Cans/can't

Hey everyone, my husband has been diagnosed with epilepsy (type unknown atm) 2wk ago. He keeps being told what he can't do food,work,swim etc but what can he do as it's all new to us. Sorry if a stupid question but everywhere I research says what triggers a seizure and not to do. So what have u all continued/adapted, not had to double think...

Thanks 👍

9 Replies

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  • Becky Lee,

    I can only suggest that you and your husband contact either your husbands neurologist secretary or your husbands GP as you have sadly not given us enough information to us to be able to answer your question. E.g. What type of epilepsy that your husband has got.

    Kind regards

    Richard

  • Thanks you for the tip i will do. Think maybe I was asking everything at once lol...

  • Hi. It sounds like you are at the beginning of diagnosis so it's difficult to advise anything ATM since there are many different types of epilepsy and reasons for it. There are many triggers. Mine is a relatively rare type (photosensitive, cause unknown) but in addition to flickering lights (TV/monitors etc.), stress, infections and lack of sleep can all leave me more vulnerable. I don't adjust my diet although ketogenic works for some. Until the diagnosis is confirmed and the correct medication established (can be a journey in itself) it is difficult to advise anything really. Try not to worry about it and over research it Although epilepsy sounds scary, it's not always the worst case. I hope your husband can get some answers soon so you can start properly adjusting to it. Sorry I can't be of any more help. Best wishes to you both.

  • He is at the beginning of diagnosis. Thanks you it does help that someone else knows where I'm coming from. My husband is now on sick leave till a full diagnosis but has already been told he's not able to continue with his job for health/safety reasons. Which now means he's worried at home with not much else he can do till further tests etc as unsure of which type could be. Have u any idea what I can do for him to help, and so he doesn't feel stuck indoors all day, without increasing seizures? Thanks again.

  • Just try and take advantage of the time off and try not to dwell on things until you have some facts from the Doctor\Neurologist. It might also be worth noting that Epilepsy is covered by the equality act so your employer cant just dismiss you without good reason. This is obviously dependent upon a diagnosis and the severity of the symptoms and the type of job he has. In the mean-time just try and make use of the time off ...we all get precious little of it and do something he enjoys which will help with the stress.

  • As I have already advised you, have you contacted your husbands neurologist secretary and likewise his GP for some more help and advice on his new illness epilepsy.

    Regards

    Richard

  • If you can't drive for medical reasons you can apply for a free bus pass. Maybe you could find a group you could join, such as art, walking or even epilepsy support, or gym membership.

    Good luck

  • This is all new to me too (I'm having to learn to adapt to it and had to change portions of my life based on my triggers) lack of sleep being one of them.

    It took my neurologist a couple of weeks to get the confirmation of my diagnosis everything had to be analysed and stuff then I got a letter with the diagnosis, what treatment was agreed it also included that the cause to mine is unknown.

    Regards

    Carrie x

  • Hi,

    Trying not to simply repeat the replies above - try to take a step back and breathe and know you and your husband are not alone - it is tough at the beginning of the process diagnosing and then working out the best ways to control seizures which may rely in varying degrees on medicine/lifstyle (depending on type).

    I know that after my first diagnosis it took a while to really understand what epilepsy was and made a few "mistakes" and had a few non-scary problems that I can share with you here:

    1. Remember that the diagnosis doesn't change who you are, however, living with epilepsy may change how you do things. This will depend on type/triggers/meds/treatments and it is a journey to discover the best/healthiest lifestyle for you and your husband.

    Initially I was frustrated as we may focus on the things we are no longer able to do (like driving, having irregular timetables etc.). While it is healthy to be sad for those things, I felt better when I changed how I thought about it and experimented with what I could do, where were the limits.

    A good question to ask is - what are different things I can do that I didn't do before? It could be an opportunity to do things that you always wished you would do, but never got around to doing. In the replies above taking classes was mentioned, I got back to reading real books (not off a screen), visited museums/art galleries (early at the weekend while friends were hungover), had film nights at home with friends/family, went for coffees (switched to decaf) instead of going to the pub and when I was brave enough went to the pub but drank juice and made it fit the timetable that was best for me (left earlier than I would have if I would have been drinking).

    2. Talk with your drs if you experience negative effects of medications or are unsure about anything. Try preparing the issues you want to address before you go so that you are clear about worries/issues and the dr can hopefully reassure you/adjust anything needed. In some cases it can take a while to manage the siezures, every brain is different and we all react to the meds in our own ways. I made the mistake of focussing on the side effects of the medication and kept pushing to come off too soon instead of listening to the dr. With hindsight I think I wanted to be "cured" and was still not really accepting the diagnosis, I guess that was also part of the process of accepting it.

    3. We don't need to be ashamed of having epilepsy: don't be afraid to talk about it with friends or to inform work (you are protected by disabilities discrimination laws) as you can feel better that people around you know what is happening in the case of a seizure (ie. not to put a pencil in our mouths if we have tonic-clonic seizures (my boss could never seem to understand that I didn't want them to do that) - or that you are not being rude/disruptive but are having a focal seizure). It can also give your friends/family insight into how you feel and understand limitations that didnt exist before, whilst being confident to deal with an episode. It also took me a long time to really feel comfortable explaining auras as they felt like non-important weird feelings and consistently minimised their effects because I felt silly explaining-get informed (epilepsy society has some good videos to explain things-even recovery position).

    4. Don't beat yourselves up for any bumps in the way. Get informed (not obssessed), it is a journey, but you are in good company :)

    Ok, so sorry to you all in this thread for writing so much.

    Good luck to you and your husband, I wish you both all the best x

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