Not as exhausting as you would think, more irritating. The onset of my issues was never sudden, it was gradual and took me a while to notice what was happening.
Have you ever seen a kid try to sit still during dinner when he knows there are new toys waiting just within his grasp. That tell-tale wiggle and constant readjustment is obnoxious. I have that stupid wiggle a lot. But mostly it’s in my hands and head. Even as I sit here writing this my head is moving around and I have changed from sitting normal, to having my legs up on the chair to one down, one up and all over the place.
The worst part of this is I look crazy in public. I say crazy because I look young, if you saw an older person doing the same things I do along with the most unforgiving problem of my hands shaking every time I try to bring something to my mouth, you wouldn’t think twice about it. But with someone my age, I look like I’m on drugs (not the fun kind), crack head Carrie. The judgement is real. I’m just glad I already hate making eye contact with people in the first place, honestly it’s creepy.
I also look tired constantly thanks to the treatment for this issue. Extended release propranolol along with my usual Klonopin. I am tired in truth, but getting used to it. I plan on finding out more about different treatments because it may only be two weeks on propranolol but I can barely notice a difference and maybe there is a chance at a different diagnosis.
My neck and back hurt, even with regular chiropractic adjustments. I wake up and my legs feel sore like I had just been walking the entire day previously. I still have my involuntary myoclonic movements/jerking/spasms and absence seizures along with all of this. So whether or not I am having a myoclonic episode I am constantly moving around. Constantly.
Another thing, I sleep like the frickin’ dead. My boyfriend admitted to checking to see if I was still breathing almost every morning this week. I usually wake up easily or move around when he tries to get me up. But now I don’t move at all, which is why he checks to see if I’m breathing. So waking up has been more unpleasant than usual, it takes a lot more shaking to get me awake. The only time of day that I am still, unfortunatley, is when I am asleep.
One thought on “What It’s Like to Be Unable to Stop Moving”
I weaned myself off the treatment and would never go back. The side effects of epilepsy meds are worse than the condition. Now I do everything better except…. Sleep. I’m working on that one. I have been reading your posts with interest and think you could do it too, lots of people with epilepsy don’t take meds, they make the seizures worse too.. Discuss it with your boyfriend, it is a long process and you would need his support. Sorry no blogs for a while, I’ve been either putting them on fb, sending them to my doctor or saving them for my book.
Look after yourself and do what you think is best for you. x