Board Member Amy Haraden Speaks About Living with IH at SLEEP2 Conference

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On June 3, 2017, Board Member Amy Haraden participated in a Patient Panel at the SLEEP2 (PCORI) Conference organized by Project Sleep. SLEEP2 is a project co-led by the University of Arizona, the Sleep Research Network, and Project Sleep and is funded by the Patient-Centered Outcomes Research Institute (PCORI). SLEEP2 aims to engage patients, scientists and other stakeholders as partners across the entire span of sleep research, from topic generation to conduct of studies to disseminating and implementing research findings.

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Video Transcript:

I don’t know exactly when my symptoms started… but my parents have always said I was a “good” baby. I was generally happy, always slept through the night and could go down for a nap on cue. It’s unclear whether the condition worsened or was just more noticeable transitioning from childhood to adulthood. But my condition seemed to have a greater effect on my life as time went on.

It wasn’t until grad school that I ever thought my sleepiness could be abnormal. We went out one evening after one of our last classes before graduation, and one of my friends put his arm around me and said, “you know, Amy is a really cool girl, it’s too bad we can never talk to her because she’s always sleeping.” It was at that moment that it hit me. I was sleeping constantly and was always tired… maybe this isn’t normal.

I decided to reach out to a local sleep lab and schedule a sleep study (at the time I was covered by fantastic health insurance that didn’t require a prior authorization to see a specialist). Sure enough, my results came back abnormal, and they asked me to come back in and do another sleep study with an MSLT (or nap test the next day). As a result of this, I was given an initial diagnosis of “probable narcolepsy” in 2012. However, I was told by my doctor that I didn’t fit the profile of someone who has narcolepsy, but my results were abnormal and they needed to diagnose me with something in order to prescribe any treatment. Although we have come a long way in the last 5 years, I think this initial diagnosis speaks to the need for awareness, education, and more research, of hypersomnolence disorders, even in, and especially in the medical community.

Nevertheless, I was prescribed stimulants, which seemed to help, but were also problematic on their own. The most terrifying side effect for me was that my blood pressure skyrocketed to something like 160 over 90. I was generally an active person, and having my resting blood pressure so high made me afraid to exercise. My neurologist wanted to write me a prescription for blood pressure medication. I refused to take another drug in order to treat the side effects of another drug, but I didn’t want to stop taking the stimulants, and it seemed like I didn’t have any other options.

I wasn’t satisfied with my diagnosis and my treatment. So, I continued to research on my own online and network with people in search of what I was actually experiencing. In 2014, I was able to secure an appointment at Emory University. I went to Atlanta and got a lumbar puncture, or spinal tap, on my 25th birthday. Believe it or not, I was very excited for this procedure and the prospect of what could come from it; for me there wasn’t a better birthday present than that. I had my mother and my boyfriend by my side supporting me as well. I try to bring both of them to all of my neurology appointments because, well, it’s a neurology appointment, and I’m not always self-aware enough to be able to communicate how I am doing, and also, having them hear everything from the doctor’s mouth removes the burden of having to try to explain what’s going on with me to them. Anyhow, I received the test results from Emory which supported a diagnosis of idiopathic hypersomnia.

Which leads me to my current treatment; I am thankful that my regimen allows me to continue working full time. I use something called flumazenil before bed, and I take stimulants during the day. And it was my test results from Emory that allowed me to try flumazenil as a treatment.

Flumazenil is a GABA-A receptor antagonist which is approved by the FDA for intravenous use to reverse the actions of benzodiazepines such as Valium. And, in the instance of patients with hypersomnia, it’s being used as an investigative treatment in an off-label way to compete with a presumed naturally occurring chemical in the body that acts very much like Valium.

Such a treatment is 180 degrees from all current FDA approved medications meant to treat narcolepsy, which act to promote wakefulness by enhancing brain chemistry that promotes wakefulness. Whereas flumazenil is promoting wakefulness by sort of neutralizing the tendency to be sleepy. It’s worth noting that there are NO FDA approved medications for idiopathic hypersomnia.

And for me, flumazenil has been life changing. It’s a compounded cream… that I rub on my arms… and it helps me wake up in the morning. This is huge. I still don’t LIKE waking up in the morning, but then again I haven’t met many people who do. But the difference is that when I put flumazenil on, I CAN wake up in the morning. My alarm goes off and I still want to snooze it, but the fact is, I hear it and I WAKE UP. Whereas before flumazenil, I would sleep through anything and everything. Stimulants keep me awake during the day, and with the addition of flumazenil, my blood pressure seems to have returned to normal. I’m not always as alert as I would like to be, but they keep me awake, and actually make it impossible for me to nap. It’s not a perfect solution, but as I said, it keeps me AWAKE! I can’t speak for the exact science, but in line with the presentation earlier, I would love for the focus of scientists to be on developing more therapies that directly impact the underlying disease process.

Stimulants certainly help me get through the day, but my body tells me that they’re not getting at the root of the problem. For me, although idiopathic hypersomnia is generally considered a sleep disorder, it’s really more of a wakefulness disorder. I feel like I don’t have any problem with sleeping, I could sleep most of the day while untreated, but my real struggle is with feeling awake.

Throughout my treatment, I have constantly been asked by doctors how I feel, and if I think it’s working or if I need more, and I’ve had to admit out loud that I’m not sure if I even know what “normal” is supposed to feel like. Before treatment, I was certainly more excessively sleepy, and I was always late for things due to struggling with waking up in the morning and napping until the last second between activities. I was also extremely irritable, especially when transitioning from sleeping to awake, and I wouldn’t remember anything. When someone would try to wake me up I would sometimes yell at them or even throw a pillow at them and have zero recollection of it… whoever in my family drew the short straw was the one that got to try to wake me up. This was incredibly frustrating and trying on the relationships with the people closest to me. I still experience daytime sleepiness and irritability with my current treatment, but it’s significantly more manageable and I feel like I have more control. Having said that, I know that there is much more to be discovered and proven, and I hope that my story helps you understand the impact that these types of disorders have on people, and inspires you to join in supporting research to find a cure.

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