It has been recommended that I see a psychotherapist, but I am reluctant due to an incident with a mental health counsellor that accused me of things that I have never done. I was told my marriage is one of convienience, that I abused my children and that I should feel guilty if I wanted to commit suicide (yes I did make a complaint, nothing came of it). I am now resigned to the fact that it is something I have to live with and other than support from other sufferers there is no help available.
I have seen Dr Reuber, but am currently under Dr Grunewald. I was diagnosed with NEAD about 2 years ago after about 3 years of being treated for epilepsy (the EEG was not fun) and the drugs have done nothing. I have been told that it is something in my past that I have hidden away and is causing me these problems. The only issue with that is I have no recollection of any traumatic experiences, my parents have no knowledge of any when I was growing, so where do I turn?
In the UK which is where this charity is based the majority of neurologists refer to this condition as NEAD or NES and diagnose using this name / description.
NEAD Trust is using the language and terminology that the medical profession in the UK use.
I can understand your point of view, however, I would suggest that it would be more appropriate for you take this up with your local member of government or medical practitioner.
Pseudo seizures are not seizures at all. Some seizures are epilepsy, others or non-epileptic seizures are medical.
Pseudo seizures are a mental illness called conversion disorder. People should call it as such, since calling these mental illness "seizures" perpetuates the myth that epilepsy is a mental illness. God knows people with epilepsy have enough stigma already (yes, I have epilepsy with gran mal seizures.
@ReviewCam Pretty harsh on your label of folks with non-ep seizures. Since both are equally troublesome and present as the exact same thing in many ways, those with seizures should not be concerned with being associated with 'mental illness,' like that's a bad thing. They are both 'of the brain' the origin is different. Take about perpetuating a stigma!
Thank you so much. I finally feel legitimized. I have been have PNESs for about five years now. I was correctly diagnosed two years ago after years of trying one epilepsy med to the next. I didn't know anyone else with the condition until watching your and another's videos. I constantly feel ashamed of it even though I know I cannot control the seizures. My life revolves around thoughts of when and if I'll have a seizure, and because of that, every aspect of what I do and love suffers a little
i was so relived when i saw this i have been diagnoses with non epectic seizureas i have been so down with it i though i was going mad and thought i was the only one with it i have up to ten a day i can not go work and have two lovly girls i have to have some one wih me all time as i can not look afer them my self it makes me so sad now i now have some hope that i will get better and not the only one with it.
They are extremely painful,embarrassing,and stressful!!!! Its even more stressful when ignorant people accuse you of faking or trying to get attention!!!!
It has been recommended that I see a psychotherapist, but I am reluctant due to an incident with a mental health counsellor that accused me of things that I have never done. I was told my marriage is one of convienience, that I abused my children and that I should feel guilty if I wanted to commit suicide (yes I did make a complaint, nothing came of it). I am now resigned to the fact that it is something I have to live with and other than support from other sufferers there is no help available.
MasterHonour 6 days ago
I have seen Dr Reuber, but am currently under Dr Grunewald. I was diagnosed with NEAD about 2 years ago after about 3 years of being treated for epilepsy (the EEG was not fun) and the drugs have done nothing. I have been told that it is something in my past that I have hidden away and is causing me these problems. The only issue with that is I have no recollection of any traumatic experiences, my parents have no knowledge of any when I was growing, so where do I turn?
MasterHonour 6 days ago
i have NOwarning at all before a seizure,and many times, do not feel anxious at all!
Daisy64801 1 month ago
Hi ReviewCan,
Thanks for your comment.
In the UK which is where this charity is based the majority of neurologists refer to this condition as NEAD or NES and diagnose using this name / description.
NEAD Trust is using the language and terminology that the medical profession in the UK use.
I can understand your point of view, however, I would suggest that it would be more appropriate for you take this up with your local member of government or medical practitioner.
Take care
FuzionMX 2 months ago
Pseudo seizures are not seizures at all. Some seizures are epilepsy, others or non-epileptic seizures are medical.
Pseudo seizures are a mental illness called conversion disorder. People should call it as such, since calling these mental illness "seizures" perpetuates the myth that epilepsy is a mental illness. God knows people with epilepsy have enough stigma already (yes, I have epilepsy with gran mal seizures.
ReviewCam 2 months ago
@ReviewCam Pretty harsh on your label of folks with non-ep seizures. Since both are equally troublesome and present as the exact same thing in many ways, those with seizures should not be concerned with being associated with 'mental illness,' like that's a bad thing. They are both 'of the brain' the origin is different. Take about perpetuating a stigma!
MAHarmon1 1 week ago
holy krap. that guy they interviewis my doctor for NEAD.
cripstakyle 8 months ago
Thank you so much. I finally feel legitimized. I have been have PNESs for about five years now. I was correctly diagnosed two years ago after years of trying one epilepsy med to the next. I didn't know anyone else with the condition until watching your and another's videos. I constantly feel ashamed of it even though I know I cannot control the seizures. My life revolves around thoughts of when and if I'll have a seizure, and because of that, every aspect of what I do and love suffers a little
ElleJayVee 10 months ago
God bless, my love goes out to all of you with it <3
videocritic4u 10 months ago
you're nuts.
sciencefictologist 10 months ago
@sciencefictologist
insults are the last refuge of the feeble minded
FuzionMX 10 months ago 2
insults are the last refuge of the feeble minded
FuzionMX 10 months ago
This has been flagged as spam show
insults are the last refuge of the feeble minded!
FuzionMX 10 months ago
i was so relived when i saw this i have been diagnoses with non epectic seizureas i have been so down with it i though i was going mad and thought i was the only one with it i have up to ten a day i can not go work and have two lovly girls i have to have some one wih me all time as i can not look afer them my self it makes me so sad now i now have some hope that i will get better and not the only one with it.
melt76er 11 months ago
They are extremely painful,embarrassing,and stressful!!!! Its even more stressful when ignorant people accuse you of faking or trying to get attention!!!!
Daisy72762 1 year ago
i have been diagnosed with Pseudoseizures! PNES...Psychogenic Non-epileptic Seizures and it is pure HELL!!!!!
Daisy72762 1 year ago
@Daisy72762 it is not nice at all, were here if you wanna chat,
TheNEADtrust 1 year ago
I need your help, I got diagnosed with non eplectic seizures please email me!
Princess4Allah 1 year ago
@Princess4Allah Hello, how can i help you, please drop me an email to admin@neadtrust.co.uk and ill do my best to help you. Michelle
TheNEADtrust 1 year ago