That being said, a meal doesn’t always precede it such as the days i don’t eat breakfast and I still get these symptoms and usually lasts the majority of the day and then right around bed time it gets better. The only thing i can correlate it to sometimes is after a meal, but it doesn’t seem to matter what foods I eat or how big the meal is, it always happens especially in the morning. My doctor seems to think this is cataplexy but my understanding is that cataplexy is onset by an overwhelming emotion such as shock or laughter, whereas mine seems to last all day long without an emotion coming before it but seems to line up with my EDS. I don’t think it’s noticeable to other people and I can power through it pretty easily but it also makes me really clumsy and I feel like my motor skills aren’t refined. So here’s the deal… I have this weird symptom where my arms/hands and feet/legs will get really heavy, sometimes a little tingly and I have to put in a lot more effort than I should to make them work. The only thing I don’t think I experience is cataplexy but according to my doctor the jury is still out on that one.
I also get weird hallucinations upon waking up in the morning and some that i can’t even describe. I did an MSLT and entered REM sleep under 2 minutes in 2 of the naps and the doctor asked me if I thought I had fallen asleep and I answered no - which makes me think, am I really in REM sleep while Im conscious sometimes?Īnyway I used to get sleep paralysis when I was younger a lot but that does not seem to happen anymore. I seem to be in limbo for the majority of the day half asleep but fully conscious of my surroundings and the situation I find myself in. However, I never fall asleep like it seems other people do and it’s actually really hard for me to take naps. So first off, yes I have EDS, all day long it’s extremely hard to keep my eyes open no matter what I’m doing even if the activity is extremely stimulating like snowboarding. Without getting into too much detail about my background/medical history, I do have a few symptoms that have puzzled my doctor and I’m wondering if any of you think this is N related or some other neurological disorder. but the good news is that through those diagnoses I was able to already try and fail on a lot of the medications they already prescribe for N (Ritalin, Provigil, Concerta, basically every antidepressant, etc). IE misdiagnosis of depression, anxiety, ADHD, etc. I was recently diagnosed with N back in January and looking back everything makes so much sense in hindsight, I’m not sure how I didn’t catch this earlier as a 28YO but here I am.
Hi everyone - I’ve been following this sub for quite sometime just reading people testimonials and trying to get an understanding of what this disorder is and how I can manage it.
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