Epilepsy : hi advise needed, I was... - Epilepsy Research UK

Epilepsy Research UK
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hi advise needed, I was diagnosed with focal onset seizures with secondary generalised epilepsy 4 weeks ago, I was put on levetiracetam 500mg a day for the first week then 1000mg a day after the first week, my problem is I have had constant head aches, tiredness, sickness, memory loss and generally not my self since starting them.

10 Replies

Levetiracetam has been known to cause these horrible headaches that you speak of in other paper.

My best advice to you is you is go and see your GP and ask them to contact your neurologist and advise them of how this drug affects you.

I wish you well.


Thank you for your reply, I spoke to my doctor last week she has wrote to my neurologist just waiting for an appointment as just had a eeg and Mri scan

Hello again,

I am so pleased to read that you are awaiting a MRI and a EEG. This is the only way that your neurologist will get to grips with your epilepsy and change your anti epilepsy drug/s AEDs.

I will say a prayer for you.

Kind regards


Thank you hopefully results of mri (I had on Monday) and eeg (I had on Friday) are back soon


You're not alone with those side affects. Levetiracetam had dreadful affects on me so I had to stop. I would definitely speak to your neurologist as there are lots of medications available.

Good luck

Ellist92 in reply to Gemgemsxx

Thank you I did think about just stopping as, as silly as some people may think I would much rather deal with the seizures than the side effects of the medication its that bad but I have two young children so just have to try and get by with the side effects

Gemgemsxx in reply to Ellist92

Do you have a neurologist? I researched mine and got her secretary's details and got through that way so much quicker than waiting for referalls

I wouldn't stop as you may need to wean off the medication as its so strong. I tried 5 different ones toget where I am now and it took about 8 months so it my jut be a case of patience.

Good luck

Ellist92 in reply to Gemgemsxx

Yes I saw him 4 weeks ago For the first time when he put me on the medication since then had a eeg on Friday and Mri yesterday just waiting for appointment/resultsas not heard anything else

Personally I would call the hospital or google who his PA/secretary is and tell them how you are feeling and they'll get him to contact you ASAP. Levetiracetam is dangerous so they won't want you on it if you are ill.

The mri will be back quicker than the eeg......I think I waited about a month for my results.

Just remember your consultant isn't a friend and they're getting paid for this so pester away and ask as many questions as you need. They don't know your struggling.

Ellist92 in reply to Gemgemsxx

Thank you I will get in contact with them in the morning

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