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How much has your narcolepsy service animal helped you? #Narcolepsy #Cataplexy #ServiceAnimals

Does anyone out there have a service animal for narcolepsy, with or without cataplexy, and how have they helped you?
I was diagnosed with narcolepsy 3 days ago, after dealing with the symptoms for 30 years. I want to have my dog, who is already smart, loving, protective, and obedient, trained and certified as my service animal. The thought of having him as my constant companion and not being afraid of having cataplexy alone in public has really been the only silver lining for me this week. However, my husband’s view is that I have gotten by without a service dog so far, so why do I need one now?
How has your service animal helped you, and how can I explain to him that it’s not about “getting by” anymore - it is about managing this disease to the full extent that I can, to finally be free to live my best full life?

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Abstract of 'Pain perception in narcolepsy with cataplexy patients'

Does anyone else with #Narcolepsy struggle with pain that has been very difficult to manage successfully?

This is something I ran across that may explain a LOT.

I am not at all sure I really understand, though... Anyone?

Thanks!! :-)

#Narcolepsy #Cataplexy #ChronicPain #Pain #Neuropathic Pain #Orexins #Hypocretins


#EmergencyRoom adventure!

Oh my, I've had a heck of a week. I wound up in the ER friday with a very unusual migraine.
When I got home, I realized I never refilled my SSRI, so I had not taken it in three days. Oh! Migraine trigger, withdrawl symptoms, makes sense.
On top of that, I bet that's why I was not sleeping well #Narcolepsy . I also suspect one of my symptoms (that really scared me and motivated me to go to the hospital at 11pm Friday) might have been #Cataplexy . I've never had cataplexy before, but ssris are used to treat/ prevent it. Also, the weakness, collapse, and uncontrollable crying seem to add up, ish?
Well, being upset and crying would tend to trigger cataplexy. And upset and crying would possibly be caused by lack of ssri, which I also take to manage my #PanicDisorder . So I had a panic attack, then cataplexy, which caused a panic attack, then cataplexy, and so I couldn't get off the floor for hours.
I went into the ER and confused some doctors a lot. They gave me migraine meds, scanned my brain to check for stroke and stuff, and sent me home feeling somewhat better.
Now that I realize I'd missed doses of medication, it all makes sense. (In my non doctor opinion. I do follow up with my gp, neurologist for migraines, neurologist for sleep, and psychiatrist soon.)


Can you keep crying during #Cataplexy #Narcolepsy

Hi. So far, I've been diagnosed with type 1 #Narcolepsy (without cataplexy.) Yesterday I had a scary experience, and I wonder if it was cataplexy? I was upset and crying. First, I couldn't stop crying for a very long time, even though I wanted to and my body was exhausted. Second, I couldn't get up off of the floor. Every time I tried, I kinda collapsed.
So: can you keep laughing or crying during cataplexy? Does this sound like cataplexy to anyone?

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Moms with cataplexy, did you have to have a C-section?

I have been reading a lot lately on pregnancy and type 1 narcolepsy. My husband and I would love to have a family within the next few years, but I am petrified to get off xyrem (and the reality of parenthood & this disease). I’ve read that some women have cataplexy episodes during labor and therefore have to have a c-section . Is this true? How was your experience of pregnancy and motherhood with your symptoms? Any advice for me?

Would love to hear and learn from those who have gone through this.

#Narcolepsy #Cataplexy #Type1Narcolepsy #Motherhood