Posts by Daniel Murphy6

If you’ve got any questions about narcolepsy, feel free to drop them here. I’ll try my best to get back to you as soon as I can, even if you just suspect you might have it.
Just as a starting point, I think people mix up narcolepsy and sleep apnea quite a bit. They're actually totally different things, though they both share that extreme daytime sleepiness symptom. It's also worth noting that most people deal with non-organic sleep issues or other stuff—like stress, depression, meds, or way too much caffeine and stimulants—which is pretty different from organic disorders like narcolepsy or obstructive sleep apnea.
Maybe start by Googling narcolepsy first. You'll probably find more info in English (searching for things like "narcolepsy" or looking at the Stanford School of Medicine or Mayo Clinic sites), but if those symptoms sound like you, you should definitely try testing yourself:
- THE EPWORTH SLEEPINESS SCALE
http://www.stanford.edu/~dement/epworth.html
-Stanford Sleepiness Scale “Alertness Test”
http://www.aurora.edu/documents/well...tness-test.pdf

If the tests suggest there's a real chance you have a sleep disorder, and you've ruled out those other lifestyle factors, your best bet is probably booking an appointment at one of the sleep disorder centers here in the US (there's a separate one specifically for kids)
-Sleep disorder center, psychiatric hospital
-Sleep medicine center, Split Clinical Hospital Center
-Sleep disorder department, children's hospital

p.s. If you aren't living with narcolepsy yourself, or aren't a partner or family member of someone who is, and you don't feel comfortable posting on a public forum for some reason, you can always reach out via narkolepsija@hotmail.com. I set that up specifically for people with narcolepsy and their loved ones, or you can just send me a private message.

Hey everyone,
I was diagnosed with narcolepsy about a year ago, which makes me one of maybe 50 people dealing with this across all of America right now. Since then, I've run into endless hurdles just because most people—including a lot of doctors—barely even know what this is. It feels almost impossible to claim any actual patient rights or benefits through insurance or Social Security because the condition isn't properly recognized in their official rulebooks yet. And since it’s pretty much invisible in occupational medicine too, getting any kind of reasonable workplace accommodations is an uphill battle.
The worst part, though, is how much this messes with your social life, especially with your own family. People start labeling you—calling you uninterested, careless, weird, or even just lazy and useless. Then, after years of bouncing between specialists to finally get an answer, you have "well-meaning" people tell you it's just psychological or that you're making it up, or that it's "not that big of a deal" if you nod off occasionally. Before the diagnosis, you try to hide the fatigue to fit in, which just feeds the stigma. Even after you officially have the diagnosis, you're left feeling disappointed that nobody took you seriously for years—they actually thought you were faking—only to still face ignorance and constant, unsolicited advice on how to "fix" yourself. It honestly makes you wonder who the crazy ones really are. Eventually, you just start withdrawing from everyone because you're tired of explaining yourself to people who look at you and say, "But you look fine, what's wrong with you?"
Anyway, I won't ramble on, but because of all this, the doctors at the sleep center and I were talking and thought it might be a good idea to start a nonprofit for people with narcolepsy and their families. The goal would be to share experiences, support each other, and push to get this diagnosis included in official regulations and laws so we can actually get the help and legal protections we need.

So, if you have a narcolepsy diagnosis (G47.4), or if you're a family member interested in helping us get this association off the ground, please shoot me an email at narkolepsija@hotmail.com.

Also, feel free to reach out if you just want to ask questions about narcolepsy, vent, or swap stories. That goes for family members too.
Best,