What is Narcolepsy
The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy o...
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Im new to this forum, and recently diagnosed with narcolepsy. There are a couple of things I experience that I wanted to know if any of you experience also. I guess I want to know that I'm not the only one out there experiencing this to help me feel better or something.
One of the things I experience is that when im watching something very stimulating visually and auditorally(sp?) that it is very overwhelming and knocks me out cold(to sleep). For example, I went to a knights at the round table show thing with fake knights on horses jousting in a dark room with lots of movement and noise and i fell asleep very quickly and was out cold. Another example is when i went to a cirque de solei show in vegas that was very bright, and loud with lots of movement and it too was impossible to stay awake during. Other examples are when i watch movies with action scenes that last more than a minute or two. People near me when i fall asleep during these types of things always cant seem to understand that i could fall asleep during something so loud and with so much movement etc. But for me the more there is the more likely i will definitely fall asleep. The other thing i experience that i wanted to know if you do also is waking up with headaches. They feel different than the regular tension headache and seem to go away either in 10 minutes or in a couple hours. Is this somehow related to narcolepsy? Its really annoying to wake up with these headaches and theyre really uncomfortable. Posted on 11/03/09, 02:11 pm |
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Hi,
What you are explaining really sounds like cataplexy. If I watch an exciting movie, the edge of the seat type of thing then my cataplexy will kick in and my facial muscles will go. I have to sit and tense my muscles so I don't lose it. The more extreme the emotion, the stronger the reaction. If I really laugh I have to sit down or hold on to something and that's with my medication. Without the meds I would collapse. I have also fallen asleep in some bizarre places, including; the dentist, inside an MRI scanner, in court while on jury service, the movie theatre (many times), etc. I don't get headaches, you might want to talk to your doctor about that. 
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Lights and noises give me cataplexy, too. I get bad headaches! It takes me hours or days sometimes to get over migraines.
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see u are not the only one. and yes i get them also. welcome to the group.
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the headache sounds like apnea the lack of O2 will give you bad ones. do you have any memory loss?
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Thanks for your replies. I did have a sleep study which ruled out sleep apnea, and showed that i go directly into REM sleep and skip the other sleep cycles. The first symptom I described where i knock out during stimulating events, i actually fall asleep. Is that cataplexy? Or are you completely awake and coherent when you have an attack? I didnt mention that to my doctor because i considered it just falling asleep like i always do.
As for the headaches, I wonder if maybe i have a little trouble breathing occasionally because i dont get the headaches every morning. And I believe that in order to get a sleep apnea diagnosis you have to reach a certain level of oxygen deficiency and i guess its possible that i was somewhat deficient but not to the level required for diagnosis. I'll have to ask my doctor about that.
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