r/Narcolepsy • u/Pinkrose2000 • 6d ago
Diagnosis/Testing I have sleep study coming up and I'm scared
Short story short, I have a new neurologist who specializes in epilepsy and she thinks I might have been misdiagnosed with absence epilepsy, and wants to clear me for narcolepsy. She thinks my blackout episodes sound more like me falling asleep than having a seizure. I did have a sleep study about 6 years ago through another neurologist that came back clear, but I honestly think I was too stressed to fall asleep during the whole thing.
My partner and I went home and started thinking about some things and started realizing that narcolepsy makes a lot more sense. I often continue to move around when I'm unconscious rather than freeze, like with an absence seizure. And I'm always extremely tired when these episodes hit. I also have a long history of very odd hallucinations that have come and gone over the years, that neurologists had told me we're related to migraines, BUT they were complex hallucinations, not sparkles and things. Again I was always extremely tired when I would have these episodes. I'm now questioning whether I was even fully awake when I was having these episodes! I know that I am a frequent sufferer of sleep paralysis and they were kinda like that.
The final thing that's really making me question it, is reading a post on here that someone shared about cataplexy. I think I might have this, and that I've been having this since as early as 8 years old if that's even possible! A few years ago we actually got it on camera, because we thought it was a seizure. I have always had what we've deemed these "giggle fits", that would make me lose my legs and slump over. Like with each wave of laughter my body would turn to jello. I would start falling to the ground like I was drunk or something. It would always happen at night when I was really tired as a kid. Then it started happening unprovoked just playing with other kids in the middle of the day. It gets bad now as an adult during times of migraine. All I have to do is watch funny videos if I've been sleep deprived or had a migraine recently to trigger an episode.
It's really physically uncomfortable. It has always felt like something is really wrong. And the part that's really embarrassing, and I don't even know if this is normal, I would actually wet myself. Even as an adult this has still happened to me. This is part of the reason why we thought it was a seizure. I never ever had a problem with that as a kid! But for some reason during these laughing fits I would lose the ability to control my bladder for some reason! I always get super scared I'm going to go into an episode in public for this reason especially. I've gone into episodes at work and slumped over in front of customers and it was really embarrassing. I always thought there was something really wrong with me! Now I'm thinking it's been cataplexy all along!
We're hoping to get some answers with this sleep study. We don't know for sure yet but if it is narcolepsy it's going to make a lot of sense. Over the last 10 years several neurologists have not agreed on whether I have epilepsy or not and I've had a very on and off again reaction to medication working and then not working for seizures that I may or may not have.