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Every Time I Fell Asleep, My Body Fired an Alarm: Holly’s Story
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
Dec 18, 20253 min read


Research Update, 8/4-8/8 2005
SOVM Sensitivity & Variability The following summarizes the integrated framework linking the three main sensitivity categories observed...
Aug 8, 20252 min read


Sleep-Onset Vasomotor Myoclonus:
Reframing Chronic Hypnic Jerks Through A Neurovascular Lens — Informed by Case Study and Group Trends Disclaimer The attached manuscript has not yet been peer-reviewed. It is intended for early sharing and discussion. For feedback or inquiries, please contact the author at the address below. Posted: [6/23/25], Version: [5.2/final] Review, sharing, and constructive feedback from patients, clinicians, and researchers are encouraged to support the ongoing refinement of thi
May 17, 20251 min read


KB's Story (as told by her mother)
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
Feb 20, 20241 min read


Hope Found Here: Elainne's story
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
Apr 27, 20235 min read


My Taper Journey (Austin)
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
Mar 5, 20233 min read


About CoRDS
Bringing together patients and researchers to accelerate rare disease treatments by building the most robust, cost-free rare disease registry in the world.
Jun 6, 20211 min read


Researcher Access to Study Data
Dear CoRDS Partners, We hope you all are doing well and your new year is off to a great start. As you have noticed, CoRDS has been working on new features for participants, partners, and now researchers. We are excited to announce the launch of our new researcher access portal. This portal will be used for researchers to submit requests for data or to have CoRDS contact participants on their behalf. Researchers will be able to obtain the de-identified data in real time throug
Jun 6, 20211 min read


Update Your CoRDS Information
Have you updated your Sanford CoRDS survey? Please update your survey responses when something changes or otherwise annually. You will...
Jun 6, 20211 min read


Find a Physician
You might find these practitioners helpful along your journey. Find an Atlas Orthogonal doctor https://atlasorthogonality.com Find a functional MD/practitioner: https://www.ifm.org/find-a-practitioner/ Find a neurological chiropractor: https://acnb.org/DoctorLocator.aspx
Jun 6, 20211 min read


Finding Sanity in Community: Jess' Story
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
Mar 19, 20213 min read


Hypnic Jerking and Sleep: What Worked for Me: Chris' Story
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,...
Mar 1, 20212 min read


How Hypnic Jerking Changed My Life: Therese's Story
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...
Mar 1, 20212 min read


My Quest for Drug-Free Sleep: Jessica's Story
My life dramatically changed on Easter Day, 2015. That was the night I went to bed and never experienced the feeling of “normalcy” again....
Mar 1, 20214 min read


New Study: Cells and Chemicals Involved with Sleep Transition.
In the article "Twinkling, star-shaped brain cells may hold the key to why, how we sleep". It's amazing how little we know about sleep. Transitioning to sleep involves cellular calcium signaling. “The findings of this study suggest that we may have been looking in the wrong place for more than 100 years," said senior author and professor of biomedical sciences Marcos Frank. "It provides strong evidence that we should be targeting astrocytes to understand why and how we sleep,
Jan 27, 20211 min read


Suggestions for Relief from Hypnic Jerking
Below are highlights of what has worked with people from our Facebook community threads. It is not meant to be medical advice and should be reviewed by your medical practitioner. We have many similar patterns. However, each case seems to be slightly different. Information below is culled from close to two decades of data gathering. Its biggest influence, however, has been the data from trials involving our Facebook group over the last three years. Most of it can be summarized
Jan 27, 20212 min read
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