I've been having cataplexy (rag doll episodes) episodes for the past 10 years, or so. I'm going to be 30 next month. I asked my doctor about it once many years ago, and we attributed it to lack of oxygen when laughing; I never associated it with muscle loss, but instead light-headedness.
Recently it has been happening A LOT more. I'm happier, laughing more etc. So I made another appointment with my primary physician, and we decided on cataplexy. I mean, it's obvious really, once I read all of the symptoms online and spoke to my doctor. I have my first appointment with a neurologist/sleep specialist Thursday of this week, and I'm hoping to get more answers (and do a sleep study).
I do not randomly fall asleep, however I hit REM cycle immediately, sleep a lot, nap at least once daily, cannot be in a vehicle (or comfy position) without almost immediately falling asleep etc. I will not be surprised if/when the doctor tells me I'm narcoleptic.
Just some random observations & symptoms, to better understand...
collapse with laughter (sometimes I'm barely laughing & I fall down, other times I'm laughing like crazy and nothing happens!)
collapse includes muscle loss in legs, but also in face
my eyes have been fluttering more with episodes, and sometimes my face still feels weird afterwards for a few minutes
very vivid dreams, lucid dreams, sleep paralysis (less frequent), hallucinations before sleep
I hit REM sleep immediately...if I nap for 10 minutes, I dream for 10 minutes
muscle loss in face with orgasm (sometimes - it does appear to depend on the strength of the orgasm. this is embarrassing!!)
I can usually manage to get a hand over my mouth while it's happening to cover the goofy looks that follow
regular episodes include things like: hitting my head on the keyboard (gently - it isn't so abrupt that I can't usually catch myself with a hand/arm) while at the office, laughing while walking and collapsing to hands and knees
I'm QUITE moody when I'm woke, and will often times say very cruel things, though that is not part of my regular, waking personality. I've been known to throw elbows and threaten beatings haha
low blood sugar and lack of sleep seem to trigger it
But my question(s) is, for those of you that have cataplexy...do you notice that lack of sleep and low blood sugar seem to trigger more frequent episodes? Also, I go through stages (months at a time) where I don't remember ANY of my dreams, followed by period (also months) where I remember ALL of them. It appears that when I am remembering my dreams, I am having MORE frequent cataplexy episodes. I don't know if there is any correlation there, but it's just an observation. Also...can having a glass of wine/beer in the evening exasperate anything? I haven't seen an research on this.
My episodes are triggered by laughter mostly, and occasionally orgasm. It's embarrassing. If I'm standing near a table, chair, railing etc. I can grab onto something and kinda lower myself to the floor, but that isn't always the case. Lately it seems that I'm dropping to my hands and knees more frequently. If I'm sitting or lying down, my shoulders, arms, neck and facial muscles are affected. It's happening at least once a day, every day. Whereas, before, it seemed to a 1-2x per month occurrence.
I'm in a new relationship and I think my boyfriend thinks I'm a weirdo. I also think that he's concerned about what this means going forward: will it get worse? will it harm me in any way (separate of me falling and hitting my head as a result of an episode)? will future children have it? I have a son and he doesn't not appear to have it.
A distant cousin on my mom's side has narcolepsy and cataplexy; her father has narcolepsy without cataplexy. We are the only people in our family that have it to my knowledge.
Also...anything you can think of that I should specifically ask of my neurologist at our first meeting? I've been keeping a log of my eating habits, sleep habits and frequency of occurrences, so I'm hoping that will be a useful tool. Anything else?
Thank you!! I look forward - with mixed emotions - to being a part of this community & getting to know you all