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  1. Hi, Has anyone out there received a false diagnosis for narcolepsy? Is it even possible? I have a mystery illness that I can't figure out and I have seen all the main specialist and done all of their tests and found nothing but a few elevated antibody tests. Finally had an MSLT, I went straight into R.E.M. For the first two naps and screwed up the other naps because I took a tiny dose of adderall so I could stay awake between naps (this was after the second nap). It was so painful to stay awake, I didn't even think how adderall could possibly screw up the rest of the tests, derr.. I was dumb and tired, what can I say. Either way, I had two naps going straight into R.E.M. which qualifies me as having narcolepsy. I was in complete shock because it wasn't even on my radar as a possibility. When I talked to my doctor he said he is almost sure I have it, almost sure?? He said, that because it was the first two naps, it could be that I was still in the circadian ryhthym time frame and that could cause a false positive. Then my sister tells me that her sleep doctor told her that sleep apnea can so give a false positive. Has anyone experienced this? I have so many other symptoms that I either have narco plus other stuff or maybe whatever is going wrong in my body is causing the narcolepsy. I would love to hear from anyone with info or experience with this, thank you so much!
  2. Is this for real? Are they seriously discontinuing the forums for good? I feel this is a serious disservice to narcoleptics. How else are we suppose to come together and discuss our rare disease with one another? This doesn't make any sense
  3. I always wanted to use that Hitchhiker's Guide to the Galaxy line in a post title and I guess this was my chance. ;-) Kidding aside, I just wanted to post one more time, since I got a notification that the boards were going to be shutting down in July. I have not been on the board in a long time, but this forum was such a help to me when I got my narcolepsy diagnosis and I will be sorry to see it go. I am grateful that it was here and thankful to everyone who replied to my posts and and shared so much information. I guess I'll add a last brief update on me: my narcolepsy - if indeed that's what it really is - still isn't really managed well, other than my keeping a really stringent sleep routine. Xyrem wrecked me, modafinil didn't do much of anything, baclofen seemed to work for a time, but I had to take it with temazepam and then had to keep upping the temazepam dose, which wasn't a good thing, so I stopped both. I currently am on a massive dose of gabapentin at night to help me sleep.I also have an Adderall prescription but am not taking that currently, either, because I am on a trial of medication for orthostatic hypotension and POTS (dysautonomia) and my doctor wanted me to stay off the Adderall (which I only took 3 days a week anyway) until the tachycardia is under control. I still don't have any answers on what is causing all of my weird symptoms, but I did get diagnosed as autistic (Asperger's, though they don't call it that any more, officially) last year, which explains so much of my life and is probably the only good thing that has come out of this long journey. Anyway, I just wanted to come on and wish everyone well, before the forum shuts down. Take care, Wolfspider/Lycosa
  4. Hey guys, I'm curious about this combination. As I understand it, belsomra is a hypocretin antagonist that essentially puts the user in a chemically induced narcolepsy. While they say belsomra is contraindicated for narcoleptics this doesn't really make any sense. For someone with 90-95% loss in their hypocretin producing neurons wouldn't taking belsomra be just like taking a sugar pill? Now in type 2 narcolepsy, the issue isn't necessarily that they have a hypocretin deficiency. They more or less suffer from sleep fragmentation that leads to excessive daytime sleepiness. This sleep fragmentation could be the result of a greater hypocretin to gaba ratio causing reticular activation to consistently flare up all night thus causing fragmented sleep. So, if it's safe for type 1 narcoleptics with essentially no hypocretin producing neurons remaining to take xyrem than theoretically wouldn't it be safe for type 2 narcoleptics to combine xyrem and belsomra in the interest of extending sleep to 8-9 hrs while achieving two big R.E.M. periods in between? I think the answer is yes. Type 2 narcoleptics struggle with xyrem because the short half life causes us to wake up every 1hr 45 min-2 hrs or so. When the medication wears off, the dopamine rebound wakes us up and makes it nearly impossible to fall back to sleep unless we take another dose. We may get our R.E.M. but we are not spending enough time in the other stages of sleep either. I understand that belsomra can linger and potentially be an issue in the morning. However, that's why we are prescribed stimulants that would eliminate this potential hazard. Anyway, sound plausible? Your thoughts?
  5. Hi all! I am 24 and was recently diagnosed with narcolepsy without cataplexy. I've had excessive sleepiness at least since my junior year of high school- my friends always joked that I am part cat. Now that I'm out of school and in a real job, my problem was getting more inconvenient because I couldn't nap and was falling asleep at work. I decided to finally do a sleep study. My PSG showed that I sleep like a rock during the night- 95% sleep efficiency even with all those wires attached. I fell asleep in all 4 of my MSLT naps the next day with a mean latency of 6 minutes. I reached REM in two of them. I was diagnosed with narcolepsy. I also have been taking medicine for anxiety and depression for seven years. I was on Citalopram 30 mg up until this year when I weaned off for the sleep study. Weaning off made me lose weight and realize other poor side effects that Citalopram was causing me, so I didn't want to go back. I tried out Zoloft and it made me even more tired, but now Prozac is working well. For the narcolepsy, my doctor prescribed me NuVigil, and I tried it out for seven days. It gave me EXTREME anxiety- I was constantly upset and wound up and crying. It was rough. I didn't try out any other medicine while I figured out my antidepressants. Now that I've been on Prozac for a few weeks, my doctor is ready for me to try out another narcolepsy medication. She is going to put me on Adderall. Does anybody else have experiences dealing with anxiety/depression and narcolepsy? What are your experiences with Adderall as a way to fight excessive daytime sleepiness?
  6. I recently was diagnosed with N this past November. I have been seeing a psychiatrist for the past 8 years for the treatment of general anxiety disorder/social anxiety disorder (I am 24). I have been on and off so many different medications for my anxiety, and had just thought I was finally finding something that worked (Pristiq) until I had a major "episode" as my doctor likes to call it. This first episode occurred around 2 years ago after I had been riding horses out in the heat. I had an extreme migraine and then began to get nauseas. After non stop vomiting I began to experience a tingling sensation and my entire body became numb. Then, as if a switch went off, my muscles started to contract and become rigid to the point I could not move them. My jaw locked up, etc so that I could hardly speak. I went to the ER and the dr told me I had experience a panic attack. Everything seemed to point to the but I then shortly a few weeks later experienced hm first sleep paralysis event. I had no idea there was even a name for what I had experienced until I told my psychiatrist. Time passed and I eventually had 3 more "episodes" like the one mentioned above. They all started the exact same way. It was a very hot day, I had been riding my horse..... Migraine....nausea....vomiting... Tingling... Then muscle contractions. It finally became a huge issue when the last one happened while I was trying to drive home, and I managed to pull over and a woman noticed me and pulled her car over to help me out my car. She managed to hear me say "911" and she called an ambulance to again take me to the ER. After the Drs examined me, they all seemed confused but again they discharged me saying it was just another "panic attack". My psychiatrist finally decided that I should see a neurologist because he Said certain things didn't seem to add up. And he forwarded my history to the neurologist... Constantly tired, sleep paralysis episodes.... These "attacks" after riding my horse... Migraines... Etc. The neurologist suggested N and I was shocked. But sure enough, after performing the overnight study and then the mlst I had very abnormal results. The only thing that puzzles me is that even though I fell asleep in all 5 naps during the mslt, I apparently never reached REM sleep. The Dr. Did note that my avg onset sleep latency time was less than a minute which he said was very abnormal. Therefore my Dr. Said I have narcolepsy. I am curious as to how this is possible if I did not reach REM during my 5 naps.... And the question my dr cannot answer is this... I wanted to know If it was possible that these "panic attacks" or "episodes" I have been having over the past 2 years have actually been a form of cataplexy. I told my neurologist I didn't think I have ever experienced catoplexy (I've never felt weak or fallen down, etc). He told me he wasn't sure if the episodes I have had could be catoplexy because, "Narcolepsy is a very strange disorder, there's not much known about it so it's possible." This just did not satisfy me. Can anyone help!?!? Or give me any insight!?!? I'm currently being treated with Nuvigil 250mg twice a day, propranolol 20mg twice a day, pristiq 100mg once a day, and clonazepam .25mg twice a day.
  7. I have Narcolepsy w/o Cataplexy. I have tested negative for any genetic inheritance, but this is not definite. I will outline my general approach to treating my narcolepsy. I won’t go into too much detail --- that would take too long. But hopefully this will be just enough to get a lot of people started /looking into changes for their self. I try to do preventative measures as much as possible. This is mostly diet and exercise. I know, it seems mundane. But as a healthcare provider (psychotherapist), I cannot stress how important it is. I would be a hypocrite if I told my patients these things and never did them myself. Diet One of the biggest things I changed was starting intermittent fasting. I explained a lot of the science behind it in this post ( I talked about the Suprachiasmatic nucleus (SCN) in my original post, so there is some error there. It’s located in the hypothalamus however and there is input between it and the lateral hypothalamus ( Basically with Narcolepsy, it is postulated that we have a dysfunction in the Lateral hypothalamus. This controls a lot of different functions which when deregulated lead to primary and then secondary down chain events. We can’t do anything about “fixing” the main clock. Those neurons are dead. But we have peripheral clocks. These clocks are in your digestive track, your cells, your microbiome, etc. We can regulate these clocks through diet and exercise to give them the “correct time” --- which apparently also helps feed back into the primary clock(s). It gets a lot more complicated than that --- but that’s the gist. Intermittent fasting has a host of other health effects. I fast for 14-16 hours a day 6 to 7 days a week. It has been the best thing by far to help my other body clocks make up for our centrally disturbed one. For women, the fasting window is typically less. It took me months to adjust to intermittent fasting. I would start here first though. The second thing I adhere to is a high protein, high fat diet with low carbohydrates. The high fats and protein keep me satiated and prevent crazy metabolism changes. Keeping carbohydrates low has been great for regulating dietary energy fluctuations. Simple carbohydrates have been (historically) the worst for triggering sleep attacks. I generally stay between 50 grams to 100 grams of carbohydrates a day. 200 grams on my “whatever” days. This dietary drop in carbohydrates took about 6 months to completely change and adhere to. Your body will fight against it at first, especially if you are used to eating a lot of carbohydrates for quick energy. I know a lot of narcoleptics have this problem and I did as well. Some people have advocated for a ketogenic diet. While I agree with the general principles regarding this diet, I think continuing on this diet long term does not promote metabolic flexibility. Exercise I work out 3-5 times a week. Mostly strength training. This can be a post in itself. A lot goes into exercising. Strength training helps me with sleep onset a lot --- and staying asleep. A lot of cardio exercise does seem to disrupt my sleep onset time and can lead to more fragmented sleep. When it doesn’t it greatly reduces my EDS the next day. I think this is a timing issue of the exercise more than a cardio issue itself (I generally workout in the afternoon). Medications I have so far only utilized the stimulants. I will change this if I do attempt any of the GABA agents (Xyrem or Baclefon). I was originally prescribed Methylphenidate (5mg as needed). I quickly grew a tolerance and its short half-life led to stronger sleep attacks. I’ve been on Armodafinil for a few years now. I don’t use it daily (3-4 days a week, usually taking a day or two off between uses). Supplements So far, only a few things have worked. I am wary of supplements due to a lot of the overblown claims. But a few have proved useful to me: 1. Caffeine (3 – 5 days a week; 1-3 cups) 2. Panax Ginseng (2 – 3 days a week --- 200 to 400mg ) 3. Alpha GPC (3-5 days a week --- 300-600 mg ) 4. Acetyl-L Carnitine (My original post here: I usually alternate these as well. For example, I use the Caffeine, Alpha GPC, and Ginsing on my “off” Armodafinil days. I use Acetyl-L Carnitine almost every day. If you want additional information, I strongly recommend for scientific references. ….. all of that and a little bit of luck make narcolepsy treatable for me. All of this works MOST of the time. There are days where even if I do everything right, none if it works. This has been years of work for me --- trial and error. And this is just the gist. I didn’t go too much into details. It may not work for you. We are all different. But at least it’s a starting point. Take what you can, if anything and see if it works for you. You have more autonomy than you know. Don’t give up on living.
  8. Hi Everyone! Sorry I haven't been on for a while. I FINALLY gave up Xyrem *happy dance*. I know it works for a lot of people, but I gave it 8 months to work for me and it just didn't get there. I have good news though!! My sleep specialist told me yesterday that they are working on creating an "improved" Xyrem with LESS sodium! Maybe once that comes out I will try it again I'm wondering, have any of you tried Clonazepam for sleeping at night? Does it help you sleep through the night and feel somewhat refreshed during the day? My doctor prescribed me this (0.5-1mg once a night) to see if this helps me sleep. He swore it would pretty much knock me out, but last night it took me a couple hours to fall asleep and then I eventually ended up taking the other 0.5mg (started with 0.5mg). I gave myself plennnnty of time to sleep, but I woke up a few times and didn't get more than 6 hours of sleep. Tonight I will try the full 1mg at one time, but I may need to have him up the dose? Any input would be appreciated. Either way, I'm just glad to be off Xyrem...goodbye Xyrem anxiety!
  9. Dear All, I am new to this forum. I have hereditary cerebellar ataxia. This is a neurodegenerative disease affecting mainly the cerebellum, the part of our brain that regulates balance and coordination. The principal symptom is ataxia, which is lack of balance and coordination while walking and performing different tasks or even at rest. There are other symptoms such as tremors, slurred speech and others. Since the cerebellum sends and receives neuronal connections and input to and from many other regions of the brain, this condition may also result in secondary problems not related to movement. One of them is narcolepsy. I have been reading research articles, which show that the cerebellum plays an important role in regulating the REM/NREM cycles, especially with regard of regulating muscle tone during sleep and dreaming. In addition, multiple studies have associated certain hereditary cerebellar ataxias to narcolepsy, restless leg syndrome, REM Sleep Behavior Disorder and Periodic Limb Movement Disorder. Well, my neurologist (who has been treating me for the cerebellar condition for the past 15 years) recently told me that I could have narcolepsy. I have had excessive daytime sleepiness for about 5-6 years. I had been confusing it with hypersomnia. Also, I have developed throughout these years episodes of sleep paralysis and sleep hallucinations (I still cannot tell what type, but they can by visual, tactil, and/or auditory). The frequency of these episodes has been increasing. I started a sleep diary since last September. I hope to get my sleep study and other tests soon so as to define a diagnosis. One question I have is concerning whether or not I have cataplexy. I remember when I was a child, I would fall on the ground due to strong laughter (I also usually had vivid dreams). Then, after my ataxia diagnosis when symptoms became strong, I would sometimes experience (and still do) a loss in my muscle strength throughout my body, though I never fell. I always described it saying that at those times I felt like gelatin (Jell-o) or like a puppet (although again, I never fell, just stumbled, had to hold myself to something or somebody, etc.). Does this sound like cataplexia. I always attributed it to my cerebellar ataxia symptoms, but now I don't know. Also, does anyone else have problems with their balance, coordination, walking in tandem (one feet right in front of the other), slurred speech, etc.? Shekináh
  10. Hi All, My neurologist thinks I may have narcolepsy and soon I will start the battery of testing (he first asked me to start a sleep diary). My question is regarding excessive daytime sleepiness (EDS) and sleep attacks. I know I definitely have EDS. Many times, though, I become so sleepy (I describe it as falling into a strong somnolence and stupor) and then I can't resist falling asleep. I had thought that such sleep episodes, which occur during the day, are part of the symptom of EDS. But now I am not sure if they are actual sleep attacks. Also, many times I dream or may experience sleep paralysis or hallucinations during such daytime sleep episodes. Do you think these sound like sleep attacks? Is EDS independent of the actual falling asleep during the day? Thanks in advance, Shekináh
  11. So I was doing some thinking. My old sleep aid had a combination of phenibut(gaba b agonist), mucuna pruriens(20% L-Dopa) and a relatively large dose of l-arginine. For those who don't know, phenibut is a over the counter supplement that is one of the few chemicals on the planet that binds to the gaba b receptors, the others are sodium oxybate(ghb) and baclefon. In fact, phenibut actually converts into baclefon in the body(although significantly less potent). Whats interesting about this, is sodium oxybate and l-dopa are contraindicated(supposedly hallucinations can occur) as well as baclefon and L-dopa. But this supplement combines mucuna pruriens( which contains roughly 20% L-dopa) and phenibut(gaba b agonist). Very odd, I'm sure this is done for the increase in growth hormone. Body builders used to combine L-arginine and L-dopa back in the day because it would cause a good increase in human growth hormone. Heres where it gets interesting. On nights that I havent used xyrem, I've used the supplement containing mucuna pruriens, phenibut, and l-arginine, I've noticed that my adderall hits me MUCH harder the next day. I'm much more focused and on the ball in classes, my head feels much clearer, the adderall feels like it lasts longer, anxiety is non existent, confidence is 100%, and my sleep attacks are essentially gone im wondering, could this be because the mucuna pruriens contains l-dopa which converts to dopamine and consequently gives my brain more of the neurotransmitter to utilize the next day? It's a very plausible theory. While I can't take the sleep supplement at the same time as xyrem. Would it be theoretically beneficial to buy some mucuna pruriens and take them the next morning with my adderall? The xyrem would be well out of my system by then so I don't see any possible issues that could develop. There's some smart narcos on this network, let me know what you think. I also take inositol and magnesium glycinate twice a day to help combat tolerance .
  12. Hello- Quick background: I was diagnosed with narcolepsy w/o cataplexy about 5 weeks ago based on a PSG/MSLT that they said was a definite positive test. I'm 20 y.o. female and currently on 100mg/day Armodafinil. I don't think that I have ever had cataplectic episodes before, but lately--since past 8 months or so--I've been having episodes of feeling really weird. Today was especially bad. I'm wondering now if they could be related to my narcolepsy or something else (I also have Hashimoto's so I'm hypothyroid). What happened today: I was sitting through a seminar, which I do weekly for school. Every time I ask a speaker a question, I get very nervous and anxious even though I am super comfortable in public speaking and know both the speaker and audience very well. Today, before I ask the question my heart started racing which is not too uncommon. Then I started shaking really badly, more of a tremble. Even my voice was shaking and I stuttered asking the question. After her reply I felt so faint, like I was barely holding on to consciousness. I could feel my head and lips start shaking, it must have been visible. For some reason I almost felt that I was going to cry but I wasn't sad or upset. I sat completely still just trying not to fall over--I felt like if I moved a muscle, even my hand or my eyes, that I would absolutely fall over and pass out. A professor even leaned over to say something about my question but I couldn't even turn to acknowledge him. I couldn't focus on what others were saying or doing--it took all I had to stay conscious. The feeling eventually faded away after what felt like forever (probably about 3 mins). I've had similar episodes before, but never where I felt I couldn't move. I went to the doctor for it in December and had an echo done and 24hr heart monitor, they said both were completely normal. Has anyone had similar feelings with narcolepsy, or do you think this is unrelated? Let me know. It was scary.
  13. Hiya, So I was diagnosed back in August 2016 with N+C. I'm wondering what everyone's sleep attacks are like? Do some people have mild sleep attacks while others don't know when they will happen? When treatment is not working well (or sometimes even if it is) I don't tend to go into "I'm going to fall asleep right at this moment" mode. I am really sleepy throughout the day and eventually my body somewhat gives in and I know I need to go to the restroom at work so I can rest my eyes for a few minutes. I'm not even sure if I nap... Back right before I was diagnosed this was all I did during the day to try to get some rest. I'm wondering if other people's experiences are similar? Just curious!
  14. Hi everyone! I'm hoping I can find some answered because no one seems to be able to answer this for me. Not a single person. So I've been taking Xyrem for around 2 months now, with switching around 2.25, 2.5, and 3g of doses, and I'm currently on 2.5 because I was having worse side effects at 3g. But NO MATTER WHAT I do I cannot wake up for the second dose. EVER. I've probably only woken up for the second dose like 4 times in the beginning of Xyrem on 2.25, but now I'm on 2.5 I just can't seem to wake up for it. I set dozens of alarms of different sounds and vibrations, but they seem to wake up everyone else in my house but me lol. I just simply do not hear the alarms, I don't even acknowledge in the slightest that they're going off. I'll just consistently wake up 6 hours off of the first dose and then it'll be too late to take the second one, so I'll sleep in for a little bit. Does anyone have experience with this, because it seems like no one else has this problem. I would love to hear your experiences/thoughts, thank you!
  15. First post... About me: 42 year old female in WA state between Tacoma / Seattle. 16 year old Daughter diagnosed with Narcolepsy. My mom, other older daughter(23) and son (21) have symptoms as well and will likely be tested soon. My symptoms started around age 4/5 (confirmed by my parents) but my self-awareness that "something" was just not "right" started at age 6-7. Fell out of a 2 story window at age 4 and hit by a Jeep as a pedestrian at age 5 when walking home from school. Sleepwalking, night terrors, microsleeps /zoning out, excessive daytime sleepiness, falling asleep, automatic behavior and memory problems plagued my school years. I was tested at age 7 for epilepsy but that was negative and after that it was just swept under the rug. Denial by my parents was in full swing. Somehow, someway I was a good student but the struggle was daily and my life became riddled with anxiety. Why couldn't I be normal? I knew I was not normal, but on the other hand what was normal? I believe I have a genetic familial case that was triggered by my head trauma. My quest to figure out WTF was causing a laundry list of health problems started at age 20. I was diagnosed over the years with: Bipolar 2, A.D.D., Depression, Anxiety, PTSD, Fatigue, Phobias, P.O.T.S., Syncope and Chronic Idiopathic Urticaria. Being on medicines always left me worse than unmedicated. I felt CRAZY and was treated like I was a hypochondriac / nut case. Now I know I am neither! 20 plus doctors never asked me about my sleep... I was always told I was tired or depressed because of my job, life, 3 kids etc... Same story as 99% of you awesome people on here... but now I finally fit in and I am no longer a square peg trying to fit in a round hole! Road to Diagnosis: I was diagnosed with Narcolepsy with Cataplexy recently (April 2017) strangely in part because my teen daughter was diagnosed. My daughter has been sleeping a ton for the last few years, couldn't wake up to alarms etc... I thought this was normal because that was my life growing up. Hindsight is SO 20/20! A few months back we started having in-depth conversations and she started to describe these things that she was experiencing... hearing this from her took my breath away. Not because of what she was describing... it was that she was narrating my life! Holy Crap! How is she in my head? Surreal! She was describing things that I too have experienced and it was eerily similar. I now know after much research these things are Hypnagogic Hallucinations and Sleep Paralysis. I now also know this quirky weakness in my arms and hands when I laugh is Cataplexy... still blows my mind to know that this is what it is. How have I never stumbled on this in all my years of interneting? The research queen that I am, started researching feverishly and Narcolepsy fit all her symptoms... and mine. She eventually had a sleep study and had 2 SOREMPS but the other 2 naps were really close to being counted but didn't qualify as events. Diagnosis: Narcolepsy without Cataplexy (I believe she does have mild cataplexy though) Initial Sleep Neurologist Appointment: Amazing doc at Virginia Mason (Dr. B). He is certain I have Narcolepsy with Cataplexy from the get go and says it sounds textbook but we have to rule out apnea etc. I am at this point certain as well. I show him video we have of my Cataplexy that occurred after waking from a very emotional bad dream. He says we have to do the PSG and MSLT so I can be put on Xyrem. I understand why and that this is how the path to diagnosis works. Orders the sleep study. Off I go... I thought this was going to be easy because of my clear Cataplexy that I have had since about first / second grade. Boy was I wrong. Sleep Study: Now let's get to my sleep study. It was at Virginia Mason in Seattle (April 2017). It felt like everything went wrong in some way: I arrived at 7:30pm and they were supposed to have me wired and in bed at 9:30 as I normally go to bed at 9 pm. But... they were down a technician (ok, I can deal) so they said they would be in as soon as they can. Then they came in to tell me they had a patient who didn't have their interpreter so there was going to be even more of a delay. Anxiety started to build as I was getting very sleepy. By the time I was hooked up and put in bed it was 11:10 and by then I had a "second wind"and took forever to fall asleep. I normally sleep from 9pm to 5am as I get up early as I work at 7 am (my back pain wakes me up as well... I almost don't need an alarm clock). They made me stay in bed till 7:30am, I woke up at 5 am like clockwork and laid there wide awake but groggy with morning back pain that I have very regularly but I couldn't get up unless I was going to the bathroom. Good times! Room was noisy and not soundproof or anywhere close. The room for the technicians was right across from my room and I heard the door close loudly every time they entered and exited that room. Also, the ancient radiator heater in my room would cause expansion and contraction of the wall decorations that were screwed into the wall above the heater which would cause tapping sounds each time the heater went on or off. I could also hear the toilets in other rooms flushing. They are SO loud and must use 20 gallons of water per flush. When I flushed the toilet the first time I knew I would not flush it again during the night as I didn't want to wake up the person in the room next to me. Next thing was they fed me my two meals right before my naps. Woke up at 7:30 am and didn't get my food until around 8:30 and was to take the first nap at 9:00am. They apologised that my food was late yet my second meal was really late as well. If you are a Sleep Study Technician or Doc please read ------> Food needs to be ready to go right when your patient is scheduled to wake up from a nap, not 30 min before they have to sleep. Mental note and a tip to others: If I have to do the PSG and MSLT again I will bring a cooler to have my own food available in my room. I will eat very simple foods and will eat a small quantity. Trying to nap with a full stomach trying to digest food can keep some of us awake. Each time I napped the tech asked me a few questions. I asked him in reply "Did I sleep?" each time and he would tell me. I know now that they shouldn't say a word and now I know why... performance anxiety! Next time I will explicitly tell them not to tell me anything. Last gripe... not being allowed to leave my room and nothing to do. My daughters sleep center (Multicare) had a small lounge they could go hang out in in between naps. If my sleep center had a lounge I think getting out of my room to maybe go have some conversation, play cards etc... with others can be a great way to feel a bit normal so that I'm not sitting in my room trying to figure out what to do to not fall asleep. The rooms have nothing but a t.v, bed, recliner and a table. Heck... give me some laundry to fold... let me go for a stroll... or some dishes to wash. Board games / playing cards would be an awesome diversion! Sleep Study Results: Overnight PSG normal but fragmented no R.E.M. MSLT, slept in all 5 naps... only one SOREMP though... Doctor says test results clearly show fragmented sleep, no abnormal apnea, no RLS etc... and being able to nap quickly in all 5 naps does point to Narcolepsy because of my other symptoms (HH, SP and Cataplexy) but because I only had one SOREMP the insurance won't accept a diagnosis of Narcolepsy to get Xyrem, Provigil or Nuvigil. My other 4 naps the times didn't fit in the little SOREMP "box", just outside the number range... sigh! Doctor says he knows it's Narcolepsy and that people with Cataplexy for some reason can have trouble registering 2 SOREMPS especially when diagnosed later in life and that I should not worry... (Ok! I won't worry a bit!) He suggests that we get another video of my Cataplexy but we need to show me before, during and after it is triggered. He suggests that I have my husband sit on me and tickle me...sounds like torture but whatever it takes right? I enlist the help of my daughter and we get the video. Doc says it's perfect and he would submit it to the insurance (Regence) with all of my other stuff. I get a email a few days later... Regence will not accept a video clearly showing Cataplexy anymore to help bolster Narcolepsy diagnosis with someone who has every symptom of Narcolepsy. He says no worry, let's do a CSF for Orexin / Hypocretin. Why this test is so hard to get done makes my brain hurt... He gives me the name of a doctor and her email at Emory and says to get "enrolled" so I can get my CSF tested. I emailed her 5 days ago and I have not heard anything back. I am not sure what it is I am to be enrolled in... a study? He mentioned Stanford but I assume that was a dead end since he directed me to Emory instead. I had read about Stanford no longer doing commercial testing so this wasn't a surprise. Has anyone has their CSF drawn in their home state that was tested at Emory? If yes, were you required to enroll in a study to have this done? If you were enrolled in a study was there a fee for the test or was it free? Has anyone else had their CSF tested this year (2017)? Where? Any other CSF information would be awesome if you have knowledge. I will travel to wherever I need to to get a definitive Narcolepsy diagnosis. There is SO much more to my story but I'll end here! Thank you for reading my novel. Diagnosed but not diagnosed... T-Plex
  16. Is it's half life really 15 hrs? Does anyone have issues getting to sleep at night on the stuff?
  17. Came across some information that may be of interest to the community. There's a possibility that all amphetamines disrupt the glutamate to gaba conversion cycles! keyword: ATS(amphetamine type stimulants) "GABA is derived from glutamate under the decarboxylation action of GAD, via glutamine-glutamate-GABA circulation; thus, changes in the glutamate level could affect the GABA content as well. Studies have found that ATS use could change the glutamate levels in the brain. Animal experiments have demonstrated that a single dose of ATS (30 mg/kg) in mice led to decreased levels of glutamine, glutamate, and GABA in the corpus striatum and down-regulated the glutamine/glutamate and GABA/glutamate ratios, suggesting a circulatory disturbance of the glutamine-glutamate-GABA circuit (Pereira et al., 2012). Bu et al. (2013) treated rats with 2.5mg/kg of ATS twice a day for over 7 days and detected reduced GABA, glutamate, and glutamine levels in the PFC. Using magnetic resonance spectroscopy (MRS) in ATS addicts, Sailasuta et al. (2010) found abnormal glutamine-glutamate circulation in neuroglia cells. The reduction of the glutamate level was hypothesized to be due to over-excitation of the glutamate system induced by ATS, and an excessive need for glutamate was produced. The decreased GABA level was caused by an insufficiency of glutamate, the synthetic ingredient of GABA. Additionally, ATS could promote GABA metabolism into succinic acid semialdehyde, for which an increased level was found after the ATS treatment (Bu et al., 2013). The existing evidence showed that ATS can change the functions of multiple members of the GABA-ergic system. Although short-term use of ATS may enhance the compensatory enhancement of GABA, large doses and long-term use will lead to insufficient GABA synthesis and increased decomposition, thus decreasing GAD and GABA levels. ATS can reduce GABAA and GABAB receptor functioning and increase the function of GAT. These changes by ATS eventually lead to a decrease in GABA-ergic system function (see Figure 1)" keyword: ATS(amphetamine type stimulants)
  18. Just wondering if anyone has any experience with the supplement. For those who don't know, picamilon was developed in Russia. It's a combination of GABA and niacin and it crosses the blood brain barrier where it splits into both GABA and niacin. Theoretically, if you have a GABA deficiency than your brain will take in all the gaba that it needs to function and excrete the rest. If this is true, than picamilon could potentially bring relief to someone with a gaba deficiency in the same way L-dopa brings relief to someone with parkinsons. I'm set to meet with a neurologist at uw medicine in may. If my theory about my preoptic nucleus(gaba producing neurons) being underdeveloped turns out to be true than it could mean that my narcolepsy is caused by a different mechanism than hypocretin. While i stil believe that my posterior hypothalamus(hypocretin mammillary band) is underdeveloped/damaged as well. Its interesting to note that if one has a gaba deficiency than biologicaly they must have a glutamate deficiency congruently! Gaba converts into glutamate and vice versa. Glutamate is a major excitatory neurotransmitter within the brain and if you are deficient in both it and GABA than you will be groggy/sleepy/distracted during the day while also exhibiting fragmented sleep/insomnia at night! Could this be the answer? Stay tuned my friends, I'm going to get to the bottom of this
  19. I have been working the desk at a hotel for over a year now and wanted to try to stay here while I plan to go to school for a job in a crime division. When I first started I had an agm who would work with me and my depression/narcolepsy- now the managers have changed and to them invisible illnesses are not a good enough excuse for not feeling well. Since I started a year ago, we have always been short-handed and because of this I have never taken a day off because of being sick, I have been allowed to leave an hour early or come in an hour or two late when we had a mid-shift and coverage at the desk. So today I started having an asthma attack/ panic attack and tried calling my manager to see if maybe just this once I could get the day off because I even started feeling dizzy and really tired. I have been trying to fight this off all week (and all month because I have been doing full-time and over-time at work when I'm supposed to be part-time) so today I just broke down and started feeling really bad. I took my adderall and it didn't seem to work a bit! (xr and 20mg pill) I am still shaky and very tired, I have been having really strong emotions due to family problems and fighting with siblings and I feel really weak all over and my knees keep buckling (is this cataplexy? I thought I only had it mildly but I don't know enough to know if it is??? When I called into work my boss yelled at me and said that everyone is sick of me not feeling good and always trying to call off (I havent even tried calling off in the past 2 months though?) This isn't the first time she has gone off on me and she was really just angry at me because she didn't want to work the night shift. Needless to say, I am going to try to find another job. After a year of being short-handed, not having managers that actually take charge and help the agents at the desk and being so short-handed that at times I don't even get to sit down or have a lunch break for 8 hours has been killing me slowly. I don't even want to continue living when things get like this- last time I got this bad I ended up in the hospital for three days and lost my job I had then. I don't know what to do anymore. I really just want to give up on everything and everyone, including myself.
  20. Roughly 80% of our GABA producing neurons lay in the anterior hypothalamus. The posterior hypothalamus consists of the mammalry body and hypocretin neurons. As I understand it. When it's time for sleep, our circadian rythym activates the Suprachiasmatic nucleus which begins a sequence of events that eventually trigger the Ventrolateral Preoptic Nucleus(gaba producing neurons) in the anterior hypothalamus to calm down the cortex and inhibit the reticular activation system thus allowing us to to pass into the stages of sleep. Narcolepsy is well understood to be caused by a significant loss of the hypocretin producing neurons. But is that the only scope of damage to the hypothalamus? Hypocretin loss certainly offers an explanation to sleepiness and cataplexy attacks during the day. But what on earth is responsible for the fragmented and atrocious sleep quality at night? If a deficiency in the posterior hypothalamus(hypocretin producing neurons) is to blame for our sleepiness during the day, than logically a deficiency in the anterior hypothalamus(gaba producing neurons) should be the cause of our inability to get restful sleep at night. This would make sense. Anterior hypothalamus (gaba) shuts the door to give us restful sleep at night while the posterior hypothalamus opens the door to reticular activation(brain stem arousal promoting signals) and uses hypocretin to keep it open throughout the day. At age 8, I was diagnosed with ADD. During adolescence our brains go through various stages of plasticity and synaptogeneses that eventually see us emerging as adults with a permanent degree of brain development. As a child I chose to forgo stimulant treatments because I wanted to overcome my difficulties and be like everyone else. Consequently my youth is plagued by memories of being in a continuous sleepy, groggy, irritable, depressed, twilight where it felt like my brain was never fully awake. I literally slept my teenage years away and missed a lot of important milestones that I'll never be able to get back. However, two years ago I began stimulants and it was initially an eye opening experience. Unfortunately, that's when the brutal insomnia started. I'd have cycles of one nights sleep followed by 2-3 days of absolutely none. The intial feelings of amazing mental clarity and being "awake" were immediately negated by the fact that I couldn't sleep anymore. After discontinuing stimulants for two weeks in order to do my polysomn and MSLT, the 13 hour days of sleep, depression, and groggy twilight returned instantly. Here's my theory for what's going on. As a child, my brains anterior hypothalamus (gaba producing neurons) developed and tailored themselves to deactivating a dopamine deficient/less active cns. Therefore, it took less gaba to deactivate a less active cortex. Consequently, this scope of development to my anterior hypothalamus became permanent. Flash forward to my 20's and the introduction of adderall. The cortex is flooded with dopamine and fires on all cyclinders which is fantastic during the day, however we now have a serious problem; how in the hell are we going to get it to sleep at night? biologically speaking, an underdeveloped gaba anterior hypothalamus is no match in overcoming a fully functioning cortex. Thus, my brain likely lapsed into painful and viscous cycles of terrifying insomnia. At one point I was on 80-100mg of temazepam at night just to fall asleep. Keep in mind 15mg usually knocks other people on their ass. Where exactly are the benzodiazepine receptors in our brain? You guessed it, the anterior hypothalamus. This tells me that the scope of damage to my gaba producing neurons is significant. Since being on xyrem, it's helped substantially but I'm still only getting 1.5-2hrs of sleep on each dose(which isn't enough). The gaba b release of dopamine and norepinepherine wakes me up and makes it impossible to fall back to sleep. This again tells me that my brain does not have enough gaba producing neurons to tilt the brain back into sleep. Realistically speaking, it's probably medically necessary that I be on 4 doses of xyrem a night if my theory turns out to be true. Anyway, I was just wondering if anyone else has any input or has been thinking about the same things. I plan on going and getting an MRI and eventually a cerebral spinal fluid draw to test my hypocretin and gaba levels. If what I've said is true and and it turns out that I have a substantial gaba deficiency than that should make it medically necessary to give more doses of xyrem at night to achieve 8 hours of sleep.
  21. Hello, It's been a while since I posted last, but I'm back! So here's my story.. I've tried everything in my power to make Xyrem work for me. It was going great for a month or so (after the initial first couple weeks of hell)...but after being on 4.5g twice a night for a couple weeks, I started to have crazy anxiety in the morning with heart rate up to 200bpm. So I decreased for a while...Anywho, months later I am now on 3.5g twice a night, getting maybe 5 hours out of it, but my anxiety is still there in the morning but now I'm ALSO not getting good quality sleep. I tried sleeping before I take my dose ( to get a few more hours), but apparently I have insomnia as well as narcolepsy because I can't fall asleep. I tried sleeping more after the dose wears off, but go figure that doesn't work for me either. So...I need to change medications because I'm back to the point where I'm struggling to stay awake at work. My doctor and I have both determined that I need better quality sleep, so if you could recommend a medication that helps you sleep (NOT a stimulant, please), I would highly appreciate it. Please also let me know if you had any side effects from that medication
  22. Hi guys! I just started taking Xyrem 2.25g 2x a night for a week now, and it seems like it works for so many people but I feel like it might be making me MORE tired?? I'm so confused and sad to think that it may not be working. Before Xyrem, I was taking 30mg Adderall XR in the morning and about a month before Xyrem the adderall started to begin to make me feel almost zombie like and in a really weird state of constant confusion like I was in a daze, just concentrating on everything and nothing at the same time. Since this was happening it started to freak me out so I wondered if I would feel better off of Adderall, so I stopped taking it about a week before Xyrem, with 1 or 2 days of taking just 10mg IR to experiment when I was tired (didnt help). I then started to feel very very tired (I'm thinking it was some kind of withdrawal side effect from not taking the Adderall everyday), but I did start to feel better and more "alive" I guess you could say, not having the same zombie experience that I was having on the Adderall. I thought that the Xyrem I would be taking in a few days would help with the exhaustion I was experiencing from suddenly stopping the Adderall, and I didnt want to start taking Adderall again soon because I didnt want to experience the terrible brain fog/zombie/confusion I was experiencing before. However, once I started the Xyrem I didnt have any more confusion/fog but I was EXTREMELY EXHAUSTED, even more so than during the intermittent time I had during my "Adderall break." I dont know if the exhaustion is just still an Adderall withdrawal symptom and the Xyrem is doing its best to help me but I cant really "see" it working over the mask of the tired symptoms, or if it is just the Xyrem itself making me more tired. I have even skipped the 2nd dose in the middle of the night a few times because I didnt wake up to my alarm, and I just woke up 10 hours later. Recently the first dose of Xyrem 2.5g has been completely knocking me out and I havent been able to wake up for the 2nd dose, and I will even miss my morning alarms and wake up around 10:30am which is around 10/11 hours of sleep ( I usually get up at 5:30am for 8 hours of sleep). I really dont know what to do because I'm still hopeful that the Xyrem will work so I dont want to stop taking it, but I really dont want to start taking the Adderall again because I dont want to be a zombie haha and even "tapering off" of the Adderall scares me because I really hated being in that confused state. I just cant go on being this exhausted, its almost magnifying my narcolepsy symptoms. I would love to hear other people's experiences and thoughts as to why this might be. If anyone has thoughts/answers please let me know, thanks!
  23. Could years of amphetamine use damage neuron receptors and cause symptoms similar to narcolepsy?
  24. Hello all! I need some advice about two completely different things.. first off, I've been diagnosed for about two years now.. and I've tried: provigil, nuvigil, Ritalin (IR and XR), adderall and a combination of these the only other option my doctor has given me is xyrem.. anyways, since around January, I'm on 50 mgs of adderall a day, and it's OKAY. It was better in the beginning but now I feel my tiredness wearing through.. I've been drinking Red Bull like crazy just to keep going.. and that's fine.. but I have this one problem adderall isn't helping at all.. and I don't know if it's normal or what to do.. I'll be in the middle of a conversation on with someone and they'll ask a question that I have a great response to, but once my mouth opens I lose it.. and not even the answer.. I forget the entire question. Or I'll say something and if someone says "what?" And wants me to repeat it I can't because even though I JUST SAID IT, I can't remember what I said or what we were even talking about. I don't know if this is the medicine or the narcolepsy, but it's really impacting my social life. I feel stupid making conversation, because I can't remember half of it. my other question is, have any of you quit smoking while having narcolepsy? I tried for a day but the tiredness just got unbearable.
  25. Hey fellow narcos, being diagnosed with type 2 narcolepsy the past few months has been the answer to a life long riddle that has baffled me and my family since I was 8 years old and diagnosed with ADD. While this whole process has conjured up immense suffering, it's also been extremely mentally stimulating to the point that I want to continue studying and learning about the brain. I thought I wanted to go to law school, but now I'm going to switch my major to psychiatry. Out of curiosity for my current research paper, how many hours of sleep are you guys getting each night with your xyrem? I'm only averaging about 2.5hrs on each dose so about 5-6 hrs. In the past, there's no way in hell 5-6 hrs of sleep would have been enough. However, I'm finding that each day that goes by, those 5-6 hrs of xyrem sleep are such high quality that it's enough to significantly reduce my daytime fatigue and dysfunction. Thus, could 5-6 hours of xyrem sleep at night be adiquete and healthy enough? Are you guys having a similar experience? How many hours of sleep a night are you averaging? Thanks guys, Peace and love, Braden