Neurological conditions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

New diagnosis - advice wanted please.

Ria_porter16Ria_porter16 Member Posts: 2 Listener
Hello, in the last few days I have been diagnosed with absent epilepsy, I am still coming to terms with my new condition and trying to get used to my medication. My best friend has asked me, if I am with her and we’re near a road when I have an episode is she allowed to move me if she thinks I am unsafe? I understand that with some medical conditions there are certain things you can or cannot do, therefore I wanted to see what everyone says. Is it down to my discretion or are there specific things my family and friends can or cannot do if I have an episode? 

Replies

  • janer1967janer1967 Member Posts: 9,337 Disability Gamechanger
    Hi and welcome to the community, sorry to hear about your diagnosis. I dont know if you are in the right place for this sort of advice it is probably best answered by a medical professional rather than on an internet forum

    We do have other members with epilepsy who may be able to help or have a look on the NHS website or you may find somehting on the following link

    Epilepsy – Epilepsy Action Website: https://www.epilepsy.org.uk/ Helpline: 0800 800 5050 Email: [email protected]  
  • Tori_ScopeTori_Scope Posts: 4,127

    Scope community team

    Hello and welcome to the community @Ria_porter16 :) Thanks for reaching out to us today.

    I can imagine that being given this diagnosis and getting used to the medication could be quite overwhelming so please feel free to vent or ask for advice here on the community any time you need, or just pop on for a natter if you want to be distracted from everything for a while.

    It's great that your best friend is asking these questions, and cares so much about your safety. I agree that it'd probably be best to speak to your doctor about this, as they'll be best placed to give you individual advice. 

    I did find this free course on what to do if someone is having a seizure (including absence seizures) on the Epilepsy Action website though, so perhaps you could send that to your friend? 

    As Jane said, it could be worth getting in touch with Epilepsy Action too, as they might have some resources for you.
    Online Community Coordinator, she/her

    Want to give us feedback? Complete our feedback form now.
  • Cher_ScopeCher_Scope Posts: 3,422

    Scope community team

    Hiya @Ria_porter16 and welcome to our online community.  It's great to meet you.

    How are you today?  Are you managing your medication okay?

    I've found this 'It's more than just seizures': National Epilepsy Week post that might help you.  I also believe @woodbine has epilepsy and could offer you some words of wisdom :)

    I hope the initial shock is beginning to wear off.  I know it can feel like both a blessing to have an answer for mysterious symptoms, and a curse to get a seemingly 'scary' diagnosis.  The good news is you can access the right treatment now and your health-care team will be on hand to support you.

    All the best and please let us know how you get on.
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.
  • woodbinewoodbine Community Co-Production Group Posts: 3,821 Disability Gamechanger
    edited November 2020
    Hi @Ria_porter16, when you say "absent epilepsy" do you mean you have absences? I do suffer from epilepsy and have both tonic clonic and absence seizures. Epilepsy Action is a great source of help and info. The general rule is that people should ensure you are safe if it's safe for them to do so. It also depends to some degree how long the "episodes" last, my absences last between 30-90 seconds my "full blown" seizures as I call them have lasted from as little as 3 minutes up to 6 hours.
    The medication can take some getting used to and there many of them, your neurologist will work with you on that one.
    Good luck and its nice to meet you, if you have other questions feel free to ask them here or to send me a message.
    my advice is given freely and is correct to the best of my knowledge.
  • Ross_ScopeRoss_Scope Posts: 3,242

    Scope community team

    Welcome to the community @Ria_porter16, hope you're managing okay :) 
    Online Community Coordinator

    Find out more about, and apply for, the Community Co-production Group.

    Want to tell us about your experience on the community? Talk to our chatbot and let us know.
  • chiariedschiarieds Community Co-Production Group Posts: 8,103 Disability Gamechanger
    Hi @Ria_porter16 - & welcome to the community from me also. I hope you find the above links & advice helpful. :)
Sign in or join us to comment.