleepiness less). I can only imagine how much more Xyrem would help. Some people who find relief in Xyrem even report that they need much less stimulants. Something to help create the best kind of sleep is an important part of symptom relief for a Narcoleptic. Doctors usually deal with keeping you awake before they deal with getting you better sleep. But the sad thing, long term, is that every relief only lasts until your Narcolepsy finds a way of beating it. So experimentation much continue into the future. Sometimes too, over the course of forever, people find that a medication that worked like crap today, when reintroduced later, works as it should. Hope this helps a little. Bottom line, sounds like its time for you to ask your doctor to try Modafilil. And I hope your insurance agrees and that it gives you some peaceful wakefulness while it last. Hugs, plexicat ~
  2. @alw93 You're welcome. When you say "breaking out" do you mean in a rash??? You made no mention of a rash in your first post. A rash with Modafinil is definitely something you should mention to your doctor. Generally, my rule with meds is take minimum possible that allows best return. I hope you find that happy spot soon and it lasts as long as possible. With Narcolepsy its a sure experience that our illness quickly adjusts around most medicines making them not efficient for very long (before having to increase or switch) and every seeming step forward is no long lived. remember too that stimulants is only one side of the treatment (against EDS), there's also sleep issues to deal with (Hallucinations, Fragmented Sleep, Sleep Paralysis etc) and in many cases Cataplexy as well. And these meds need to be matched carefully in the revolving cocktail. So many here have long stories of "trying everything in every combination" over the years . Sadly. And what works a charm for one person does not necessarily work at all for another. Damn Curse!!! Hugs, plexicat ~
  3. @alw93 I too was "rushed" into 200mg x2 (some doctors don't have any patience at all) but I worked out quick that wasn't going to work out (headaches palpitations overkill) and I didn't want to give up on it because of being overwhelmed too early, especially since I'd had some awful experience with amphetamine type stimulants while my insurance balked on the Modafinil bill. Still now a few months in, for me the 200 x2 on my script (morn and after first nap at lunchtime) is too much - the second 200 makes me really feel like a jet pilot, even after a nap, particularly if the nap is a non refreshing hallucinatory one . So what I do is I take 200 when I'm set for the biggest part of my day. So if the afternoon needs more focus I go 100 + 200 or morning vice versa. so 300 total. Maybe eventually I'll succeed and desperately need 200 times 2, but the trouble with any stimulants is that eventually they won't do their thing so well due to tolerance. and 400 really is close, I think, to the maximum dose for Modafinil (Provigil) - correct me if I'm wrong. So, my advice, if you can find happy benefit from 100 x 2 stay there as long as you can. Your body will tell you when it needs 200. I've seen Modafinil described as the great laxative, a great weight controller, and other stuff, so yes, the stuff has an affect on gastro and obviously different for different folks. I guess for me there's some bloating (and farting)... but when I take the 200 it really down below and out behind is just a passing thought because I'm too busy holding onto my hat for the 2-3 hours of "brain acceleration". ...It really does make you (well, me) regular and speeds up the digestive process. So maybe give that a few days/weeks and see how it goes, your body might be in a bit of shock at the constitutional giddy up the medication is encouraging. Always makes me giggle how these brain drugs effect every corner of the body in strange different ways. As long as the benefits outweigh the downside, I guess. Hope that helps a bit. Welcome to the forum from me plexicat ~
  4. @NarcolepsyMom I hope you laughed at the doctor because of your fragrant disregard for safety and the facts about road laws and medical conditions, not because you thought she was "working under false assumptions about" N! I don't know where you are but in the UK people with Narcolepsy are reported to the roads authority and are not allowed to drive. In the US many states have rules about people driving with Narcolepsy (or it's equivalent seizures/blackouts/loss of consciousness etc). Some states require that doctors report N the local DMV, and many states have rules about self-reporting and temporary/permanent license suspension revocation. Closest I can find to a state by state survey of rules is here: http://everythingnarcolepsy.blogspot.com/2006/05/driving-safety.html There are some states where anyone can report a driver they fear is a danger to themselves and others because of a medical condition that impairs their focus in any way. I am 54, I drove until I was 46. After a Cataplexy event that saw me sail through a stop sign without an active muscle to help me stop I never drove again. Ever. Diagnosis didn't come until 8 years after the driving event. I lived with the goal of finding out what caused the event before even considering driving again. I had twice earlier fallen asleep behind the wheel and fortunately those noisy highway strips saved mine and my passengers' lives. I put that down to being "tired" and a long boring highway stretch on vacation... Yet even today, one year after diagnosis and chock full of more Modafinil than a jet fighter pilot (in joke), knowing that I'm constantly going in and out of microsleep and automatic behavior and sleep attacks and concentration/focus issues, I will not drive for the safety of myself and others on the road. It has been very difficult on me and my family, my not driving, but that's the price of living with (my symptom constellation of) such an illness into your 40s - 50s and beyond. My sleep doctor keeps telling me "it gets a little better" in your 60s. I'm sure there are some people with N who can still drive, God bless them and keep them safe, perhaps short distances, perhaps with rests by the side of the road, but I'm sure there are many many people with N who drive, who should not be driving at all ever and who risk their own and others lives everyday. And I'm sure that the doctor's assertion that you daughter will not be able to drive when she gets older has more chance of being true (legally and physically) than you gave her credit for. Rather than laugh, perhaps you could engage people in conversation, ask them what they mean, so that we can all learn something from each other about N. The truth is out there, it's just so thin on the ground. Every morsel is a clue to tease into a fact towards getting a bigger personal understanding of this curse. Hugs, Plexicat ~
  5. @japanzv Hi again. The combination you were prescribed is not the most common starting position but it is not unheard of. Finding the right medication and combination of medication to treat one's narcolepsy cannot be done in "a bit of a rush". Without incredible luck it can take a lot of hit and miss until you find something that works and even then a body will become tolerant and tweaking is necessary (under the watchful eye of an experienced doctor) I can't tolerate regular stimulants so Modafinil helps me some. So I can't speak of your combination, directly, and even if I could it would be my experience and very likely wouldn't work for everyone since we are all different. With Modafinil my experience is that 100mg gives me some mental clarity for a few hours. 150mg does pretty much the same. 200 gives me an intense headache. So I take 150 in the morning and 100 at noon. It certainly doesn't make me feel "normal" but the extra sharpness is appreciated, and the side effects other than a little "weight maintenance" is zero. The few times I've tried 150/150 it has messed with my sleep later in the evening. Your description of your side effects is disturbing. In your "rush" I believe you are hurting yourself and your body is telling you so. Indeed it's SCREAMING at you. The added strain to your body and stress to your mind will, very likely, I believe, manifest in something much more horrible than Narcolepsy symptoms. As I said in my last reply to you, I believe you are misunderstanding Modafinil and asking it to do what it isn't created to do. Ideally it should be like the perfect cup of coffee, giving you the mental kick to make it through a few hours of vigilance. Most people report about 3-4 hours. I firmly believe that TOO MUCH emphasis is placed on keeping Narcoleptics awake, and that this leads to much burn out. It's like overrevving an engine (and adding nitro) when the parking brake is engaged. It can only lead to stressing all parts of the mechanism and CANNOT be sustained. Indeed it is a form of torture. It's the fault of our culture. There is much to be gained by a Narcoleptic in finding a way to give us more refreshing sleep. The balance of those 2 (wakefulness and proper rest) must be the safest, most sustainable long term way for us to cope with our illness. Logically it follows that if we are better rested we would not need to so many stimulants. Balance. I am not a doctor. Your concerns and reactions need to be addressed by a doctor. For your sake, particularly with regards to your long term health, please stop hurting yourself. Hugs, plexicat.
  6. I wish you well. It sucks to go one step forward and 2 steps back, to find things that only work for a little. Ultimately the question is going to be harm vs help and I'm glad to read that life is relatively better with Xyrem, and that there was a sweet spot to go back for. If the back peddling doesn't do it, do discuss the 3 divided dosing idea with your doc. I've read many times of people trying it so it's not too left field an idea. maybe 3hrs x3 might do it for you? Good luck.
  7. Yay! Our battle is fought in inches of clarity wrestled back from the fog! Wishing you continued success! Hugs, plexicat ~
  8. Hi @cantsleep Welcome to the forum from me. Yes, if it's leaving you that messed up there has to be another way. Indeed call your doctor for suggestions and / or did you try calling the Xyrem Nurse with your concern? I haven't had the chance to try Xyrem yet, waiting on Patient Assistance, so I wouldn't have any direct experience ideas for you. You don't mention how you slept before this medicinal cocktail. (which really seems like overkill to me, if I'm being completely honest). You don't mention how bad your cataplexy was before treatment either. And you don't mention if there was a time during dosing upwards that Xyrem worked to improve your situation. Perhaps you'll need to revert to that dose? I've heard of some people on Xyrem having to cut back a little for results or them dividing their dose into 3 parts instead of 2. Ask the Nurse/your doctor about that option. I've also heard that for some Xyrem eventually stops doing what it's supposed to. Or at least becomes more trouble than it's worth. And I'm not 100% sure if this is correct but I've read that Xyrem is only a perfect solution for 25% of Narcoleptics. If you have reached the end of your rope with Xyrem, you may need to revert to the standard treatments for N/C. A sleep aid for fractured sleep (Trazodone works more or less for some - works enough to improve that in me) and because you can't tolerate Stimulants (although you didn't mention Provigil/Nuvigil), a stimulating anti-depressant for Cataplexy. Something that plays nice with Trazodone. Prozac maybe??? Don't quote me, but there will be something. Narcolepsy sucks so much, it takes years to find it, years to get to a decent medicinal compromise and then even that becomes ineffective after some time. This forum is full of such stories. I hope someone else has more experiential-based suggestions for you, but please keep us posted on how you do. Your eventual solution - however temporary or permanent - may help someone. Hugs, plexicat ~
  9. Hi, @Blurryface i don't have any experience with xyrem so take all this with a grain of salt. I hope to experience it eventually and I hope it works for me. Firstly I'm overjoyed to read that you're having some success so soon! From what I've read, starting dose is sub-therapeutic. I've also read of several people who have gone up in dose too soon, and scared themselves away from the medication. From what I know, it's so easy to be tempted to rush things. Take things at the recommended rate, and if you think that might be too much rather take a little longer at each level than jump too quick. With small success, after much suffering, it is so very very easy to want more success. Slow and steady might win this race. Enjoy what must be a great feeling of waking refreshed. Savor it. Lucky you! I have also read that people take supplements to Xyrem and this is something you might want to discuss with the Pharmacy and/or your doctor. For example, and again, please check this with your providers, I think I've read that some people add a small 1.5mg of melatonin to put them to sleep so that Xyrem can do it's work without the stress of waiting to fall asleep, watching the progress and new experiences, or the "tripping" effect that comes from fighting it (intentionally or unintentionally). If your body is used to chemically induced sleep onset then it would make sense that it might benefit from that little push over the edge. I think. As I'm hoping eventually to get through all the paperwork to try Xyrem for myself via the Patient Assistance Program, I'm always keen to read anything about it. So I'm hoping you have several answers to your questions from people with real experience. Happy it's begun it's job. I hope it is all it's cracked up to be (for you and, eventually, for me), Continued luck ahead. Hugs, plexicat ~
  10. Hi @japanzv Welcome to the forum from me! It sounds like a pretty intense set of circumstances in your life right now. I can't solve anything there but there are a few thoughts I'd like to put forward after reading your post. In no particular order b/c my own N gets in the way of completely clear thinking. Japan is an amazing place. i've visited there several times but not since my diagnosis. Since my diagnosis I've done much reading and I wasn't surprised to learn that Japan is a leader in Narcolepsy research. Also that, if I remember correctly, it is a country with the most identified Narcoleptics per capita. This may well be because of racial genetics but the higher level of identification of Narcoleptics may also be because of the culture of overachievement tends to flush out Narcoleptics sooner who physically may find it difficult to meet the cultural demands of attendance, involvement, energy. My real point here is that, in Japan, Narcolepsy seems much more recognized than in other parts of the world. This kind of social awareness is what many of us on this board yearn for in our locales. It means that our growing inability to "keep up" with social expectations is dignified with understanding and acceptance rather than discounted as "lazy or crazy". Having only just been diagnosed you are still in the early stages of treatment. Usually treatment involves the use of a stimulant (in your case Provigil) and for cataplexy, HH, sleep paralysis, usually an anti-depressant (at low dose) is prescribed to suppress REM activity. Given the stress of your situation, perhaps a slightly higher level of anti-depressant might help calm things down while you settle into "the new normal" of your fresh diagnosis. Perhaps an anti-depressant is what the doctor referred to. Perhaps not. If there is a particularly Japanese anti-depressant that might not be available outside of the country it makes sense that a Japanese doctor might not want to create a dependence for that in a foreigner who might leave the country at some point. You can't (shouldn't) just start/stop an anti-depressant at will. From what I read I think perhaps you have slightly misunderstood Modafinil (Provigil). It is a very unusual drug in that it allows wakefulness but still will allow you to nap if when your Narcolepsy demands it (or you choose). In many ways it is tailored to the requirements of the illness. In my experience it sharpens mind awareness above brain fog, whereas stimulants, like Ritalin, activate the brain (and body) in a very different way - keeping you awake and stopping you from sleeping (which, for me, makes it impossible to function - it's like pumping the accelerator whit the park brake engaged) . I feel much more anxiety with amphetamine type stimulants than with the mind sharpening effect of Modafinil. Of course these medications don't work the same way on every one. But that's the general idea. Note too that many people, myself included, find that the alertness from Modafinil is short lived, a few hours, note that maximum recommended dose is 400mg per day. And the same can be said for shorter acting amphetamine type stimulants (only their "usefulness" is often followed by a much harsher "crash" and indeed the body can quickly become tolerant to these kinds of stimulants, requiring more for the same effect. There are extended release amphetamines, There are anti-depressants which are either energizing or sedating. Each have their benefits by lifting your game, or increasing your restorative rest (as well as dealing with the other N symptoms and maybe lifting your mood dependent on dosage) It can take years for a Narcoleptic to find a medicinal cocktail to give their lives some semblance of normality and even those cocktails can suddenly stop working. As you come to know the forum better you will read of the many treatments and follow some members frustrations, successes, etc. Fact is there is no cure for Narcolepsy. Each of us have more or less of certain symptoms and each of those symptoms severity change over time so it's a moving target we're shooting at with less than adequate tools. Which makes me think of your suggestion/question that Modafinil makes you anxious. You have more than your fair share of situational stress right now, and perhaps the extra "sharpening" of mind with Modafinil isn't making you more anxious but just clearing your mind to see all the stressors and complications. Even a non-Narcoleptic would be forgiven for being overwhelmed by all the stuff you're dealing with now. including being in a foreign country and away from known support networks, AND needing to come to terms with the diagnosis of a life long illness and it's current and future consequences. I recommend, if possible some counseling to put this all into perspective in the hope of moving forward rather than slipping backwards overwhelmed. Because of the voodoo of our illness, I fear you might find that the language barrier might keep you from finding the best fit of medications and lifestyle changes that will give you maximum functionality right now. Perhaps it is an idea to return home, find a way to deal with the new Narcoleptic you and once you've reached a level of stability with it all you can return. Stress on body and mind caused by the sleep disorder, added to stress of body and mind in your circumstances could reasonably bring on a vicious cycle that will seem like a whirlpool of fatigue spoiling your quality of life and undermining the many good years you could have ahead of yourself if you can create ways to properly manage this illness. Pushing hard against it may seem to be the "immediate" solution, but that pushing hard is only a stopgap, which will catch up with you, it must. If you push something hard enough it will break. I wish you all the very best in sorting your situation out, and learning to accommodate and manage your health and situational circumstances to find a sustainable sensible quality of life. This can be our only goal. Hope this helps some. Hugs, plexicat ~
  11. Hi @Ashcrowz Are you sure you're not confusing sleep attacks with microsleeps and automatic behaviour. All 3 can combine. When you add to this the physical exhaustion/fatigue that comes from fragmented and unrestorative sleep (and naps that might be hallucinatory half dreams instead of anything near relaxing) you end up with a vicious storm of extreme N. This sleep deprivation/tiredness then, of course, effects you physically, emotionally, mentally, socially, professionally etc.... and each of these adds like a lead weight to the daily burden. And we're human so "life" itself makes us tired, and other concurrant illnesses, like anybody else. Meds themselves can, while helping, paradoxically add to the load. it is a debilitating illness - A full time job! On a board like this folks often break off symptoms of N to discuss them individually, that's probably because each of us suffer more from one or more of the symptoms. some may last seconds or minutes, some last all day, some develop as the day progresses, go away, come back, but they're constantly churning the pot in this stinky stew. Insomnia might even rear it's ugly head in cycles. Sometimes, in general conversation, terms are exchanged. Tired = exhausted = fatigued = whatever. In your case you write "it" so the next person who stumbles on this page will associate "it" with their particular combination of symptoms. Lately I've been thinking about what happens to me and I'm convinced that there's a layering of types of tiredness and tiredness producing consequences. It helps me, for some reason to understand that I just micro slept through 20 minutes of the last hour. But there's an upside to feeling out and identifying these layers. Instead of thinking, damn my eyes were open but my brain was asleep... These days I think "hey, I've just come out of a "spell" time to make the donuts! So little is known about Narcolepsy, even by the experts, a board like this is a great place to compare notes, and indeed be amazed by all this N thing can do. It's a battle against fatigue that is fought in inches of energy and I'm always fascinated by how good we are at waging this war. Respect the enemy, s/he is a capricious fiend. Hope this helps. hugs, plexicat ~
  12. Why risk clouding the test in any way? Especially with fore-knowledge that it might? When I did mine I stupidly, but with no resistance at all from the tech, indeed with his full knowledge and detailed directions, went out (fully hooked up) and smoked a handful of cigarettes between each MSLT nap. And still I "qualified" for diagnosis, I wish I hadn't and the full extent of my Narcolepsy would be forever carved in stone. Perhaps I'd have set some records Good luck. My advice is go do the test clean and let it show what it shows. Do what you do naturally.... there aren't many times in life you are encouraged to "be yourself". Hugs, plexicat ~
  13. Hi @DClovesdogs Sorry to read that there is still a question mark over your daughter's health issues. But that there is a good chance that this is not Narcolepsy is reason for some rejoicing. Having said that the tests are quite flawed in/of themselves (open to both false positives and false negatives) and undergoing the test under the influence of an anti-depressant only clouds matters more. As you know. There are many (sometimes benign and passing, or at least easily treatable) illnesses that could explain the sleepiness and the suspected cataplexic event. Let's hope it's something like that. One thing that the test is good at finding (if nothing else) is the level of fatigue in a person and clearly the sleep center can see no cause for alarm there either. At least on the day of the test. I don't know the back story but as I read your post above it seems as if at some point someone diagnosed Cataplexy and prescribed Zoloft for that. If this is the case, without any indication at all of N from the sleep study then logically (except for in vary very rare cases) it was not Cataplexy and hence the prescription is no longer valid and (given the incredible amount of ailments that anti-depressants can address) could potentially cloud a clear (perhaps much simpler) answer. Again, if I'm reading the diagnosis/prescription issue correctly, then perhaps there were some conclusions jumped to and these might need to be reversed, however frustrating that may seem and in the case of anti-depressant withdrawal, however difficult the process. One of the deep tragedies of N is that it can take so long to be diagnosed as it's symptoms are mimicked and mimick so many other ailments. And as I said above, perhaps (hopefully) not so horrible ailments as N. However there is always the tragedy of misdiagnosis and unwarranted medicating, with it's long and short term list of complicating side effect. And that, for me, is quite some justification for proceeding cautiously (and vigilantly) forward. Perhaps it is a "sign o the times" that children are given so much medication, so quickly, these days, but it worries me no end the more I hear of it. Excuse any personal bias on my part. There is some blessing to be appreciated that it was thought of to do a sleep study at all. Many PWN are left undiagnosed because no one even thought of doing this quite simple an unobtrusive (if not always cheap) procedure. I hope and pray that your daughter finds her answer, that it is finally simple and unthreatening, and she can be happy and healthy (and as medication free as possible) as she grows into her teenage years. Please keep us posted on progress. Hugs, plexicat ~
  14. Hi @Telepathic Conundrum Welcome to the forum from me. I'm not a doctor. I'm sorry to read of your current situation. I'm NwC. I know the hell of Narcoleptic Insomnia too well. And the daily trials it brings. I was thrilled to read of the success you had with Xyrem, even if it was short lived. I hope you get to feel it again. I'm still waiting to hear from Xyrem to see if I qualify for their patient assistance program and I long to feel the joy you describe. Kudos too on your career. Sounds like a wonderful opportunity to learn a very delicate art, the complete and correct way! In a perfect world you could call the Xyrem nurse and you'd have a suggestion for best way to proceed, however I've often read here that their bias for the product sometimes muddies a clear answer, even though certainly they should know more about the product than any doctor, and have ample experience of exactly your current predicament. It might be worth trying anyway. Certainly you should, and you probably have, called your regular and/or doctor. If you are right that you need to take a break and start Xyrem again from scratch, and my lay instincts tell me that sounds feasable, particularly given the current scenario, then your doctor may prescribe something to tide you over. You said you'd had some success (and disaster) with klonopin and a smaller dose might give you some percentage of benefit during the break. Currently I began taking Trazodone, which helps some with the fragmented sleep while I'm waiting on (long time coming) Xyrem approval. I've read there is little problem with discontinuation with Traz so it might be some small help should a total break from X be necessary. Actually I'm kind of glad that the time waiting for X patience assistance program lead me to try Traz, since in my mind I think that if X doesn't work for me, and it doesn't work for everyone, or if (if I can get it) I lose that assistance, I'll always know that I have a fall back. Lesser, perhaps, but a fall back none the less. I wish you all the luck in the world getting back to that great place that you experienced. Sounds like a dream. (pun intended) I'm sure patience is difficult after taking a bite of that apple. But remember all the patience it took from onset of symptoms, through diagnosis and until you had your joy. Try to rekindle some of that patience now. You saw some light at the end of the tunnel, let that motivate you to regain it, whatever the immediate hardship. Please keep us posted, your experience may help someone who stumbles on these pages in the future. Again welcome to the forum, I hope you find many friends here. Hugs, plexicat ~
  15. HI @Joeski Welcome to the forum from me. Yes, indeed, describing N to others is difficult. I think everyone here knows the feeling of being told by a non-narcoleptic, "yeah, I get tired like that. I wish I could nap." And the symptoms do overlap each other, and they are heightened further by sleep deprivation (so EDS +), and the sleep deprivation (from fragmented sleep) can cause all sorts of complications (and further confusion) , not to mention long term physical and mental issues. I hear you about microsleeps and automatic behavior overlapping too. And there's also the question of short term memory loss and microsleeps - did I forget what I just did or was I not (fully) awake for that moment? The "perfect storm" of complications that I describe in the above paragraph can be bewildering and of course debilitating, but I, personally, have learned over time not to focus on (freak out about) each of the symptoms since there's no real benefit to isolating them (perhaps no possibility) and i prefer to concentrate on a broader view. Am I (fully) conscious right at this moment? if so, then get stuff done, enjoy it. If I wasn't then what can I do for myself to make sure that time is minimized? How do I sleep better? How do I improve my focus? How do I maximize focus and quality of life and minimize wasted energy? The answer is partially in medication, and partially in lifestyle modification. I understand your frustration, you want people to "get it" but it's very hard unless they "have it" These frustrations can become a spiral of anxiety and depression and in that respect I fully and happily and from my own experience encourage you to seek some kind of counseling which might help you learn coping skills to minimize the stress the confusion and frustration causes. This stress only eats up valuable energy that we Narcoleptics can't afford to waste. I've said many times that ours is a battle fought in inches, and every inch of energy "won" is a victory. When I meet someone who is interested enough to find out more about N, I send them this link which is pretty thorough but not too technical. Check it out. http://www.nytimes.com/health/guides/disease/narcolepsy/print.html Hope I'm helping. Hugs, plexicat ~