What if a second EEG comes back normal?

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I was diagnosed with epilepsy 3 years ago even though my EEG came back normal. I was perscribed a number of different anti seizure meds none of which seemed to work until i was put on Keppra. I feel the keppra works well and i only have seizures when they are triggered by colds or lack of sleep. I recently went into status and was taken to resus where they injected me with diazepam and lorazepam which stopped the seizures. I was admitted to a ward and had a further 3 seizures which again they gave me Diazepam for. I later discharged myself and the doctor said i would need to go for a repeat EEG and a follow up with my neurologist. The whole time i was in hospital i felt paranoid like the doctors didn't believe my seizures were real but surely if they thought i was "faking" them they wouldn't have given me drugs?. Im just worried that if this second EEG comes back normal my medication will be taken away and they will be treated as something else but i really feel that they are well controlled on Keppra the doctors just dont understand that i only have seizures when they are triggered by a cold or lack of sleep. Does anyone know what happens if a second EEG comes back normal or why they have requested a second one after 3 years?

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  • Posted

    I'm aghast that any Dr. would think you're faking a seizure, that's diabolical and understanbly a huge concern for you. I collapsed at work having worked 904 days back to back with only 2 hrs off per day. At the time I didn't know it was a seizure. I was blue lighted to A&E but was so afraid of the unknown I didn't undergo any tests and self discharged. The following day I had another 2 seizures thankfully witnessed by a renal nurse. When I was seen by a Neurologist and sent for the usual scans (6 months after my first sezuire) all the scans came back fine. My epilepsy was only diagnosed by the detailed account of what the renal nurse had witnessed. I shudder to think how I would have been diagnosed otherwise because like you all scans were "normal". It isn't an option for you to not have your meds. Please keep on being infatic with your Doctors about your seizures and if need be ask for a second opinion. Dont let the Dr's fob you off. They are every bit real and not paranoid by any stretch of the imagination. I wish you strength and courage and braveness. If I can help in any other way please do shout.

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    • Posted

      Thank you for your comment its made me feel a little better about the situation. Around a year ago i was admitted to hospital after having a seizure and a lot of the doctors were been very rude saying i needed mental help because my sezures weren't real. Since then iv'e had a number of witnessed seizures and they've even had to give me drugs to bring me out of it. Im just worried that if the second EEG comes back normal that they will be treated as non epileptic and im aware that they are able to wean you off epilepsy medication but personally i feel my Keppra is working fine and im woriied what will happen if they do decide to treat it as non epileptic

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    • Posted

      As you have had your seizures witnessed I would ask those who witnessed them to detail their observations. It defies all medical logic that not only have you been boarded Keppra, and it keeps your seizures controlled, you also had anti epileptic meds administered to you in A&E to bring you out of a seizure yet, the Doctors doubt you ! That's just complete madness. Epileptic drugs are big guns, they not happy sunshine tablets and are not prescribed to people who think they see pink unicorns. You have seizures and not pink unicorns. Stay strong and brave and stand your ground firmly. This is your life and it matters. 💜

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    • Posted

      P.S. Many people you do have epilepsy will only have abnormal activity on the EEG if they are having a seizure at the time the test is happening. Have a look at the Epilepsy Society, it is very interesting reading and will bring you a lot of comfort and clarity. 💜

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