Sleep Myoclonus Support

I have suffered from sleep myoclonus for over two years.* I haven’t written much about it (a little here, in the early days) and don’t know if I will write much more. I have many other things to which to devote my limited time and energy.

But, in brief, it’s an exceedingly rare sleep movement disorder with little research and no known cures. It’s extremely disruptive — life, mood, and mind altering. It’s torture.

Because there’s not much known about it, patients are largely left to find their own path with little support. It’s not easy to find doctors who get it. If you’re a sufferer, keep hunting for one. You may need someone to prescribe a variety of meds in rapid succession (including those they are wary of prescribing) as you search for one or several that may help. If you’re like me, you’ll want a wide variety of meds and supplements on hand to adjust to the changing condition and your evolving understanding of what works and when. You’ll need to become your own pharmacist.

There is some patient-to-patient support too, which I’ve finally found, after searching on and off for a year. So, to help others find the resources I have, here they are:

  • A Facebook patient support group (registration required): Hypnic Jerk*/Sleep Myoclonus Support — This is where I’m contributing my experience and getting ideas for help. As of this writing, the group has 1.6k members.
  • A blog about someone who has the condition: The Man Who Cannot Sleep — If you want to understand the experience of the condition, this is where to look. Though his experience is not identical to mine, it’s close enough. He speaks for me. I won’t write my story out here (or not yet). His blog is not easy to navigate. When you land on the page linked to above, scroll to the bottom for the archives. The comments on posts are also very useful for treatment ideas.
  • A website devoted to the condition: HypnicJerking.com* — There are posts from patients that document their experience and, sometimes, what works for them to address the condition. A few other gems are this patient registry, this podcast episode, which is part of the Carnivore for Life podcast, and this page of support resources.

Feel free to contact me if you have this condition.

* Some call it “hypnic jerking” but I think that’s a mistake. That term is too widely used for the benign twitches most people experience when falling asleep and are NOT disruptive. Sleep myoclonus is highly disruptive, and I advocate using that term only.

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