I have experienced the sleep myoclonus (body, jerking or twitching) onset, and again two years later on this head pressure journey.
I will jerk and twitch as I go to sleep. But then it wakes me up all night. I have extreme head pressure all night long.
Does anyone else experience this?
What can be done?
Some members have mentioned hypnic jerking which is worsened with instability:
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And there have been mentions of non-epileptic seizures, not sure if this is at all helpful or related though…I’m sorry that you’re experiencing this again 
Thanks Jules. I was hoping that others that experienced this would chime in. What is causing it and what can I do about it? This group has been a wealth of information! We can help each other when sometimes the doctors cannot!
Right away my mind went to dystonia. It may not be what you’re experiencing, but a few EDS friends who suffer with dystonia also suffer jerking/twitching which can progress to out-of-hand thrashing quickly. @Jules idea sounds logical as well. Attached is a bit of info on the dystonia idea for what it’s worth. Not sounding any alarms by suggesting it as an option. Maybe it can even help you out-role dystonia. That head pressure thing is No Joke, especially when it feels like it’s near explosion point… Hope you can figure it out.
This is unrelated to the myoclonus/dystonia problem, @Luckee7, but are you sleeping w/ head/shoulders elevation at night to help reduce your headaches? If not, you should go back to having your head elevated when you sleep. You may need to experiment with how much elevation you need to be helpful.
I’m sorry for the body twitching keeping you awake. I get that once in a while. Just as in your case, it will happen as I’m falling asleep or soon after I’ve gone to sleep & wakes me up. It usually only happens once in a night for me though. I can imagine how awful it would be repetitively in one night.
Thanks for that info @GeorgiaKay , I don’t know much about dystonia & always forget how related it can be…
I have also experienced the same.
At the same time I feel like I hear this “woosh” sound from my head as it happens.
I don’t have that extreme head pressure all night though, but it is very noticable when I go to bed at night.
@Rehri Sorry if we’ve suggested it before, but if you’re not sleeping propped up, this might help?
I have just learned that this actually helps. I never understood it before, but it really does help.
It has been a journey in of itself to understand my symptoms, as they are so expansive and confusing.
Ive had this before (many years) but not very often. It’s a strange feeling and I thought related to stage of sleep you were falling into or out of. Not sure what meds if any you are on. I recall one (med) my daughter took actually caused restless legs. Gabapentin might knock it down if its happening too much along with head position.
Hi Snapple,
Thanks for your response. I’m not on any meds… just ibuprofen. Yes, when I’ve taken anything that “slows” me down, I’ll get restless leg too. It doesn’t happen every night. Thank God!
