
Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.

deleted_user
Does anyone know what causes narcoplepsy? i know for some people it is genetic but what about those people who do not have the gene? is there any reason some people without the gene get narcolepsy while others don't?
i would say it could just be a random gene mutation but since i dont' have the gene, i guess it wouldnt' be that.
has everyone on here always had narcolepsy and was just never diagnosed with it? or did it start suddenly?
in a way, i guess mine started suddenly. i vividly remember my first cataplexy attack, though i didn't know what it was at the time. since i started college, i kno i slept more than most of my peers, but not by that much, not until i got sick. i seemed to just get sick and not get better. once i finally got rid of all of the different bugs, i was still tired during the day but would wake up for a few hours in the evening and then be tired again. and its pretty much been the same since. that was a little over 2 years ago now. i tested positive for narcolepsy on the sleep study. (though i didn't on the first one b/c i slept so horribly the night before that i was running on pure adrenalin and couldn't fall asleep even though i was exhausted. i slept well on the second one and had no problem falling asleep the next day)
Thanks for your input!
i would say it could just be a random gene mutation but since i dont' have the gene, i guess it wouldnt' be that.
has everyone on here always had narcolepsy and was just never diagnosed with it? or did it start suddenly?
in a way, i guess mine started suddenly. i vividly remember my first cataplexy attack, though i didn't know what it was at the time. since i started college, i kno i slept more than most of my peers, but not by that much, not until i got sick. i seemed to just get sick and not get better. once i finally got rid of all of the different bugs, i was still tired during the day but would wake up for a few hours in the evening and then be tired again. and its pretty much been the same since. that was a little over 2 years ago now. i tested positive for narcolepsy on the sleep study. (though i didn't on the first one b/c i slept so horribly the night before that i was running on pure adrenalin and couldn't fall asleep even though i was exhausted. i slept well on the second one and had no problem falling asleep the next day)
Thanks for your input!
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Unfortunately little is still known about the causes of narcolepsy. Let me re-phrase that; if you're not genetically predisposed to have narcolepsy than your cause is unknown. The good news is that whether you are or are not genetically predisposed, the familial incidence of narcolepsy is only around 2%.
Why is it that so many people w/ "N" just so happen to have thought it may have been ADD at some point??? I am so curious. I got my "N" Dx just this year at 41 and I had signs as early as 14 in HS but no one ever really paid attention to what was happening to me I guess. Too much family drama at the time.
Just wondering if ADD is a side effect or just a by-product copy-cat type thing happening due to lack of sleep/concentration???
What do you all think?
HappyHappy
The bodies autoimmune system attacks the brains own tissue thinking it's foreign. So people with N are not able to produce produce hypocretin or enough of it. Hypocretin is a peptide that tells us whether we should be awake or asleep. I think it also has something to do with energy expenditure and apetite also.
Don't quote me on this it's about as far as my understanding goes.
Below are some links to UCLA and Stanford where they are researching narcolepsy;
http://www.npi.ucla.edu/sleepresearch/index.htm
http://med.stanford.edu/school/Psychiatry/narcolepsy/medications.html
Andrew
Then one day I started falling down.
Found these study results...Department of Neurology, 1st Faculty of Medicine, Charles University, Prague, Czech Republic.
Narcolepsy is characterized, beside other features, by excessive daytime sleepiness and disturbed sleep at night. The pineal hormone melatonin may affect the sleep characteristics. The aim of the study was to compare the circadian rhythm in salivary melatonin in narcoleptic patients with that in control healthy subjects; 18 patients and 21 age- and gender-matched controls were involved. Narcoleptic patients exhibited a nocturnal increase in salivary melatonin similar to the one in control subjects. The morning melatonin decline in the narcoleptic group, as opposed to the control group was, however, not significant, as 8 out of 18 patients exhibited elevated melatonin levels also during the day. In these patients, the mean daytime value of the multiple sleep latency test (MSLT) was decreased when compared with that in patients with undetectable daytime melatonin levels. The results suggest that in some narcoleptic patients the circadian rhythm might be disturbed.
It seems to my layman's mind that the article is saying that the EDS assoc. with N is due to the fact that the body does not stop producing melatonin during the day like it is supposed to.
Since Cataplexy is considered an autoimmune disorder, from what I have read, research shows that once you have one autoimmune disorder your very prone to haveing others as well. Have any of you had any other autoimmune disorders besides the cataplexy?
I had one probaby fifteen years ago where I got exposed to chicken pox, and I had had it as a kid. My body made antibodys but over produced and shot them into my eyes and blood system. That caused blindness in one of my eyes. My cataplexy showed up about ten years later I believe.
From what happened than I found out that it affected the same part of the brain...the hypothalmus. So I wonder if I might of had some brain damage than and or it weakened it to cause the cataplexy. Please tell me if I am making any sense on this....
What I never fully understood was why the hypocreting producing neurons stop producing it in the first place and why for most of us, that happens right about the time we aren't covered on our parents insurance anymore. Smile
Just my own theory, but i think it may be mistaken for ADHD especially when we're young because as narcoleptic we need to keep on the move or mentally stimulating to avoid falling asleep, if we stop we crash. We also have probs concentrating and focussing. Maybe thats why one of the treatments is Ritalin, people mistakenly think Ritalin is to calm kids with ADHD down, it isn't, it just helps them to focus same as it is meant to for us. For kids with ADHD it's the inability to focus that causes them to be frustrated and display crazy behaviour sometimes.
I actually believe my N has got sooo much worse since my kids have grown up and not needed me to do things for them. I can hardly believe that around 15 years ago my nickname was "Dynamo", somewhere along the line my dynamo burned out, i'm trying so hard to get it back and it's really frustrating that weeks go by and i get nothing done in the house, or i don't realise i haven't returned friends calls, that's quite damaging to social life cos they just stop calling.
Regarding hypocretin, they've found that hypocretin levels are more likely to be low if cataplexy exists. Narc w/o cat could still have normal hypocretin levels. My sleep doc told me he is relying much less on the lumbar puncture (spinal tap) test if the patient is not displaying obvious signs of cat.
All but a few brave docs would opt for the pill.