a woman having a PLMD attack in bed and scaring her husband awake

Extreme Periodic Limb Movement Disorder

Restless legs syndrome (RLS) is often associated with loss of sleep and other symptoms and disorders. Every time I think my list of disorders is complete, my body develops something else.1

Periodic limb movement disorder (PLMD) is my favorite. Seriously. The way I found out I have PLMD is nothing less than comical.

It was a night like any other.  My husband and I slept soundly until some time after 1 AM.  And then the strangest thing happened.

A rude awakening during the night

My entire body violently convulsed, almost slamming my face into my knees as I involuntarily shrieked like a Hollywood vampire being staked. All my muscles remained rigid and locked for several seconds.

It was a little unnerving.  My poor husband. He was rudely jerked from a sound sleep to see me twisted and howling.

But wait, it gets better.

The convulsions happened over and over

We calmed down from my 5 minutes of fame as a dying vampire and settled in to go back to sleep. All was quiet for 2-ish minutes and then I did it again. And again approximately every 2 minutes or so for 2 hours.  What started out as frightening became comical.

After 2 hours of what was basically exercise, I got up, made a sandwich, watched a movie.  Best sandwich ever; I was starving.  And finally, I went back to bed.

I hadn’t been in bed for 5 minutes when I started convulsing and shrieking again. This went on for another hour and a half. By that time it was morning so I had breakfast.

An electroencephalogram diagnostic test

Obviously, I was the first patient on the phone to the neurologist that morning. My neurologist was not surprised by what I described.  However, he did seem a little skeptical about my description of the severity.

The first diagnostic test I had was an electroencephalogram (EEG). Completely painless and actually relaxing.  It took place in a very comfy recliner with a warm blanket.  There were electrodes stuck to my head and I had to follow instructions about when and how to look at certain lights, where to move my eyes, and a few other behaviors. The EEG showed nothing.  It was simply a first-line diagnostic protocol to rule out seizures, stroke, and other brain-oriented disorders.

Going for a sleep study

The next diagnostic test was a sleep study. Until that time I had no idea that I moved in my sleep. My husband says they were small movements. Twitching. Head bobbing.

The test took place in a room decorated like a bedroom. The tech explained the procedure, attached the numerous electrodes in, under, and around my PJs.  There were countless wires protruding which attached to a machine at the side of the bed. The tech left the room but could see and talk to me via video link.

As I left the next morning I asked the tech if he recognized the symptoms I exhibited.  He was serious when he said, “I’ve never seen anything like what you have.” I must’ve looked less than happy because he followed it up with, “but don’t worry the doctor is very good, she’ll know what it is.”

Sleep study results and treatment

According to the sleep study, I move an average of 72 times an hour. In addition, the study indicated I have severe PLMD. The fact that my husband gets any sleep is a miracle. Like the commercials say, those memory foam beds must really stop the movement from traveling.

The treatment regime I follow is simple – Clonazepam at bedtime.

In the beginning, the medication diminished my symptoms enough for me to get to sleep. I would still convulse several times as I fell asleep but once I was asleep I was fine. If I woke up in the night, I might or might not be able to get back to sleep.

As time has passed, the convulsions and shrieks I make have progressively lessened. Now I usually only twitch as I fall asleep and I seldom shriek. I do move more when I nap during the day, but even those have decreased.

Why is periodic limb movement my favorite disorder?

Of all the disorders and diseases I have developed, this one is my favorite. My family and I have laughed and laughed about the contortions and sounds I make. They don’t hurt, so why not have some fun with it?

My family thinks the sound I make is how pterodactyls would have sounded. I have to agree.  Hence, when we speak of my PLMD we call it pterodactyling. Anyone who goes camping with me gets briefed on pterodactyling so they are prepared should they be awakened by prehistoric shrieking.

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