Current and Future Treatments for Idiopathic Hypersomnia With Dr. Thomas Scammell
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- Опубліковано 16 лис 2023
- Welcome to Living With… a UA-cam series presented by Hypersomnia Foundation. In this episode, Claire Wylds-Wright, CEO of Hypersomnia Foundation, sits down with Dr. Thomas Scammell, a Professor in Neurology at Harvard Medical School, Beth Israel Deaconess Medical Center, and Boston Children's Hospital.
For the last 25 years, Dr. Scammell has run a research lab at Beth Israel Deaconess and focused on identifying the brain mechanisms that control sleep and wakefulness. He has received several National Institutes of Health (NIH) grants for this work. One of his lab's main focuses is orexin, a neurotransmitter that helps wakefulness and cataplexy.
In this episode, Dr. Scammell and Claire discuss current medicines available for symptom management of idiopathic hypersomnia, his current research around idiopathic hypersomnia, and how that impacts upcoming medicines and opportunities for our community.
Watch now for Dr. Scammell’s deep dive into current medicines for sleepiness and morning sleep inertia. We appreciate his clinical work and research aimed at improving quality of life for people with idiopathic hypersomnia.
Living With… is hosted by Claire Wylds-Wright with the Hypersomnia Foundation. It is produced by Elizabeth Joy Windom of Windhaven Productions.
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I was recently diagnosed with IH and have been taking modafinil which barely takes the edge off my daytime fatigue, but I’m trying to get more information about the disease and hopefully I can get better treatment in the near future! My ultimate goal would be to find out the actual cause of it for me and everyone with it. It’s super frustrating and really does inhibit my life. Thanks for the research you’re doing and for putting that information out there 👍🏻
This was excellent and very helpful. Thank you both so much!
I had to go on antibiotics for two weeks and was told to go off modafinil until I finished the course. The idea of not taking modafinil and feeling ill, sleepy and foggy gave me anxiety. One of the antibiotics was clarithromycin which I had to take twice a day at 500mg each. While on antibiotics, I felt more normal and less sleepy than when I was on modafinil. I thought it was odd so I researched each medication and stumbled upon the clarithromycin study and it made sense why I felt normal and awake.
I am 2.5 hrs awake after a 7 hr night on cpap which is good enough for the most days but I’ve taken my aderrall and 2.5 hours into the day and ready to lie down falling asleep listening! But I can go 16 hours or 3 hours and feel the same. I’ve even reached past 18 hours of sleep without moving having sore hips upon riding and ready to nap or go back to sleep after a few hrs being awake. I’m 35 and have been having this since I was a teenager. Worked night shift for 8 years in hospital and 9 years day shift. I can wake up ready to go hit snooze and if I’m not late for work or had a family to tend to, I could easilly wake up 12 hours later after sleeping for 8-12 and realize omg I slept the day away. Meds help very little I have anxiety about asking for yet another Dr. or NP because it’s always the same things.. your hormone levels look great you’re overweight you eat terribly and vitamin D is low. Well it’s because I’m a nurse who works extra has a young family needs money and lives in Indiana! I’m lost everywhere I turn. I need help with this to have a productive life!!!
I suffered cataplexy as a child, with lifelong migraine starting around age 9. The migraines iand fatigue in the end hampered me to the point where I had to retire as an attorney.
As the migraines started to become progressively worse in 1996, still in my 20's I suffered an overwhelming bout of hypersomnia. But then it became episodic.
The worst episode was from Jan to mid April in 2016. I slept 22 hours a day - every day for three months. The longest sleep was 30 hours.
When I did wake, I would do anything to get my hands on ice cream. At no time during such attacks do I ever feel rested.
After a lot of diagnosing by exclusion, my neurologist specialising in sleep medicine diagnosed me with Klein Level Syndrome. It is plain scary.
The most ridiculous aspect of getting the ample dosage to sustain our awake hours is RULED by the insurance company. That's disgusting!!!
uggh i feel this. i never managed to get modafinil covered for my IH treatment, eventhough it was prescribed by my sleep doctor