Updates in Treatment of Idiopathic Hypersomnia and Kleine Levin Syndrome with Kiran Maski, MD, MPH

Dr. Kiran Maski gives us an update in treating idiopathic hypersomnia + Kleine-Levin Syndrome.
Dr. Kiran Maski is an Assistant Professor at Harvard Medical School and a child neurologist and sleep medicine specialist at Boston Children’s Hospital. She received her pediatric neurology residency and pediatric sleep fellowship training at Boston Children’s Hospital (BCH). She is the Director of the Neurology Sleep Clinic at BCH. Dr. Maski’s clinical work and research is focused on pediatric CNS hypersomnia disorders. Dr. Maski has created a hypersomnia clinic at BCH where she sees children and young adults with Central Nervous System (CNS) hypersomnia conditions from all over the world. She is an advocate for CNS hypersomnia patients in promoting awareness of these diseases among healthcare providers and schools. Dr. Maski currently serves as the Chairperson of the American Academy of Sleep Medicine Task Force for the Treatment of Central Nervous System Hypersomnias.
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[@justsheley]

I don't know about anyone else, but I eat in part trying to boost wakefulness - sugar, caffeine, etc. Being awake does not just eliminate that but also allows for activities.
The daytime sleepiness test is indeed torture. Sadly, I've had most of these issues since I was a child. I've only ever been awake overnight for as long as I can remember. It's just when my body would cooperate. Prednisone was the only thing that helped. Obviously, that's not a real solution.
I missed tons of school. I wouldn't take jobs that began before 10 am (in good times), and that meant sleeping the whole time I wasn't at work in the hope of waking & being on time. I can fall asleep standing up, eating, mid-conversation. The weather definitely affects me. I've slept for days with tiny periods of being awake. This is why I never had children, frankly. How would I care for them?
Apparently, it runs in the family, though I was much worse than my dad.

[@Timayy]

prednisone is interesting. do you still take that? can u explain how it makes u feel? could be something inflamatory causing the sleepiness

[@justsheley]

@Timayy I've never taken it for sleepiness. It's prescribed for other things, and my life is dramatically better for that time. I was on time for work. I do things without going through every step mentally. My nails even get strong. Basically, I feel the way I imagine real people feel. They tried giving me cortisol; NSAIDs; checking my hormones, vitamins, etc. Nothing. To date, nothing else has had the same effect. With that said, there have been times in the last few years that prednisone doesn't work in the usual way. I have no idea why.

[@Timayy]

@@justsheley does it help with the sleepiness though? Do u take this all the time?

[@justsheley]

@@Timayy yes, it helps. Like I said, it's how I imagine "normal" people live - 8 hrs at night, up on time for work, cleaning or socializing after work, etc. They will not give me prednisone all the time, though. It's really bad for you.

[@Timayy]

@@justsheley how often? i know there i some conditions where its taken pretty frequently.