NEAD (Non epileptic attack disorder) — Scope | Disability forum
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NEAD (Non epileptic attack disorder)

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hugablepanda
hugablepanda Community member Posts: 1 Listener
edited November 2019 in Start here and say hello!
Hi there I’ve just started on here by people recommending me to here. 

So let me introduce myself I’m Bethany! I’m 22 and struggle with anxiety and depression but only been diagnosed in February with a condition called NEAD (Non epileptic attack disorder) I used to collapse or blackout quite a lot when I was younger due to them thinking ‘white blood cells’ but with one very big episode later and looking through my past incidents I was diagnosed with NEAD. 

I’ve never really talked to people with the same condition as me and was wondering is anyone out there? To talk to or just get to know about this. 

Thanks! 
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  • emmarenshaw
    emmarenshaw Community member Posts: 710 Pioneering
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    Hello @hugablepanda welcome to the community. I’m sure there are will be some of our members with similar circumstances. The community is a great place, so just let us know if you need any assistance navigating it or have any questions.
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    edited November 2019
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    Hi @hugablepanda - Welcome to the community & thank you for joining, Bethany. I hope perhaps there is someone here with NEAD to talk to, but we are a very friendly & supportive group, & you can talk to others of us here that have different mental & physical problems, as we all try to help each other.
    Not having heard of your disorder, I had a look online to read more. I came across this website about NEAD, which may also be helpful. See: http://www.nonepilepticattackdisorder.org.uk/
    I will ask my friend @thespiceman to please help with your anxiety & depression, as it would be good to keep your stress levels down.
    Something else that may help....
    Re-learn how to breathe like a baby. As you breathe in, let your abdomen gently rise, as you exhale you abdomen goes down again.

    This is diaphragmatic breathing, which is the correct way to breathe, & as adults we often don't do this. See: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf
    This is a good relaxation exercise I used to teach when I worked as a physio.


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  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
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    Hello @hugablepanda   Pleased to meet you.

    Thank for my friend @chiarieds   mentioning me. Sorry to hear what your going through.
    My friend has kindly given some links please have a look.
    I am one of the team of community champions, we advise help members of our community.
    Please could I advise speak to the following organisations. Many mental health charities take clientele with additional disabilities and conditions. Even with a mental health issues.
    Many organisations have a wealth of information, signposting to anything they can help or support you with.
    Often floating support or outreach workers. Some have teams specialising in addiction and serious other mental health issues. Also looking a welfare, benefits.
    Often intervention in assessments, assistance with forms. Add that many offer recovery courses dealing with medication, sleep, communication issues and lots of sessions involving a number of health issues.
    Useful because they can help with coping methods and strategies.
    This is what I use my self now.

    https://www.richmondfellowship.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org. 

    Last one is an advocate charity they represents you if you experiencing problems with medical professionals having issues with NHS care plans or Doctors. Worth the time to look at them, did a lot for myself.
    Please if I can advise be supportive please ask get in touch happy to help. Please enjoy your time with the community. Your nor alone and also please do have a look at our website and forum, any questions please contact me happy answer if I can or a member of our SCOPE team.
    Please take care.
    @thespiceman

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
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  • Ails
    Ails Community member Posts: 2,256 Disability Gamechanger
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    Hi @hugablepanda and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I had never heard of NEAD before either, but hopefully there will be other members who can relate to your circumstances.  However, we are all here to support you so please feel free to chat to us anytime.  I hope you enjoy your time with us anyway and if there is anything else you need help/support with then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • Adrian_Scope
    Adrian_Scope Posts: 10,938 Scope online community team
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    Great to have you with us @hugablepanda. Unfortunately the only person I've come across with NEAD on the community is @Pablohsgshshsh, but you're more than welcome here and I hope you'll stick around and get involved. :smile:
    Community Manager
    Scope
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