Im 44 yrs old, live in Indiana. Diagnosed 1yr ago. Been on disability from work since April. I was a happy healthy single mom, in the best physical shape of my life until I had a heart attack 2 yrs ago. While recovering, I was so tired all of the time. Taking naps at lunch etc. I assumed it was from the heart attack or medicine. I started having cataplexy(not knowing what it was) at work which went undiagnosed for 5 months. Finally after a neurologist put me in the hospital for 5 days to test for epilepsy, he told me that "sometimes stress can cause similar symptoms, I recommend seeing a psychiatrist" !!! That was a very low point for me. Anyway, I finally got to a sleep Dr and was diagnosed.
I've taken provigil, which lost effectiveness w/in a few months. Effexor for cataplexy. Lexapro (which made me suicidal). Now I'm on Zyrem + Effexor but i'm not optimistic. Either I'm tolerating to the medicine or my cataplexy is just getting worse. I have attacks that last for 30mins or more...is that common? I seem to also be getting more triggers, that I never had before.
Needless to say, depression is a big problem. Anxiety about going out in public or being around groups of people. Trying to figure out what I can do to enjoy life again. I used to ride off road motorcycles, backpack, camping. I cant do most of the things I enjoyed 2 yrs ago....and if I can do it, I'm dependent on someone being with me. Life is just day to day right now.
Glad I joined.
So are you saying you had no symptoms before the heart attack? If so that is interesting, I've never heard of a heart attack induced case of narcolepsy and I can't really think about what about a heart attack would cause it unless there was also a stroke or something right around the hypothalamus. I don't really know, just spiff balling but I am interested. As for the medication, it isn't easy for any of us, let alone your seemingly unique case.
I dont think the heart attack caused the narcolepsy. But maybe the stress of the heart attack worsened my symptoms. But I'm sure they were unrelated. Actually, after realizing what cataplexy was....it explained some bizarre events that landed me in emergency rooms about 4 yrs ago. And a haunted house incident where just fell to the ground :D I was becoming more sleepy at that time, but assumed it was working single mom stuff. Ive never been able to stay awake in the car for more than an hour or so. Thinking back, friends and my kids, would laugh because I never stopped moving, always doing something, not sitting down. I realize now, its because I was so tired, I was afraid Id fall asleep! DENIAL!