My seizures..letting off steam

Starting during my separation and eventual divorce 12 years ago, I didn't know what they were I would "wake up" on the floor and think I'd fainted and basically spend the next 24hrs in bed. It was when I met and moved in with my current partner in 2007 I had a seizure and he asked why I'd never mentioned it in all this time!!!!

I have had a long struggle with my seizures lost 2 jobs and have been bullied out of another 3 now I'm too ill to work not just because of the epilepsy, it was only last year they found out my heart stops when I fit it is known as SUDEP and I had a pacemaker fitted.

Since then my seizures have become more violent and as I never get a warning they can happen anywhere I am frightened to leave the house on top of everything else.

Thanks for reading.

4 Replies

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  • so sorry to hear you are feeling so frightened to leave the house, I've only been having tonic clonic seizures for a year (mine are as a result of having viral encephalitis two years ago) and only work part time as a home help but I really try not to let it stop me doing my usual day to day things, I do now tell everyone that I have epilepsy which I didn't to start with as I felt embarassed about i, I won't go too far from the house so I know I can get home quickly if I were to have a seizure as like you say I need to go to bed aftewards and sleep it off, but I would go mad if I didn't go out, have you got someone that could go out with you on a regualar basis so your not stuck at home isolated. Really hope you can get some help/support. I'm going to my first support group this week as I feel it would be good to meet up with others that are in the same position and hear how they cope, have you tried any support groups?

    bev

  • Hi abra_cadabra

    It sounds like you’re having a difficult time.

    As you are still having seizures, I’d like to check you are seeing an epilepsy specialist? An epilepsy specialist can review your treatment and look at other possible reasons for why your seizures are still happening. They may suggest trying a different epilepsy medicine. If you have tried various types of epilepsy medicines, it may be the specialist could look into other treatment options for you.

    epilepsy.org.uk/info/treatm...

    epilepsy.org.uk/info/treatm...

    If you are not under a specialist, you will need to ask your family doctor to refer you. This would usually be to a neurologist. The ideal would be to someone with a specialist interest in epilepsy, as there are many different neurological conditions, and neurologists tend to specialise in different ones.

    If you wish to attend a support group, we have local groups, including coffee & chat groups in various towns.

    epilepsy.org.uk/near-me?fro...

    If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

    Regards

    Diane

    Epilepsy Action Helpline Team

  • Sorry for delayed response, yes I have epilepsy specialist I saw him last week and my meds have been changed so will see what happens til my next app in 6 months.

    Thank you for your help

  • bevA I totally understand your waryness of going out as I would never do so on my own due to my never getting any clue when my seisures will happen .However I have family who accompany me so I do go out often .Do you have family or friends ?

    Mike

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