Needing Narcolepsy Network

I have been a member of Narcolepsy Network since 2008, and even though I do “understand” how to live with my condition, every year I realize more and more that I NEED Narcolepsy Network in my life, particularly the annual patient conference (which I am currently attending in Atlanta). I love coming yearly to an event where I never need to explain my disease or justify my condition. Plus, seeing the smile on the face of someone I only see at conferences elates me every time it happens. I also adore that one can rapidly make a new friend simply by sitting down and starting to share. No one holds back from opening up because no one here would judge another person with narcolepsy (or any form of hypersomnia for that matter).

This year’s conference in Atlanta has been particularly spectacular. Of my 6 conferences, I feel like this one is far and away the best. We are staying in a remarkable hotel with outstanding food, Atlanta is a fantastic city, numerous alternative activities are available, and the line up of speakers has been breathtaking. In many ways, the only “major” narcolepsy researcher NOT here is Dr. Mignot who runs the Center for Narcolepsy Research at Stanford. Granted, his are big shoes to fill, but we have been blessed to have him at numerous other conferences. The doctors in attendance, though, (Dr. Thorpy, Dr. Siegel, Dr. Trotti, Dr. Rye, and Dr. Scammell) are all major contributors to the field, and most of them have made incredible discoveries in the past year or so.

Tremendous insights have been gained about the “role” of hypocretin (the “missing” item in the brains and Cerebral Spinal Fluid of most people with narcolepsy) and the activation of hypocretin producing neurons. It turns out that hypocretin deficient mice only “struggle” with tasks during periods of light. In the dark, they are as effective at tasks as their “wild type” (normal) siblings. So, it is entirely possible that hypocretin is directly or indirectly connected to the presence of daylight. And, additional research that hypocretin deficient animals, including humans, as well as “normal” individuals produce more hypocretin when engaged in relaxed and enjoyable activities. I am still trying to wrap my head around all of the implications of that information, but it certainly helps explain why I am often less sleepy at night, even if I have had an exhausting day, and why I am less sleepy when doing something I love (reading, interacting with people, teaching, watching movies and shows, playing ultimate). It certainly helps me understand why I am less tired coming home from my new job (which has been exhausting) than I was when returning from my previous position where the environment had become toxic for me.

Another incredible discovery of late is that histamine levels in people with narcolepsy are grossly inflated. Researchers do not know “why” yet, but are certainly speculating that it is connected to the loss of hypocretin. And, as someone with chronic sinusitis who takes fexofenadine (an antihistamine) every single day due to my constant swelling in my sinus — something likely caused by an “over active” immune system with lots of extra histamines. It is wild to think that two of the major health issues of my life might be far more related than I ever thought possible. The other incredibly exciting element of the increase in histamines is that it is likely the first time a brain system has ever INCREASED the number of neurons in a human brain, opening up the possibility that people can discover ways to increase other types of neurons.

Finally, lots of work continues to be done in looking for ways to reverse narcolepsy. And, although things are still a long way off, progress is being made. Work is being done to implant hypocretin producing genes via a viral vector. There is also another class of medications that is in phase III trials which also promotes wakefulness, possibly as effectively as Provigil and Nuvigil. And, Emory University continues to research into hypersomnia that is NOT narcolepsy with cataplexy, particularly sleep issues connected to GABA and Cerebral Spinal Fluid. All of this is incredibly promising and definitely provides multiple reasons to feel hopeful.

Still the best thing about Narcolepsy Network’s annual patient conference is the opportunity to spend time with other people with narcolepsy. Truly, no other experience can compare because NO ONE questions sleepiness or cataplexy or brain fog or needing a nap. Over 400 people are at the conference this year, the largest ever. And, last year attendance was maxed out for the space Narcolepsy Network had in Cleveland. I sincerely hope that. Those numbers continue to grow and that more and more PWNs can partake of the joy I find when I am with hundreds of other people who “get it.” It was announced yesterday that e 2014 conference will be in Denver, Colorado. Even though I still have half a day left in Atlanta, I am already getting excited to travel to the Rockies next October. Especially given the recent discoveries about hypocretin, it is no wonder that I feel more alert when I think about this conference. It is most definitely something I thoroughly enjoy.

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