Non Epileptic Attack Disorder and PIP review

Hey guys, I have non-epileptic attack disorder and I'm currently undergoing 12 sessions of CBT that will last until January 2024.

I have a PIP award review due and my award ends March 2024. I'm really struggling to articulate responses for the PIP descriptors because my seizures take different forms.

My last award they took episodes of LOC into consideration, the frequency of my seizures was once a month but they didn't score me for any supervision descriptors and that may have been down to frequency or perhaps I didn't articulate what harm could come etc.

I have read this website because NEAD can resemble epilepsy
www.epilepsy.org.uk/living/benefits/pers...ent-pip-and-epilepsy

But again, I'm still struggling to think of what descriptors. I have other symptoms alongside the NEAD attacks, so panic disorder, agoraphobia, depression, PTSD etc. And I know those will probably score prompting on the award but I'm unsure how to articulate.

Any tips, advice?

hi, NEAD here too. I follow this guidance from your link.

"For people with uncontrolled epilepsy, there is always the risk of having a seizure. The level of harm you could come to depends on the activity, the type of seizures you have and how unpredictable they are. The key thing to remember is that you may still need help due of the risk of having a seizure, even if you only have them occasionally."

As NEAD is related to stress and similar triggers, the risk of having them is constant in my experience. You are constantly having to manage this condition appropiately or they will increase in severity. So although you may not have seizures regularly, you have to avoid triggers all the time and manage your stress levels all the time.
I emphasise the importance of stress management and the steps I take to reduce triggering areas, and if I can do this safely reliabily repeatedly, just as much as the seizures themselves.
So how NEAD impacts your life and functional ability goes beyond the seziures themselves, but in managing the triggers and risks of having a seizure and the self awareness needed to prevent them and how effective those are.
Dont forget to think about recovery time from them too, and any related dissociative symptoms you might experience too

Any other advice? Do you have an award too? It can be difficult to describe what happens during them etc.

But journeys are difficult.

i do have an award, partly based on seizures. I compare the difference between epilepsy and non epilepsy, especially in relation to treatment as there can be expectation of drugs being involved.
I rely heavily on the safety aspect of PIP.
I tell them how and if i have any warnings.
I tell them what I should get and what i should have rathe than what i do.
I have in the past recorded my seizures.
I also tell them that i have a lack of insight as to what happens during a seizure or if a seizure has occoured without appropiate supervision, but these are my tell tale signs (things like confusion, dizzness, loss of time)
I tell them that the diagnosis is controversial, has little information on it from reliable sources and scant treatment pathways and understanding in the medical field. I explain this as I say that there are many different ways to describe them such as psuedo seizure, dissociative seizure, NEAD, FND seizure etc. and differing opinions about them. This adds to my problems.
I tell them why i dont present at a n e with every seizure, what recommended recovery is and how it is best to do that in a safe familar environment.
I think thats most things. To be very clear this is NOT advice, this is me talking about my own experiences to give you a different perspective. Please do your own research and find out from places like mind who have an article on dissociative disorders, and by searching for the terms I mentioned. good luck

Hi, must_not_tell_lies

I have a few questions regarding your insightful post, really helpful btw.

When you say you have recorded your seizures, do you mean you have video evidence or do you mean in the form of writing them into a diary afterwards?

I have done quite a bit of research on them and have come to the conclusion that I experience a lot of symptoms, side problems because of NEAD too but never thought to include how the stigma causes problems and scant treatment pathways but thank you for that.