Tell Me How Narcolepsy Affects Your Life

Tell Me How Narcolepsy Affects Your Life

Posted in the Narcolepsy Forum

Eva Moffat

Buxton, UK

#1 Sep 27, 2007
I have had Narcolepsy for more than 45 years although for the first 20 years, I had no idea why I kept falling asleep at various times throughout the day. My doctor suggested that I was bored.

If you would be willing to complete a questionnaire and maybe tell me a bit about yourself I'd be very grateful.

I'm a writer and I believe a book that gives the facts about Narcolepsy by people who are living the life or the people who live or work with them can only be a good thing.

Such a book could be very useful for undiagnosed Narcoleptics through to those who have had Narcolepsy for years. There is always something new to learn - from new medication to new methods of coping with Narcolepsy.

If you would like to take part in this project in strictest confidence please send me an email to [email protected]
maryjane

Fort Sumner, NM

#2 Oct 20, 2007
i got it later in life but thought i had a brain tumor i was so affected, scared to death i would fall asleep and burn something or i ended up no longer driving etc. i did not have apnia but i had severe narcolepsy and i had never napped in my life but could hardly stay awake at all and was becoming more depressed all the time. only thing that saved me was modalert. just about ended up divorced since my husband thought i was making it up.. really a bad time in my life.. mj
RobbieDutton

Netherlands

#3 Oct 5, 2010
Indian Provigil from http://indiantrustedpill.info works great. I was diagnosed with MS at the age of 29 and had severe fatigue for 2 years prior. I started on 200mg which was way too strong so I cut the dose into 100mg. I find that if I take it everyday it is not as effective so I just take it when needed which ends up being about 3 times a week (I work full time in a sort of stressful environment).
It is important not to "over do it" when on Provigil. I have to say that Provigil changed my life. I am now able to spend time with my boyfriend in the evenings after work and also see friends past 9 PM and not get fatigued. I do feel that when I drink on Provigil I get very emotional...so I try and stay away from drinking. I do like how it helps me mentally focus and also have energy to exercise!
creighton

United States

#5 May 9, 2012
after losing my drivers license and having 11th accidents I hate it. I was 42 when I got it,now 55 and cant hold a job. I guess theres worse but I miss what I could do before. My wife is really great to stay with me. She supports me as a Teacher. Could not make it without her!!!!!! I would give up without her.

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