Share Your Journey | My Way of Saying That Research on IH Matters

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The day a doctor finally took me seriously when I told him about always being tired, oversleeping almost every day, and generally walking through life in a sleepy fog was one of the best days of my life. I wasn’t lazy! I wasn’t alone! There were other people like me. It was amazing. When I walked out of the clinic that spring morning some five years ago, I was elated. I had prescriptions in hand and thought everything was going to change for the better. Where it had once looked cloudy and a little bleak, my future now held potential and promise.

But then the drugs didn’t work. Some helped but had side effects that were too much to handle. Others worked for a little while and then not at all. And then some did nothing. As the months passed, I tried one drug after another until I had exhausted the short list of available medications. After a while I was almost back to the starting point. I say “almost” because, unlike before my diagnosis, I had hope that things could get better. I had faith in my doctor and his research team and believed that someday there would be something new to try.

“Someday” was not close enough for my liking, though. I wanted to do something and not feel as though I had to wait patiently. I read more about GABA and hypersomnia. I paid attention to how my habits affected how I felt. I downloaded an app and tracked my sleep for over a year. Doing something, no matter how small, felt good. When I got a call from my doctor’s research coordinator asking if I would be willing to participate in a clinical trial, I jumped at the opportunity.

Participating in a clinical trial meant paperwork and blood draws and regular trips to the clinic. It also meant putting off starting a new treatment opportunity until I was completely finished with the trial. Sometimes it meant not having my morning coffee. I’ll be honest, that part was pretty rough. But I saw my participation as a way to be actively involved in getting better. I also saw it as a way to be actively involved in helping others like me to get better.

Not everyone is able to participate in a clinical trial, which makes it all the more important for those of us who can to be willing to do so. Some have found a drug that works, and the thought of stopping to try an experimental drug can be frightening. Others may have health conditions that prevent them from joining a trial. More often than not, though, geography limits participation.

As for me, I was fortunate enough to live within a short drive of the research clinic, which made it easy to be involved. I also hadn’t found any drug that worked, so I wasn’t giving up anything there. Instead, I gave up a few Saturdays, and an hour here and an hour there. I gave up a lot of blood and a little cerebrospinal fluid. I also gave up 10-minute chunks of time doing the psychomotor vigilance task (PVT) or, as I like to call it, “the world’s most boring video game,” more times than I can count. But I gained much more. I continue to have hope that, one day, there will be effective treatments for me and others like me. I have hope that, as research findings get published, more doctors and medical providers will read about them and will no longer dismiss patients who are tired and sleepy all the time as “lazy” or “crazy.” I also have hope that, as scientists learn more about sleep through their research, they’ll uncover new knowledge and understanding of problems other people face. Or maybe they’ll finally learn exactly why it is we fall asleep every night. That would be pretty neat, too.

One of the best parts about receiving a diagnosis was knowing that I wasn’t alone. Having a community of people who understand what it’s like to struggle to wake up each morning is an important thing. There is a lot of work to be done. We need more than understanding. We need effective treatments. I don’t have scientific expertise and a lab to study new drugs. I don’t have piles of money to fund research. But I do have time to participate in a trial. Agreeing to be in clinical trials is my way of saying that research on idiopathic hypersomnia matters. My experience with it matters. And a future without it matters.

JF, age 32, Columbus, GA
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