Tell us about your symptom and treatment experience. Take our survey here.

caret icon Back to all discussions

Does this sound like cataplexy, or could it be something else?

I fear this may be a long post, but I'm really hoping it can help me with finding answers.
So, almost 2 years ago I first learned what cataplexy was and ended up doing a deep dive of research about it, and ultimately ended up deciding to talk my doctor about it because of how much it sounded exactly like what I've been experiencing for years.
He agreed with what I said and referred me to a neurologist. I got genetic testing and an overnight sleep study done, and the neurologist basically told me that I don't have the gene that most people with type 1 narcolepsy have, and there was nothing medically wrong with me therefor I should talk to a psychiatrist about my problems. He said there was no way it could be cataplexy, and saw no point in doing an mslt because the overnight sleep study "wasn't concerning" (even though I apparently have mild sleep apnea but he still wasn't concerned about it😒).
I talked to my GP again afterwards and we both agreed I should get a second opinion, but I haven't been able to see a new neurologist yet.
I'm just a little worried that I could be having seizures instead. I've brought this concern up with my doctor before, and he's said that it doesn't sound like the typical symptoms of a seizure, but after the first neurologist saying there's no way it could be cataplexy, I'm just worried about what else it could be?

I just had it happen again and recorded everything I could think of and basically: I was already lounging/laying down on my couch when I started laughing really hard and everything in my body became very weak and felt really heavy, like having bags of sand instead of a body is the best way I can think to describe it. Everything went limp including my head and face, but I stayed entirely conscious and could still think clearly in my head. I could also feel myself twitching slightly, and I kept thinking about moving but felt disconnected from my body and just couldn't.
Normally I don't start to feel dizzy when something like that happens, but this time I did. I couldn't see because my eyelids were really heavy and I couldn't open my eyes, but it felt like the room was spinning.
Overall I think it only lasted for about 30-60 seconds. It's the dizziness that has me a little worried that, what if it is a seizure?
Having this all typed out, I'm a little embarrassed to post this cause I just feel so silly about it ever since I was pretty much told "its all in my head" but in medical speak. Has anyone else here experienced something similar or can relate to this?

  1. Hi . Please don't worries about appearing silly stop you from pursuing this. There is nothing silly about your symptoms and you are right push for answers. If you don't advocate for yourself, no one else will. Though the description sounds like cataplexy, we are not medical experts. There are many other neurological conditions that might cause these types of symptoms. Have you seen a neurologist yet? That might be a good next step. Please know we are here for you every step of teh way. Best wishes. - Lori (Team Member)

    Please read our rules before posting.