NEAD (Non Eplileptic Attack Disorder)

Brain and nerves
1

They think my partner has NEAD, though he is still taking a high dosage of anti fitting medication each day. I have found it very hard to get help with this condition. The NEAD Trust are not helpful and I have sent three e-mails to them asking for help and advice, ALL have been ignored!

We have just got back from a DLA Tribunal which had to be ajourned pending further medical evidence. I am trying my best to get some but no-one seems to really want to help! It seems to be one of those conditions that manifests itself in different ways, though the fits are a common symptom to all sufferers. He also gets very tired, has involuntary muscle spasms and can be forgetful. He is trying to take steps to build his confidence and self esteem but it is a long hard slog. Many people don't really understand NEAD, it isn't just common depression and anxiety, it's much more serious and extreem. The condition affects more women than men, bit like anorexia. Many sufferers have no single cause and report several traumatic experiences throughout their lives eg rape, breavement, bullying and divorce can all contribute to the onset of NEAD. It doesn't help that Epilepsy in general is a hard condition to diagnose and it's possible for someone to have NEAD and also have organice Epilepsy at the same time.

2

[quote:2c2201db8d=\"kernowbarry \"]They think my partner has NEAD, though he is still taking a high dosage of anti fitting medication each day. I have found it very hard to get help with this condition. The NEAD Trust are not helpful and I have sent three e-mails to them asking for help and advice, ALL have been ignored!

We have just got back from a DLA Tribunal which had to be ajourned pending further medical evidence. I am trying my best to get some but no-one seems to really want to help! It seems to be one of those conditions that manifests itself in different ways, though the fits are a common symptom to all sufferers. He also gets very tired, has involuntary muscle spasms and can be forgetful. He is trying to take steps to build his confidence and self esteem but it is a long hard slog. Many people don't really understand NEAD, it isn't just common depression and anxiety, it's much more serious and extreem. The condition affects more women than men, bit like anorexia. Many sufferers have no single cause and report several traumatic experiences throughout their lives eg rape, breavement, bullying and divorce can all contribute to the onset of NEAD. It doesn't help that Epilepsy in general is a hard condition to diagnose and it's possible for someone to have NEAD and also have organice Epilepsy at the same time.

Hi,

My name is David Porter, both myself and Michelle Reed run NEAD Trust, I am truly shocked at what you say about NEAD Trust as we make every effort to reply to every email.

Please email me directly at **** with referance to Daivd Porter Patient UK and i will reply personally to your mail.

We never delete emails so if i can have your email address or full name i can search for your mail and try to find out what happened.

We have hundreds of members on our secure forum all of whom either suffer with NEAD or are family / carers for a NEAD suffer.

We do want to help every NEAD sufferer but with over 37,000 sufferers in England and Wales alone some are going to be missed, for this we both personally and as NEAD Trust are very sorry and will / do make every effort to stop this from happening.

our email again is ****

David Porter

Chairperson

NEADTrust

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3

1/10 for the rating of this post!?!

Truly shocking that some people are rating those who are attempting to help themselves and others, particularly when the subject is so sensitive.

Personally, I found the NEAD Trust warm, friendly, polite, busy and very motivated given Michelle and David's circumstances. (My thoughts are with them and there family, they are inspirational). Although, there approach does not work for \"me\".

As I have mentioned in previous posts I feel that everyone that has received this diagnosis and experienced first hand the postcode lottery of shockingly shoddy care (ie none or psychologically/verbally abusive) needs to find their own answers and solutions. That involves studying all the facts, looking at all the options, exploring all possibilities and opportunities and knowing when to listen and when to stop listening.

This also involves accepting your circumstances. What they truly are for you, not what you are told they are. Understanding your limitations and the limitations of others around you. Knowing what does and doesn't work for you. Goal setting with small steps. And regaining confidence in your ability to trust yourself, your feelings and beliefs and pay respect to who you are in all circumstances.

Talking is helpful, but thinking is vital to ensure that you and your family adapt positively to a different way of life. Your circumstances seem impossible and everyone who has written on this board will relate to those feelings of confusion and helplessness. If you can recognise that they are just feelings then you can let them go, this will allow you to approach your circumstances as a set of problems that have very real, tangible solutions.

Best wishes to you and your family.

4

i myself understand what you are going through . i have just been told i have non epelptic attacks . i had to go through all the tests and tablets the doctors could give me . i how found it really harad to find help and surpport like yourself. i have no srpport from any family members. i find it really hard to explain what the fits are and feel that no one belives me. at the moment i am having to speak to someone once a week about my fits and also doing relexation. i am still on meaication which my doctor is sooon going to reduce. please let me know how you cope with your fits and i wish you all the best . princess pink.