Epilepsy Society
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2nd seizure - Do I really have epilepsy?

My daughter (aged 19) woke up this week, turned her head and felt her head lock and started shaking, she then does not remember the rest, her boyfriend said she was out for around 1 min, shaking, frothing at mouth, rolled eyes, urinated & bit her tongue.

She is at Uni so I am sure sleep deprevation plays a huge part, however the night before she had no alcholol and a chilled night.

This also happened 5 years ago, where she suddenly woke up as was late for something, and similier happened, we really put this down to the shock of knowing she was going to be late for a ferry.

Becuase of this they are saying very probably epiletic, they did do bloods , and referred her to a nerologist in which we are seeing next week, however saying she cannot drive for a year and must let DVLA know.

I want to go prepared next week, however I really do not want her going on medication for life as only had 2 episodes, or am I being naive, as this is all new to us. I beleive they will do further tests, but really feel for her as they have said no alcohol, no strobe lighting, and as at Uni this is totally devasting for her.

Any advice would be very much appreciated

10 Replies
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Go to a neurologist ASAP! Sorry that this has happened, but it should get reported quick! I don't want to sound negative! Two seizures in five years isn't much, but it could be the bad birth of something bigger if it is not reported and looked at ASAP! Your description of her seizure sounds like something of a typical strong seizure. Get it reported with as much detail as possible. Don't leave any detail out! (But don't put any false details in either!) They want to know everything. Good that she had no alcohol - that leaves one question answered straight away. Get it reported straight away!

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Yes we are seeing a neurologist this wednesday privately as didnt want to wait for the NHS referral from the hospital.

Thank you for your reply

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Hi, just wondered how your daughter’s appointment went. I’m assuming going for tests to get a full picture of the situation?

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Hi, we have seen a neurologist, but he told us nothing really, on Thursday she is having an MRI & EEG then we have a follow up appointment , thank you so much for asking.

The good thing is , my daughter feels absolutely fine.

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Don't just settle for a Day EEG either if episodes happen during the night at all. Everyone was telling me that I was having non epileptic seizures, until they did a 3 day ambulatory EEG, and found out that i had both, non epileptic and epileptic seizures. Best of luck.

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Hi, so I need to ask for a longer duration EEG if the day one shows up nothing, is that what you are saying?, I can certainly ask the consultant, thank you

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Always worth asking. I had several docs say your fine.. But once I got the last one to think out of the box, she was surprised. Never know. Worth asking. Ya know?

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Your daughter MUST avoid stress and rushing about. It's no big thing being on medication. I'm 38 years into treatment and I'm used to it now. I haven't had a seizure for 27 years but can't stop the medication as I don't want to have one. Good luck with everything x

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THank you for everyones replies, just to update you, there were a couple of 1 second spikes in the eeg results which apparently is typical of someone with epilepsy, the neurologist however wants to do a sleep eeg to see if it is a local or general seizure, as this may effet what medication she would be on, but he thinks he would probably end up putting her on a mild to medium dose of Keppra.

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Hi there, was wondering how your daughter is doing and the results of her sleep EEG?

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