From what my Neurologist tells me your onset is common. Most narcolepsy patients are diagnosed in their early 20s.
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%.

I was just diagnosed a couple of months ago, but have had it since i was a teenager. I always thought it was something else, A-DD, or my dyslexia, but come to find out, it's Narcolepsy and Dyslexia,, not the other. I wish I would have been diagnosed in my teens, but that would have brought me back to the 70's somewhere, and I doubt very seriously that had any research about it then, nor did they know about dyslexia.

Hey,
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

OMG, I was dx several months ago and I know I have had it since I was a lad (lol). My mom used to yell at me when I was 10 telling me to stop sleeping and go out side and play. I was too DX with ADHD several years ago. My theory is the docs dx ADD/ADHD because of the "coping" techniques we do throughout the day to keep ourselves awake look like ADD/ADHD. Since TX with meds I do not have to use these techniques as much.

I've read a lot about what researchers think causes N & C. It's thought that it's caused by damage to hypocretin producing neurons in the brain, in the hypothalamus to be specific.

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

It did'nt get bad till I was in my 30's.It may been there all the wile.because in my 20's my Doc.treated me for depression. Even thought I had kept complaining of being so sleepy and tired.
Then one day I started falling down.

I have been researching N in regards to the circadian rhythms. You will have to look it up on wikipedia so I don't try to explain what they are and confuse you.

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.

Hey Andrew, your right about the hypocretin and hypothalmus part of the brain, as far as the research goes. I read that too. I got a question for all of you....
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....

It was always my understanding that the cataplexy was a direct symptom of the Narcolepsy.

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

i'm sure my sleep doc said if it's in family there's about 10% familial link, as i got dx after aunt got dx.
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.

Lol anjr, your right how come we cant diagnosis this when we are covered on our parents insurance...I think that is murphys law...but....than you have to wonder about things because my oldest son was dx as having ADHD. If that could be related to narcolopsy than why didnt they ever do a sleep test on him? Maybe it was because labeling a kid with that is just plain easy to do. pop a pill in them and hope for the best....sigh....

LOL...I am picturing thousands of kids who have ADHD going in to the sleep study center to be tested. Imagine them being hooked up to all those wires and then being put into a room with only a bed and a TV. My son would probably become hopelessly twisted in the wires from fidgeting or strangle himself from using the bed as a trampoline. If none of the above actually happened, they would at the very least come away from the sleep test minus some skin cells by accidentally ripping wires loose from their bodies while trying to figure out how to turn a flip across the bed without getting tangled up.

All but a few brave docs would opt for the pill.

I have no family history of N, although my younger brother does have mild symptoms of cataplexy when he laughs, but only when he laughs. I had a severe skull fracture when I was 4 (4 inches up the back of my head) and have had neurologic problems since then. I also had Rheumatic Fever when I was 7, and we have followed my medical charts back and noticed that i had mild EDS starting after I recovered from that. I also had what they called "night terrors" fairly frequently from age 5 to 8. I had early onset puberty, and two days after that I had my first attack of cataplexy, and my N and Cataplexy was Full-blown by then. That was the summer before 6th grade. I wasn't diagnosed until I went from top of my classes, and on the verge of skipping grades, to failing everything, and dropping out of high school. If I could have been diagnosed around 4th grade, my life would have been totally different. No telling what caused it all, but there are a bunch of possibilities.

Yeah, I agree with Andrew too. Thats exactly how my son's neurologist explained it to us. Although my son has always been sleepy, just before he started with the halucinations and the cataplexy he had shingles. He carries the gene, but his neurologist said that having shingles would have contributed to the autoimmune system killing off the bunch of nerves in the hypothalumus and therefore causing the illness to accelerate at this time.

i remember having a really bad virus in the holidays between my 1st and 2nd years at uni, and it was in my 2nd year that i started falling asleep in virtually every lecture. i do think i had it before then, but think it really stepped up in severity after the virus, don't know what it was but it knocked me off my feet for a couple weeks, my dad was taking kids to school, picking them up and giving them them tea before bringing them home, and i wouldnt have been out of bed all day. after that i would get really bad ear infections too, bad enough to put me in hospital for 5 days the first time so definitely my immune system took a bash, that's why for a long time i thought i had me/cfs