Epilepsy or not?

Diagnosed 18 years ago, I experience all the symptoms associated with Epilepsy, however after a visit to the hospital for 5 day video-telemetry testing 2 years ago, the specialist advised me I may not have epilepsy after all. I still take 1700mg Epilim Chrono daily as I did pre-hospital visit and have received no further correspondence from the Neurophysiological Department.

My symptoms include but are not limited to dizziness, jerks, tiredness, headaches, grande mal seizures, loss of memory, fatigue, stripes in front of eyes, loss of concentration, forgetfulness.

Can anyone shed any light on what this may be please if indeed it's not epilepsy?

Many Thanks,

5 Replies

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  • I have a lot of these problems, but I have been diagnosed with Hughes syndrome, sticky blood,Antiphospholipid syndrome all the same condition, Warfarin has made a lot of theses problems better,

    Look at the Hughes syndrome foundation web site. I also still take, Lamotrigine medication for epilepsy, I often wander if I still need them, but would never stop until, the consultant

    Agreed. Your consultant might not have tested you fit this condition.

    Good luck

  • Thanks very much Daisyd, that's very interesting, I'll look into it.

  • Hi,except for the Grand Mal seizures it sounds similar to fibromyalgia.I have this and I take anti epileptic tablets.These help with pain and the sometimes violent jerks that I get.

  • I experience all the symptoms that you have mentioned above. Although I get treated for epilepsy (Lamictin) because of the irregular seizures I experience, I have been diagnosed with a benign brain tumor, that is not operable (in the middle of the head slightly above the ears & slightly in the right brain . The seizures are characterized by loosing feeling in the left side of my body, including my head (nerves only work downwards in the body) and NO pins and needles are experienced with the loss of feeling. I recommend that you should go for a MRI, should you have similar symptoms. It took 5 years to diagnose me with an "unknown" tumor and the doctors are still not exactly sure if it is a brain tumor. My scans were discussed at international conferences, however nobody seems to know much about my specific tumor.

  • Hi I've had same symptoms as u Hun and they put it down to epilepsy but during tests I had they came back ok but there are some abnormalities,how can that be ok? I also suffer with fibromyalgia where symptoms are a lot similar so you see I'm very confused and don't seem to be getting anywhere,I hope you get sorted Steve nobody should have to suffer like this take care x

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