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Causes Of Narcolepsy

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#1 Frances



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Posted 04 September 2008 - 05:05 AM

I recently got diagnosed with N but started having all symptoms to a high degree about 6 months ago.
I got all the symptoms at once - before 6 months ago i was 110% ok.
my specialist said that N is usually brought on from getting sick - like having a fever, headache etc over a few days.
i havn't been sick for about a year and a half when i got a bad cold so it doesnt sound like thats what brought it on.
i had a blow to the head about 3months before i got symptoms - is it likely that concussion can cause N to happen?

would love to hear your thoughts!!

#2 Marcianna



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Posted 04 September 2008 - 08:24 AM

Alot of people have gotten it from a head injury, I did. I was a child though... I am not sure if that can happen as an adult... it is possible though.

#3 halfasleep



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Posted 20 November 2008 - 01:12 PM

I think it was a combination of things that led to my developing narcolepsy. I was in my late 20's, my husband and I lived in a basement with a slab of concrete on top. We were slowly building a house above us. We had very little natural light coming in a few basement type windows and after awhile as we were building above, those windows were blocked off and we had no natural light in the basement. My husband started working what we called the "night shift" - I thnk his hours were 4:00 pm to 1:30 am. I got off work at 4:30 pm, would come home to our basement, lie down and read the paper or whatever. I had always read while lying down - a bad habit. I would fall asleep and wake up when my husband got home after 1:30 am. I would visit with him a while and probably watched TV some with him as he was winding down to fall asleep. I am not very sociable and we lived out of town anyway, there were few close neighbors. I think it was the combination of messing up my sleep schedule, living in the dark and not having the stimuli of other people around. I developed what I call classic narcolepsy with sleepiness, cataplexy, hallucinations/nightmares/paralysis. I am also interested in what people think caused their narcolepsy. I had a life before narcolepsy, totally different than my life with narcolepsy.

#4 axe



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Posted 20 November 2008 - 07:31 PM

What causes Narcolepsy? No one really knows. There may be more than one cause. The researchers tell us that there best guess is that it is brought on by an autoimmune response. That is, the body's defense mechanism turns on the body and attacks and kills some part or parts.

Is it caused by an infection? I have never heard that one before. On the other hand, if the science boys are right, something had to turn on the immune system for an autoimmune response.

Is it caused by a lack of sunlight? If this were true then it would be an occupational hazard for underground miners and photo lab technicians. It isn't.

Can it be brought on by a head injury? There are a small number of anecdotal reports of such things. These are rare and there is no proof for or against this line of thought.

#5 dogdreams



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Posted 20 November 2008 - 09:00 PM

Head injury can do it for sure. For me N was coming on really slowly in my late teens but taking birth control pills when I was 20 made it super bad in about 3 months after starting them, so I always blame the birth control. It's like it accelerated the degeneration or something. I stopped taking them and felt great for a month but it was too late. The N was here to stay. I can't even take Plan B now...any artificial hormone will make me worse.

For other people the trigger can be illness, a vaccination (those make mine worse too), injury, I've even heard maybe reactions to bug bites. The triggers vary widely but the result of N is usually about the same.

#6 Henry G

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Posted 21 November 2008 - 10:32 AM


... from a previous life

#7 petra



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Posted 22 November 2008 - 07:42 AM

I've been wondering about this too - I want to know the 'how' bit too. from reading around, I think it looks like it can come from all different sorts of brain injury, even mild head injury, and it's maybe not so rare, tho the researchers keep arguing about that because we could have more accidents. But there's lots of us have it from traumatic and non traumatic brain injury that wasn't caused by sleepiness.

They can't always see the injury in a conventional or FLAIR MRI scan - which is same as when they don't know what the cause is.
So either the lasting brain injury causing the narcolepsy must be about as tiny as the damage there is in narcolepsy when they don't know what the cause is, or the injury tips off the same or similar kind of process.
As well as direct damage to those cells in an injury there's some processes that happen as a result of lots of different types of brain injury - I've been wondering about how so many types of brain damage and other environmental factors and illnesses could cause the same illness or at least a similar set of symptoms, but we still often can't see the damaged bit on the scans -
The blood brain barrier - the bit that 'decides' what gets through from our blood into contact with our brain cells - gets damaged temporarily or longerterm in a lot of different types of brain injury and it can let the wrong stuff through and this could start or contribute to causing or worsening autoimmune or degenerative damage or damage from toxins. The blood brain barrier gets more permeable in infections, too so that would fit with N getting worse with fevers. I had that happen.
the blood brain barrier gets weakened by other things that could cause or contribute to N.

And in a lot of types of brain injury we get lots of tiny injuries from the brain getting a bit short of oxygen. This type doesn't show up so well on the sort of scans most people are given . And with this sort of damage the damage doesn't always show up as symptoms immediately, or even if it does, it can get worse long after the acident when everyone thinks you are OK. There's been cases of N from oxygen shortage in cardiac arrest, so maybe oxygen shortage is what happens in some people with post traumatic brain injury narcolepsy. I'm not meaning this is what must be happening to lots of us , just been wondering about it.

this was one of the papers about brain injury and N, i've more can look out if that's useful. Not sure if this will make sense - when I'm more awake I could find out I been talking sleepy-mince again - but I'm in the best company for it here.


#8 saltgirl



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Posted 23 November 2008 - 09:59 PM

my mom

#9 Ryan



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Posted 24 November 2008 - 09:47 PM

I have had my narcolepsy from birth, which is very rare to have, especially since I am the only person in my entire family with narcolepsy.

#10 shallow_water



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Posted 25 November 2008 - 11:03 PM

Looking back I think i've had it my whole life. The symptoms make sense. It wasn't until I injured my neck a couple years ago and then i had to have surgery to remove my thyroid and bamm i hopped the N train full speed ahead!

It's just a shame it takes so long to get properly diagnosed!

#11 jenji



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Posted 25 November 2008 - 11:25 PM

As a kid I definitely had SP and HH, as well as night terrors, but the EDS didn't really begin to show itself until I was about 18, just after a nasty bout with mono. Then, I struggled with EDS, but just thought I was weak and everyone felt the same way and coped just fine. Next, when I was 25 I had a nasty bout with strep throat and BAM! I was never the same again. Everything got so much worse, so very fast. 15 years to diagnosis.

What I really wonder is in addition to a so called "trigger" events, can events subsequent to that event further exacerbate the degree of N and/or symptoms from which one suffers? For instance, after that strep episode I had a horribly traumatic, personal experience and two very serious car accidents within 5 years. So, I suppose I've had the virus, the bacteria, the trauma and the blow to the head that could have been potential triggers and/or exacerbaters. I dunno, it's a mystery, but I've also had my share of remission-like episodes; periods of time where I was functioning at say 45%, as opposed to the usual 20%.

Regardless, I managed to drag my butt to school and earn 3 college degrees, although I wasn't able to do so until my 30's b/c I was so debilitated by my condition prior; then again, by this time I had learned how to best cope with my condition throughout the years and found a way to get through in my own way. Better late than never! Going back to attempt university despite the N and its tempermental, inconsistent, unpredictable attitude was the best decision I ever made. So take that N!

still I'm asking, is there a spell check on this deal?? I don't see the button.