Involuntary Movements

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So many years ago I started having trouble with loss of muscle tone in my face.  Kind of like a Bells Palsy.  It would last for 10 mins or so and then resolve.  I thought nothing of it – or maybe I was afraid to think anything of it.  Eventually it progressed to involuntary arm movements and then to one very scary pseudo seizure. I call it pseudo because I was fully conscious so it wasn’t a real seizure.  Back then I saw several doctors – some thought I was making it up – finally I received a diagnosis – Essential Myoclonus.  I was put on medication that seemed to mostly keep it under control and things were ok.   Eventually though I decided I wanted to ween myself off the drugs – at that time I was taking Neurontin (Gabapentin), Klonopin (Clonazepam) and Ativan (Lorazepam).  I was getting married and I knew we wanted children, so in my mind if I could come off of all the medications I should.  And I successfully did – one at a time.  The Neurontin was the easiest.  I ended up joining Benzo Buddies which was an online group to help come off the Klonopin and Ativan as they are both Benzodiazepines.  I was super careful, using the titration taper plan.  Finally I was off everything.  And for the most part I was fine…

Fast forward several years – I had occasional “episodes,” as I called them, but they were few and far between. I did suffer one a few days after having my girls, but that’s a whole ‘nother blog post!  I finally decided that I wanted to know exactly what was wrong with me – mostly because I had to know if there was the chance of it being passed on to my girls.  I went to visit Dr. Kumar, who happens to be a leading expert on movement disorders, and happily is only an hour and a half away.  He brought on an episode.. and magically made it go away.  I was floored.  And then he did it again.  What was this magical cure?  Nothing.  Absolutely nothing.  Suggestion.  Awesome… so I’m crazy.  Great.  That was hard to swallow.  But it turns out I’m not crazy (well medically speaking anyways).  I was diagnosed with Functional Neurological Disorder (previously known as conversion disorder).  The  FND Hope website describes is as such:  Functional Neurological Disorder is due to a problem with the functioning of the nervous system. Functional symptoms are thought to derive from the brain’s inability to send and receive signals properly, as the result of physical and/or psychological precipitating factors.  People can have all sorts of symptoms – many extremely debilitating.  In meeting many people online who have suffered with this, I find that I am one of the lucky ones.  My episodes are few and far between, and the symptoms are very mild in comparison to others.  It is a difficult thing to be diagnosed with.  Many people think you are just making up the symptoms and that you can control them.  I had a doctor early on tell me I was having these problems because I was single!  Needless to say, I did not go back to him.

After my diagnosis I started to see a clinical psychologist to work through possible triggers and how to handle episodes.  Some people have had trauma sometime in their past which has led to the disorder, but I don’t … at least not that I know of.  I find that for me the trigger is usually stress.  For example, for the past few days I’ve had the preliminary feelings I normally get right before an episode.  Of course it has all been self-imposed – I’ve been overly excited about blogging and threw myself into it completely.  Not getting enough sleep, thinking about it non-stop, stressing over what I should focus on, if I should rename my blog, what would be a good name… silly stuff really. But stressful when I let it get to me.  And I’m sure my computer set up is not the best so it’s probably stressful on my body to be sitting on my computer for so many hours. So I’m trying to rein back my excitement and take it easy.  Trying is the key word.  So if I ever go from posting a lot to being less vocal, it’s probably just me trying to remember that I’m not invincible.

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