persephone Posted January 10, 2010 Report Share Posted January 10, 2010 I always forget about these after they happen, because they are rare, but I wonder if anyone knows what this is- whether it's another permutation of POTS or something else?It was morning time, I stood up to getout of bed and I stretched my arms above my head.My vision slowly went sparkly, and I was aware that my legs had started to sort of bend and *jerk* as I was standing. My arms and legs then gave off some massive jerks- not rapid, but like there was a magnet trying to pull them to the floor.I know I needed to lie down, but I couldn't see where to lie myself down- I was worried I would smack myself off the bed frame.Within a few seconds, still with these massive jerks, I had blindly feltmy way past the bed frame and lowered myself to the floor.I didn't lose consciousness. but my eyes were fixed and staring- like I was having some kind of absence. I couldn't think properly.The jerks stopped when I was lying down. I was not conscious of any palpitations. Or of any tachycardia. I just had to lie there for about 3 or 4 minutes while I came back to myself.I don't get these at all often, but when I do, they feel like an electrical storm in my head. I was tested for epilepsy when all this started, in 1994, and again in 2005- I had EEGs which showed nothing.Then again, no one has managed to EEG me when one of these episodes is happening.I just wonder if something was happening to my brain rather than my heart as I didn't feel my blood pressure drop particularly low? also the jerking- very different from my usual these days.It makes me wonder - it wasn't til someone actually managed to get me hooked up to a tilt and I had a full blown blood-pressure dropping episode that they acknowledged my bp flatlined.What if this is somethiing neuro that no one has captured? There is little point in asking a neurologist about this- they will be dismissive when they see my notes and that I've had work up over the years. plus, these attacks do not happen often.I just wonder if anyone else has it, or knows what it is.UNLIKE my regular POTS events, these are not linked to menstrual cycle, or to hypovolaemia, or even to my pulse as far as I can tell. but they are still related to standing up- they never happen lying down. Quote Link to comment Share on other sites More sharing options...
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