My hypnic jerks began suddenly in July 2022, shortly after a traumatic event and a COVID infection earlier that year. Every time I fell asleep, it felt like a defibrillator shocked me awake —a violent full-body jolt followed by an intense adrenaline surge. This repeated for hours each night. Over time, the jerks evolved into falling sensations, body twitching, and repeated sleep-onset adrenaline surges. Alongside them came a cluster of symptoms that felt almost PTSD-like: hea

Our 2-year-old daughter has been having Hypnic jerking since she was 4 weeks old. She’s had 3 EEGs, and seen 5 neurologists, 2 sleep specialists, a movement disorder specialist, and a hematologist. I discovered I was anemic in pregnancy, so we followed up by giving her an iron infusion. We gave 3 doses of iron a day to be sure, and eliminated all dairy from her diet. Still, they persist. No one has answers. It seems no one cares. I can’t get anyone to conduct any genetic test

While preparing to write my story, I reviewed the journal which I have kept for four years, now totaling 100 pages. On August 27, 2018, the jerks hit with no warning. There was such a sense of bewilderment and disbelief about what was happening. The first five doctors I saw could not unravel the mystery as to what caused the jerks or how to stop them. One neurologist declared that in his 35 years of practice, he had never seen anything like this. He was not alone. The doc

My Clonazepam Taper This is a long post about my clonazepam taper. It’s my experience. Yours may differ. None of it is intended as advice. Please consult your doctor before changing medication doses. I’m three years into sleep myoclonus. For more than two of those years, the benzodiazepine Clonazepam allowed me to sleep, with some support from other medications, supplements, and behavior. Without medication, I’d repeatedly awake with a strong jerk in some muscle or muscle gro

My hypnic jerking started in 2018 though at the time I didn’t know that's what it was called. To give a short background of my life-I have never been on any pharmaceutical drugs, haven’t had antibiotics since I was a kid. Delivered all 4 babies naturally, un-medicated, never had any sleeping issues. No health issues. The only thing I have seen doctors for is delivering my babies! I will notate that we moved into a new house in 2014 that I had been having allergies in. We move

My nervous system shoots a jolt of electricity down my spine that convulses my body awake every time I reach the moment of sleep onset,...

Four years ago, I was living the life I dreamed of and worked hard to get. I had earned my master's degree, was married to the love of...

My life dramatically changed on Easter Day, 2015. That was the night I went to bed and never experienced the feeling of “normalcy” again....