Talk:Narcolepsy/Archive 1

Archive 1

Attack/Victim terminology

As a PWN (Person With Narcolepsy) I'd like to remind the editors who feel that the attack/victim terminology is inappropriate that they do not have narcolepsy and cannot appreciate that when a sleep attack occurs (and that is common and correct terminology used by doctors and patients alike) it is akin to being mugged by sleep. Falling asleep against your will is a pretty horrible experience. It is nothing like what normal people experience when they're excessively sleepy. 20:12, August 7, 2006 74.70.57.122

It's rather arrogant to assume that other editors don't have narcolepsy. More than that, it's just plain wrong. As another PWN, I'd like to assure 74.70.57.122 that I am perfectly well aware of what it is like to fall asleep against my will. In my experience, there's nothing particularly different from what nomal people experience when they're excessively sleepy based on memories of my life before narcolepsy. And to call it "pretty horrible" seems like a real exaggeration to me. Sure it's annoying when you've got things to do or embarrassing when it happens in public but that's about it. If 74.70.57.122 wishes to think of themself as a victim then that's up to them. However I think that such an approach smacks of self-pity, so it's not right for me and I don't believe that it's right for the article either. -- Derek Ross | Talk 01:58, 9 August 2006 (UTC)

Oh please. Your experience of narcolepsy is neither unique nor definitive. No one's experience of the disorder is. To assume that what you experience is the same as what others experience is simply wrong. Further, to contradict medical terminology simply because you are not personally comfortable with it is...well...it's the height of arrogance. Your neurologist can certainly explain this to you better than I can.

(17:07, September 23, 2006) (edit) 74.70.57.122

Derek, the proper word is "sleep attack." It is used in many medical sites and articles relating to narcolepsy. I too, remember when I did not have narcolepsy. Before my symptoms were apparent on a daily basis, I was a normal person too. I had stayed awake too long at times and later, kept falling asleep. It is absolutely not the same! I can take all of the planned naps I want to and if narcolepsy wants to attack me, it will. I am not in control of that, therefore..."attack" is the approporiate word. Maybe you have a mild condition, and others have a stronger condition. It is much more than embarrassing and annoying for some people, including me. Narcolepsy also causes depression, hence the "self-pity" and "victim" traits seen in people with narcolepsy. I have been fighting this for 18 years. We will just wait until your condition progresses and see if you feel the same way. As a PWN, I understand people, even if they are more severe cases than mine. You will understand one day soon if your condition worsens. October 3, 2006 - PWN 1988

I too am a person with narcolepsy (and I refuse to refer to myself as being PWN'd) I do not find the attacks horrible. But rather as an extreme state of relaxation which is hard to resist. I enjoy the attacks (even though they mostly occur in public) and refuse medication because the side effects would be worse than the thing they are meant to cure. 24.150.38.245 03:37, 24 September 2007 (UTC)

I would like to point out to Derek Ross, sufferers of narcolepsy experience the symptons to varying degrees, and the individuals response to medication and its side effects also vary. I can only assume, because of your comments " their is nothing particular different from what normal experience when they're excessively sleepy" that you are fortunate to suffer very mild symptons. For most of us the over whelming desire to sleep, the automatic behaviour and other associated symptons, are far from those experienced by non sufferers. Rather than a PWN you are obviously a PWNI or person with no idea. (Bone44888 (talk) 11:29, 22 October 2009 (UTC))

Male/Female prevalence and Attack/Victim terminology

Some text has been taken from the public domain document (written by NIH employee for NIH) at http://grants1.nih.gov/grants/guide/pa-files/PA-93-051.html

And also another public domain document at http://www.nhlbi.nih.gov/health/public/sleep/narcolep.txt

I have now merged and copyedited these versions together -- major Wiki-review is needed. In particular, can anyone provide a cite for the difference in prevalence between the sexes? The Anome

I thought that this was a well known fact (among narcoleptics anyway). Here's a web page, http://www.thehawaiichannel.com/health/1418071/detail.html, referring to one of the many studies which have addressed this aspect of narcolepsy. That study, by the Mayo Clinic, found that the incidence rate per 100,000 persons per year was 1.37 (1.72 for men and 1.05 for women). The incidence rate was highest in people in their 20s, followed in descending order by those in their 30s and then those below 10 years of age and those in their 40s. The prevalence on Jan. 1, 1985, was 56.3 per 100,000 persons. Approximately 36 percent of prevalence cases did not have cataplexy, a higher percentage than found in non-community-based studies.

I'd also like to say that, while it's nice to have the extra information from the NIH, its addition has had two unfortunate effects. Firstly the nature of the article seems to have changed from "Narcolepsy" to "Narcolepsy in the United States". This is a pity since it's a worldwide condition. Secondly, the writer of the NIH article seems to have thought in terms of "attack" and "victim" when writing the original article. This isn't really appropriate. Everyone feels the need to sleep at least once in a twenty four hour period but they don't call that an attack. Narcoleptics just feel the need more often, in some cases much more often, but that doesn't mean they're being mugged by a passing dream! Let's reword this to avoid the attack/victim stuff.

Lastly, the NIH article is a bit out-of-date. The underlying mechanism for narcolepsy was discovered a couple of years ago, see http://www.talkaboutsleep.com/news/narcolepsy_cause_comments.htm, yet we have no indication in the article that this is so, despite it being *the* major recent advance in the understanding of narcolepsy. It's the first to give an indication of a fully effective treatment to replace the partially effective symptomatic treatment of the last 100 years. -- Derek Ross

Concur with and expand upon Derek Ross that the focus of the NIH article is, not only one of discussion of the 'victim' et al, but presupposes that the only way to live with Narcolepsy is through medication.

The drugs associated with the treatment of Narcolepsy are strong, side-effect ridden drugs. Many of the tricyclics would never make it though today's stringent tests. In addition, as the actual cause of the condition has only recently been discovered, the existing medications take a sledgehammer to the symptoms of the condition, rather than effectively treating its cause. Until a geniune causal treatment can be developed, the idea propagated in the article that all narcoleptics must take daily doses of some pretty appalling drugs is only reinforcing the image of narcoleptics as helpless sufferers. I used the available medications for just three years before realizing that I preferred (sleepy) sanity to the alternative of an erratic and addicted wakefulness. Since then, I have been pretty successful in life, albeit with a high number of bruises and concussions along the way. Suggest a break-out article or subhead within this one "The pharcotherapeutic treatment of narcolepsy" or similar.

--Sepenidur 12:14, 20 Dec 2004 (UTC)

My neurologist described narcolepsy in a cool way. Think of a venn diagram with three non-overlapping circles representing consciousness, unconsciousness, and dream-state. A narcoleptic's brain has overlapping circles. <>< tbc 18:30, 2 Mar 2005 (UTC)

Usefulness of photo

The new photo is pretty pointless. It could just as easily have been titled "Narcoleptic taking a nap on the carpet" (something which most narcoleptics have done) since there's nothing in the photo which is specific to someone exhibiting cataplexy (where you're conscious) rather than sleep (where you're not). It doesn't even demonstrate the big difference between a cataplectic episode (which is relaxed) and an epileptic episode (which is much more likely to be rigid or active) so I would just remove it. Anecdotes about the circumstances causing cataplectic episodes are far more interesting to other people than pictures of someone during one. So if you want to add something to the article an illustrative anecdote would be far better than a rather uninformative picture. -- Derek Ross | Talk 06:49, 10 August 2005 (UTC)

it's just some person lying on a carpet, you can't tell whether s/he is sleeping, awake or dead. really not very useful at all, I'm afraid... 12:37, 19 October 2005 (UTC)

I find the photo extremely, extremely useful and I am going to defend it here soon, even if it is a fabrication! (ie, until a non-fabricated version were found, even if the person pictured were discovered to portray just a normal person taking a nap!) heads up! :)

• You didnt explained why you find it extremely usefull. Really, this pic add nothing to context and don't mean anything. I am taking it off. And will do it again unless anybody give me a good explanation why this useless pic should be there. SSpecteR 28/05/06

192.80.65.246 18:16, 3 January 2006 (UTC) Anon.

This is just an idea - but if a screenshot could be taken of Rat Race, where Rowan Atkinson is asleep standing up (his character is a narcoleptic), would that be fair use and more useful? El Pollo Diablo (Talk) 00:52, 18 January 2006 (UTC)

I'd certainly be happier with that. -- Derek Ross | Talk 05:42, 18 January 2006 (UTC)

Why not include a link to videos of actual cataplexy attacks, and include a still shot from one. The Stanford Narcolepsy site has had movies available for years showing cataplexy in humans (hcrt-deficient) and canines (Hcrt or hcrtr2 deficient). Here is the link- The link is unlikely to change in the near future.

http://med.stanford.edu/school/Psychiatry/narcolepsy/moviedog.html

You've got to be kidding me. It's a picture, guys. A PICTURE. 74.46.20.2 (talk) 06:15, 8 July 2008 (UTC)

"Cataplexy is unique to narcolepsy"

This statement is made out of ignorance, though it is understandable since so many medical practitioners are ignorant of the more obscure manifestation of cataplexy as well.

I became familiar with the less common manifestation of cataplexy because it happened to me. I have never suffered from narcolepsy before and suffered cataplexy once 5 years ago, and have never had anything remotely like it occur since. I was just waking up, specifically from a dream, meaning I was transitioning from REM sleep to the waking state and I was stretching out my legs in bed when I got a sudden cramp in my lower leg. The cramp was extremely painful, a very acute, sharp pain. I got up and walked/limped to the bathroom and as I was walking, I began to lose motor control and sensation. My body went limp and collapsed. While the loss of motor control was happening, I lost my sense of hearing in one ear completely, and hearing in the other ear became muffled. I also lost the sense of touch and couldn't feel the floor beneath me feet as well as any sense of equilibrium. I also couldn't lift my eyelids (I know I didn't lose sight since everything looked flesh colored, the color you can see by closing your eyes and looking at a light). In terms of consciousness, I was fully awake when I emerged from REM sleep, but as my body's controls were shutting down, my level of consciousness declined to a level where I was very groggy and barely conscious. After about 7 minutes, motor control and senses came back up.

When I went to the doctor (general practitioner), he was at a loss and told me "I don't know what to say. These things happen sometimes. If it occurs again, call me". From what I was able to find out on my own, if a person receives a sudden physical or emotional shock within a narrow time window of emerging from REM sleep (something like 30 seconds), the mind will think the body is still dreaming and re-institute the muscle paralysis which accompanies dreaming as well as disconnecting the senses (though the degree of disconnect apparently varies just as one can sometimes have the sense of hearing active in a dream and can hear people's voices from the waking world in their dream). This is probably triggered as a response to proximity to REM sleep and the type of neurotransmitters produced by the sudden pain. Apparently, most people will never experience this form of cataplexy in their life and the few who do, most of them will only experience this once in their lifetime. I read this online when doing research about REM sleep and stumbled across the lesser definition for cataplexy which happened to explain what happened to me earlier. I'm sorry I don't have a source for it, though I found it online 5 years ago. When I found this, I became curious to find more pages talking about it, so I entered the terms into a search engine, and was disappointed when something like 95-98 hits out of 100 come out talking about narcolepsy and make no mention of the other way which cataplexy can occur. I guess that is a testament to its obscurity.

It would help to revise the page on cataplexy to include this as well once sources confirming my experience and statement are found. -- Anon

↑Who ever wrote this "...I was stretching out my legs in bed when I got a sudden cramp in my lower leg. The cramp was extremely painful, a very acute, sharp pain. I got up and walked/limped..." you seem to be desribing sciatica which is a whole other thing. I suffer from sciatica in my lower leg, it can be rarely spaced between years like yours was or happen all the time. Rochelle-Marie-C (talk) 03:11, 7 November 2009 (UTC)

What you say doesn't surprise me. Narcolepsy covers a broad spectrum from those who sleep little more than normal and rarely, if ever, have cataplexy to those who struggle to lead a normal life because of the frequency of their symptoms. At the "rare" end, it's difficult to say whether the person has narcolepsy or not since it all begins to blend into the "normal" population. I could well believe that there are people who have a very occasional bout of cataplexy when they wake at a bad time during the sleep cycle even though they would never be diagnosed with narcolepsy. The article needs changing on that point. -- Derek Ross | Talk 05:11, 23 September 2005 (UTC)

(Same poster as the above story on cataplexy): I guess it gets at how a disorder is defined. Is it defined as occurrence of a trait (cataplexy in this case) regardless of frequency or is it defined as frequency of occurrence of that trait? As you said, what is defined as "normal" seems to be part of the issue. In the case of the question I posed, it's like a one-time glitch in one case versus a system error in the other case. -- Anon

I see what you mean. That's a good way of describing it. As for the definition of the disorder that can be difficult in borderline cases, so it's normally diagnosed on the basis of occurrence of a group of symptoms rather than on the strength of a single one. Generally speaking you would need to be suffering from sleepiness, cataplexy and perhaps sleep paralysis, before your doctor would give a confident diagnosis. That means that there are probably quite a few people who are technically narcoleptic but so mildly that they don't have obvious enough cases to be diagnosed. -- Derek Ross | Talk 18:31, 27 September 2005 (UTC)

You are actually describing SLEEP PARALYSIS, not cataplexy. Cataplexy is when you lose all or some muscle and body control if you experience certain emotions. Example: seeing, hearing, or even thinking of a funny subject; getting suddenly angered or upset; getting startled. Cataplexy does not simply come on upon waking up. Also, you don't usually lose your hearing, sight, or feeling of touch.

Cataplexy is and definately has been proven a definate sign of narcolepsy. Look this up on any narcolepsy site (other than this one), or any medical booklet. There is no other cause of cataplexy. So cataplexy is UNIQUE to narcolepsy and that statement is not made out of ignorance, but out of definitive research on narcolepsy.

I noticed Derek responded and said "a good way of describing it." I thought he had narcolepsy??? (TNikki1, March 15, 2007)

I think what's been described above by Anon can more easily be a severe episode of orthostatic hypotension (headrush). Not cataplexy nor sleep paralysis. During an episode of cataplexy, the patient is still fully conscious and not confused or disoriented to the degree that's been described, as well as necessarily occurring after a sudden onset of an extreme emotion. Sleep paralysis occurs immediately upon awakening, while the patient is still in bed, preventing them from "getting up to go to the bathroom". Orthostatic hypotension can easily be described as headrush, which everyone has felt, but when severe, like after a prolonged period of rest, it can manifest as what feels like "passing out" or "fainting". What has been described has happened to me before as well. After waking up and having a few cigarettes while lying down, I decided to go to the kitchen and get food. I fully collapsed after ten feet and dragged myself blindly (I actually could not see) back to bed. As a smoker, I was more susceptible to this, due to nicotine's effect as a vasoconstrictor. Note, however, that I am not narcoleptic, nor have I had an episode of cataplexy. Also, while I am not a doctor, I am a polysomnographic technician, so I've been trained to know the difference between these things. 67.80.65.206 (talk) 05:12, 23 October 2008 (UTC)

Attack/victim terminology again

One of the things I find annoying about descriptions of conditions like narcolepsy is when it's characterised as something external which attacks you. It isn't. It's part of your nature that you have to live with day-in day-out. In principle the only difference between narcoleptics and the rest of the population is that narcoleptics have to sleep more frequently (sometimes much more frequently). If we don't do it often enough voluntarily then we will do it involuntarily. We are no different from the general population in that regard except that we are on a much shorter cycle. Few people can stay awake for more than twenty-four hours without starting to take involuntary naps. That doesn't make them attacks. That's why I dislike this attack/victim stuff. It might be appropriate for some condition caused by an external agent like a tiger or the flu. It's hardly appropriate for a condition (involuntary sleep) which affects the entire population once every twenty-four hours and narcoleptics rather more often. -- Derek Ross | Talk 19:22, 11 December 2005 (UTC)

This is lay terminology, although "attack" is commonly used for any episodic condition (compare "heart attack"). The words "victim", "sufferer" and the terms "affliction", "malady" are all loaded and imprecise. The word "patient" is fairly neutral (although it means "sufferer: in Latin), and "condition" is a more neutral term than alternatives. JFW | T@lk 21:02, 11 December 2005 (UTC)

In principle the only difference between narcoleptics and the rest of the population is that narcoleptics have to sleep more frequently (sometimes much more frequently). If we don't do it often enough voluntarily then we will do it involuntarily. We are no different from the general population in that regard except that we are on a much shorter cycle.

Posted unsigned at 03:49, on November 5, 2006 by User:128.122.253.212

At one point I was sleeping 23 hours a day. During the one hour a day I was out of bed, I still experienced sleep attacks. It's not a case of "Silly person, sleep enough and you won't have to deal with this minor annoyance."

Posted unsigned at 03:49, on November 5, 2006 by User:128.122.253.212

I still disagree. You may not actually experience these attacks with your narcolepsy, but others do. They have nothing to do with the amount of sleep you get (as the signer above stated). Also, they are not the same as "extreme daytime sleepiness." They are definately attacks without warning, and can't be avoided, no matter how much you sleep or what drugs you are on. The drugs they have for us only control the sleepiness, not these attacks. I think people are confusing the attacks with the EDS (extreme daytime sleepiness). And also, the people who have discussed the terminology being wrong do not really know what the attacks are. (TNikki1, March 15, 2007)

Doesn't this all just fall under the category of EDS (excessive daytime sleepiness) as a symptom? Deatonjr 06:28, 16 March 2007 (UTC)

No, because you may not even be experiencing EDS at the time of the attacks. They just happen usually without warning, and you may have just awoke from a nap a few minutes prior.-TNikki, March 20, 2007

I write and ask sites that still say "characterized by sleep attacks" and ask them to say 'may experience sleep attacks" because everyone with Narcolepsy doesn't experience "attacks" but many people beleiev that such attacks are the definative or worse the only symptom of narcolepsy. I also don't like the term "attack" because I believe it reinforces the misconception that narcolepsy is related epilepsy and that "attacks" come out of nowhere. —Preceding unsigned comment added by 76.181.234.127 (talk) 15:40, 21 June 2009 (UTC)

Codeine

I don't believe that Codeine is used for the treatment of narcolepsy. On, or off label.

Read the several references given to clinical studies [1]

Jclerman 19:44, 9 February 2006 (UTC)

Interesting! I wasn't aware of that. Thanks for the info. -- Derek Ross | Talk 20:12, 9 February 2006 (UTC)

The article is lacking references. I'll put the selegiline studies which I put and can copy from the Spanish version. Other would take much longer time. If you know of some, please introduce them. Jclerman 20:16, 9 February 2006 (UTC)

Done. The selegiline link is in the article now. Jclerman 20:21, 9 February 2006 (UTC)

There may have been research with Codeine, but I still do not think it is ever used. Here is another reference that disputes its effectiveness: [2]. 68.100.41.73

The study concludes: << Codeine consistently results in subjective clinical improvement. However, this is not reflected in the objective measures generally used to assess daytime sleepiness >> I comment: what, IMHO is important for the patient is the improved ethology[sic] such as less naps, rather than the controversial tests. I'll be glad to discuss this further if you contact me in my personal discussion page. I personally knew a couple of narcoleptics who were using it. Jclerman 01:42, 12 February 2006 (UTC)

I don't think that objective sleep tests are controversial. It is might understanding that they can quite accurately determine weather one is asleep or not. I also believe that drugs such as Codeine can adversely affect the perception of ones napping habits as well as the ability to accurately document them. As for the patients you knew who were taking Codeine, were they part of a research study? Were they prescribed Codeine for long term treatment? User:Exit 0

That's why I mentioned ethology[sic] as important for the daily life of a narcoleptic. It's not sleep or awake states, but intrusions of microsleep that count. And these are NOT usually observed because the EEG epoch is defined as 30 full seconds. Anything shorter is not the purpose of a routine test. Not all narcoleptics have the same reaction to codeine. And it needs a long time of use and titrations which were not conducted in the short time of that study. Interestingly enough, the effect was discovered by patients. Not by physicians.

Jclerman 21:32, 19 February 2006 (UTC)

Codeine is a kind of sedative and calm the mind/nerves. How can it help by narcolepsy? You need something to get drive! --Fackel 11:50, 1 June 2006 (UTC)

Suppose that the part of the brain that makes a person sleep is over-active. Then sedating it with a small amount of codeine might well mean that the overall effect is to wake the person up. -- Derek Ross | Talk 14:55, 1 June 2006 (UTC)

Up to a certain dose depending on dosage history, codeine doesn't sedate (some) narcoleptics and it seems not to be very efficient as analgesic. Same for other opiates. --Jclerman 03:40, 26 July 2006 (UTC)

Funnily enough Ritalin, a stimulant, causes some narcoleptics to fall asleep within the first twenty minutes of taking it before waking them up as its effect progresses. So it's not just codeine that can have a contrary effect. -- Derek Ross | Talk 04:09, 26 July 2006 (UTC)

I could understand codeine, as an agent to help regulate nighttime sleep. My neurologist prescribes Xyrem for that purpose.Deatonjr 06:30, 16 March 2007 (UTC)

Waaa.

Im sorry that you have a problem with sleep, but to fight with each other about who has it worse and why they dont know anything is ridiculous. Here i was doing a report and then i clicked on discussion, when it should have said, senseless bickoring or people who cant deal with life. you could have no legs, you could be paralyzed from the waist down, you could have seroius brain trauma. Play the hand life has delt you.

• I totally agree. I have narcolepsy also and I find the "discussions" on this page to be pathetic. Yeah, so narcolepsy/cataplexy and the whole nine yards makes life difficult... but there are much worse things out there. Check out epidermolysis bullosa. It makes narcolepsy look fun. - Prezboy1 23:39, 10 December 2006 (UTC)

You hit the nail on the head there. -- Derek Ross | Talk 00:39, 11 December 2006 (UTC)

Well, I would suggest that you look up the word discussion in Wilkapedia and you will reach the word "Debate." And that is what we are doing. I did not see anyone arguing about who had what worse. I just see different people's opinions and that is what a debate or a discussion is. Also, in order to do a credible report, you would not use blogs, discussions, or message boards. You would use the regular article section to get the facts and other research online through the links provided at the end of the articles. A report has to be credible if you are doing this for an assignment. TNikki, March 20, 2007

Wait, wait...

the article says narcoleptics go straight into REM sleep when they nod off. Is it not normal to just suddenly start dreaming when you fall asleep? I've always done that.. It's the easiest way to come up with something creative, you just relax and let ideas start forming on their own as you drift off, then snap awake and write them down. —The preceding unsigned comment was added by 64.122.208.51 (talk) 18:13, 4 January 2007 (UTC).

No it's not normal. People generally have a 20 minute period of non-REM sleep when they nod off. Only after this inital period do they start dreaming. Going straight from wakefulness to dreaming sleep is one of the classic narcolepsy indicators used for diagnosis. It's not enough to confirm the condition on its own but it is indicative. -- Derek Ross | Talk 21:34, 4 January 2007 (UTC)

Although it's worth noting that most people will experience it occasionally (rarely) at some point in their life, just like with hypnogoggic/pompic hallucinations and so on. SamBC 01:20, 16 July 2007 (UTC)

64.122.208.51, It is likely you had a hypnogagic hallucination or actually started dreaming later than you thought. A person often thinks they started dreaming as soon as they fall asleep, or for the entire duration of their sleep, when in reality dreams get more and less vivid with the changes in stages, with no dreaming occurring in stage 1 sleep and mild to no dreaming occurring during stage 2 sleep, the most vivid occurring during stage REM sleep. The brain has no sense of time while sleeping, and after waking up, the brain tries to make sense of the dream and often connects multiple, separated dreams together. Derek Ross, it should be noted that the broadest symptoms of narcolepsy are EDS and DIMS. Just because someone thought they started dreaming at sleep onset doesn't mean they actually went into stage REM sleep at sleep onset. You need a PSG to know that or even suggest that. It is perfectly normal for a person to think they started dreaming at sleep onset. 67.80.65.206 (talk) 05:33, 23 October 2008 (UTC)

Understood. It is of course quite possible that a person might believe themselves to start dreaming immediately even though it takes a PSG to determine whether or not they actually do. -- Derek Ross | Talk 03:45, 24 October 2008 (UTC)

Another issue is that while going to sleep, one can have confused thought processes which aren't necessarily dreams. I know that if I'm trying to maintain a conversation when I'm dead tired, I can start talking total nonsense as I start drifting off. I've also listened to lectures while very tired and started having confused and nonsensical thought processes while appearing (I hope) to be awake. --Slashme (talk) 10:43, 24 October 2008 (UTC)

Unsourced

Cite sources for: "Investigations started in 2005 by the British Medical Association looked into the possibility of a cure for narcolepsy. Previously, narcoleptics reported minimalisation of cataplectic attacks, or complete remission, following courses of medication including selegiline. This was shown to increase the possibility of repeated childhood illnesses such as chickenpox, mumps and whooping cough. The damage done to the immune system may allow orexin to function correctly, leading to a potential cure. " Twmporarily deleted from article. Jclerman 20:12, 10 January 2007 (UTC)

alcohol as a medicine

i know it sounds strange but you could probably use alcohol as a medicine for narcolepsy the same way as xyrem is used —The preceding unsigned comment was added by The Right Honourable (talk • contribs) 10:58, 18 March 2007 (UTC).

Nope. Alcohol sends the average narcolpetic to sleep in no time flat. -- Derek Ross | Talk 21:38, 18 March 2007 (UTC)

That is what xyrem does, sends you straight to sleep; you take it at bedtime. But it also forces your body to get all the stages of sleep up to and before the REM stage. Alcohol may put you to sleep...but it will be the same damaged sleep. TNikki, March 20, 2007

I have a friend with narcolepsy and he says that alcohol keeps him awake. He also told me that his father was an alcoholic and could have also had narcolepsy. I am not sure if there is something called the "average narcoleptic" since the illness shows itself in a variety of ways. For example, I have text book symptoms of cataplexy but I do not fall asleep quickly, so I fail the standard tests of narcolepsy (moving to REM sleep quickly). So it could be that this condition is not the same for everyone. Doghouseman 20:39, 2 November 2007 (UTC)

I have narcolepsy and whenever I take alcohol I got sleepy real fast. I don't know whether this is the reaction with the medication I take for all the medication I take have a label saying no alcohol.Wizcomp150 (talk) 22:35, 23 April 2008 (UTC)

I agree with Doghouseman. If you do have the same type of narcolepsy as his freind then that's useful information to you, and it should be posted.Ryuzaki0008 (talk) 17:55, 16 October 2008 (UTC)

It sounds like a generally very dangerous, addictive medication to try. If you had to write a package insert for ethanol, it would be as long as your arm with a whole range of side-effects, including depression, liver damage, cardiovascular effects, etc. etc. If a drug company had invented alcohol today, there is no way they'd get it licensed. --Slashme (talk) 10:46, 24 October 2008 (UTC)

History?

I believe the diagnostic term "narcolepsy" appeared only in the 2nd half of the 20th century; am I right? Svato 22:28, 4 April 2007 (UTC)

Edited info for employer

Might want to keep tabs on that last edit - for "employer"' ip address specifically because it targeted treatment of Narcolepsy with Xyrem. Deatonjr 03:14, 17 April 2007 (UTC)

Pop culture

Do we really need to reference every instance of some anime character having "narcolepsy?"

More to the point, how about we develop the section to actually be somewhat critical, as suggested in the featured article thingummy. SamBC 01:33, 16 July 2007 (UTC)

Modafinil as a Stimulant

While I completely agree with teh reasoning behind reverting my recent edit in the description of modafinil, I am concerned that simplifying the case by lumping it in with gross stimulants like amphetamines promotes negative views that I myself have come across (narcoleptics on medication being akin to speed freaks, for starters). Is there any way we can agreeably word this that doesn't contradict pubchem, but also mentions in brief that modafinil belongs to a very different class of drugs? SamBC 17:00, 16 July 2007 (UTC)

I fully understand your concerns. I have my own anecdotes to tell about the topic including "misunderstandings" by pharmacists. I just got tolerant to selegiline (in fact another amphetamine-like by its metabolites) and I'm trying modafinil. What do you think of the following paragraph:

The drowsiness is normally treated using amphetamine-like stimulants such as methylphenidate, racemic amphetamine, dextroamphetamine, and methamphetamine), or modafinil, a new stimulant with a different pharmacologic mechanism. Other medications...

Feel free to rewrite it and replace it in the article. If you find a short description of the "new pathway" please include it. I don't like to use the marketing descriptions. A sleep physician told me that modafinil acts on the histamine receptors. I'm not sure and have no time to research it now. Also, there was indeed a few yrs ago somebody developing a histamine receptor drug for drowsiness and ADD. Jclerman 04:04, 17 July 2007 (UTC)

I like it, but I'm not editing it now, at least, as I'm a tad sleep deprived... oh the irony. SamBC 04:10, 17 July 2007 (UTC)

Beet (from Beet the Vandel Buster) appears to be narcoleptic

Similar to Luffy and Trace from One Piece, Beet the Vandel Buster appears to be narcoleptic. He falls asleep rather abruptly after his 3 days of being awake are complete. Think we should add it to the article?

199.111.82.215 (talk) 15:26, 8 February 2008 (UTC)

If he can stay awake for three days, he's not narcoleptic. The fact is that anyone who stays awake for more than 24 hours is likely to "fall asleep rather abruptly". Some one who only does so after three days awake is the reverse of narcoleptic. -- Derek Ross | Talk 17:57, 8 February 2008 (UTC)

Nuked part of the pop culture.

I added one citation and nuked much the rest of the pop culture section. We need to be very careful when making assertions about living people, as that falls under BLP guidelines which are stricter when it comes to verifiability. Also, every fictional character that falls asleep randomly need not be mentioned. Gigs (talk) 16:20, 25 April 2008 (UTC)

I hope this is appropriate for me to add my 2cents here - I'm not about to make the edit myself because I've never done such a thing (and i'm not entirely sure about the appropriate use of the talk section, so my apologies in advance for not going off and learning about it before leaving a comment), but I'd like to suggest to the folks that do maintain this article to nuke that whole pop culture section. It's ridiculous. I know some other articles around wikipedia do it, but for narcolepsy? Really? As a narcoleptic myself it's borderline insulting and offensive to see that this article contains just as much "pop culture" references as actual useful information - and it's basically a list of things that parody narcolepsy. There's more text about "Anime and manga" references than there is in the "Diagnosis" section. Please, somebody correct that. It's silly. A discussion of a niche genre of cartoons and comic books doesn't belong in a medical article. I hope somebody that does understand editing guidelines and knows how to properly go about it, do so, for the respect of wikipedia and what it's here for. Thanks. 72.231.223.234 (talk) 02:02, 13 October 2008 (UTC)

It depends on your viewpoint. While narcolepsy is parodied in many ways (and usually incorrectly), the fact that it is parodied so widely and extensively is notable itself. The condition is relied upon for many plots. I will say, though, that there are too many entries that just don't fit here. Just because someone releases a song called 'Narcolepsy' doesn't mean it should be added here, and such items will be removed. IMO, much of it comes down to a simple rule: If you asked a common person about narcolepsy, the majority of them would know more about the parodies than the actual condition. Rurik (talk) 03:24, 13 October 2008 (UTC)

There are simply too many popular culture references. They are not particularly useful. I personally have a need for a good synopsis of the disease, and I think this is the more likely use case for the article. --Dwcsite (talk) 06:17, 4 September 2009 (UTC)

Pharmaceutical treatment

If I recall correctly, there are a number of drugs to treat narcolepsy such as Xylem and Cylert in existence. Some section on this should probably be added, no? Phil Sandifer (talk) 22:43, 16 July 2008 (UTC)

Thanks for your comments. The whole section on treatment had been vandalized in early June and nobody noticed it. Now it's been restored. Jclerman (talk) 05:51, 17 July 2008 (UTC)

Just Figured

I just thought I'd mention that I deleted the thing about the manga character who had narcolepsy and slept for years at a time. That's not narcolepsy. Thats Rip Van Winkle Disease(yes, thats the real name.) Rip Van Winkle causes people to fall asleep for days, weeks, months, and years at a time. Narcolepsic sleep doesnt last that long.Ryuzaki0008 (talk) 18:03, 16 October 2008 (UTC)

Why locked?

I don't see much recent evidence of vandalism in the history. It would be great to have it unlocked - the first paragraph is repetitive (a person falls asleep at random), and fails to mention cataplexy which is common in narcoleptics. Some narcoleptics present with only cataplexy... —Preceding unsigned comment added by 24.62.226.103 (talk) 20:48, 11 December 2008 (UTC)

Fair enough. There was a specific reason but it's probably no longer valid. I've lifted the editing protection but retained the page-moving protection. Go ahead with any edits that you want to make. -- Derek Ross | Talk 05:55, 12 December 2008 (UTC)

Many thanks - I have made a few changes, but will come back to this in the new year. —Preceding unsigned comment added by 89.241.181.57 (talk) 16:57, 17 December 2008 (UTC)

That is not narcolepsy. Narcolepsy is when the brain secretes the chemicals to sleep at inappropriate times, it lasts moments to hours (if you are undisturbed) —Preceding unsigned comment added by 67.142.167.27 (talk) 18:45, 20 August 2009 (UTC)

What happened to the old page?

This is my first time making any comment on wiki, please be nice. When I first suspected I had narcolepsy I of course looked it up on wiki and found the page quite informative (this was probably 2-3 years ago). I decided to wiki it again today to see if they had updated the page. Unfortunately, I don't find the symptoms section nearly as informative as it was last time I check it (at least from the point of view of someone who suspects they have narcolepsy but are not quite sure)

It jumps form EDS, then off to the other common symptoms, then back to EDS. The one sentence summary of sleep paralysis and hypnagogic hallucinations do not do these symptoms justice. Having a small paragraph for each symptom and how they directly apply to narcolepsy (as it was before) would be much more informative. I know the links to pages concerning these symptoms are present, but its a mess trying to read through it and see what really applies to narcolepsy. For instance, the link for 'hypnagogic hallucinations' is redirected to 'Hypnagogia', which is the state between consciousness and sleep, and does not go into much detail about the hallucinations themselves. This is a shame because there is actually quite a lot to say about these.

Also the page states "Hypnagogic hallucinations are vivid, often frightening, dreamlike experiences that occur while dozing, falling asleep and/or while awakening". I don't know about other people, but from personal experience there is nothing 'dreamlike' about them. You know for a fact that you are awake, you are completely aware of your surroundings, you just see stuff that's not there.

For my last point, I was wondering if anyone came across research that suggested that sleeping on your side rather than on your back makes a difference for sleep paralysis and hypnagogic hallucinations. From talking with other people with narcolepsy and that have these symptoms, we all agree that these always happen when sleeping on our backs (in bed or in a recliner). Never has it happened to me or anyone else I have talked to, to have these episodes while laying on the side. If this is indeed true, wouldn't it be an important tidbit to know? This has helped me to greatly reduce the recurrence of these symptoms.

I do not have the knowledge or writing skills to edit anything on this page (and besides it's locked), but I hope the next person to edit it will keep my comments into consideration.

Shrimpstoo (talk) 03:01, 18 February 2009 (UTC)

Yeah, this article is in pretty poor shape. It's about as bad as it ever was. Maybe a medical condition project could adopt it for awhile.... 06:17, 20 February 2009 (UTC)

Popular culture references

I believe the section is worthy of it's own article. Please see my proposed cut and paste to remove the lists and put them into a new article List of references to narcolepsy in popular culture. The proposed changes are at -sandbox link deleted: see below- and will remain there until I get feedback here (not in the sandbox!) as to whether to proceed with the change. Depending on initial feedback for a few days or weeks I'll either start the new page or not. Or if one of the usual editors wants to make the page go ahead. Then whatever the outcome, I'll clean up my sandbox and be gone. Regards.Trilobitealive (talk) 01:36, 3 June 2009 (UTC)

Or perhaps just References to narcolepsy in popular culture?Trilobitealive (talk) 02:43, 14 June 2009 (UTC)

I think that these references, are very important to helping people get a more complete picture of the experience of having narcolepsy. Dealing with the public perception of narcolepsy is a part of the experience of having narcolepsy. Also when newly diagnosed I read all the non-fiction I could find then looked for novels with narcoleptic characters to get a deeper understanding of the disorder-like I read historical novels to get a deeper understanding of history. I fear that by making it its own section, it will have less readers. I know it is simple to click on a link but people are lazy. I doubt many people will think to look up narcolepsy in populor culture directly. All in all it was nice to see so many intelligent people concerned about perfecting this article! --76.181.234.127 (talk) 15:58, 21 June 2009 (UTC)

Thanks for the reply. I don't agree with your conclusion; my preference is to put lists on their own pages. But I think that your point of view is a valid one. Since I'm not one of the usual editors of the page I'm going to recognize your opinion as the present consensus and not change the article.Trilobitealive (talk) 17:27, 21 June 2009 (UTC)

Fight Club

How well does the begining of that film reflect the symptoms of Narcolepsy? The Narrator tells that doctor that he is suffering from the condition, is he right? If so, i believe it is definitely worth including in the popular culture references, as it was re-watching the film that sent me to this article. —Preceding unsigned comment added by Feneer (talk • contribs) 23:16, 22 June 2009 (UTC)

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