Narcolepsy Type 1 (Narcolepsy with Cataplexy)

Posted by maddyjulia @maddyjulia, Sep 19 7:42pm

Hi there. After years of unexplained symptoms, my daughter was finally diagnosed with narcolepsy type 1, aka narcolepsy with cataplexy. I too suffer from hypersomnia, but the cyclical nature and neurological symptoms seems much more in line with Kleine-levin syndrome. Does anyone know if there’s a connection between the two? Also, kleine-levin is so rare I feel like it would be hard to get a doctor the take me seriously. It was hard enough getting my daughter diagnosed with narcolepsy—it took years!

Hello @maddyjulia, Welcome to Connect. You will notice that we added a little to your title to hopefully bring members into the discussion who may not know that narcolepsy type 1 is now what the medical community calls narcolepsy with cataplexy. I have no medical background or training but did read some information that leads me to think there is a connection between Kleine-Levin Syndrome and hypersomnia. — "Recurrent hypersomnia (also known as Kleine-Levin syndrome) is characterized by periods of excessive sleeping up to 20 hours a day, which lasts from 2–35 …" — Kleine-Levin Syndrome – an overview: https://www.sciencedirect.com/topics/medicine-and-dentistry/kleine-levin-syndrome.

Also you might find the following Narcolepsy Fact Sheet helpful – https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet. You might also find the following site helpful for preparing what to discuss and planning the conversation with your doctor – https://patientrevolution.org/visit-tools.

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

REPLY
@johnbishop

Hello @maddyjulia, Welcome to Connect. You will notice that we added a little to your title to hopefully bring members into the discussion who may not know that narcolepsy type 1 is now what the medical community calls narcolepsy with cataplexy. I have no medical background or training but did read some information that leads me to think there is a connection between Kleine-Levin Syndrome and hypersomnia. — "Recurrent hypersomnia (also known as Kleine-Levin syndrome) is characterized by periods of excessive sleeping up to 20 hours a day, which lasts from 2–35 …" — Kleine-Levin Syndrome – an overview: https://www.sciencedirect.com/topics/medicine-and-dentistry/kleine-levin-syndrome.

Also you might find the following Narcolepsy Fact Sheet helpful – https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet. You might also find the following site helpful for preparing what to discuss and planning the conversation with your doctor – https://patientrevolution.org/visit-tools.

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

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Thank you. I wish I could come to the Mayo Clinic, but my insurance only covers providers in Colorado unless I get special permission, and I have no idea how to do that.

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