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rebeccamiller
@rebeccamiller

Posts: 2
Joined: Aug 21, 2018

Narcolepsy

Posted by @rebeccamiller, Tue, Aug 21 11:06am

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.

REPLY

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?

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.?

Hi, @rebeccamiller – wondering how things are going with the narcolepsy and cataplexy? Have you found any nonstimulant medications that work for you at all?

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