|
I read through Effexxor's thread about Tourette Syndrome and it was very interesting to me how misunderstood the disorder is. I have another commonly misunderstood disorder, narcolepsy. Unfortunately I won't have any amusing stories about falling asleep behind the wheel of a car or in my dinner plate. So what is narcolepsy? Symptoms can include one or all of the following: -Excessive Daytime Sleepiness (EDS) - basically, you feel really tired. This can range anywhere from feeling tired to falling asleep randomly. -Cataplexy - sudden loss of muscle control. This can be anywhere from slurred speech to complete loss of body control and collapse. -Hallucinations upon falling asleep and waking up. This is because people with narcolepsy tend to not get enough REM sleep and will quickly fall back into it - the stage of sleep where dreams occur. Ever heard of lucid dreaming? This happens a lot for narcoleptics. -Sleep paralysis that doesn't go away as soon as you wake up. It's temporary but can be pretty scary if you experience it. So as far as my case goes, I have a fairly mild case of the disorder. I'm still able to function pretty normally, but I've had to make some changes to my life in order to function. Basically, my narcolepsy manifests in EDS, hallucinations, and at times sleep paralysis. Luckily I don't have cataplexy, one of the more severe symptoms of narcolepsy. People with narcolepsy can fall asleep extremely quickly if given the chance. One of the tests they perform is called a sleep latency test - you do a sleep study where 5-6 times over the course of a day after a full night's sleep they have you try to fall asleep. A normal person might take 10-20 minutes to fall asleep - if they do at all. My times all average under 5 minutes. People with severe narcolepsy can be under a minute. How does it affect my daily life? Well, for me it starts with waking up. I have an extremely difficult time waking up in the morning. Luckily, I have a wife that forces me to get my rear end out of bed. Otherwise I can wake up, turn off my alarm clock, and instantly fall back asleep without realizing I did it. Most days, I can get through a day of work without needing a nap. I have a prescription for provigil - a type of amphetamine which helps keep you alert but without making you feel hyper or jittery. This takes care of the majority of my EDS and allows me to function basically normally. Rarely though I can't ward off a "sleep attack". Luckily, my boss is extremely understanding and allows me to go take a nap in my car. All it takes is 15-20 minutes and I feel fine again. Almost every day I'll take a nap after getting home from work for 15-30 minutes. Then at night time falling asleep for me can happen extremely easily while watching TV or reading a book. If I'm involved with doing something it usually won't manifest itself. It generally happens when I'm bored or uninterested in what I'm doing. Driving for me is perfectly safe since I know when I'm going to have a sleep attack - not all narcolepsy patients, especially those with cataplexy, can drive a car. For me, it just feels like I'm really tired and haven't slept in a day. If I feel that coming on, I'll either take a nap first or pull off somewhere and take a quick snooze. I'll never drive while feeling drowsy. Luckily provigil tends to take care of 99.9% of those attacks in the first place. For me, it was really misunderstood until it was diagnosed. Lots of my friends/family just thought I was lazy as poo poo. They didn't understand why I would be taking a nap at random times during the day or that I didn't want to do anything since I was too tired. A lot of my dates in my 20s would get irritated with me for falling asleep in the movie theater or while sitting on the couch. Luckily, I married a therapist who understands the disease and is supportive of me. The one "good" thing about the disorder (if you could call it that) is that when it is time to go to bed, I don't spend hours rolling around trying to get comfortable. I put my head to the pillow and within 3 minutes I'm usually out cold. Call it anti-insomnia (which I feel just as bad for people that suffer with that...) Anyway, that's basically it. Narcolepsy can manifest in ways from just feeling tired a lot all the way through a cataplexy attack in the middle of a dinner or driving a car. Luckily I have a reasonably mild form of it that still allows me to have a somewhat normal life. I generally keep away from telling people I have narcolepsy just because it's such a misunderstood disorder they think I'm lying since I don't have the cataplexy attacks. Either that or I get asked about embarrassing stories where I've fallen asleep at inopportune times. Feel free to ask any questions about it that you might have!
|
#
?
Aug 24, 2014 14:52
|
|
|
|
| # ? Apr 16, 2024 23:46 |
|
|
What causes your narcolepsy?
|
|
#
?
Aug 24, 2014 16:14
|
|
|
Git Mah Belt Son posted:embarrassing stories where I've fallen asleep at inopportune times. 
|
|
#
?
Aug 24, 2014 16:18
|
|
|
Filecabinet posted:What causes your narcolepsy? I'm not sure on the scientific aspects of it, and I don't think science can really fully explain it yet anyway. It was explained to me that in my brain I tend to go right to REM sleep and spend less times in the other restorative stages of sleep. These have become less and less since I've been using provigil, but up until then I had a few instances. For me it usually happens when I'm doing something boring. It happened to me a lot at the movie theater when I was seeing something that wasn't a horror or edge of the seat action movie. I think between the ages of 22-25 I didn't see a full movie at the theater so I tended to avoid it. I did have a girl break up with me once because I tended to fall asleep while on the phone with her. This was before I even knew I had narcolepsy. She was the type that wanted to talk for an hour every night. Every night, I ended up waking up with a phone on my ear and no one on the other end. About a week later she told me I was a rude jerk and she didn't want to see me anymore. I fell asleep one time in the dentists chair while having a filling done. The dentist told me afterwards she thought I was dead and wasn't sure what to do, hah. I had a police officer wake me up once because I had fallen asleep sitting on my tractor in my front yard. This was my own fault though. I needed to take a nap but needed to get the lawn done since it was going to rain. I think the worst (best?) was when I was dismissed from jury duty though because I kept nodding off during the trial. The judge wasn't too pleased and eventually said I wasn't able to be an effective juror and dismissed me.
|
|
#
?
Aug 24, 2014 17:01
|
|
|
Git Mah Belt Son posted:I'm not sure on the scientific aspects of it, and I don't think science can really fully explain it yet anyway. It was explained to me that in my brain I tend to go right to REM sleep and spend less times in the other restorative stages of sleep. I honestly expected some "falling asleep during sexual acts" stories. I've conked out giving oral a few times, but that isn't because of narcolepsy. It's more due to sleep deprivation. That dentist story is funny as hell though. Lets not try to save the man, lets figure out how to get rid of the body!
|
|
#
?
Aug 24, 2014 20:32
|
|
|
Fellow narcolepsy without cataplexy checking in. I tried provigil a few years back and had a bad reaction to it, best way I can describe it was disassociation. Later that year they found out that provigil can mess with birth control and thankfully I was not in a relationship at the time otherwise that would've sucked way harder. Anyway, generic adderall is what works best for me even though I have to occasionally have "drug holidays" to keep my tolerance from building up too fast. If the OP doesn't mind I could help chime in since I work in the sciences and know quite a bit about human physiology and how it relates with narcolepsy. The OP is correct though that we don't currently know what causes it in people. There is a strong genetic correlation regarding narcolepsy with cataplexy, likely an autoimmune response though though the exact mechanism is still unknown. Even less is known about narcolepsy without cataplexy. Also due to the lack of cataplexy, people who have just the narcolepsy portion are thought to be widely under-diagnosed. The current stats are roughly 1 in every 1,000-3,000 people have it. Anyway, one of the side-effects of narcolepsy that I have is insomnia. Part of it is due to being so sleep deprived, I kind of hit a wall and "wake up" again, like a second wind. Usually when this happens I get very talkative and "silly" and won't be able to fall asleep for another 4-5 hours. Because of that, before my diagnosis and treatment I considered myself a night owl. With medication I am awake enough during the day that I can be active and work out a lot of that energy before getting tired enough to fall asleep at night. The worst thing about having narcolepsy before I got diagnosed was the incredible emotional instability that I had due to exhaustion/frustration, struggling in school (trying to learn o-chem when sleep deprived enough to hallucinate is not awesome), and internalizing my dad's attitude that I was lazy and selfish because I couldn't do everything he wanted me to do. I also had depression pretty badly and had a hard time dealing with it depending on how tired I was. With medication I'm awake enough to think pretty clearly about things, can work-out without immediately needing a nap, and generally have a healthier outlook on life. OP, have you run into anyone who gets offended if you yawn frequently? Even with stimulants I tend to yawn loads, especially if someone is giving a presentation. Thankfully my coworkers are all pretty chill and don't mind. Not everyone in my workplace knows about it, but those I have told have actually said they sometimes forget I have it since it doesn't really impact me during the day. This is actually something I've wondered about regarding Human Resources and whether or not I need to declare it as a disability. It doesn't 'feel' like a disability, but without medication I would not be able to do my job. I think in the future when I start a new job I'll declare it as a disability just so it won't be held against me when I have to go to my GP every 3 months for refills or, god forbid, another adderall shortage hits and my pharmacy can't refill in time. Edit: Tommy 2.0 posted:I honestly expected some "falling asleep during sexual acts" stories. I've conked out giving oral a few times, but that isn't because of narcolepsy. It's more due to sleep deprivation. That dentist story is funny as hell though. Lets not try to save the man, lets figure out how to get rid of the body! I have not fallen asleep during sex, however I have been known to yawn when making out and occasionally fall asleep immediately after sex. Thankfully my husband is very understanding and thinks it's cute  Forgot to mention that I too have fallen asleep in the dentist's chair. Mine didn't think I died, just remarked that I'm one of the best patient he's ever had. Extreme sleep deprivation can mimic narcolepsy pretty well regarding hallucinations. The main difference is the sleep test Git Mah Belt Son mentioned - you've got to fall asleep and enter REM within a short period of time for multiple times. If extremely sleep deprived you may enter REM soon upon sleep for the first nap, but not for the ones after. If you fall asleep for say, 3 out of the 5 naps but don't hit REM fast enough you'll miss out on narcolepsy and get tagged with idiopathic hypersomnia which means "you're excessively tired and we don't know why." Zantie fucked around with this message at 00:29 on Aug 25, 2014 |
|
#
?
Aug 25, 2014 00:13
|
|
|
I used to have a dog with narcolepsy. When we fed her cheese balls, she'd pass out. If I fed you cheese balls, would you pass out?
|
|
#
?
Aug 25, 2014 00:48
|
|
|
Zantie posted:If the OP doesn't mind I could help chime in since I work in the sciences and know quite a bit about human physiology and how it relates with narcolepsy. Feel free! I'm a business analyst so a lot of the scientific questions I would have no idea how to answer beyond the dumbed down version I was told. Zantie posted:
None really offended, but I do yawn all the time. Especially when junior analysts are coming up to me asking questions or I'm trying to explain something to them. I feel kind of like a jerk since it probably seems to them like they're boring the heck out of me. I've become pretty good at yawning through my nose though so it isn't as noticeable.
|
|
#
?
Aug 25, 2014 01:16
|
|
|
I get sleep paralysis occasionally (maybe once a month) and I absolutely hate it. You said a symptom of narcolepsy is still being paralyzed after "waking up" from sleep paralysis. When that happens are you still stuck in the nightmarish half-reality of sleep paralysis or are you literally just paralyzed in your own body and thinking "Yep, hope this goes away soon"?
|
|
#
?
Aug 25, 2014 01:41
|
|
|
Holy cow, I did not know that there were different kinds of narcolepsy. Glad that I inspired you to make this thread! I have a question about your meds, I take Adderall for my ADHD and have awful drymouth for it and grind my teeth and all of that. Because of that, I tend to think about maybe not taking it, but I find that the way that I am with the Adderall is so much more sane and useful that I wouldn't want to go off of it. Is it the same for you?
|
|
#
?
Aug 25, 2014 01:50
|
|
|
Tequila Sunrise posted:I get sleep paralysis occasionally (maybe once a month) and I absolutely hate it. You said a symptom of narcolepsy is still being paralyzed after "waking up" from sleep paralysis. When that happens are you still stuck in the nightmarish half-reality of sleep paralysis or are you literally just paralyzed in your own body and thinking "Yep, hope this goes away soon"? It can happen both with and without hallucinations. Without hallucinations, the first couple times it happens it's scary as hell since you're not sure what the heck is going on. Generally mine only last a few seconds, a minute or two at most. In rare cases it can be an hour or more. Effexxor posted:Holy cow, I did not know that there were different kinds of narcolepsy. Glad that I inspired you to make this thread! I have a question about your meds, I take Adderall for my ADHD and have awful drymouth for it and grind my teeth and all of that. Because of that, I tend to think about maybe not taking it, but I find that the way that I am with the Adderall is so much more sane and useful that I wouldn't want to go off of it. Is it the same for you? Zantie might be better to ask about adderall. Provigil works incredibly well for me but there are people with adverse side effects. Provigil is an interesting topic in itself - look it up sometime. It's a wonder drug for lots of people with narcolepsy and other sleep disorders. It's an over the counter drug in many nations and abused like caffeine pills for students/executives/athletes. In the US though, the patent was owned by an extremely greedy company that was charging $1700/mo for it and fighting like crazy to keep their patent valid, including paying off the big generic makers not to make it. People were extremely upset with them since the drug is a miracle to people who are able to take it without adverse side effects and the company knew it so they wanted to protect the hell out of it.
|
|
#
?
Aug 25, 2014 02:22
|
|
|
Effexxor posted:Holy cow, I did not know that there were different kinds of narcolepsy. Glad that I inspired you to make this thread! I have a question about your meds, I take Adderall for my ADHD and have awful drymouth for it and grind my teeth and all of that. Because of that, I tend to think about maybe not taking it, but I find that the way that I am with the Adderall is so much more sane and useful that I wouldn't want to go off of it. Is it the same for you? I only grind my teeth when sleeping if I'm really, super stressed out. General relaxation techniques and hot baths right before bed tend to loosen me up enough to prevent it for the most part. Conversely I've also found that exercising to the point of exhausting right before bed can help, but that might not work for non-narcoleptics? Last time I had *bad* grinding, as in broke a filling and chipped another tooth, was the summer between severing from my family and starting graduate school. So if there's anything big in your life like that, it's something to consider. Funny enough the more sleep deprived I am the more anxious and pessimistic I get, so I had bouts of teeth grinding before getting put on medication. Going on adderall actually reduced my blood pressure within the first month I was on it, and the only weight I've lost was from being physically active (I gain right back if I'm not active) rather than suppressed appetite, so I may not be the norm regarding its side effects. The drymouth thing is something I have all the time and unfortunately don't have a fix for. I do have a new dentist that I'll be seeing this week for my usual 6-month check up and I'll see if he has anything new to recommend. Otherwise it might just be the usual drinking lots of water, sleeping with your mouth closed (mine has a habit of falling open after awhile), and brushing your tongue if it leads you to have bad breath. I actually try to not drink a whole lot of water right before bed though because my sleep gets interrupted with bathroom breaks, and for me interrupted sleep for 2+ nights in a row means EDS even with medication. So yeah, I'm willing to suffer the increased frequency and lifetime cost of fillings/repairs if it means being sane and functional day-to-day. I have over a dozen small fillings that are all resin as I'm vain 
|
|
#
?
Aug 25, 2014 03:20
|
|
|
Can you take lunchtime naps? They're normal here and I usually need at least 10 minutes or else I'm at risk for conking out at my desk and having stuff like ffffffffffffffffffffffffffffffffffffffffff appear in whatever I'm typing. Other than that, I almost always fall asleep during haircuts and I'm not sure why. My guess is because I'm sitting still doing nothing and don't have my glasses on(med/strong prescription) so I can't read anything or actively do anything. How do they diagnose it? Is it just that test you mentioned? I have similar issues to some degree, but I don't think they're necessarily that serious.
|
|
#
?
Aug 25, 2014 09:59
|
|
|
Sounds like it could be a possible mild case of it without cataplexy. You don't need all the symptoms to be diagnosed - it could be a couple other things though. There's two types of sleep tests you go through to make the diagnosis. They're an overnight PSG test (they just monitor your night's sleep) and the aforementioned sleep latency test - which is the one where you take naps during the day after a full night's sleep. Neither of them are all that bad. The first is a little awkward trying to fall asleep with all the equipment attached to you. The second is boring as hell since it's a 10 hour day and you're stuck in a room. You have two hours between each test. The place I went at least had decent wi-fi so I was able to stream netflix and use the internet so it wasn't too awful. I'd imagine it would have been a whole lot worse had that not been the case.
|
|
#
?
Aug 25, 2014 22:15
|
|
|
I also have narcolepsy, but mine comes with cataplexy. I can expound on the topic if anyone has any specific questions. To briefly explain cataplexy, my muscles will stop responding to signals from my brain when I am in a state of emotional excitement, be it from anger, laughter, surprise, etc. It was terrifying before I was diagnosed, and still frightens me some, but I understand it better now. Imasalmon fucked around with this message at 03:29 on Aug 29, 2014 |
|
#
?
Aug 29, 2014 03:14
|
|
|
I thought I might have narcolepsy because I had EDS (often falling asleep in class or on buses) as well as sleep paralysis with and without hallucinations. I was also getting up, turning off all of my alarms and going back to sleep without realizing. A sleep clinic confirmed I was getting normal sleep quality, though; it turned out that I was just very sleep-deprived. 8 hours apparently doesn't cut it for me, and I can regularly sleep 12 hours a day. The worst episode of sleep paralysis I got was: I woke up and my room was filled with thick smoke, and I was choking too hard to move or get up, and then suddenly the smoke was gone and everything was normal again! Someone must've been barbequing or burning leaves outside and the smell got into my dreams and freaked me out.
|
|
#
?
Aug 29, 2014 04:16
|
|
|
Fellow narcoleptic here! I have cataplexy episodes but they're super mild. I was only finally diagnosed at 20 after getting blood clots in my lungs. Still the best thing that ever happened to me. I have the privilege of taking an awesome drug called Xyrem (aka sodium oxybate aka GHB). Everyone else has the other topics covered but I can chime in on that if anyone has questions.
|
|
#
?
Aug 30, 2014 05:48
|
|
|
Can narcolepsy be a symptom of sleep apnea or are they two separate disorders? I seem to tick most of the symptoms for narcolepsy (dreaming shortly after sleeping, EDS, sleep paralysis) but I've also been told I snore really badly,so maybe sleep apnea is to blame for the EDS. Is there a difference between hallucinating while sleeping and dreaming?
|
|
#
?
Sep 1, 2014 00:49
|
|
|
Benny Harvey posted:Can narcolepsy be a symptom of sleep apnea or are they two separate disorders? I seem to tick most of the symptoms for narcolepsy (dreaming shortly after sleeping, EDS, sleep paralysis) but I've also been told I snore really badly,so maybe sleep apnea is to blame for the EDS. Sleep apnea and narcolepsy are two different things with different mechanisms, but they share a lot of the symptoms since the net result is sleep deprivation. Fun fact: I went into the sleep studies because there was suspicion I had sleep apnea since I snore when on my back; it was at this point that I learned you don't have to be an overweight middle-aged man to be at risk for getting it! Anyway, sleep labs came back negative for that and restless leg syndrome, and the follow-up MSLT got me the diagnosis I have now. I wouldn't be surprised if someone had both sleep apnea and narcolepsy, though that would suck. I'm not entirely sure of what you're asking regarding the hallucinations? The hallucinations I had were while I was awake, the ones that happen right before/after falling asleep are hypnagogic/hypnopompic hallucinations respectively. I genuinely believed in ghosts because of what I 'saw' and it never occurred to me that they were a symptom of sleep deprivation until I got diagnosed.
|
|
#
?
Sep 1, 2014 01:34
|
|
|
Checking in as yet another person who has narcolepsy without cataplexy. I take Xyrem at night and Vyvanse during the day. On the one hand, I really appreciate how Xyrem helps with EDS for me. On the other hand, I hate that the dose I take it at is 70% of my daily sodium allowance. Also the fact that it's a wicked expensive orphan drug which is only shipped from the St. Louis area sucks.Git Mah Belt Son posted:Most days, I can get through a day of work without needing a nap. I have a prescription for provigil - a type of amphetamine which helps keep you alert but without making you feel hyper or jittery. Minor nitpick: Provigil isn't an amphetamine. Sorry 
|
|
#
?
Sep 1, 2014 02:08
|
|
|
Ern Malley, have you had any strange side-effects from taking Xyrem? I remember hearing some horror stories or sleep gorging and other Ambien-like behavior during the FDA panel last year: http://www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm359018.htm. Is it also true that you can only get it while you're in the United States? If so, what happens if you have to travel near the end of the prescription? Also correct that Provigil (Modafinil) and Nuvigil (Armodafinil) are only stimulants, not amphetamines. Despite being marketed as safer, they may get stricter regulations in place due to their now-better-but-not-totally-understood affect on dopamine production and/or re-uptake inhibition which means the abuse potential is quite a bit higher than original thought.
|
|
#
?
Sep 1, 2014 17:03
|
|
|
Zantie posted:Ern Malley, have you had any strange side-effects from taking Xyrem? I remember hearing some horror stories or sleep gorging and other Ambien-like behavior during the FDA panel last year: http://www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm359018.htm. I haven't had any strange side-effects. Mostly just feeling like I'm drunk before it really kicks in and puts me to sleep. The "horror stories" seem to happen for that reason -- person takes Xyrem, person enters an altered state but is not knocked out all the way, person gets goofy and does things like the report mentions, e.g. chowing down on a loaf of frozen bread. If you're considering trying Xyrem, I recommend it. Lots of people take Ambien and don't have side-effects; same with sodium oxybate. quote:Is it also true that you can only get it while you're in the United States? I don't really understand what you mean by this. According to Xyrem's Wikipedia article, it's approved in the US, Canada and various EU countries. So, no, it's not very widespread, but it is approved outside the US.
|
|
#
?
Sep 2, 2014 00:10
|
|
|
Ah, just sent you a PM before seeing this. I heard that shipping it internationally could be an issue due, but it sounds like it's not so that's good. I also wasn't sure about the laws or regulations. For instance, I wouldn't be able to go to Japan because Adderall is illegal. Traveling to England I have to bring enough to last me the whole trip because while tolerated from travelers, they don't actually (last I checked) prescribe it. England does do dexamphetamine, but I've never had it and would rather not have to try something new when visiting my in-laws! [Edit] Just checked, Xyrem is available but not covered by the NHS. Maybe that's where I got confused?
|
|
#
?
Sep 2, 2014 01:38
|
|
|
Zantie posted:Ah, just sent you a PM before seeing this. I heard that shipping it internationally could be an issue due, but it sounds like it's not so that's good. I also wasn't sure about the laws or regulations. For instance, I wouldn't be able to go to Japan because Adderall is illegal. Traveling to England I have to bring enough to last me the whole trip because while tolerated from travelers, they don't actually (last I checked) prescribe it. England does do dexamphetamine, but I've never had it and would rather not have to try something new when visiting my in-laws! Are you sure you can't go to Japan? My mother was in Tokyo recently on an extended work trip, and she takes something that's not approved there, but she got through security no problem.
|
|
#
?
Sep 2, 2014 02:07
|
|
|
Yeah, going by the official stuff...Consulate-General of Japan in Seattle posted:When bringing prescription medications to Japan you may have items inspected and cleared upon arrival by the Customs Agency, and avoid further processing if the following conditions apply: [quote=" Embassy of the United States - Tokyo"]Some U.S. prescription medications cannot be imported into Japan, even when accompanied by a customs declaration and a copy of the prescription. Japanese customs officials have detained travelers carrying prohibited items, sometimes for several weeks. Japanese customs officials do not make on-the-spot "humanitarian" exceptions for medicines that are prohibited in Japan. [/quote] U.C. Education Abroad - Japan posted:Illegal to be in possession? - Yes. Amphetamine and Methamphetamine are defined as "Prohibited Stimulants" and strictly restricted in Japan. If you are found with any medicine containing Amphetamine or Methamphetamine, you can be arrested without a warrant. Zantie fucked around with this message at 03:02 on Sep 2, 2014 |
|
#
?
Sep 2, 2014 02:52
|
|
|
Question! For those with or without cataplexy: does your employer/human resources department know about it? If so, how did you bring it up and what happened? How does an employer differentiate from EDS symptoms and a worker who's just not doing well enough?
|
|
#
?
Sep 7, 2014 00:15
|
|
|
Zantie posted:The drymouth thing is something I have all the time and unfortunately don't have a fix for. I do have a new dentist that I'll be seeing this week for my usual 6-month check up and I'll see if he has anything new to recommend. Otherwise it might just be the usual drinking lots of water, sleeping with your mouth closed (mine has a habit of falling open after awhile), and brushing your tongue if it leads you to have bad breath. I actually try to not drink a whole lot of water right before bed though because my sleep gets interrupted with bathroom breaks, and for me interrupted sleep for 2+ nights in a row means EDS even with medication. I've got dry mouth thanks to an autoimmune disease and I can recommend a product called Xylimelts -- they're xylitol tabs that stick to your gums and stimulate saliva production. While I use the mint free version, it also comes in mint so it's basically like having sugar-free gum stuck inside your cheek and slowly dissolving.
|
|
#
?
Sep 8, 2014 05:56
|
|
|
Zantie posted:If you fall asleep for say, 3 out of the 5 naps but don't hit REM fast enough you'll miss out on narcolepsy and get tagged with idiopathic hypersomnia which means "you're excessively tired and we don't know why." The difference between Narcolepsy and Idiopathic Hypersomnia is that Narcoleptics suffer from auto-immune deffinciency attacking the nurons which control the awake and sleep receptors in your brain. Idopathic Hypersomniacs produce a chemical reaction in the brain similar to the effect of Benzodizapine which is the medical way of sedating someone. Narcolepsy and Hypersomnia are 2 very different diagnoses but share very similar symptoms and are treated similar. (Hypersomnia is also rarer) CHITTYBAR fucked around with this message at 10:56 on Sep 8, 2014 |
|
#
?
Sep 8, 2014 10:53
|
|
|
LivesInGrey posted:I've got dry mouth thanks to an autoimmune disease and I can recommend a product called Xylimelts -- they're xylitol tabs that stick to your gums and stimulate saliva production. While I use the mint free version, it also comes in mint so it's basically like having sugar-free gum stuck inside your cheek and slowly dissolving. Awesome, I'll have to check that out too. CHITTYBAR posted:The difference between Narcolepsy and Idiopathic Hypersomnia is that Narcoleptics suffer from auto-immune deffinciency attacking the nurons which control the awake and sleep receptors in your brain. Idopathic Hypersomniacs produce a chemical reaction in the brain similar to the effect of Benzodizapine which is the medical way of sedating someone. Narcolepsy and Hypersomnia are 2 very different diagnoses but share very similar symptoms and are treated similar. (Hypersomnia is also rarer) Narcolepsy with cataplexy is the only form in people that's correlated with an autoimmune effect (Stanford paper noted a correlation between a version of the H2N1 vaccine and a significant increase in the number of people developing narcolepsy with cataplexy - the authors recently redacted it but overall it's still a good paper, and I could go into it more if anyone's interested), and not everyone with cataplexy has the gene. Narcolepsy without cataplexy is not an autoimmune disease and we still have the neurons that produce hypcretin/orexin. Sometimes a person is diagnosed without cataplexy, but if their CSF shows low hypocretin/orexin levels, the likelihood of that individual developing cataplexy in their lifetime is quite high (~50%). In those instances I tend to think of it like how people can have a late/adult onset of the autoimmune version of diabetes (type I). Comparative analysis of patients with narcolepsy-cataplexy, narcolepsy without cataplexy and idiopathic hypersomnia Challenges in diagnosing narcolepsy without cataplexy: a consensus statement "Predictors of Hypocretin (Orexin) Deficiency in Narcolepsy Without Cataplexyrough posted:For 41 patients with low concentrations of CSF hypocretin-1, we were able to recontact with 30. In this subset, mean duration of illness was 19.7 ± 2.7 years. Almost all patients (85%) still complained of excessive daytime sleepiness and 33% had developed typical cataplexy. In these patients, mean latency between onset of sleepiness and the appearance of cataplexy was 14.7 ± 2.7 years. Do you have a link to any papers that discuss the part you mentioned about ideopathic hypersomnia? I've never read that before and would like to know more. And no one wants to answer my question about notifying employers about having narcolepsy?  It's a question I'm seriously struggling with since I don't *need* a nap room, but I do need a consistent a shift that doesn't move my hours around. Narcolepsy without cataplexy doesn't feel like a disability to me, but it is an impairment. I wouldn't notify HR about wearing glasses despite the fact that if they broke, I wouldn't be able to do any work since my nearsightedness is really bad (-10). Buuut, broken glasses is a hell of a lot easier to explain, and easier to fix, than narcolepsy. I have another question too: have any of you had a lumbar puncture to check the levels of hypocretin/orexin in the CSF, or have had confirmation that you've got the HLA DQB1*06:02 gene?
|
|
#
?
Sep 10, 2014 02:45
|
|
|
When you have narcolepsy-induced hallucinations, what kind of things do you tend to see/hear?
|
|
#
?
Sep 12, 2014 21:12
|
|
|
|
| # ? Apr 16, 2024 23:46 |
|
|
ProfessorProf posted:When you have narcolepsy-induced hallucinations, what kind of things do you tend to see/hear? The most common thing I saw were blurry shadow-things in my peripheral vision. A common event would be me working on homework or watching TV, and then out of the corner of my eye I'd see something dart past really fast. I could never get a clear look, which is why it was always fuzzy, but there was something *there* and it wasn't one of the cats so obviously it had to have been a ghost 
|
|
#
?
Sep 13, 2014 16:23
|
|