Should I be worried about media reports linking flu vaccine to narcolepsy?

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  • Jane says:

    I’m from Ontario and became sick directly after the H1N1 shot in 2009 with moderate head, neck, arm pain and sever gatrointestanial symptoms. I recovered for a short period of time but then gradually within a year symptoms kept surfacing until I now have chronic pain along with fatigue, insomnia, IBS and cognitive memory involvement. I was diagnosed by Rhematology with fibromyalgia which is neurotransmission. Have any links to CFS/ME Fibromyalgia been associated with this vaccination along with norcolepcy? The sleep disorder sounds very familiar to what I experienxe.

  • Lisa Hunt says:

    Here’s my question to u…… I was 34 last year when I received a flu vaccine jan. 25, 2013. For school purposes. Mid February started showing signs and symptoms of narcolepsy and cataplexy.. I was told by my family doctor I received the 2012 fall flu vaccine in January 2013. Isn’t the same ingredients in that vaccine that was also in the H1N1 vaccine? I’ve been doing research on my on and came across that it was…I’m 35 now and am seeing Dr. Colin Shapiro for all this.. I’ve been healthy as a horse till I had that flu shot. Has there been anymore cases like mine come up recently? Any help or more information as I am currently doing a report on narcolepsy and how it affects the nervous system for my Anatomy and Physiology class. Also to educate my teachers and what they have seen or experienced while I have been in there class.

    • Nicola says:

      Hi Lisa, I am In the uk. My 8 year old son had the seasonal flu shot October 2012 and started with symptoms January 2013. His vaccine contained…. A/California/7/2009 (H1N1)pdm09-derived strain used
      (NYMC X-179A)
      I am also looking into the fact this seems to be the same strain as the 2009.

  • Joe Blog says:

    “However, you can rest assured that this year’s flu vaccine is very different”
    So roll up your sleeves until we find something wrong with this year’s flu vaccine.

  • Paul Taylor says:

    Hi Denise:

    The H1N1 shot should not have an additional negative effect on people who already had narcolepsy.
    You may recall that narcolepsy results from the loss of a brain chemical called orexin (also known as hypocretin) that plays a key role in regulating sleep-wake cycles.
    Once the orexin-producing cells are lost, with the initial onset of narcolepsy “there is no further chance for damage” says Dr. Brian Murray, a sleep specialist at Sunnybrook Health Sciences Centre.

    Paul Taylor

  • Denise Joyal says:

    My concern is what impact has the `H1N1 vaccine had on those of of us who already had Narcolepsy ( in my case for the past 16 years). Has there been any studies done on whether the vaccine could havw aggravated the exisiting condition?

  • Paul Taylor says:

    Hi Anna:

    Thank you for your email.

    Dr. Brian Murray’s study will be relying on provincial data bases to assess the possible link between H1N1flu shot and narcolepsy.

    So you don’t need to notify him directly about your daughter’s case.

    You also had questions about your daughter’s medical care. Where to go for answers depends on your daughter’s age. If she is under 18, Dr. Murray suggests contacting the Hospital for Sick Children in Toronto.

    “If she is over 18, I would be happy to see her clinically if there are outstanding concerns,” says Dr. Murray.

    Your family doctor would need to make a referral to Dr. Murray.

    I wish your daughter the best for her recovery.


  • Anna says:

    My daughter received the h1n1 vaccine in Ontario.
    It took several years but she has now been definitively diagnosed with narcolepsy.
    She is currently being treated with medication but we wonder what next?
    Should her diagnosis be reported to someone? Can this link be confirmed on an individual basis?
    Any advice would bee greatly appreciated.
    Thank you for the information provided in your article.


Paul Taylor


Paul Taylor is a health journalist and former Patient Navigation Advisor at Sunnybrook Health Sciences Centre, where he provided advice and answered questions from patients and their families. Paul will continue to write occasional columns for Healthy Debate.

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