Just been diagnosed with brain damage

After many years of being treated for epilepsy it now transpires I have brain damage that is the underlying cause of all the seizures (now called non epileptic) A large part of me wants to brush it aside and ignore it. Sadly its not just myself it affects but the people I love the most and hold dearly to me. I am struggling with trying to communicate with people around me and trying to explain what is happening and at times have no control over emotions or actions. Its often used against me sadly then again im in the wrong when I try to speak up or explain. Due to one of my jobs I have a fairly public profile and my condition if you want to call it that is being noticed and questions asked (not always helpful or nice) Anyway anybody reading this thank you for taking the time to do so. All the best Tom

17 Replies

  • Hi Tom

    Sorry you are having such a hard time. You have come to the right place, we are a friendly bunch and you will receive lots of support and advice. You could ring the headway helpline too - they are great and can give you leaflets etc that maybe you could show to work.

    Did your seizures cause the brain damage? It sounds as if things have gotten worse lately from what you have said too. It would be good to discuss prognosis etc with professionals who could maybe advise re work difficulties.

    Good luck

  • Its the brain damage that causes the seizures , talking to friends and family is a complete nightmare, constantly being shoot down and belittled

  • Lack of understanding is a major issue for most of us on here. Some people just do not understand the effects we are left with, and others don't want to because they are scared.

    This forum is good for that reason, you don't need to explain, people on here do understand as they experience the same/similar difficulties.

  • Im finding that out the hard way, looks like my partner has made up her mind she's had enough even though the brain damage diagnoses is new and iv not had chance to get any help or support. Makes you want to tell every one bugger of then if im that bad

  • Sorry you are having such a hard time.

    Did you sustain the brain damage recently and how long have you and your partner been together?

    Sorry that sounds nosy! I am a bit confused as to why your partner would be thinking of breaking up if you have only just got the diagnosis but haven't actually changed as it sounds like the brain damage is long standing but wrongly diagnosed as epilepsy?

    Sorry probably me missing something here :o The only thing I can suggest is to try to talk to your partner and show him/her leaflets on BI etc.

    I hope it works out for you

  • Hi Tom,

    I have seizures due to a brain tumour and that is called symptomatic epilepsy which is a better and more understandable explanation than non-epileptic seizure for those around you and at a guess would be , if not the correct term, certainly an acceptable term for your issues.

    Do you take your partner with you to the consultations?

    I've always taken my wife with me to mine (although not the first two) because she couldn't come to grips with what was happening to me both physically and emotionally (I'm all over the place, snap for no proper reason, burst into tears speach and concentration issues, etc. etc..) and her presence has helped in many ways. Her input to the consultant about the way I behave and what happens during seizures was invaluble to the consultants and because she was there the info directly from the consultant helped her to be more understanding about my conditions.

    I recently underwent a neuro psyc assesment (still waiting results) and the first hour of the three and half hour session was spent with my wife present and the psycologist explained to my wife how common theses changes in personality are with brain injury no matter how aquired and gave both of us coping strategies that have already helped greatly with our relationship.

    Sorry a bit long winded but thought that it may help both you and your partner.

    Hoping things soon improve or stabalise for you and that your relationship will also improve.

    Take care and kindest regards


  • Dear Geoff

    Thank you for the reply and taking the time to do so. I have to admit I go to appointment's alone. Properly part of the reason for my fall from grace and being sent to Coventry

  • Hi

    My seizures were also caused by some brain issue but not sure how much of my "personality" was / is affected and how much is just me . But agree with HH that lack of understanding by others is a continued theme. Not sure what the answer is ( if there is one) and others ... further along the line .... may have better advice. Just trying to be kind to myself for the time being and hope that may be enough for now. Good luck ! K

  • Have you any idea when or how the brain damage was caused?

  • From birth and one two many head injury's with sport and other daft activities

  • I think that the term 'Brain Damage' can be perceived as alarming and frightening to some that may not have any understanding of what it entails- some may consider us inept,strange etc when nothing can be further from the truth.We are all just people,with some areas of our functioning not working as well as they should and doing our best to compensate where we can.You are in good company here Tom x

  • It is the admitting to it and also excepting it. Constantly being told to slow down is fine for other people to say, but in the next breath if you do your lazy !!!! I will properly get a verbal lashing for coming on here and speaking up on a public forum as iv past the link on but maybe if they see how others are on the same sea cruise xx

  • It's almost 11 years since I had my accident.

    My relationship has had many ups and downs. I can't believe sometimes that we have made it thru the last 10 years and still remain together. My fiancé came to all the appointments mainly because I couldn't see well couldn't manage strange places and needed a driver! It's it useful to have a family member with you so that they can explain all the things that were said to you, I used to get stuck on one thing and would have no idea what else was discussed.

    I took forever to come to terms with what I had lost, what had changed forever, what was new and what I was still able to move forward doing.

    I am lucky in that I managed to get back my licence and I am able to work part time in a completely new field. It took time and I am never without reminders of my accident and it's effects, but I'm getting quite used to the new me now.

    Someone asked my daughter if she could change anything in her life so far what would she change? Nothing was the answer, they were shocked and asked if not even my accident, no was the answer. I had changed a lot, but I was at home with them a lot. We learned to cook together, we spent quality time doing mum daughter stuff. We have been through dark times and come out the other side. She has learnt to never give up, keep trying and always to live your life with no regrets.

    I think that is a life lesson I could never have given her and one I wished many times had not happened, it's nice to see her put a positive side to it.

  • Truly inspiring words xx thank you

  • Reading all the above comments and peoples own personal story's has been quite inspiring to say the least. The most important thing iv understood from you all is don't cut yourself off. Tom x

  • Sorry to read things aren't going well for you at the moment but I'm confident people who read this forum will understand exactly where you are coming from.

    My son who had a SAH 3 years ago says exactly the same as you that he is always in the wrong. It must be so difficult when people don't understand. I must admit that although I've always been supportive I haven't always understood. I'm gradually getting there now but it is a learning curve.

    What really helped us was seeing the neuropsychologist, I found out that even the smallest difference in someone is significant and my son understood more about where his difficulties lie.

    Afterwards my son and i had a long chat and I listened to him properly and carefully when he spoke about the things he struggles with. Since then, although we still misunderstand each other at times, I feel we've moved forwards. As has been said so many times is very difficult when people look the same to understand some things are different.

    I think it would be really helpful for your family and friends to look at the Headway website, your partner to go to appointments with you, ask questions.

    Most importantly ask them to listen to how you feel, your struggles, your difficulties, what life is like for you. Choose a time when you have enough time for a proper conversation.

    It's made such a difference to us, just by listening. It's not all perfect by anymeans but we do understand more now.

    I've learnt so much from this forum, I can identify similarities, frustrations, emotions, difficulties.

    So good to share which I have done when I've felt down.

    A BI of any sort doesn't just affect the person who has suffered it, it affects friends and family too.

    Hope your partner, friends and family listen to you and you tell it like it is.

    Good luck

  • Hi tom

    I also suffer from seizures and I'm due to have another EEG to rule out epileptiform origin as I had one negative EEG but I'm still suffering regular seizures and loss of conciousness/syncope my neuro suspects they are of dissassociative origin in that they are like yours (a result of trauma)

    Take care


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