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Living with Narcolepsy

New Insights into Narcolepsy

#1

According to researchers, "A swine flu vaccine may have caused rare cases of narcolepsy by stimulating antibodies to attack brain cells that help regulate sleep.":

http://med.stanford.edu/news/all-news/2015/07/side-effect-of-flu-vaccine-yields-new-insights-into-narcolepsy.html

#2

Good article

#3

Thanks for this article. Sometimes I wonder what started it all for me.

#4

Stanford is known for sleep research, and though some conclusions made by Dr. Mignon's lab (article in right margin of page from this link) have been retracted, the medical center continues looking for clear evidence that narcolepsy is related to an autoimmune response. The puzzle isn't complete but they're working on it!

#5

Nice to know... I've always had some of the symptoms of narcolepsy, the sleep attacks, the chronic fatigue, the poor sleep at night, but I never had cataplexy or the severe amount of sleep paralysis until 2009.

Until now I'd been wondering if Mono had activated some dormant genes or such... that's what happened with my migraines... and they're known for that. I hadn't seen anything suggesting Narcolepsy could be activated like that, but this explains it then.

#6

This just breaks my heart. It's bad enough for those of us who acquired it (supposedly) by just natural causes... but to be a parent who vaccinated your child and it caused it. Just heartbreaking. I think this is primarily in the UK, but I don't know why it couldn't be true in the US as well. I was pregnant when swine flu vaccines first came out and was one of the first to get it. I'd be interested in learning more.

#7

Just to be clear... The vaccine didn't do anything that the actual virus wouldn't have...

The virus interacts with cells in the human body by using certain key proteins. These proteins are how the virus is identified by the immune system, and how it's targeted. When we make a vaccine, we basically give the immune system the advance notice about these proteins so it learns to target cells that carry them. This way, the immune system is ready-to-go when the virus should appear, and won't need a lot of time to identify and retool to fight against it.

Problem is, the protein that the H1N1 carried was very similar to the cells that transmit the wake/sleep signals. Thus the immune system targets those cells along with the virus, because they have very similar proteins.

The H1N1 virus also caused an outbreak of Narcolepsy in China where the vaccines weren't used, and similar narcolepsy outbreaks were recorded in previous flu epidemics such as 1918, before the flu vaccines became available.

The only real issue with one of the vaccines is that while the virus has multiple proteins to identify with, one brand had a higher amount of the one that's most-similar to our neurotransmitter's proteins. Thus, people with that particular brand of vaccine were more likely to get narcolepsy.

It's not exactly an unnatural cause.... being exposed to the very same proteins that the virus contained, and if I'm not mistaken, derived from the virus itself. Meanwhile, H1N1 was a potentially deadly strain of the flu, the rare once-in-fifty-year variety that had every potential to be devastating, but fortunately wasn't as bad as it could have been.

If things had been different, millions of people who weren't vaccinated could have died, and that's not a risk I'd have taken lightly.

The HR Girl said:

This just breaks my heart. It's bad enough for those of us who acquired it (supposedly) by just natural causes... but to be a parent who vaccinated your child and it caused it. Just heartbreaking. I think this is primarily in the UK, but I don't know why it couldn't be true in the US as well. I was pregnant when swine flu vaccines first came out and was one of the first to get it. I'd be interested in learning more.

#8

Belboz, thanks for sharing that! I understand and agree.

#9

I first noticed my narcolepcy symptoms 3 years ago but i felt it has worsened after taking a flu vaccine a year ago iam not sure but i think the vaccine made it much more apparent ;(

#10

Hank Green did bit on this on his YouTube Science channel.

https://youtu.be/ifgWDsxdmEY?t=2m24s


I can say with certainty that I never had cataplexy or the amount of sleep paralysis until after receiving the influenza vaccine in 2009. I know for certain I received it, because my wife was pregnant and we both got the vaccine to prevent any complications.

That made 2009 a hellish year... She'd also had a miscarriage in May, during which she'd contacted Mono while she was waiting at the ER, and when I got Mono from her it activated some dormant genes of mine causing my classic migraines with aura to mutate into Hemipeligic Migraines.


2009... one year I would definitely erase or "do over" if I could.

Dan O.

#11

wow really deep article.