Igor--My Dystonia Monster Part I.

Do you know that moment when you start to drift off to sleep where you are aware of things around you but the sound changes? That minute you start to relax and the world starts to disappear, but you are vaguely aware of things? It always reminded me of the end of a long road trip, when the driver slows down and exit the interstate and that vibration you felt for hours changes suddenly.  When I was younger I learned to love that feeling (both of them, really). But, these days that moment is one of the most anxiety provoking parts of my day. 

Think about a time when you just passed that stage and woke up with a sudden start because you felt like you were falling off a swing (or cliff, whatever floats your boat). I don't wake up with a start, I wake up with muscle spasms and no control over the right side of my body. Sometimes I wake up doing mini sit ups from the muscles in my abdomen contracting on their own. That is how it all started, actually. Now I also awake to my back and neck flexing and I end up choking on my own spit, or having my hand/foot in unnatural positions from spasms. Falling out of bed when it happens is a common occurrence. Getting up off the floor is next to impossible until the episode stops. 

Sometimes it strikes when I'm wide awake working in my office, or lounging around the house. When it happens during times I am awake I get a wave of uneasiness before it hits, but that warning sign can occur just moments before an episode starts. 

What causes it? Well, it was first diagnosed as paroxysmal nocturnal dystonia (a rare movement disorder and/or type of epileptic seizure in the frontal lobe (or basal ganglia) depending on who you talk top) . Then after it started happening during the day paroxysmal dystonia/dyskinesia. The attacks of it I have are long (20-30 minutes in length) and minor symptoms can last a day or two. 

On days like today, where my dystonia has caught me off guard twice during wake time hours, going to sleep is the last thing I want to do. Falling asleep is sure to bring on another episode. Not sleeping enough will cause my dystonia (affectionately name Igor) to act up. So it is a Catch 22. Damned if I do, damned if I don't. 

So what do I do? 

I beg Igor to strike early and quickly when I decide to fall asleep. I listen to a book or TV show as I fall asleep so when he does act up I have something to focus on. I try to relax. And now, I look to Jake for comfort and help.