Sunday, April 15, 2012

What would you like to find in a book about dealing with Narcolepsy?


Good morning to all of you, and Happy Sunday!  I just got back from a short vacation in Hamburg, and the weather is so beautiful here in Berlin Smile.  Spring is here!

I was talking with my husband when we were in Hamburg, and we started talking about my writing a book about dealing with Narcolepsy.  This is not a new idea -  it’s an idea that I’ve been tossing around for a number of years now but it’s come up again and I think it might just be something that I would enjoy and that would probably be helpful to some struggling or new Narcoleptics.

Which brings me to where all of my dear readers come in (that’s you! Smile): I was hoping that some of you might be willing to write me a line or two (or more if you want) and share what you would like to see in such a book.  The book that I am envisioning would not be a memoir or a book primarily about me, but rather a sort of “idiot’s guide” to Narcolepsy, with relevant parts of my own story thrown in when I think it’s helpful.

I would especially like to know what topics would be most interesting and helpful to you and other Narcoleptics.

I know that there probably isn’t any money in writing such a book, and that there is a good chance that I would have to self publish it if I wanted it to be published, but money isn’t the reason that I am seriously thinking about a book.  I want to write a book on this for the same reason that I started this site: I know how hard it is to have Narcolepsy and how hard it is to find good information on dealing with it and I want to use what I have learned to help others.

Thank you so much for a minute of your time.  Your comments would mean so much to me and would go a long way towards helping me start this project.  (So if you want to see this happen – by all means write something!)

God bless you all!


  1. Great idea, Ellie! I can't wait to read it!

  2. I think it is wonderful that you are writing a book about narcolepsy! I think something really helpful would be coping tips or ways you have learned to deal with your narcolepsy from day to day. A helpful resource for me about that has been Good luck with your writing!

  3. Hey! I live in Norway and have narcolepsy! A book about narcolepsy is soon coming out in the stores in Norway. Me and 8 other teenagers met one weekend with the author. We shared experiences, and the book is coming out really soon. Could it be an idea to get the book translate so your country could get to read it?

  4. I would love to read success stories. I was diagnosed two years ago at age 41, and it made me feel like what I have accomplished in life is even more of a feat than I realized. The diagnosis was actually very empowering for me (as is the treatment, of course). I know there is a lot written about how devastating narcolepsy can be, and I know that's true, but I don't see enough encouragement about how people can thrive in spite of it. :)

  5. One of the first things I did after being diagnosed is go to amazon and look for books. I could only find one, and it was a personal memoir, from someone with narcolepsy with cataplexy. I didn't order it, because I gathered from the description that her experiences would be really different from mine, so I didn't think it'd be super helpful.

    I'd really love to see a variety of different people living with narcolepsy covered (with and without cataplexy)--to see the gamut of experiences and how different people have coped. It would also be really great to include information about and people with idiopathic hypersomnia. The narcolepsy resources often seem to include this group as well. I'd love some information from doctors and researchers as to what's going on in the disease, and what the treatment options are.

    And yes, couldn't agree more with Deb about success stories. It seems like a lot of what I first read talked about how debilitating N can be, and it seems like I heard a lot of stories about people who had to quit jobs and such. I was diagnosed at 33, and after reading a lot of this stuff, I struggled with wondering what this meant for my career, if I could really pursue the doctorate I want to go back to school for, etc. After reading more success stories (did you know that one of the deputy chiefs of staff under President Clinton had narcolepsy! he would fall asleep routinely in White House meetings... but then wake up and get back to work), I felt much better about things.

    Sorry so long. I do think it's great you're writing!

  6. I know this response is coming much later than the rest, but I wanted to encourage you in your endeavour to write a book about Narcolepsy.

    If I could pick a topic to be covered in the book, I would like to see "Children and Narcolepsy" because their experiences are quite different than those of adults who are newly diagnosed. There are very few medication options approved for children, their bodies are growing and changing daily, some have issues with early puberty because of the damage to the hypothalamus, they have difficult expressing how they actually feel and what is helpful so it leaves their parents guessing as to what is the best treatment option... and they face an entire lifetime of narcolepsy with no previous experience with "being normal", having a job, having friends, driving and independence, getting through school, dating, getting married and starting a family, maintaining friendships all while managing narcolepsy symptoms, which quite often are severe when they present in early childhood.

    We are living this. My 6 yr old daughter was diagnosed with severe narcolepsy and cataplexy 13 months ago at the age of 5. It has been life altering and devastating for all of us. To read some encouraging advice on how to cope through out all the stages of growth and development would be inspiring and supportive.

    Makky's Mom

  7. Hi Ellie, I am a journalist in the USA and I have a column, 'In Their Debt' with "Just Labs" magazine devoted to stories/narratives of working Labrador retrievers and related programs. I am very interested in contacting you with a few interview questions and seeking a photo for possible publication, if you are interested!

    Thank you in advance,
    Shelley Bueche

  8. Hi,

    Could you please help, if any of these medicines - Provigil, Modafinil or Modalert to help with sleep disorders?


    1. Hi Norman,

      The three names you mentioned are actually all names for the same drug. Modafinil is the actual drug name. in the US it is marketed as provigil if it is brand name although I think now there is a generic. in India, it is Modalert (had to look that one up). Some people do find that it helps with their Narcolepsy symptoms. It is a stimulant but is not supposed to have the problems of traditional stimulants, namely tolerance over time and the jittery feeling...
      I believe it is now prescribed for conditions other than narcolepsy but I only know about narcolepsy.

  9. provigil stopped working for me last year. they also made a new one..nuvigil but i think its a version that took out all the "fun" of provigil..but idk for sure bc ive never taken nuvigil.

  10. I would love to hear some success stories. I was diagnosed about a year and half ago and am not coping with the adjustment. Everything you read online is so depressing I would love to hear about how people deal with narcolepsy successfully. Keep us up to date!!

  11. I'd love to read some normal things - like how to set a schedule, how to get up in the morning, how to go on vacation, how to make it back to school (my daughter's been out of school for months), basically how to create a life. And also success stories. Most are too depressing.

  12. I'd love to read a practical book about coping with narcolepsy. I was diagnosed this week and I've been trying to find info on what things I can do in addition to taking medicine to help me feel more awake. I found this article really helpful:
    It'd also be nice to hear a wide range of people's experiences to help me better understand my own. It'd also be nice to hear success stories to know they exist :)

  13. I too was disappointed to find so little popular literature on narcolepsy. I agree that it would be good to include a range of people's experiences. I'm 64, and though I've had EDS since I was a teenager, and episodes of sleep paralysis, I never thought I might have narcolepsy --- I thought people with narcolepsy had no control over falling asleep, while I'm able to force myself to stay awake if I have to. It wasn't until this spring that I had a polysonogram and MSLT that confirmed my doctor's suspicion. I think it would help the public to understand that narcolepsy comes in different forms and isn't just one thing.

  14. Ellie and everybody else: In my opinion, what is missing from the bookshelves is an anthology of positive accounts rather than depressing lists of how devastating our symptoms are. Symptoms of narcolepsy have been experienced since long time ago, as it can be gleaned from memoirs by writers, artists, and scientists. How did they cope?