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.
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.