Hi,
I have Ehlers Danlos Syndrome Hypermobile type. Ever since an injury to my hip 2 years ago that reeked havoc in my spine I have been having these weird tremors every time my body is switching into sleep mode. It gets worse anytime any of my worst spine points is aggravated, so when my sacrum slips out, when my dislocated xiphoid process is aggravated affecting the connection point in the spine mid back, or if my neck is flared up. If all three are a mess the tremors are much worse. Though they ebb and flow in severity I will write a description of them at their worst. Also note, I am not on any medication and really don't have sleep issues. I go to sleep and sleep pretty well most of the time.
The tremor starts just as I am falling asleep. It "seems" to start mid spine. First I feel like a whoosh in the chest with the sensation of not being able to breathe. Then I get heart burn. Then the whoosh moves up the spine into the nasal cavity, ears, and eyes. I feel pressure in the sinuses, my ears plug, and I feel intense pressure in my eyes. It sometimes feels like something is forcing my eyelids closed (they are closed but that's the sensation). Then the whoosh continues back down the spine, goes into my arms to my hands giving them the sensation of going suddenly weak. Same down to my toes--weakness. Then my spine will get the sensation of shifting side to side like an earthquake or riding on a train. It is all the way in my head. If I try to get up and walk, I feel like I am going side to side --like verigo but side to side, not spinning. This all lasts about 45 seconds. Then it's gone and I go right to sleep. My joke is that my body rocks me to sleep at night. Fine and dandy to joke about things to a certain point but I'm having a lot of neuro issues - nerve sensations,headaches, numbness in limbs etc. I feel like they are related somehow and we are missing something big that is making my life miserable. I know what I suspect some of the neuro issues might be and getting checked for chiari/cranio-cervical instability. But I cannot find anything in literature anywhere about these "earthquakes." Wondering if anyone has experience and knows if they can be related to Chiari or CCI in Ehlers-Danlos Syndrome?