New and a bit confused about diagnosis!

Hi,

I was diagnosed on 13th Oct after almost daily seizures since last dec but told I've probably had Epilepsy a few years. I've been told by the neurologist I have Absence seizures, Atonic Seizures, Myoclonic seizures and Tonic Clonic seizures which can sometimes be after a simple partial seizure as an aura but not always. I've been given very little information and told to "google" so I went on NHS etc. My diagnosis letter says I have "Complex partial seizures" but from looking up descriptions the ones I appear to have come under "generalised seizures" so I'm now very confused. Am I mistaken or reading the descriptions wrong?

Help? Thanks

4 Replies

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  • Hi, I have the same seizures as you, and I was always under the impression they were generalised seizures.

    The particular combination of seizures is an epilepsy syndrome known as Juvenile Myoclonic Epilepsy. It often first occurs during puberty and I was 14 when I first had seizures.

    I hope you are able to find medication able to control it for you. I take epilim chrono and was seizure free for 7 years but unfortunately over the last 2 years I've had a few again.

    Amy

  • Thanks for replying. I'm finding all the terms a bit confusing and at the time of diagnosis my mind went blank so I didn't ask the neurologist anything. I'm writing a list for my next appointment though so I'll check if the letter is correct or not.

    I'm on lamotrigine at the moment and still having daily seizures but it's still early days.

    Sorry to hear your seizures have returned. I had my first one when I was 15 but as it co-incided with glandular fever and the person with me panicked and only told the paramedics I'd fainted it was missed. Had a few between then and now but since Dec it's become almost a daily occurrence due to stress

  • I'm sorry to hear that, daily seizures must be awful. At the worst I was only having them every couple of weeks.

    Lamotrigine didn't work for me. This and epilim are good for these kinds of seizures but they try to avoid giving young women epilim because of issues related to pregnancy.

  • Hi. I was diagnosed with epilepsy around 2007/2008 and have been seizure free since I was on anti-epileptic drugs (AEDs). I was diagnosed with tonic-clonic seizures (grand-mal) under the juvenile myoclonic epilepsy syndrome but I just associate my disorder with grand-mal seizures. I had one absence seizure randomly and haven't had one since, but I wanted to let you know the medication that has worked for me in hopes that it could work for you as well. I was one Topamax when I was first diagnosed, but then I was put on Keppra XR and they both worked well for me. I also suffer from an anxiety disorder and vaso-vagal syncope, but I have found ways to deal with these without medication. Not sure what your age is but Keppra XR is a somewhat "safe" anti-seizure med if you accidentally get pregnant, which was why I got switched to it. However, if you still feel the need to research epilepsy, I found that the John-Hopkins website and Epilepsy foundation have "easy to digest" information, but I can totally relate to feeling overwhelmed!! I hope that this was helpful!

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