|
Narcolepsy is a pretty commonly known disorder, but not many people have heard of Cataplexy. Hell, I didn't even know cataplexy existed until I was diagnosed. Narcolepsy has a lot of social stigma due to popular media depictions, and It was actually very difficult to get a diagnosis. Even to this day, I have family that insist it was misdiagnosed and I just don't get enough sleep or whatever they believe will help, because mental illness / disorders don't exist to some people. Wikipedia posted:Narcolepsy is a chronic neurological disorder involving the loss of the brain's ability to regulate sleep-wake cycles. Symptoms include excessive daytime sleepiness, comparable to how people who do not have narcolepsy feel after 24–48 hours of sleep deprivation, as well as disturbed sleep which often is confused with insomnia. Another common symptom of narcolepsy is cataplexy, a sudden and transient episode of muscle weakness accompanied by full conscious awareness, typically (though not necessarily) triggered by emotions such as laughing, crying, terror, etc. affecting roughly 70% of people who have narcolepsy. I was diagnosed with narcolepsy w/ cataplexy in 2015, after dealing with the symptoms my entire life. In hindsight, the daytime sleepiness, the dizziness and falling down, the avoidance of emotions due to mentally correlating it with cataplexy attacks; it was all there. My cataplexy grew more prominent after I had some leg trauma due to Unforeseen Frisbee Shenanigans, which culminated in the first step towards finding what was wrong. Me and my wife were arguing one night and I fell over and she got worried. Worried enough to look up possible causes, and she felt I fit a lot of the symptoms of narc/cat. I wanted to be sure though, so thanks to Obama's healthcare, even a poor like me was able to get looked at. We got a doctor, or actually several doctors by the end of things, to look at me. There were multiple x-rays, physical therapy, an MRI, and other checkups before they let me see a sleep specialist. Nowadays, I walk with a collapsible (like me!) cane to help with cataplexic attacks - kinda like a life vest but for not falling over. And I got prescribed Modafinil, which stops the descent into sleep for like twelve hours, but not the tiredness leading up to it. Ask me about the diagnosis process and what its like living in a constant state of fatigue, or tell me about your experiences, that's fine too!
|
#
?
Jul 7, 2016 21:38
|
|
|
|
| # ? May 6, 2024 18:06 |
|
|
I once met a dude who fell asleep standing on a footstool rummaging through some high cupboards, and also standing up just feet away from a massive speaker in a rock concert. He didn't fall over or anything, and he failed to respond to being shouted at and getting a can put on his head. Was he a narcoleptic? Are you / other narcoleptics like that?
|
|
#
?
Jul 7, 2016 22:41
|
|
|
I have fallen asleep while leaning against a wall while waiting for someone, while riding my bike to work, and at a pep rally back in high school, to name a few esoteric locales. I suppose Its possible he might have been narcoleptic with sleep paralysis, but there are a lot of internal factors ultimately at play.
|
|
#
?
Jul 7, 2016 23:10
|
|
|
clockwork chaos posted:I have fallen asleep while leaning against a wall while waiting for someone, while riding my bike to work, and at a pep rally back in high school, to name a few esoteric locales. I suppose Its possible he might have been narcoleptic with sleep paralysis, but there are a lot of internal factors ultimately at play. I didn't know such terror could exist. I have pretty terrible sleeping skills. I can sleep and sleep and never feel rested. I can fall asleep anywhere, and oftentimes when I try and intentionally get 7-8 hours of sleep, I get really vicious nightmares (usually coupled with sleep paralysis). A few questions: - Moving to an area where there is currently ~5 hours of night has only exacerbated my weirdo sleep situation. Do different time zones/new life situations affect you greatly or is it like a minor jet lag? - How was your sleeping as a kid? - If I sleep with something auditory on, it usually affects my dreams. Does that happen with you? Thanks for the thread, I'm super interested!
|
|
#
?
Jul 8, 2016 19:50
|
|
|
What is your sleep cycle like? Do you immediately start dreaming? Do you have ADD symptoms? I took a sleep study when my doctor suspected narcolepsy without cataplexy. I remember dreams after being asleep for only a few minutes, and typically remember one or two dreams a night. I also fall asleep very easy and have excessive daytime sleepiness. But the sleep study did not indicate narcolepsy and so I'm still stuck with my ADD diagnosis which I take vyvanse for. Basically when my brain is not fully engaged in something, I get very sleepy.
|
|
#
?
Jul 8, 2016 20:38
|
|
|
opie posted:Basically when my brain is not fully engaged in something, I get very sleepy. That's interesting, I do the same.. I've always laughed it off and joked that "I'm like windows, I go into standby mode if nothings happening"
|
|
#
?
Jul 8, 2016 20:46
|
|
|
opie posted:What is your sleep cycle like? Do you immediately start dreaming? Do you have ADD symptoms? I had similar symptoms, diagnosed with super mild apnea and tiredness from fibromyalgia. What's weird is I do have cataplexy. It's pretty mild though. Until I did the paperwork for the first sleep test, I thought everyone got muscle weakness when laughing. Explained why I hate being tickled so much more than the average person.
|
|
#
?
Jul 8, 2016 23:46
|
|
|
teen witch posted:- Moving to an area where there is currently ~5 hours of night has only exacerbated my weirdo sleep situation. Do different time zones/new life situations affect you greatly or is it like a minor jet lag? I moved from Texas to California back to Texas and then to Maryland in about a year and I can say that the different time zones hosed me up. It didnt help that in Maryland I have a lovely retail job with hours sometimes that started at 6 am until 2, or at 10pm until 6 - alot of times concurrently. Overnights were garbage and if I didn't fall asleep at work, i would be pretty wiped out on the bike ride home. As a kid, I usually went to bed at like 9 or 10pm. I always got poo poo on for being a sleepy baby in high school and not staying up after midnight like the [i]cool kids/[i]. Of course, I rode the school bus which meant getting up at like 4 or 5 to catch it and then wait forever until school started. Noises affecting your dreams might have something to do with Hypnogogia, the important words in that article being threshold consciousness, which I feel sums a lot of things up. It can mean outside things affecting dreams, waking up but the dreams are still there (hallucinations from nightmares are not fun) and acting out dreams in your sleep. My wife caught me doing tennis motions once, and I had to explain to her that I was playing tennis with Waluigi at the grocery store, trying to get fruit into a basketball hoop.
|
|
#
?
Jul 9, 2016 00:50
|
|
|
opie posted:What is your sleep cycle like? Do you immediately start dreaming? Do you have ADD symptoms? My sleep cycle, according to my sleep study, is pretty unrestful and I tossed around a lot. My wife says I don't move around more than the usual person, but that I'm a pretty heavy sleeper. I would say the majority of the time I have immediate dreams, a lot of them lucid. I feel I have ADD symptoms and my wife can probably agree to that, shes always on my case about not paying attention :Y. Sleep studies are kind of a gamble, in that even if you don't test "positive" for narcolepsy, it just might not have been a good night for the testing. My sleep study was garbage and I was awake all night because it was strange and different and all I had for a pillow was a couch cushion at the hospital, and yet they were like yeah you got the narxtm.
|
|
#
?
Jul 9, 2016 01:01
|
|
|
(i'm wife) I have insomnia, which is a kinda funny combination for us but I'm usually up for 2+ hours after he falls asleep and he's a pretty sound sleeper. We had forgotten his good pillow and stuff for the sleep study, and it was a very different environment (completely dark except for a camera light, large weird bed, etc.), but since he had pretty severe cataplexy and had enough symptoms shown throughout the overnight study and the daytime sleepiness study the following day, we were able to get a diagnosis. We try to have a comfortable sleeping environment, which helps a little bit for both of us; he was sleeping on my parents' couch for like a year and everyone in my house was really disrespectful of his disorder. It's been really nice to have a big, comfy bed in a quiet room here. Also without insurance his medicine would be like $700, gently caress that
|
|
#
?
Jul 9, 2016 01:22
|
|
|
So even with the medicine, you still feel sleepy? I get sleep attacks pretty often, usually when doing stationary things like reading, driving, or taking notes at a meeting. It's pretty embarrassing. I can cut the frequency of attacks by working out a lot and eating well. Have any lifestyle changes helped with your sleepiness? Edit: oh yeah, do you drink a lot of coffee or does it just not help at all?
|
|
#
?
Jul 11, 2016 01:10
|
|
|
Yeah, the medicine just inhibits actual unconsciousness. I still get really tired and wanna sleep, but I just ... can't. Narcolepsy is the worst because it feels like a natural instinct. You have to go against what is ingrained in your body as a normal thing to be able to stay awake and be functional. The medicine makes nap attacks feel draining and hollow, and while I know it's necessary so I can work and not fall asleep on the sales floor of my lovely job, it makes things feel more tiring and I guess unsatisfactory. I prefer not to take it if I'm not going out for the day to be honest. I didn't go out of my way to work out, but my job used to involve getting up early and biking about three miles a day to get to work, and then some general lifting for truck unloading. I can't say my attack frequency has gotten better or worse since my hours have shifted, my job priorites are different, i.e. less lifting, and I take the bus now instead of biking. I used to self medicate with lots of caffeine, energy drinks, and sugar when I was undiagnosed, thinking I just didn't get good sleep. Nowadays, unless I'm at work, I just don't worry too hard about needing to stay awake if I can help it. Fun fact: my manager also has narcolepsy and we had a big talk over experiences and what was the big event for each of us to go, "hey, I gotta get this looked at." Hers was driving a car into a ditch, mine was riding a bike off the sidewalk into oncoming traffic. I'm not legally allowed a license, even if I'm being treated for narcolepsy, which I guess is fair.
|
|
#
?
Jul 11, 2016 01:36
|
|
|
Narcolepsy is a condition caused by a lack of orexin ( hypocretin) in the brain. The best guesses of narcolepsy causes is an autoimmune reaction in adolescence which causes specific orexin secreting neurons to be destroyed. Unfortunately, the chemical is too big to cross the blood brain barrier which means that we can't do anything to artificially replace it. However, studies on the chemical in animals is highly interesting. Blah blah blah, if your narcoleptic your much more likely to be overweight or obese because this chemical imbalance. Therefore, exercise is very importal for narcoleptics, and it helps immensely with most narcoleptic symptoms. The upsides of being narcoleptic are important to keep in mind though. First, your more likely to have a better than average sense of smell and taste, known as the super taster phenomenon. Second, you have an excuse to sleep through boring meetings. The are two types of medicine available, but mileage varies for them. I recommend that people use them as a last resort after lifestyle changes. twig1919 fucked around with this message at 12:45 on Jul 12, 2016 |
|
#
?
Jul 12, 2016 12:41
|
|
|
twig1919 posted:Narcolepsy is a condition caused by a lack of orexin ( hypocretin) in the brain. The best guesses of narcolepsy causes is an autoimmune reaction in adolescence which causes specific orexin secreting neurons to be destroyed. Unfortunately, the chemical is too big to cross the blood brain barrier which means that we can't do anything to artificially replace it. However, studies on the chemical in animals is highly interesting. That's really interesting, I didn't know the medical specifics of Narcolepsy. twig1919 posted:Blah blah blah, if your narcoleptic your much more likely to be overweight or obese because this chemical imbalance. Therefore, exercise is very importal for narcoleptics, and it helps immensely with most narcoleptic symptoms. That explains so much. Where'd you get your information? Also, it'd be neat if there were goon doctors who treat sleep disorders to weigh in on the matter.
|
|
#
?
Jul 12, 2016 13:36
|
|
|
Are you a sleep doctor? Narcolepsy can't be solved with lifestyle changes, and there are more than two types of drug used to treat narcolepsy.
|
|
#
?
Jul 12, 2016 13:36
|
|
i like nice words
|
No, lifestyle changes cannot cure narcolepsy. However, the severity of narcolepsy does vary between individuals. Lifestyle changes are a proven and effective way of managing narcolepsy, and any doctor worth a salt will include them in a treatment plan. In my case, lifestyle changes eliminated the need for medication completely. As far as medication, there are in fact 2 types: stimulants and a drug known as ghb. How stimulants work is obvious, pick your favorite brand but modafinil is the most common. Ghb works in some not entirely known way by inducing late stage sleep, which narcoleptis do not normally get.
|
|
#
?
Jul 12, 2016 21:36
|
|
|
Modafinil and armodafinil are wakefulness-promoting agents, not the same as amphetamine stimulants. In addition to those two categories plus sodium oxybate (which has an uncertain mechanism of action), narcolepsy can also be treated with SSRIs, tricyclic antidepressants, flumazenil, etc. Lots of info on the Wikipedia page. What diagnostic criteria for narcolepsy did you meet? Someone who eats junk and doesn't move, or someone who's just sleep-deprived, might have daytime sleepiness or "nap attacks," but that's not the same as narcolepsy.
|
|
#
?
Jul 12, 2016 22:07
|
|
|
Severe hypersomnia sufferer here (formerly diagnosed with narcolepsy, but I'm missing one of the genetic markers for it, apparently) The orexin theory is considered problematic still. First and foremost, it doesn't begin to explain why GABAergic drugs plays a role in moderating both cataplexy and hypersomniac symptoms. There are also structural neural issues that can result in something essentially identical to narcolepsy, as well as other neurotransmitter imbalances that will also do a similar thing. BTW, modafinil/provigil is wildly different from the other stimulants prescribed for sleep problems. It's a whole different beast from dopaminergic stimulants (eg amphetamines and methylphenidate). If modafinil is not working that well, talk to your doctor/sleep doctor. I was prescribed it for a while and found it terrible and almost counter productive. My problem wasn't that I was falling asleep, but instead being too tired to do anything. It wasn't until I got on more conventional stimulants that I started to actually get my sleep stuff under control. It sucks to have to take stimulants, but they were literally life changing and after a bunch of years, I still experience almost zero side-effects from them. Also as an interesting aside, people with narcolepsy tend to respond to stimulants differently from people taking them for ADHD or recreationally: there's less high and apparently narcolepsy sufferers consistently build very little tolerance. He's definitely right that for almost all sleep disorders (narcolepsy and otherwise) steps 1 2 and 3 of treatment boil down to sleep hygeine. Exercise, diet, and minimizing excessive caffeine consumption are the next big ones, followed by medication. All of those factors work together to minimize symptoms. For me, I wasn't able to get a proper amount of exercise or have the energy to shop and cook properly good food regularly until I started taking medication. Once I got my exercise, diet, sleep hygeine, and medication stuff sorted out, life completely turned around, but the intervening period was seriously lovely.
|
|
#
?
Jul 12, 2016 22:11
|
|
|
The-Mole posted:It sucks to have to take stimulants, but they were literally life changing and after a bunch of years, I still experience almost zero side-effects from them. I don't have too much to add to the actual conversation, I do have sleep/wakefulness issues as well, not nearly as bad as anyone here, and I believe it's due to a mild case of sleep apnea. But, this line interests me, how old are you, and how long have you been on stimulants? A long-term side effect of them is dementia, so you may be in for a "fun" road ahead of you.
|
|
#
?
Jul 12, 2016 23:41
|
|
|
That would be a real rear end in a top hat thing to say even if it were true. ADHD itself seems to be linked to one form of dementia. (No patients were taking stimulants.) Separately, stimulants are used to treat some of the effects of dementia.
|
|
#
?
Jul 13, 2016 00:12
|
|
|
MF_James posted:I don't have too much to add to the actual conversation, I do have sleep/wakefulness issues as well, not nearly as bad as anyone here, and I believe it's due to a mild case of sleep apnea. But, this line interests me, how old are you, and how long have you been on stimulants? A long-term side effect of them is dementia, so you may be in for a "fun" road ahead of you. Find me a study showing this re therapeutic low-dose stimulant use.
|
|
#
?
Jul 13, 2016 19:58
|
|
|
Anne Whateley posted:That would be a real rear end in a top hat thing to say even if it were true. ADHD itself seems to be linked to one form of dementia. (No patients were taking stimulants.) Separately, stimulants are used to treat some of the effects of dementia. Stimulant use in children is linked to deceased brain mass. I don't know if any studies have been conducted in brain maas on adults though. Needless to say, all medications have side effects. Long term stimulant use is bad for you. It weakens your heart and has controversial effects on the brain. My job is dependent on my thinking, so I choose not to use stimulants for this reason. However, this isn't a fuzzy ADHD diagnosis were talking about. Narcolepsy is a real medical diagnosis with a much more precise and accurate diagnostic criteria. Also that abstract is purposefully misleading. It stated that none of the participants were taking psychoactive drugs, but it didn't mention anything about previous history of drug use. You saw very similar wording in schizophrenia research where the researchers straight up ignored past drug history when discovering a loss in brain matter. Later studies proved a casual relationship that antipsychotics cause permanent brain shrinkage after even short term use. When you're citing psychiatry articles you have to be very careful. Many of the studies are poor quality and have misleading analysis. Moreover, it has become common for companies to hire marketing companies to publish research under a psychiatrists name. Essentially, the field is rotten almost to the core and everyone knows it. twig1919 fucked around with this message at 22:12 on Jul 13, 2016 |
|
#
?
Jul 13, 2016 22:04
|
|
|
I wasn't replying to you and nobody was talking about brain shrinkage. You include no sources for your own weird assertions, don't back up your erroneous claims, then go nuts over the study I linked. The 75-year-old Argentinean women who hadn't previously been diagnosed with ADHD probably weren't on Adderall as kids, and it wasn't a test of any drugs. Congratulations on choosing not to take stimulants. This is a thread where many people need them to survive. Can we get back to narcolepsy?
|
|
#
?
Jul 13, 2016 23:11
|
|
|
|
| # ? May 6, 2024 18:06 |
|
|
Narcolepsy is the big disorder that a lot of people know, just by being the 'medical sleepy thing'. Ever since I got diagnosed and take Modafinil as treatment, it's more the cataplexy that owns me nowadays. My sleep specialist prescribed me Prozac for it, which didn't work well for me. Yeah, my cataplexy didn't flare up much, because I really didn't feel much of anything strong enough to trigger it. Life just kinda happened and I didn't like how it felt, also this wasn't fun. My wife and I talked it over with my sleep specialist and we decided that the cataplexy is mostly manageable as long as I have my cane and try not to fall over onto sharp things. Anyone have any thoughts on cataplexy in particular?
|
|
#
?
Jul 14, 2016 00:00
|
|