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My Five Year Anniversary


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#1 Heidi L

Heidi L

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  • Location:Seattle WA
  • Interests:Narcolepsy Research. I have now been in remission for over five years and am going to make sure all of you will be too.

Posted 13 August 2012 - 10:18 AM

Five years ago I went on gluten-free diet and my narcolepsy went into remission.
I have now had five years of drug-free, doctor-free relief of my symptoms.

I've been writing about it ever since.   I have done tons of research and have dozens of reports of similar experiences from other narcoleptics.   Nevertheless, people ask me pretty often if I really do feel and think better.  So, this year I decided to do something a little different in celebration of the anniversary.
I decided that instead of writing about it, I would show you.

This is what it feels like to me:   It makes me feel like dancing.
It makes me feel like dancing with the whole world. 

So that's what I did.

#2 Hank

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Posted 15 August 2012 - 08:36 AM

I am now 46 and correctly diagnosed for the past 3 months. My first C episode was at age 9, so I have lived with this for a long time. For the years in between I learned to manage with my EDS symptoms through determination, sleep hygiene, diet and exercise. My unrecognized C almost caused my death several times from falls. Now that I am on the proper medications, I continue to benefit from a well managed diet and exercise. My life is improving and I already have a good life. Nobody knew the true extent of my internal battle against N/C before diagnosis, and I have chosen few people to share that experience with now. Even my wife of 14 years has had trouble wrapping her head around it. I have a good career; never had a car accident; I just did a triathlon last October; I never say I am tired; and I have an illness that leaves me chronically exhausted where I can unexpectably collapse while conscious - all at the same time. Just a month after my last triathlon, I fell asleep on a 7 mile run (automatic behavior) and had no recollection of getting where I was or what might have happened. If diet and exercise could have done it for me, I wouldn't be here. Cataplexy does not seem to care what I eat and is often triggered by exercise. So, no more competitive swimming in lakes where I might drown while conscious. I understand remission to be the absence of disease activity, which is not possible for me since I lack the cells that produce orexin. A response is a reduction in symptoms, which I think is a very suitable term for the benefit I receive from diet and exercise. I thought your dance was lovely and I am glad you are feeling so well. I felt well enough to compete in endurance events and I am not in remission. As a husband and father of three, the thought of dying from an injury resulting from Cataplexy is real. I will do everything I can to prevent this, including lifestyle adjustments, diet, exercise and medication.