Dear Fuq Up Fairy, find someone else to bother, please?

About two weeks ago, I woke up with what I thought was just a bad cramp/charley horse, from my right foot, straight up to my right hand. The pain was intense. My foot arced and the toes curled, and my fingers dug into the palm of my hands.  As I was ‘stuck’ in one position by closely snuggling cats, I thought it was just because I was in one position for too long. 

Then, 5 days later,  it happened twice. Once when I got out of bed, and the second time when I was walking out to the car.

Two days later, Monday, it happened 4 times.  I called GP, and was informed I would be told to go to the ED/ER, so I called a cab.  Had another ‘cramp’ before the cab arrived, and another when the cab dropped me off at the hospital. The ED doctor got to witness one of the ‘episodes’, and I was admitted to the Neuroscience wing of the hospital for a possible seizure disorder.

Four days, lots of blood tests, (geeze, people how many times do I and the tests have to tell you that I am NOT diabetic!) a CAT scan, an MRI, and having the daytime floor staff seeing a ‘seizure’,  I was hooked up to an EEG and a seizure was recorded and videoed.

The goodish news: Dr B, the neurologist, told me I don’t have any tumors, lesions, clots. Nor do I have any signs of Parkinsons, Alzheimer’s, or other degenerative brain disease. EEG didn’t record any epilepsy or other seizure disorder.

What I do have i ‘idiopathic hemidystonia’.  Something, for whatever reason, is causing these seizures-not-seizures. It’s my brains’ way of handling.. something. They are painful, and outright frightening. That feeling of loss of control is terrifying.  But I remain alert, aware, and even during them, if given a phrase or question, I can answer it or repeat it back.

There is also this wonderful (sarcasm there) kenetic component. In other words, certain body movements can bring one on. (Example, after reflex testing in both the ED and my hospital room, getting up and sitting back down would cause one) I’ve been having a few every day since being discharged from the hospital.

As awful as these are, they aren’t life threatening, so I was allowed to go home. I made an appointment to see my GP, to see what the next step should be.


About Sandra

Passenger on a blue marble, circling yellow star. Dancer, astronomer, technogeek, coffee lover, pagan, photographer.. not necessarily in this order.
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