My Little Black Book

So close, but so far..

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So I keep this little black book as my “possible” seizure diary. I do not normally keep one for my tonic-clonic seizures since they happen infrequently compared to when I was first diagnosed. I say possible seizures because they do not know yet if they are actual seizures. I have these myoclonic jerks almost daily that increase in frequency before my typical tonic-clonic seizures – so people around me tell me. To me, they happen daily so I do not notice them increasing and when I do i chalk it up to something else going on in my life. I, for the first time, went three days without a jerk. I was so excited. Then my brain decided to remind me it was part of my body and whoops, I only made it two days – which for me is still an improvement. Since the Keppra they decreased in frequency, so “go Keppra, go!” So did I lose anyone yet?


What is a Myoclonic Seizure?

Myoclonic seizures are brief jerks of movement, almost like a shock, that involve a muscle or group of muscles. They do not typically last longer than 1-2 seconds and can happen as a single episode or multiple episodes. People without epilepsy can actually experience these with hiccups or a sudden jerk before nodding off. In epilepsy, they can cause abnormal movements in both sides of the body; usually in the neck, arms, and shoulders. The person is conscious and aware of what is going on. These usually begin in childhood, but again can occur at any age. These seizures are often overlooked because they are tossed up as tics, tremors, or as the person being clumsy.

In my experience, now I am not officially diagnosed, these “tics” come randomly. I have had them before my tonic-clonic seizures and before my diagnosis. I am aware and conscious when they occur. I only have had single episodes at a time, but sometimes more than one episode a day. My head, neck, arms, and sometimes upper body/chest is effected and jerks. My head will turn to the side, my arms will sometimes contract in or move upwards, and my upper body will shake. I can feel my body get tense when it occurs and I cannot stop the “tic.”

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Can you have two different types?

Yes! As unfortunate as it may sound, it is perfectly possible. Some people will have seizures that change with age and puberty and others can have multiple types. Now, I did not start having tonic-clonic seizures until after a car accident where my head suffered a laceration needing staples. It is plausible I may have had a seizure disorder before that and perhaps the car accident changed or brought on new seizures. While nothing is definite yet, I have a gut feeling the neurologist is going to lean that way, especially with the frequency and that it happened before I suffered any head trauma. I am not the happiest person ever when I got the news but it could be worse, right?


      Do you have myoclonic seizures or more than one type of seizure in your diagnosis? Comment below and tell me about your story!

6 comments

  1. Jessika says:

    Its like you read my mind! You seem to know a lot about this,
    like you wrote the book in it or something. I think that
    you can do with a few pics to drive the message home a little bit, but other than that, this is great blog.
    A great read. I will definitely be back.

    • Samantha says:

      Thank you so much! Will try to add more visual content, as I am still fairly new to blogging still. So glad you enjoyed my post! Look forward to seeing you again soon

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