top | item 32964177

(no title)

gboone | 3 years ago

As a top comment I want to throw in additional info to help balance what it is like. I also have narcolepsy. Not everyone who has narcolepsy has cataplexy, which is the sudden paralysis or sleeping in response to emotional stimuli. But, everyone with narcolepsy has a sleep cycle where deep sleep is entirely or mostly missing.

Not everyone has vivid dreaming, but hallucinations of vision and sound while not sleeping are also possible. Life with narcolepsy and no medication is a life of great difficulty, as it's essentially sleep deprivation. You can't just sleep it off.

Diagnosis often coincides with having been sick, but it's not the virus that is the problem. It's the immune system. It really is an invisible problem to others. My own family had a hard time accepting it.

Most people would be surprised to learn I have it, but medication helps a lot. I also still take at least one nap a day. The medication administered for daytime use is stimulant class drugs, and this causes being tired as well with higher heart rates. But it's better than no medication. I am super thankful for medication that helps. Xyrem is such a simple drug and I frown on Jazz pharma squeezing every $$ they can from it. But from a treatment standpoint, I have a life again.

discuss

order

No comments yet.