I was diagnosed with narcolepsy. Does anyone else have this? I would love to try and connect because this shit is weird.

7/13/2015 8:51:48 AM

What are your symptoms? Just out of curiosity. I know the stereotype of a narcoleptic person who just falls asleep randomly during the day while going about their normal activities, yet i think thats an exaggeration for comedic effect.


No, im not narcoleptic, though sometimes i feel that way when i have to wake up early.

7/13/2015 9:01:21 AM

Yeah see i wish i was but i'm not.

7/13/2015 9:22:41 AM

no i'm not narcoleptic, why would youjiiiiiiiiiiupppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

7/13/2015 9:53:51 AM

So the classic symptoms from http://narcolepsynetwork.org/about-narcolepsy/faq/ are:

Quote :

"Question:What are the symptoms of Narcolepsy? Answer: Narcolepsy has five primary symptoms: 1. Excessive Daytime Sleepiness (EDS) – An overwhelming sense of tiredness and fatigue throughout the day 2. Cataplexy (C) – Events during which a person has no reflex or voluntary muscle control. For example knees buckle and even give way when experiencing a strong emotion – laughter, joy, surprise, anger or heads drop or jaws go slack from the same kind of stimuli 3. Sleep paralysis – A limpness in the body associated with REM sleep resulting in temporary paralysis when the individual is falling asleep, or awakening. Episodes can last from a brief moment to several minutes. 4. Hypnogogic hallucinations – Events of vivid audio and visual events that a person with narcolepsy experiences while falling asleep, or while awakening 5. Disrupted Nighttime Sleep (DNS) – The inability to maintain sleep for more than a few hours at a time. Other symptoms reported by people with Narcolepsy can include: 6. Automatic Behavior (AB) – The performance of tasks that are often routine, dull or repetitive without conscious effort or memory. 7. Memory Lapses – Difficulty in remembering recent events, actions or words"

So I experience all of those in different degrees, specifically:

a. Super excessive daytime sleepiness and drowsiness that leads to emergency naps (sleep attacks, EDS)
b. Ability to fall asleep quickly at night but difficultly staying asleep
c. Frequent sleep paralysis (1-3 nights per week, sometimes with multiple episodes at night)
d. Extremely vivid dreams that I can recall throughout the day in detail (every day)
e. Auditory and visual hallucinations almost every time I fall asleep (hyponogocic hallucination)
f. Mild cataplexy that manifests as a sensation of falling while I'm standing up or walking (though I've never collapsed--this is the most common "cartoon" symptom of narcolepsy)
g. Microsleeps: unable to recall conversations and small activities around the house (verified by hubs and friends--basically going on autopilot when putting things away or driving or ending up in a room but not knowing how I got there)

Assorted anecdotes from my life:

-When I was in elementary school I was convinced I had been abducted by aliens because of frequent episodes of sleep paralysis.

-For most of my life, I've had giant bruises (like, 1-2" diameter) on my legs that I cannot explain. Everyone sometimes gets mystery bruises, but I get them 1-2 times a month. I used to just assumed I bruised easily and that was why I could not recall them, but then after the diagnosis my husband pointed out that we do weird, BDSM sex stuff and I do not bruise that easily from that. The going theory is that I experience a microsleep episode, become somewhat clumsy, run into a coffee table or other furniture, and then don't remember it.

-I take Adderall for anxiety/ADD, which is why some of my sleepiness symptoms and focus improved--ADD can be similar to sleep deprivation and similar medications are used to treat ADD and narcolepsy.

-Before the Adderall, I would sometimes have to pull over on the way to work--no matter how much sleep I got the night before--and take a nap so that I wouldn't run off the road like I did that one time.

-Extreme sensitivity to temperature. I am always cold when awake and sweating rivers at night. I've tohught for a long time this might be a thyroid issue, but my blood work and related testing were always normal. Temp sensitivity is a normal side effect of sleep deprivation

[Edited on July 13, 2015 at 10:25 AM. Reason : A smattering of syptoms]

7/13/2015 10:23:55 AM

You may want to shoot a PM over to Samwise16. I believe she was diagnosed with narcolepsy and is a very informative person in general.

http://thewolfweb.com/message_topic.aspx?topic=637154&page=1#15875699

7/13/2015 10:29:41 AM

More symptom descriptions:

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm

Quote :

"Involuntary sleep episodes are sometimes very brief, lasting no more than seconds at a time. As many as 40 percent of people with narcolepsy are prone to automatic behavior during such “microsleeps.” Automatic behavior involves performing a task during a short period of sleep but without any apparent interruption. During these episodes, people are usually engaged in habitual, essentially "second nature" activities such as taking notes in class, typing, or driving. They cannot recall their actions, and their performance is almost always impaired. Their handwriting may, for example, degenerate into an illegible scrawl, or they may store items in bizarre locations and then forget where they placed them. If an episode occurs while driving, individuals may get lost or have an accident."

http://www.nytimes.com/health/guides/disease/narcolepsy/print.html

Quote :

"Microsleep and Automatic Behavior. In some cases, patients have so-called microsleep episodes, in which they behave automatically without conscious awareness. Such automatic behavior may not be recognized as part of a disorder by either patients or the people around them. Some examples include: People with narcolepsy can be driving or walking competently but end up in a location different from the intended one. A narcolepsy patient can be carrying on a conversation and jump from one unrelated topic to another or just trail off and stop talking altogether. The patient may suddenly perform bizarre actions, such as putting socks in the refrigerator. Patients may have severe forgetfulness. Their movements may suddenly become slow or clumsy. In some cases, their behavior may resemble some forms of epileptic seizures."

So:
If you think you have a problem, you should assess yourself on the Epworth Sleepiness Scale. It's a diagnostic survey to help people identify likelihood they have a problem that needs to be investigated regarding sleep.

http://epworthsleepinessscale.com/about-epworth-sleepiness/
https://en.wikipedia.org/wiki/Epworth_Sleepiness_Scale


You tally the number and can rate yourself against this scale to get an idea of where you stand:
https://www.slhn.org/docs/pdf/neuro-epworthsleepscale.pdf

It's a simple tool, but the results tend to calibrate consistently and are repeatable over time. Again, it's an investigative survey and not a confirmed diagnosis of a problem.

7/13/2015 10:36:41 AM

I have narcolepsy. It's not great. Really affected me in college and how successful I was in classes. Biggest impact on my daily life is that I have to be careful driving, because I can and will nod off. I'll occasionally take upright naps at work. Of that first block of symptoms, I don't have cataplexy (THANK GOD), and rarely have sleep paralysis. EDS, hypnogogic hallucinations, and automatic behavior are most common for me. I also have a LOT of episode of microsleep--like, almost on a daily basis.

https://en.wikipedia.org/wiki/Microsleep

[Edited on July 13, 2015 at 10:55 AM. Reason : microsleep]

7/13/2015 10:53:30 AM

damn. i need to get checked for this because i have all of those symptoms. my wife has always joked about me having narcolepsy, but maybe i really do. what dosage of adderall do they prescribe for it? wouldn't that make sleeping at night worse?

7/13/2015 11:12:48 AM

Samwise16 has been diagnosed with is as well. She posts about it on facebook and stuff. You can talk to her about it

7/13/2015 11:17:58 AM

Quote :

"10-15:You may be excessively sleepy depending on the situation. You may want to consider seeking medical attention"

i'm an 11

7/13/2015 11:18:18 AM

yea I got a 14

but I'm pretty sure that's my ADD. I just turn off if I am not actively engaged in something.

My boss caught me snoozing in a meeting this morning. it was boring sorry not sorry

7/13/2015 11:21:59 AM

I'm interested in these symptoms, as they seem to be some of the same symptoms for sleep apnea. In fact, the test on when you might be falling asleep is the exact one my husband had for sleep apnea. I guess they rule that out before a diagnosis of narcolepsy?

7/13/2015 11:26:37 AM

I run on 5-6 hours of sleep no matter how hard I try. Insomnia is a total bitch, but narcolepsy sounds way worse

7/13/2015 11:30:54 AM

This is like a support group!

They rule out sleep apnea (or check if you also have that) using the overnight and daytime sleep studies.

[Edited on July 13, 2015 at 1:11 PM. Reason : I got an 18.]

7/13/2015 1:11:28 PM

Quote :

"I'm interested in these symptoms, as they seem to be some of the same symptoms for sleep apnea. In fact, the test on when you might be falling asleep is the exact one my husband had for sleep apnea. I guess they rule that out before a diagnosis of narcolepsy?"

Basically, they look for symptoms that differentiate narcolepsy and apnea--because they share many of the EDS symptoms. Because so many of these symptoms also come from sleep deprivation (which can be narcolepsy, apnea, insomnia, etc), the differentiating factors are often the tiny things.

Lucky for me, I have narcolepsy and sleep apnea--though the latter is mostly because I'm fat.

7/13/2015 6:33:01 PM

I hate to say this is awesome, but it makes me feel a lot better that I know some other people with these things. <3

7/13/2015 7:18:06 PM

Give me all your provigil please


*kidding, the last thing I need is something to keep me awake even more

[Edited on July 13, 2015 at 7:31 PM. Reason : ]

7/13/2015 7:28:22 PM

I try to keeep awaake

7/14/2015 8:55:28 AM

I had a few episodes of sleep paralysis as an adolescent, and one of them manifested as a very memorable alien visitation. Can't imagine putting up with that every week.

7/14/2015 9:40:53 AM

There is an unsurprisingly active paranormal/parapsychology enthusiast community within narcoleptics.

7/14/2015 1:27:13 PM

yeah i'm with jeepin.

I don't have narcolepsy i just have crappy sleeping habits.

7/14/2015 1:35:27 PM

aww, poor metricula bb

7/15/2015 2:04:59 AM

i seriously hate that something like BDSM doesn't bring shame to it's practitioners anymore.

It's no fun unless it's naughty

7/15/2015 4:34:37 AM

Hm so I missed this

But I have narcolepsy with cataplexy, as well as REM sleep behavior disorder. I was also diagnosed with obstructive sleep apnea recently which is unfortunately caused by the mess I take for the narcolepsy.

Metricula, did they diagnose you with narcolepsy with or without cataplexy?

The Epworth sleepiness scale is a good tool for gauging how well your treatment is going after a diagnosis, IMO. The real diagnosis comes from specific findings on the overnight sleep study and the multiple sleep latency test, or the nap test as some people call it. For those who are unfamiliar, you take five naps that are 20 min long spaced two hours from each other.

I was technically asleep before they left the room and went to REM sleep very quickly. I didn't have onset of REM sleep during the MSLT, which is technically not fitting with narcolepsy but I had an average sleep onset of less than 50 seconds with all 5 naps included. Less than 30 seconds if you only count the first 4. I had a hypnopompic hallucination during my MSLT but they didn't count it as such, which is sad considering it's a characteristic feature. Anyway, my recent neurologist did HLA typing last year and I'm positive for the two alleles that make someone more than 200x more to develop narcolepsy with or without cataplexy. I have had narcolepsy ever since I can remember, but didn't have a full blown episode of cataplexy until this year. However, once I thought about it I realized I had little signs and never knew it was cataplexy.

I like this website http://www.wakeupnarcolepsy.org/about-narcolepsy/narcolepsy-diagnosis/

[Edited on September 6, 2015 at 12:06 AM. Reason : Just saw you have cataplexy, never mind]

[Edited on September 6, 2015 at 12:07 AM. Reason : And for reference, I usually score around 20 on the sleepiness scale... That's with treatment]

9/6/2015 12:05:37 AM

Ya'll don't die on us like Sean Price now

9/6/2015 1:47:02 AM