Living with Narcolepsy



I’m curious to know if anyone else suffers from Depression along with their Narcolepsy. I’m on 187.5 mg of Effexor XR which is for my cataplexy but it can also be used for depression and I’m not sure if I want to go to counseling.
How do you guys deal with your mental state?


The sleep deprivation caused by my narcolepsy leaves me very depress. I have been on anti-depressants for decades, I exercise daily, I have a deep spiritual life, I read and I try to do some things that preoccupy my mind like baking. It is not always easy. I am also fortunate to belong to an in person narcolepsy support group.


I was depressed and anxious long before having symptoms for…whatever they wanna say I have (diagnosed with narcolepsy 13 years ago and after a botched sleep study recently, they’re claiming I’m not narcoleptic but might have hypersomnia insert eyeroll here). I had been on 150mg of Effexor XR for many year before suddenly going cold turkey and stopping it. Withdraw was not fun but it’s been 7 years off it and I wanna die most days. On the other hand, I’m supposedly bipolar, as well as is my oldest child. (It’s sadly my kid who keeps making casual suggestions I get back on meds.) To be honest, if I wasn’t already depressed, some of the nurses at my new sleep center office could easily make me so by how belittling they are of my sleep disorder. As a nurse myself, it’s just so upsetting that people in my profession have such little compassion for people with ‘invisible diagnoses’ basically. I find even for people who work with those of us who have these disorders, when you don’t actually have something of this magnitude affecting your everyday life, you really just can’t appreciate and understand the severity of how debilitating something like a serious sleep disorder is and -that- in and of itself would make anyone depressed, I think. To have people look at you like you’re just lazy or exaggerating how ‘tired’ you are.


I would love to go talk with a counselor if I could find one my insurance would accept. I think it would help to have someone else that could help me understand how to handle some issues. Also to just let me face the things that make me mad that I don’t always deal with. But for now I do take medicine that helps with the depression. I also talk with my husband, family and friends. I write, listen to music, get lost in the clouds, take pictures, try something new, read things with meaning, bake, draw with charcoal or I set and remember that I’m stronger than I think I am “Because I’m Awake!”.


I’m so sorry your own doctors and nurses belittle your situation!! That is incredibly frustrating. I think doctors can all use a little more empathy too. Also, maybe med school should require a whole course on sleep/neuro disorders. Hang in there!!!


I also have depression/anxiety. I am taking Prozac daily but it’s not that effective for me. I think the fact I have N makes my depressio much worse because I feel so helpless and N is extremely debilitating.
I am currently trying to find a therapist because it’s getting to be too much to handle on my own.
For temporary relief I do crafts,puzzles, take my dogs on a walk, or watch a movie (but all those activities require alertness so I can’t always do those things when my heart wants to.)
I hope today is a better day for you.


I have depression and anxiety too. I started to see a therapist about a year after I was diagnosed and she really helped. My insurance didn’t cover it, but she gave me a break in her price. I was eventually put on 30mg Lexapro and 150mg Wellbutrin XR. It helps most days, but some days are just bad. I think it just goes along with N. I have to drag myself out of bed in the morning and most people at work don’t like me very much because I am late every day and get to take naps and I don’t get in trouble. They just don’t get that I would trade for anything in the world to sleep normal and that makes the depression worse.