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Topic: Epilepsy

9 posts, 0 answered
  1. Blufftuff
    Blufftuff avatar
    145 posts
    10 May 2020

    having suffered epilepsy for over 35 years, I was wondering if there were others who also suffer epilepsy, as would be great to chat, share our stories and encourage one another,

    look forward to chatting.

    2 people found this helpful
  2. Peppermintbach
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    Peppermintbach avatar
    4566 posts
    12 May 2020 in reply to Blufftuff

    Hi Blufftuff,

    I wanted to say that I think it’s really good that you posted about epilepsy, even though I realise it must be difficult to live with...

    While I don’t suffer epilepsy myself, there are other forum members who will be glad for a space to share experiences...

    Kindness and care to you,

    Pepper

  3. Blufftuff
    Blufftuff avatar
    145 posts
    31 May 2020 in reply to Peppermintbach

    Thanks for that

    Yes I know there will be number of people who suffer epilepsy and I know it is great to be able to share and relate to people going through same or similar experience.

    I run

  4. Ardbeg
    Ardbeg avatar
    1 posts
    13 September 2021 in reply to Blufftuff

    Hey mate I have it to going on 25 years, had a lot of trouble this year, I know how isolating and anxiety inducing it is.

    Support services and peers are hard to find, I've been in contact with the Epilepsy Foundation to seek some discounted psychological services and per support groups. They are difficult to find. I hope the Foundation staff gets back to me today with details. If so I'll share what I can.

    Feel free to reach out to me for a chat.

    Best,

    Anthony.

    1 person found this helpful
  5. SR2333
    SR2333 avatar
    14 posts
    13 September 2021

    Hi Blufftuff,

    I don’t know if I count but I am a person with controlled epilepsy, had my first tonic clonic when I was about 31 and my last when I was about 37 so around 5 years ago. Always happy to chat but. :)

    2 people found this helpful
  6. MumTwo85
    MumTwo85 avatar
    1 posts
    22 March 2022 in reply to SR2333

    Hi,

    Not sure if anyone in this thread still sees this. I also am an epilepsy survivor, keen to see if we can chat about how each of you cope with it.

    Love and peace to you all.

  7. geoff
    Life Member
    • Life membership is awarded by beyondblue for providing outstanding peer support to the online community over a period of 3+ years.
    • A member of beyondblue's blueVoices community
    geoff avatar
    16229 posts
    23 March 2022 in reply to MumTwo85

    Hello MumTwo, and a wwarm welcome to the forums.

    I'm so sorry you have to suffer from epilepsy, just as I do with 'grand mal' and it has taken quite a while for the doctors to correct my medication, as I used to fall through windows and glass tables, with people thinking that I was intoxicated, but I wasn't and only having seizures.

    I am interested to know how you obtained this and how you can cope with it.

    Personally, I take much more than the usual dose which is 100mg, while I have 2400mg a day with one medication and another is also much higher and makes me tired.

    I can't mention the names because it's against BB rules, but can I ask you, are you allowed to drive a vehicle.

    Take care.

    Geoff.

  8. romantic_thi3f
    Community Champion
    • Outstanding members who have volunteered their time to support others here on the forums
    • Life membership is awarded by beyondblue for providing outstanding peer support to the online community over a period of 3+ years.
    • A member of beyondblue's blueVoices community
    romantic_thi3f avatar
    3151 posts
    24 March 2022 in reply to MumTwo85

    Hi MumTwo85 and a lovely wave to Geoff :)

    Welcome to the forums and thank you for joining us!

    Yes I have it too. It's absolutely taken its toll on me physically and emotionally. I don't think there's one particular way that I cope, just kept going when I wanted to give up.. I'd love to know how we can support you here.

    rt

    1 person found this helpful
  9. geoff
    Life Member
    • Life membership is awarded by beyondblue for providing outstanding peer support to the online community over a period of 3+ years.
    • A member of beyondblue's blueVoices community
    geoff avatar
    16229 posts
    25 March 2022 in reply to romantic_thi3f

    Hello Dear romantic_thi3f, I am so very sorry you are suffering from this, I don't think I ever knew and hope we can help you with this.

    I'll check later on as I am about to log off.

    My very best.

    Geoff. x

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