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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone Diagnosed With JME In Adulthood?

A MyEpilepsyTeam Member asked a question πŸ’­
Canada, KY

Hey everyone new here
Just a little background. I was diagnosed with Juvenile Myoclonic Epilepsy in 2017 and I am 30 years old. As many of you know you can also have Tonic Clonic and Absence seizures under this umbrella, so to speak. I have suffered status twice from tonic Clonic seizures due to flashing lights. Just wondering if anyone has been diagnosed later in life. I also have a Chiari malformation which is a herniation of my spine into the fornum magnum ( back of the skull) of… read more

May 30, 2019
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A MyEpilepsyTeam Member

Have you seen a neurologist regarding this? I personally haven't heard of this as a myoclonus. Maybe occular myclonus subset of some type. Have you been diagnosed. Big hugs and best wishes .

May 31, 2019
A MyEpilepsyTeam Member

I was just diagnosed 4 months or so ago with focal aware seizures tho I had them for 20 years and just thought I was crazy!!

May 30, 2019
A MyEpilepsyTeam Member

Well let us know what happens. Best of luck.

June 3, 2019
A MyEpilepsyTeam Member

I've seen several haha. I didn't know the word myoclonic until my discharge letter had written 'myoclonic when observed inward round'. I would be more inclined to go with simple partial seizures myself as I don't lose consciousness. I'm also not sure if myoclonic comes with auras as I do experience them sometimes. They thought I had non-epileptic attacks for the past year and a half, it wasn't until they witnessed them first hand, my eyes not being reactive to light during a seizure also changed their mind and said they do not fit with this. I basically have no idea what happens and why. Perhaps they refer to myoclonic as the action as opposed to the seizure type, my eyes do contract, they do come in clusters usually and I can seem to just get on with whatever I was doing after. I see the epilepsy neuro for the first time this Wednesday, will see what happens then I guess. :-)

June 3, 2019 (edited)
A MyEpilepsyTeam Member

I'm 31 and have suspected myoclonic seizures. They impact my eyes mostly, they will contract and blink rapid and my vision will blur excessively, sometimes I throw my head back too. I've had two episodes in the last ten years perhaps, not that I would have known to think a seizure back then. Only in the last year and a half have they become daily.

May 31, 2019

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