FND was in denial but now needing help and no healthcare professionals seem to have heard of it.

[Lara555]

Hi Everyone

I was diagnosed with FND( by dr Jon Stone in Edinburgh- Fantastic doctor) in the year 2012 after a 10 year battle to get the diagnosis, but I was struggling to get any of my local GP's or health care providers to recognise it as an actual diagnosis.

Fast forward to 2017 I had just had my little boy and I started getting NEAD's mainly this was focused in my right arm, this could be trigged by almost anything and I could easily have up to 40 attacks a day, so I went to A&E after an 11 hr wait with a miserable baby I was told to return the next day, to which they said "its nothing we can deal with here we will send you to the neurologist", waited 12 weeks and went to the neurologist who had yet again not heard of FND, went out the room and came back saying "yeah sounds like your arm and attacks are probably just that".

I know they say getting the diagnosis is the first part of getting "better/ coming to terms with it" but truth be told because nobody had "heard of it" I actually find the diagnosis not much help at all. Although the symptoms are all very real and very visible, even my family think I'm having them on most of the time and the more stressed and upset I get about it the worse the symptoms get.

Problem is my story isn't rare. So I came here after trawling many a site, to hear and understand and get a better understanding from people who understand me and don't think I'm a lunatic who loves having everyone on with these grand uncontrollable arm movements or in some cases paralysis

[Norma1956]

Hi I have just been diagnosed with neads my whole body shakes and then just lie there still cannot open my eyes I went down in asda yesterday and somebody is with me most of the time I am still trying to get my head round it and want to talk to other people about their experiences

[Muppet76 in reply to Norma1956]

Hi hun I’ve been diagnosed with NEAD for nearly two years now, happy to talk to you about it; I’m out and about today but if you leave me a message I will pick it up later😊😊😊

[Lara555 in reply to Norma1956]

my seizures are different in public to at home, i know this sounds mad but this is how it tends to be with me I have absent seizures where its like my whole body is on pause. I have panic and anxiety attacks.

At home it can be triggered by heat from the bath that tends to make me have a full body NEAD, if I get panicked, loud noise, unexpected caller to the house, stressed or agitated then its either the spasms in my arm or whole body attack.

When I am at work it tends to be if I'm asked to take mins in meetings (then it is my arm and I am unable to write or it looks like a toddler has written it.) or have been at the computer for long periods of time, (this is a pain because I'm a CMD and Developer so my job is computers.)

Each person is different and handles it differently one girl I know has attacks everyday and has an ambulance out to the house everyday and then theres someone else who had panic buttons all over her house just in case she's alone with the kids and has an attack and needs to get help.

when its my whole body I know when I come round I am going to be physically and emotionally exhausted and I just need to sleep the day off, when its my arm I can have up to 40 attacks a day its frustrating limiting and exhausting but I don't need to sleep so much with them, (if i did id be permanently asleep.)

[Muppet76]

Hi lovely it’s so frustrating when you are given a diagnosis that is poorly understood and not widely known, even though we make up about 30per cent of neurology outpatients!!!Fisrt of all support, Im going to recommend a Facebook group called FND hope, also their website as they do information sheets that you can share with family and friends as well as medical professionals, might help a bit😊As you were originally diagnosed by Dr Stone from what I know he’s one of the best, can you get reffered back to him? On a day to day basis it’s about symptom management, that’s where your GP can be your best friend. I think the best way to look at things is to start your own holistic care plan, anything you think might help is worth trying, then push to get what you need. With NEAD seizures the thinking is the ‘stress’ switch in your brain is broken; your body doesn’t understand what ‘stress’ is anymore; it cold be any strong emotion, a cold, feeling hot, tired...the list goes on and on. If you start a seizure diary it can help you work out what those ‘triggers’ might be (there are free apps you can use). It’s also suggested that mindfulness and meditation can help, and distraction techniques. Lol, hope this long post is a bit of help, you definately aren’t alone, sometimes it just takes a bit of time to find the right help and support 😊😊😊

[Norma1956 in reply to Muppet76]

Is FND the same as neads do neads have a support group I don't feel if I can go anywhere on my own I worry in case I go down but I have vacant moments too I am having a bad week this week I have had about 20 seizures up to now

[Muppet76 in reply to Norma1956]

NEAD comes under functional symptoms, but not everyone with FND has NEAD!! Confusing I know..there is a seperate group for NEAD look up FND action non epileptic attack disorder, the FND hope site also has some good information and can offer support as a lot of members do expierience non epileptic seizures😊The website my neurologist recommended was neurosymptoms.org, I think Dr stone actually wrote it, the information is really good and it helped me make some kind of sense of things 😊😊

[Norma1956 in reply to Muppet76]

It is really weird you don't know when you are going to go down again how do u copewhen u are out and about and have an attack