Narcolepsy Type 1 (Narcolepsy with Cataplexy)

Posted by maddyjulia @maddyjulia, Sep 19, 2021

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!

Interested in more discussions like this? Go to the Sleep Health group.

Is there anyone out there with Narcolepsy & Cataplexy? I cannot take any stimulants for my Narcolepsy; they significantly increase my chronic CRPS pain. Muscle spasms result from a stimulant, especially in my face, neck, and jaw. My pain goes off the charts. Chronic migraines set in – even with Botox for Migraines Injections. What nonstimulant medications exist that treat N&C? Also, I suffer from horrific night terrors.

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@rebeccamiller

Is there anyone out there with Narcolepsy & Cataplexy? I cannot take any stimulants for my Narcolepsy; they significantly increase my chronic CRPS pain. Muscle spasms result from a stimulant, especially in my face, neck, and jaw. My pain goes off the charts. Chronic migraines set in – even with Botox for Migraines Injections. What nonstimulant medications exist that treat N&C? Also, I suffer from horrific night terrors.

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Hi, @rebeccamiller — sounds like stimulants have not been at all ideal in your case for narcolepsy, due to increasing your chronic complex regional pain syndrome (CRPS) pain.

I'd like to offer some Mayo Clinic information on narcolepsy, here: https://mayocl.in/2rx7Wjk. Information on night terrors can be found here: https://mayocl.in/2FMVSgs.

I thought you might like to meet some others on Connect who have talked about narcolepsy, like @oldkarl @plshelpmyfatigue @jimhd @disneyfan @scottsdalehealth26 @kdubois. Hoping they may have some ideas for you on nonstimulant medications for narcolepsy. @darlia and @hopeful33250 may also have some input.

My sister-in-law has narcolepsy, and she has been taken off of driving for any distance more than around town — she was having trouble with a longer commute to work and experiencing symptoms. How has driving been for you?

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@rebeccamiller

Is there anyone out there with Narcolepsy & Cataplexy? I cannot take any stimulants for my Narcolepsy; they significantly increase my chronic CRPS pain. Muscle spasms result from a stimulant, especially in my face, neck, and jaw. My pain goes off the charts. Chronic migraines set in – even with Botox for Migraines Injections. What nonstimulant medications exist that treat N&C? Also, I suffer from horrific night terrors.

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Hello @rebeccamiller and welcome to Connect!

Your post certainly presents a variety of problems that make it hard to treat your narcolepsy. I see that Lisa, @lisalucier invited me to this discussion.

I have Parkinson's (PD) and people with PD usually all have sleep problems with vivid night time dreaming and often "thrashing about." Sometimes when I wake up I feel tired from all my activity during the night so I have some understanding of what you might be experiencing.

Have you had a thorough work-up with a neurologist regarding the night terrors, narcolepsy, etc.?

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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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@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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Is there a discussion group on Narcolepsy

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@emyliander

Is there a discussion group on Narcolepsy

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Hi Emy,
I moved your message to this discussion about Narcolepsy.
– Narcolepsy Type 1 (Narcolepsy with Cataplexy) https://connect.mayoclinic.org/discussion/narcolepsy-type-1/

I did this so you can connect with other members talking about narcolepsy like @maddyjulia @dcwash @nanatheresa @rebeccamiller and to see the helpful posts made previously.

Is narcolepsy something new for you, Emy?

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@colleenyoung

Hi Emy,
I moved your message to this discussion about Narcolepsy.
– Narcolepsy Type 1 (Narcolepsy with Cataplexy) https://connect.mayoclinic.org/discussion/narcolepsy-type-1/

I did this so you can connect with other members talking about narcolepsy like @maddyjulia @dcwash @nanatheresa @rebeccamiller and to see the helpful posts made previously.

Is narcolepsy something new for you, Emy?

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Hi Colleen,
Thank you for your reply, it maybe that I’m interested in Narcolepsy type 2.
I have been taking medication for about 10+ yrs, at the time I had a sleep study which ruled out Narcolepsy and I was told I have EDS. My medication enabled me to continue working as a nurse, as I would fall asleep at inappropriate times, and it was difficult to drive long distance. The med has made a world of difference.
We have moved to NY and my present Dr. Is not comfortable prescribing my med without a Narcolepsy diagnosis. I don’t want the diagnosis because I would probably not be allowed to drive, but without it my days would be wasted, so I’m between a rock and a hard
place. I don’t have cataplexy or hypnagogic dreams, but I do have many other symptoms.
I was not aware of there being a type 1 and type 2 diagnosis. It’s an interesting subject anyway so I’ll learn new aspects of it.
I still have memory problems, a brain MRI revealed that I had had some very minor strokes. I was also low in Vit: B12 and recieved Vit B shots for a few months followed by B12 by mouth. I was surprised to experience the difference it made.
Later on my B12 was too high so I stopped taking it. After several months I started to experience increased memory problems, a recent blood test revealed a low B12 again. So I can believe the difference it makes.
This may be helpful info for other people on Mayo and I share it with friends when the subject comes up.
Bye for now,
Emy.

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