Narcolepsy

[Guest]

My 19 year old has been diagnosed with a form of generalized
dystonia that is dopa responsive. Meds are Sinemet CR and Artane.

Several mornings each week when we wake her, she cannot
respond other than opening her eyes and some movement of limbs. This takes several hours to wear off. Sleep study was done two years ago with the diagnosis of a "form of narcoplsy - not sure". Our neuro says we'll probably never know what is causing it.

Needless to say, she needs to find out what is causing this as she cannot be left alone while in this state. Work and classes need to be scheduled noon or after, which is not conveneinet for her or the rest of the family.

Next appointment in June, we were considering asking our neurologist if a trial of some type of medication used for narcolepsy might be tried.

Have you ever seen a case similar to this and if not, what would you recommend?

[Guest]

it is possible what you describe is sleep paralysis. this is a symptom of narcolepsy but can occur in other conditions. Has she seen a sleep specialist? It would be important to make the diagnosis of narcolepsy before starting any medications.
[quote] My 19 year old has been diagnosed with a form of generalized
dystonia that is dopa responsive. Meds are Sinemet CR and Artane... [/quote]

[jopark]

I am 40 and I've dealt with Narcolepsy since 15. Unfortunately, I suffer with what you're describing in the mornings. My Neurologist prescribes me with Ritalin 2 times a day. Before my son left home he would bring me my pill and a bottle of water in the morning. It still took me about 15 minutes to be able to take it from him and another 15 minutes for the medication to take affect. During time changes it is more difficult to wake up. Its good she has you around for support. Once she's prescribed medication take it to her in the morning. Give her a pre-wakeup before you get the water and medicine, by then she'll have time to come out of paralysis. By the time you get back with the water and medication she'll be ready and you'll be less frustated. I've been called lazy by my family because I'm the only one with Narcolepsy so I'm glad she has support. Also, a little advice for her career options please consider one that shes moving physically with flexible hours and that don't require repetitive functions. It will only onset sleepiness and tiredness. Stimulation is the way. Good luck