One wish

“What is one thing you wish people could understand about your epilepsy?”

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One thing I wish people could understand is that the medication can be just as bad as having epilepsy. Antiepileptic Drugs (AEDs) help reduce the probability of a seizure occurring by reducing and alternating the excessive electrical activity (or degree of excitability) of neurons. Note that different AEDs work in different ways and have  different effects on the brain. Some AEDs may affect how neurotransmitters send messages or how fast the connection is. The medication I am on currently, as many of you may know, is levetiracetam/Keppra. The best part about Keppra is that they have NO idea how exactly this medication works on the brain – but it does not behave like a typical AED. All they know is that it forces brain cells to fire more slowly to prevent a seizure from occurring. Keppra is still, in comparison, fairly new and still needs more research.

Since my AED slows the brain down completely, I feel this is why my memory and comprehension is so greatly affected. It takes me a while now to understand things and this becomes extremely frustrating. I have trouble recalling things which can become embarrassing. I also have issues with getting words I want to say from my brain to my mouth – granted I did have two (well, three I suppose) events to the head that were considered traumatic and this could be why – I still feel that Keppra may be more to blame. I also wish people would understand that the brain fog we feel is real and comes along with AEDs and Epilepsy.


What is Brain Fog?

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       Brain Fog is not a medically used term, but does sum up what most of us feel from time to time or on an everyday basis. Symptoms usually include: irritability, low energy or fatigue, trouble concentrating, forgetfulness, memory problems, anxiety, confusion, low motivation, mild depression, and trouble sleeping at night. I can definitely vouch and say I feel this way daily but not everyone will. AEDs effect everyone differently but it is good to research and know what to expect. Is it manageable? Yes, for some people. You just need to give yourself time and make proper accommodations. But if you feel that this is unmanageable, talk to your doctor. There may be an underlying cause or a better solution.


Stop and Think

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       Before you start bantering at someone who is taking longer than normal to speak, write, or do a task. Stop and think. Do you see a medical alert bracelet? Do you know this person personally? Haven you had a conversation with them? They might be someone with epilepsy or they might be someone with an illness or disorder that cause similar symptoms to the ones listed above. Please remember to be patient with people; for we all have our own journeys and battles that go unnoticed.

 


More Information

For more information or information on your specific medication, check out:

Feel free to leave comments on your experiences or about how AEDs effected people you know, love, or care for

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!