Category Archives: Non-narcolepsy stress

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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Ready to Return

While I have no idea if anyone has visited my blog at all recently, I feel like the fog and haze of the past three years is finally lifting. I decide in February (with much consultation with my amazing and wonderful wife) that I needed to leave my teaching job that I have had for the past 20 years. While my health certainly played a role in the my struggles of the past three years, the reality is that my job had become a deeply toxic environment for me. While I still love my colleagues, my students, and the essential nature of teaching, the leadership and decision-making of my former school continued to drag me lower and lower into depression and frustration.

After I turned in my resignation, I felt a tremendous weight lift, but I still needed to finish the school year. Things went well, but the experience remained overwhelming. In the midst of all of that chaos, more and more signs clarified for me that I made the correct decision. While the school leadership seemed completely nonplussed by my resignation, the much clearer (and far more positive) message came in the form of potential new positions. From my classroom experiences of the last five years, I knew that my next job would involve technology integration, rather than direct student instruction. I had not planned to do any job searching until the school year ended, but potential positions kept finding me. I was interviewed for two positions in public school settings, and although I did not get those jobs, I was not only flattered, but also realized that I was definitely qualified to be a technology integration specialist. Then, as a result of submitting some of those other applications, a friend and former colleague offered me a position at a Catholic grade school. I took the job and started there on August 1 of this year. Even though the school year has not officially begun (and there is a great deal of work to do), I know (without any doubt) that I have made the right choice. I am significantly more at peace and in a far more supportive and well run environment. The added bonus is that my new colleagues are also more open as a group in pursuing technology integration.

Underscoring these positive professional changes, my personal life has also improved markedly. I made the decision to engage in professional therapy again at the end of the school year, in large part because of the impact my previous job was having on my family. The experience has been and continues to be tremendously rewarding. I have found myself, particularly in the past three weeks, looking at the world in a far healthier and more balanced way than I ever have in the past. My therapist is wonderful — in his ability to support me, to draw out my emotions, and to challenge my previously established views of myself and the world. What is most remarkable is that my therapist  has helped me to confront some of the darkest message that I send myself and to integrate them into who I am, allowing me to feel far better about myself. After many years of experiencing joy infrequently, at best, I fins myself overwhelmed by joy on a daily basis.  It has been glorious, to say the least. Even more importantly, all of this has made my relationships with my wife and daughter stronger than ever.

I am thrilled that I my life and world are in such transition and upheaval. And, I am proud to be posting to this blog once again. My goal is to post at least once a week. It will be good for me on many levels, and I still believe that it is important for me to explore and process how narcolepsy impacts my life. As was the case when I began this blog long ago, if no one else reads this, that is just fine. Nonetheless, I do hope that I can help a few other PWNs (and other folks with sleep issues) in some small way. On that note, I am already signed up for this year’s Narcolepsy Network Annual Patient Conference in Atlanta from October 18-20. Hope to see others there!

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Filed under Balance, Blessings, Education, Emotions, Excitement, Healing, Honesty, Hope, Humility, Joy, Love, My story, Narcolepsy, Narcolepsy Network, Non-narcolepsy stress, Relationships, Support, Therapy, Wisdom