Benign Myoclonic Epilepsy with Atonic/Drop Seizures

When I first heard the diagnosis Benign Myoclonic Epilepsy with Atonic/Drop Seizures my first thought was well that's a mouthful, my second thought was what in the world does it mean?

It is pretty overwhelming to hear, especially if you’re like I was at the time and don’t know much about epilepsy.

So today I’d like to break down every part of that diagnosis so that if you’ve had a similar one you know what’s going on, unlike me at the time. And it’ll also help with explaining mine and my daughter’s journey so far. 

Note: I’ll mainly be focusing on the myoclonic epilepsy part as it’s the largest part of the diagnosis. Also I am in no way trying to act like a doctor. I just want to explain my daughter's diagnosis as I understand it from what I see with Rach and from what I've learned online.

What is Myoclonic Epilepsy?

The term myoclonic epilepsy refers to a specific type of epilepsy that causes myoclonic seizures. Myoclonic seizures, and therefore a myoclonic type of epilepsy, are fairly common. And in fact, myoclonic seizures are the most common seizure type that people suffering from JME endure. But that’s a story for another day.

So what are Myoclonic Seizures? 

The answer to this question is actually in the meaning of the name, “myo” means muscle, and “clonus” basically means the jerking and twitching of a muscle. So myoclonic seizures are characterized by the sudden jerking of one or more muscles, and they’re usually very short as well, only about a second or two long.

You may have even experienced myoclonus yourself, people without epilepsy have these muscle jerks all the time. But you wouldn’t know it as a seizure, you might know it as the hiccups, or the sudden jerking of one of your legs while you’re falling asleep. These movements don’t normally mean you have epilepsy though, don’t worry.

One common sign that the myoclonus is epilepsy related is that it will occur on both sides of the body at the same time. For instance, both my daughter’s arms tend to extend at the same time when she has a seizure.

Myoclonic seizures are a common seizure type among those that have JME (juvenile myoclonic epilepsy), Lennox-Gastaut Syndrome, and progressive myoclonic epilepsy.

What are Atonic (Drop) Seizures?

Once again, the answer lies in the name. In this instance, “tone” is referring to the tension that muscles typically possess. So “atonic” in this citation means “without tone”. Meaning that the muscles have no tension whatsoever during an atonic seizure.

An atonic seizure looks like a part of the affected person’s body suddenly goes limp, their eyelids might droop, their head might fall forward, they might lose hold of something in their hand, and they might collapse onto the floor if they were standing at the time. This is why atonic seizures are sometimes called drop seizures.

In the case of my daughter, she would often fall forward and hit her head on the table during dinner when her seizures first began. Sometimes she would fall over when she was walking around, but since kids are so clumsy, it could be difficult sometimes to tell if it was a normal childhood fall or a seizure if I wasn’t looking at her when it happened.

Atonic seizures can last quite a bit longer than myoclonic ones, lasting around 15-ish seconds, although they can be shorter. And furthermore, unlike with myoclonic seizures in which people typically stay alert, a person having an atonic seizure may not be fully aware.

To Sum Up Her Diagnosis…

After learning about each individual component, I was able to understand what the doctor meant by the diagnosis he chose.

My daughter was suffering from a type of myoclonic epilepsy, and she often had myoclonic seizures. But he thought that it could be controlled well with medication and there wouldn’t be any issues with her cognitive development, so he listed it as benign.

And additionally, he had decided that she was suffering from atonic seizures as well as her myoclonic ones. Which is why he specified that in the diagnosis as well. But that does bring up a whole different issue which I want to briefly touch on right now, and get deeper into on another day.

Regarding Myoclonic-Atonic Epilepsy

When you research the different types of epilepsy you’ll find that generally speaking, people with myoclonic epilepsy don’t suffer from atonic seizures unless they have myoclonic-atonic epilepsy (also known as Doose Syndrome).

Myoclonic atonic epilepsy is a rare epileptic syndrome that affects children. Kids suffering from this condition might have myoclonic, atonic, or even tonic-clonic, seizures. This type of epilepsy is very rare, and I will be discussing it during another article.

At face value, it might seem like this is what my daughter had. But she was never diagnosed with it. The doctor believed she had exactly what he said, “Benign Myoclonic Epilepsy with Atonic/Drop Seizures”.

I’m not a doctor, but I did trust the one we went to…

And he didn’t believe in textbook diagnosing. He took into account every aspect of my daughter’s specific case in order to form a customized diagnosis that was tailored to fit her. So although myoclonic atonic epilepsy sounds similar to my daughter’s condition, this wasn’t the diagnosis we were given.

Now it’s important to keep in mind that this is not my daughter’s present diagnosis, she’s been re-diagnosed after her seizures reappeared. And we’ll be getting into her new one on a later date.

I hope that this article was clear and you were able to get some valuable information from it. Like I said, sometimes it can be hard to understand exactly what a technical diagnosis actually means, and if I can help one person understand a little easier then I’d like to do that.

The Epilepsy Foundation is a great resource to use if you or a loved one has just been diagnosed. Later on I plan to post a list of links that have been helpful to me as I continue to learn more.

Feel free to share your diagnosis in the comments, or the diagnosis of a loved one. I’d love to discuss it with you.