Question 1

How is hypnic jerking defined?

Accepted Answer

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” or “insomnia”. Due to its absence in the ICD, physicians might even doubt its existence and tell you that you have traditional myoclonus or insomnia. These already existing diagnoses are problematic as they do not highlight the sleep entry issue that makes it so distinct.

Question 2

What causes hypnic jerking?

Accepted Answer

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 injuries, anxiety) and can differ from one individual to another.

Question 3

Is there a cure for hypnic jerking?

Accepted Answer

Some people have gotten better. 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 Diamox have staved off the symptoms, they tend to create other issues such as habituation and dysregulated sleep cycles. You can read in our survey and research projects below that we are exploring other treatments.

Question 4

What is the best thing I can do to help with hypnic jerking?

Accepted Answer

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.

Question 5

Why is there so much conflicting information out there about hypnic jerking?

Accepted Answer

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 (impending death and just a 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.

Question 6

Is there genetic testing I can have done?

Accepted Answer

We are presently researching answers to this question. 
 
1) There is an ongoing genetic study facilitated by the Manton Center that is exploring the answer to this through WES (Whole Exome Sequencing) testing. 
 
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 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 that 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(https://www.genedx.com/about-genedx/contact-us/)
 
4) We have some practitioners also interested in looking at comparing methylation and DNA patterns from tests such as 23andme, Ancenstry.com, etc.

Question 7

How do I talk to my doctor about my hypnic jerking condition?

Accepted Answer

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. It might also help to share this site with an interested doctor.
 
Most doctors have not heard of hypnic jerking. It is common to come across ones 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. In the case of doctors who try to diagnose you with anxiety, partial limb movement disorder or restless leg syndrome, make sure you've read these FAQ's so you can highlight the differences for them (that you don't have an urge to move, move purposely, and only move your legs).
 
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).

Question 8

Which doctors treat hypnic jerking?

Accepted Answer

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 the following practitioners have offered some new insights into the condition and helped get them some relief. 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 >(https://atlasorthogonality.com)
 
Find a Functional MD/Practitioner >(https://www.ifm.org/find-a-practitioner/)
 
Find a Neurological Chiropractor >(https://acnb.org/DoctorLocator.aspx)

Question 9

Why is hypnic jerking a poorly studied condition?

Accepted Answer

There are many reasons hypnic jerking is poorly studied:
1) Many aren’t fully awoken by the 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 but they do not link it with jerking and inform their doctor as such.
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).

What is Hypnic Jerking?

Hypnic jerking (or sleep myoclonus) is a sleep onset condition that is not understood by the medical community. Share these FAQs, patient stories, videos and podcast with medical professionals on your health journey.

What is Hypnic Jerking?