Services and Advocacy

How is hypnic jerking defined?

Hypnic refers to inducing sleep. Hypnic jerks are muscle contractions that occur at the brink of sleep, preventing the ability to fall asleep naturally. It’s important to note that this condition has no “formal” name. In the literature, we find that papers highlighting this condition use a variety of terms (sleep myoclonus, hypnic jerking, excessive fragmentary hypnic myoclonus or propriospinal myoclonus). The condition has no representation in the ICD (International Classification of Diseases). This means there is NO formal (codable) diagnosis for physicians for diagnostic and insurance purposes. What might be used in its place is “general myoclonus”, “insomnia” or PLMD (Partial Limb Movement Disorder). These diagnoses are problematic as they do not highlight the sleep entry nor reflect that it is not only the limbs that jerk. Further, most common is restless leg misdiagnosis (a totally different condition). Due to its absence in the ICD, physicians might even doubt the existence of the hypnic jerking condition, recording it as anxiety.
What causes hypnic jerking?

Research on hypnic jerking is in its infancy. Together, our community of sufferers and their practitioners have some theories which include cortisol dysregulation, mast cell response, mineral channelopathy instigation, and structural interference (a spinal issue). There are many stories of folks who first experience hypnic jerking after initiation or cessation of a medication. What we have concluded at this point is that inflammation often contributes towards its exacerbation. Inflammation can occur from a multitude of things (i.e. infection, environmental toxicities, physical injury, anxiety) and can differ from one individual to another.
Is there a cure for hypnic jerking?

Some people have gotten better. In some cases, we remain unsure as to why. While there have been people who have had their jerking dissipate or even disappear, it is common that they have a recurrence or recurrences. While certain medications such as benzodiazepines, anti-epileptics and anti-convulsants such as Diamox and Keppra have staved off the symptoms, they tend to create other issues such as habituation and dysregulated sleep cycles. Recently, people have had success with regard to correcting spinal abnormalities, lowering histamine and body infection / inflammation load. You can read in our survey and research projects below that we are exploring specific treatments.
What is the best thing I can do to help with hypnic jerking?

If you suffer from hypnic jerking, make your voice heard, your experience counted! Please complete our Rare Disease Study. Consider having genetic testing done as well. If you’ve done so, please upload your results onto the Sanford site under your account. Please make sure to share the information provided on this site with doctors, practitioners or anyone who is curious. Furthermore, you can join the hypnic jerk / sleep myoclonus support Facebook page to contribute to the community. Finally, please contact us if there is any novel information you come across, so we can share the information (create a blog post). Together we rally to find answers and get help. If you are an interested practitioner or researcher, please use the contact button to request more information or a consultation on the topic.
Why is there so much conflicting information out there about hypnic jerking?

Most articles and commentaries you will read are unfortunately largely uninformed. This is in large part due to the fact that hypnic jerking is a poorly studied condition. You might read online about people dying from exploding head syndrome. You might also read that hypnic jerks are as innocent as a hiccup. The hypnic jerking experience typically falls somewhere in between (the impending death and the minor irritant). You'll also have many physicians squarely pinning its cause on emotional stress when they cannot find answers. When doing research on a poorly studied condition such as hypnic jerking, you will likely be stressed. Please recognize that stress can be both physiological and mental. Your thought process for sure can add to your body burden, your body burden can add to your emotional stress.
Is there genetic testing I can have done?

We are presently researching answers to this question. 1) There was a genetic study we put together that was facilitated by the Manton Center in Boston. They explored the answer to this through WES (Whole Exome Sequence) testing. Results did not show a common gene, but identified that there were abnormalities that could be indicated in the condition. 2) There are people with hypnic jerks who test positive for lesser known genetic mutations under epilepsy / seizure panel genetic testing. The mutations fall under mineral channelopathies. The medical community is in its infancy in studying these mutations and do not yet know of their clinical relevance. 3) Your physician can request genetic testing. You do not need to be having “seizures” to have an epilepsy genetic panel run. Some people have had them run by labs such as Fulgent or Athena, which require physician prescription. Online searches reveal that there are also some “Do It Yourself” genetic tests available (no prescription required). Here is a short list of some of them. Please note that we have not screened these agencies or tests: Genedx, Invitae, Dantelabs, Sanogenetics 4) We are looking for practitioners interested in looking at comparing methylation and DNA patterns from tests such as 23andme, Ancenstry.com, etc.
How do I talk to my doctor about my hypnic jerking condition?

Hopefully this site will help you to be as prepared as possible for when you have a doctor appointment. It would be a good idea to have a written history (a summary description) of your experience. Most doctors have not heard of hypnic jerking. It is common to come across those who will hear of your atypical experience and dismiss, negate, erroneously diagnose you or send you on your way with no explanation. I encourage you to view it as a welcomed experience if a doctor admits they do not have answers but ask you for more information. If s/he shows interest in listening and in helping, consider sharing this website with them or the following: --An article capturing the muscle movements or EEG readings of hypnic jerking. Excessive Fragmentary Myoclonus: https://www.sleepreviewmag.com/.../excessive-fragmentary.../ --Our 15 minute video hypnic jerking interview with Sanford Research. --Podcast with Tracy and The Man who Cannot Sleep (hypnic jerking stories). --Our current research (Manton Center and Sanford Rare Disease Study).
Which doctors treat hypnic jerking?

It is a common occurrence that people encounter physicians who do not have knowledge of the existence of hypnic jerking or its treatment. Despite this, people in our Facebook community have found that osteopaths, neurological chiropractors, functional or naturopathic doctors or select atlas orthogonal doctors can help shed some light on the issue. These doctors have focused on improving vagus nerve functioning, decreasing overall inflammation, identifying genetic components, or addressing structural issues that might be contributing to the jerking. The following links might prove helpful in finding one of these practitioners: Find an Atlas Orthogonal Doctor > Find a Functional MD/Practitioner > Find a Neurological Chiropractor >
Why is hypnic jerking a poorly studied condition?

There are a multitude of reasons why hypnic jerking is poorly studied: 1) Many aren’t fully awoken by their jerks and don't identify them as the problem. In these cases, it likely affects their ability to get restful sleep and affects their mood during the day so they link it with fatigue. 2) Hypnic jerking sufferers are so exhausted by the time they get in to see a physician, that they struggle to convey the scope of the problem. 3) The effects of hypnic jerking can be experienced along a continuum. A large number of people experience it mildly (one or two jerks prior to sleep). However, if you are on this page seeking answers, your nighttime jerking is likely “excessive and fragmented”, or better stated, “relentless”. This version is not the most prevalent, although our Facebook group membership is climbing exponentially. It appears to be a fast growing problem. 4) No hard evidence of debilitation. Although hypnic jerking sufferers struggle to function normally due to severe sleep deprivation and related systemic issues, they aren’t complaining of pain and do not have visible injury. As a result, physician’s are more likely to relegate their symptoms to something minor. The jerking is a “functional impairment”. This designation highlights that there is no evidence of either medical deterioration or acute harm. If many continue to view it as such, this will not attract researchers. 5) Sometimes when the medical community doesn’t have answers or clarity of cause, they default to designations such as “stress” or “hypochondriacal” (often blaming the patient). 6. There are showing to be many contributors adding to the confusing presentation of the condition. The latest. It is quite possible that any body impedance (disruption of CSF fluid for example) can contribute and perhaps activate a genetic seizure / channel problem.

Tracy Hans is licensed as an LPC (Licensed Professional Counselor) in the state of New Jersey. However, when the health care services she provides falls under an integrative wellness approach, this is covered by the Professional Wellness Association (PWA) License,

Mental health counseling and wellness coaching are separate services. When working under the auspices of the Professional Wellness Alliance license, diagnosis and treatment is not involved. There is no offer to treat or cure any mental or physical disease or injury. PWA licensees do not recommend or prescribe any medications or pharmaceutical drugs or recommend any change in prescription or use of medications or drugs that may have been prescribed or provided for you by a medical physician.

It is important to note too that any services you may receive from a PWA practitioner are completely separate from and not related to (approved by or dependent upon) any federal or state governmental licensing authority or any other healthcare license the practitioner may have.

1:1 Coaching

Request >>

Although there are similarities among people with this condition, it seems everyone has an individual experience. After nights of relentless jerking, it can be very difficult to focus on an individualized plan to restore your health. Coaching can help you harness your strengths and accurately assess your needs. You will be supported in exploring triggers (food, medications, supplements, sleep position, physical exertion, or body pain) in addition to spinal problems or sources of infection contributing to the problem. An important goal is to help you decrease items of inflammation and identify areas of improper blood or CSF fluid flow in your body. This is key to getting relief. Additionally, through coaching, ways to decrease over activation of your nervous system will be explored. Finally, coaching can serve to help you to better communicate your needs and mobilize support from folks around you.

Consulting

Contact >>

Are you a researcher or a doctor?

Do you represent an agency?

Are you interested in a professional consultation or an engaging conference presentation?

We'd love to hear from you and explore how we can work together.

Virtual Support Group

Sign up to join our private emotional support group. The group provides an opportunity to “meet” others struggling with hypnic jerking. Together we create a healthy place to address the socio-emotional aspects related to living with this condition.

Groups are limited to a small size (up to 8 participants at a time) and will be facilitated to preserve the integrity of the experience.

Please note that this is not a medical group - conversation on what alleviates hypnic jerking will be redirected to the Facebook group.

Hypnic Jerking Forum

Our "Think Tank"

Get Involved >>

An upcoming project involves the creation of a professional zoom “Think Tank” in which practitioners will be invited to further explore origins of the hypnic jerking condition. The task set to the group will be to identify patient questions that haven’t been asked, research projects that should be targeted, and other practitioners that should be engaged.

Following this forum, we aim to create our first symposium hosting both patients and practitioners (a “Hypnic Jerking Zoomposium”).

Facebook Community

Join >>

Established in 2017, the Hypnic Jerk / Sleep Myoclonus Facebook Group quickly amassed a large following. We presently have over 1200 members. Newborns, toddlers, and teens are represented by their parents. Our group is growing rapidly in numbers on a daily basis, by people seeking support and guidance.

Anchor-Consulting-2