Refractory Epilepsy (JME) and other strange symptoms

ashbar

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Greetings All,

New here. Some background: My son was diagnosed with absence seizures when he was about 16. He probably began having them @ age 12 unbeknownst to us. We thought he was just daydreaming as he was always an A student. He was tested after the myoclonic jerks began. Two years later, he began having tonic clonic seizures. He has tried nine medicines and is currently on Lamictal, Onfi and Fycompa was recently added. He is now 24 years old and seizures are not completely controlled. During an MRI, it was also noted that he has a Chiari Malformation.

Over the past year, he has started having new and unusual (to us) "episodes". These episodes typically consist of difficulty walking, double or blurred vision, difficulty swallowing, slurred speech and a few other random things. His body jerks involuntarily (arms, legs) and the episode can last 2-3 hours. His neuro has adjusted meds to see if he was perhaps at toxic levels and perhaps that was causing the problems. That only brought on the tonic clonics fast and furious. So they added the latest drug, Fycompa.

Last month he was admitted to the EMU for 3 days. As luck would have it, he had an episode the day before and none during his stay. All tests confirm he does have epilepsy, but nothing on what could be causing these episodes. Each episode gets worse. He has gone a few weeks/months without having one. Lately they are more frequent. During these episodes he is somewhat alert or aware but can't move during the worst of it. Once the jerking goes away, he is exhausted. After last week's episode, he slept the majority of the next day only waking briefly for meds and bathroom breaks. No eating. The gait and vision problems can last for days after and he is visibly wobbly and a bit confused. At this point he is at least able to move around our apartment on his own.

At our last neuro appointment with a different provider (his neuro was not available) the suggestion that this was a non epileptic seizure was thrown out there. Not so sure about this suggestion as is because there aren't any known daily stresses or childhood traumas or ptsd. Not saying these are not non-epileptic but there are so many other symptoms before during and after that don't quite fit.

Would love to hear input from any and all that have been through something similar.

Thank you.
 

zombelina

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Hi ashbar, I don't have any ideas to help you with your son's experience, but I'm sure someone else will. I am a few years older than your son and have also had seizures since I was a kid. I've had it better than many, but it is not easy.

I'm not sure whether he is having non-epileptic seizures, but I know I struggle with anxiety which is quite common in people with seizures. I like to think that people with non-epileptic seizures might be sort of dealing with a severe anxiety that they are unable to cope with (but I'm not an expert!!). I wonder if he would benefit from seeing a mental health professional regardless of what type of seizures he is having.

When I was a kid, I tried to tell my mom I was struggling with anxiety, but she brushed it off and I continued to suffer for several years. My parents are wonderful and caring, but they were unable to deal with the fact that I was having all these problems.

It sounds like you have handled it much better.

EDIT: I would also like to add - if it does turn out to be PNES, try to find a therapist who specializes in trauma. I don't have non-epileptic seizures ( as far as I know), but I remember reading somewhere that some therapists are not comfortable dealing with trauma.

I also wanted to say - make sure not to make him feel like you "don't believe him." I've experienced a lot of that from others and it's very harmful.

It sounds like you are doing an awesome job.
 
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Livernut

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Hi ashlar
Your situation sounds so familiyer to me. My son also has refractory E and has many seizures. Like that he has periods of 2/3 months of no seizures when a new med is used and then bam it starts again. He was tried on Fycomba a about a year ago but had to come off it because he turned very aggressive on it which is quite out of character. Like your son mine started with absent seizures and over the years they've got worse. We have an episode at least once a month where we use bouccal madazolum to stop them. It's hard but you just pick yourself up and go again. Livernut.

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Sabbo

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Hello. I often had what I'd describe as "weird feelings" since childhood--nobody could understand what they were. Suddenly, when I was 14, I had tonic clonics. I had 1 of those feelings during an EEG, & it was finally recognized as a simple partial. Approximately 17 years ago, I began having complex partials. I'll go for a short time when on a new medication w/o seizures, but then the breakthroughs come back. I average 1-3 simple & complex partials/month. The complex partials are troublesome because I've injured myself severely during them.
 
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