Hi everyone

Following brain surgery my partner suffered seizures. 2 Tonic clonics then multiple Focal Seizures. He is on 1000mg Keppra and 300mg Epilium twice a day. We are now starting to wean him off Epilium and will do this over the next 6 weeks. My partner hasn't had a seizure since he was in hospital 6 weeks ago but with him coming off Epilium I know he is a potential seizure risk.

My question is, does anyone know if there are any warning signs of a seizure about to happen? Are there any feelings you get before it kicks in?

I'm going back to work in a weeks time and will obviously worry about my partner having a seizure so if we knew of warning signs he might be able to contact me to warn me it's going to happen so I can race home.

Thank you xx

6 Replies

  • One thing that might help is a 'falls detector' linked to a lifeline box on the phone. If the person wearing it suddenly falls (as they would in a seizure) the alarm is raised and the person is called. If no reply from them, they person listed as their emergency number would be called.

  • Hi.

    I was told that most people don't get warning signs ( but maybe some do ??)

    I'm cutting my anti epileptic meds at the mo and for me it's also a bit scary as I live alone.

    So far so good.

    Good luck ☺

  • Unfortunately signs if there are any really depend on the person and the seizure, some folks do get some, be that feeling just plain odd, or a funny taste in their mouth, it's vaguely similar to migraine's in that way.

    Unfortunately Epilepsy isn't fully understood, and various dectectors for folks tend to have a fairly low success rate.

  • My warning was always a noise that in the past had fascinated me being the sound of a tropical bird. Now if I hear it I feel terrible. I think other warnings are smells, and tastes. Either way once the warning comes the seizures will still come. The "falls belt"can be a help and a hindrance, and can only be used near the main unit. It's always better to get controlled by whatever means possible. I take 2 x 500mg of Epilim and 75mg of Lamotrigen twice daily, and although not that amount have been on the meds since 1985. A long time but still seeing a neurologist. Good luck to your partner and you.

  • I have epilepsy that started in 2015 when my brain tumour removed, I only have a seizure once every few months and have been told this is not considered serious. O live on my own at the moment and always call an ambulance when I have one. I currently take 2000MG of Kepra every day. I don't get warning signs, I just drop. Sorry that I can't be of any more help to you.

  • Thanks for all your replies.

    When you have your seizures do you come out of them naturally? Really nervous about my partner having one with me not there.

    I don't think he would be likely to have a Tonic Clonic as hopefully the Keppra will keep that at bay but I'm not a doctor and don't know for sure. All I was told was to time it and if it's longer than 5 minutes then to call for an ambulance but if I'm at work then he's on his own.

    This is all very new to us 🤕


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