New to epilepsy

Hello, I have just joined here. I suffered a brain injury last July in my left temporal area, and had a seizure after due to a bleed. Since then I was seizure free as far as I know until June this year. I suffered a tonic clonic on my own and woke at the bottom of stairs to my flat. I am now fortunate to be covered by Kings where I stayed and they have put me onto Lamotrigine immediately before I am seen next week. I've been told I will be on this for life, so it's been a bit of a shock for me at the moment. I've got so far through my brain injury, and still am, but now I have epilepsy to live with too. I hope that by being on here and hearing other's stories and advice it will help. I hope all are ok and nice to find this. Rosemary

9 Replies

  • Good morning Rosemary,

    After reading your brief resume, I would think that without a doubt that due due to you being unfortunate to receive a brain injury which started your epilepsy, that you will continue to be on one or more different anti epilepsy drugs (AEDs) for life.

    Here's wishing you all the very best to your appointment with your neurologist, next week.

    Take care.


  • Rosemary

    Wait to hear from your neurologist, epilepsy is not the end of the world, I have been on epilepsy medication for over 40 years, there are a wide range of medications, it's just finding the right ones. I found coming to terms with the condition, 'stay cool' , always helps, I have had two seizures since dec. 2013, pressure at a minimum always helps, and am living on my own for 13 years. As the brain injury recovers, your brain and body will come to terms with it, your seizures will probably lessen, wait to see your neurologist, and good luck!

  • Hello Rosemary

    It must have been a shock to learn that you have epilepsy.

    Epilepsy is different for every person, and each person deals with it in their own way. Some people find that they learn to build it in to their life easily, whereas other people need time to accept and adapt. Maybe you could talk to your GP about how your epilepsy makes you feel, and ask how they could support you with it?

    Some people find that learning about epilepsy helps them to move forwards. If, and when you feel ready, you may find it helpful to explore the advice and information pages of our website. These have information on a wide range of topics related to living with epilepsy. One example which you may find particularly useful is our safety information. Our advice and information pages can be found on our website:

    The most common way of treating epilepsy is with epilepsy medicines. Although it can sometimes take a little time to find the right medicine for you, you may find it reassuring to know that with the right treatment seven out of 10 people could become seizure free.

    You may also find it helpful to know that the Epilepsy Action helpline team is available to answer any questions you may have, or if you want to talk:


    Epilepsy Action Advice & Information Team

  • Hello Rosemary

    Its Jules here, i am from the 'Brain' part of the forum on healthunlock.

    I dont have seizures but am told am at higher risk after a head injury.

    You poor thing you sound like life is throwing a few things at you at the moment. It seems to come in waves doesnt it.

    Anyway, hello and hope you are feeling bit better now.

    Kind regards



  • Following an attack in the street, a brain operation, and eleven weeks in hospital the epilepsy started. This was in 1985, and being a fairly strong fireman after doing 6 years in the forces I was really knocked over backwards. I finally got nearly controlled by 2000. However, I have since had a subdural haematoma caused by a seizure. Now over the last 6 or so years I am suffering with heart troubles. It never rains does it? Try not to let it get you down. Dave

  • Thanks very much for your replies, it's nice to meet you. I have an appointment with a neurologist at Kings on Wednesday, which was arranged very fast fortunately. I have been on my medication 4 days so far on just 25mg dosage.

    Hi Jules, I am already on the Headway community which has been very helpful to me after my brain injury. You may find that beneficial yourself after your head injury. I was told my seizure is due the area of brain my injury is. I have encephalomalacia right in the area where epilepsy can begin. I still suffer memory problems and tiredness from this injury. I've been fortunate to have returned to work full time, but I think it had been too much for me as I had got stressed with tiredness from it. Where I thought I was ok I actually wasn't so good. It's too easy to think all is going perfectly at work when in fact it's actually too much. Despite being fortunate to still be seeing a neurology psychologist who kept telling me to use hol to break my weeks up, I never listened and pushed myself. It's typical me now, it takes a very long time for things I'm told to actually sink in. Very much like being told I'll have to be on medication for life, it's not sunk in yet. Maybe once I've seen the neurologist I might actually believe it.

    Hi Adlon you must know alot about epilepsy if you have been on medication for 40 years. Did it take long to find one which suited you can you remember? I am sure given time it's something I will accept and think this is just normal now. There's always a chance I may not have another too. I think part of me now thinks what if they find nothing when they do this EEG. Seems crazy I know but I don't want to be wasting their time. They have rushed this on for me which I'm grateful for. But they are trained medics who know exactly what to look out for, and given the area I have the injury they must know it's likely I have epilepsy. I do wind myself up sometimes over silly things! I must admit now I know all this I have found myself worrying as soon as I feel slightly dizzy or tired, thinking is this another seizure. By doing that I just out myself into panic mode which can also feel like something it's not. I suppose in time this will go away. Since I was given medication my panic has not been so bad, probably because I'm thinking it's ok now I'm taking them. Too early to say....

    I have already been looking at epilepsy websites for information. I have a friend (who I don't see but message regularly), who gets alot of seizures, through an injury in the same area as mine. It's been very helpful talking to her.

    Anyway sorry to go on. Hope everyone has a lovely weekend. Rosemary

  • Thanks Dave just read your reply. Sounds as though you have been through a hell of alot. And with your experience of forces and fire fighter it must have been very difficult for you to go through what you have after. Life really isn't easy sometimes and when you think you're through one part another new part begins.... But we are all stronger than we think I guess. Being on here to hear other's stories really does help, as you then realise you aren't alone :) Rosemary

  • Hi Rosemary. You will go through periods of feeling lost/sad and helpless but im sure that many on here would agree that its all part of whats wrong with you mixed with the medication you are on. These periods won't last forever, even although it feels like it will at the time. Keep your chin up :)


  • Hi Rosemary - I'm sorry this has happened. I remember the shock. If it helps I've been on lamotrigine for 3 years with only little seizures - no TCs - and if there are side effects I don't notice them. Good luck.

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