Chiari and Narcolepsy

Symptoms and Treatments
1

Has anyone been diagnosed with Chiari and Narcolepsy or Idiopathic Hypersomnia? If so were you diagnosed before or after decompression surgery? What treatment do you use? Do the meds help? Thanks for any input. Its hard struggling with both.

2

I was diagnosed with narcolepsy years before Chiari. After decompression it went away, but when symptoms recurred, so did the narcolepsy. I was treated with Provigil/Nuvigil, which kept me awake during the day and then an anti depressant at night to keep me asleep, because I also act my dreams out.

3

Is narcolepsy related to chiari? Just curious bc I’m always tired no matter how much sleep I get. Also when I look down for any reason I immediately get overwhelmingly tired or just fall asleep.

4

My first neurosurgeon said about 20-25% of his patients with Chiari also had narcolepsy. I also met a sleep specialist at a conference once who said decompression would help symptoms.
I wonder if you have basilar invagination or loss of CSF flow since it happens when you look down.

5



sherry Crockett said:

Is narcolepsy related to chiari? Just curious bc I'm always tired no matter how much sleep I get. Also when I look down for any reason I immediately get overwhelmingly tired or just fall asleep.
I know this is an older post and not sure if you'll see this but I am just now going through the hoopla with sleep doctors and thought this might help you. I had been told by some doctors I had narcolepsy long before I had found out about Chiari as well and never believed them. They mainly said it because of my Sleep Paralysis issue, and now say again thanks to my sleep study but there was one interesting tidbit from the study they found that I think explains things better and would make you very tired. Central Sleep Apnea, and it is quite common in Chiari patients. Have you ever woken up in the middle of the night gasping for air?

Older info but definitely worth a read.
http://asap.org/index.php/medical-articles/sleep-disordered-breathing-and-sleepiness-in-patients-with-chiari-type-i-malformation/