A space for people with Psychogenic Non-Epileptic Seizures (PNES) and those who love them to find information, comfort, and support. We are not medical professionals, but patients, caregivers, and advocates affected by PNES. Feel free to submit your story.
Last night I had an intense seizure...Where it lasted for an hour in total. When I stopped I was planning to go to bed but I stopped suddenly and forgot where I was and who I was. I had no memory of my boyfriend or my dog.i was scared of my reflection...Long story short. is it common to have memory loss? From seizures?! 😕
I have PNES, when I was diagnosed with it, they called it conversion disorder. I’ve had it since I was in 8th grade, and they have morphed over time. I used to be still and numb, I’d drop to the floor, usually with warning. But one thing has been the same, I’m always conscious during an episode. I shake and tense now during them which can be very painful. I’ve had doctors tell me that I’ll never fall down stairs, or get a concussion, which turned out false. I have a wide range of other disorders which worsen my condition. I was told at the beginning of having it that I was a unique case, and I felt very alone in that. Finding this blog helps a lot so thank you. I know it can be very frustrating, and very unfair. I hope you know that if you have this you’re not alone.
Hi everyone, I have both the epilepsy and the non-epileptic seizures. My epilepsy seizures are under control by medication but my non-seizures I have been having a lot more difficulty with I thought It was just because I was under a lot of stress from taking college class but now I’m just taking a workout class. My family does not want me to get a service Dog at least until I move out and get my own place, but the thing is I feel like everyone is watching me to make sure I’m doing alright and just a few weeks a go I fell and messed up my face pretty bad including my teeth. I guess what I’m trying to ask or say is that if I wanted to get a Service Dog what type should I get and is it easier to look for a agency that would help train your own dog or go on a waiting list?
I’ve always ‘day dreamed’ and that’s all it was until just over a year ago (aged 16) when I collapsed for the first time. Since then I have gone from having around 9 seizures a day (for several months) to about 2-5, depending on the day. Often I get very confused before and after and I ask whoever I’m with where I am or what just happened and all my friends are very supportive. I’ve had heart tests (cardio echo gram, ECG s, 48hr heart trace etc) and seen a neurologist. I had one EEG during which no seizure was triggered, so obviously nothing showed up. I have had no other neurological tests.
My final diagnosis after 8 months of seizures was non epileptic attack disorder, meaning I have seizures for an unknown cause- which are non epileptic. Some of my triggers include high pitched or repetitive sounds and anxiety, however often they occur for no known reason.
It’s really difficult and some people still don’t think it’s 'real’ because there is 'nothing wrong with me’. Sometimes I doubt myself, and then I remember that no I have an illness, it’s just as real as any others.
I do struggle a lot with anxiety surrounding the seizures as I could have one any time, any where and I could be alone. I’ve never met anyone else with this condition, although I have talked to one person with epilepsy. Finding this account has made me so relieved and feel a lot less alone with this.
Anyone and everyone feel free to send me a message or an ask if you want to chat.
My college is making me see a "Life Coach" to try and help with my "issues". They knew about my NEADs before I started, but now it's become "a real issue" (though I only have a couple a month). They're trying to kick me off the Student Union.
Anonymous
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That sounds really frustrating! Is there a student-led disability group on campus that might be able to provide support? A doctor of yours that could write a letter on your behalf?
How common is mutism after seizures? After I've had an attack sometimes I can't speak for hours or even days. I've had to start learning BSL to tell people how I am, which means if someone calls an ambulance they think I'm deaf and don't talk to me.
It’s pretty common to my knowledge. I haven’t had a seizure in a while, but I do still get the mutism symptom. I have thought about taking an ASL class for the same reason! Anyone else have experiences with this?
Non Epileptic Attack Disorder- also known as Psychogenic Non Epileptic Seizures, dissociative seizures, pseudoseizures, and simply “non epileptic seizures”- is a disorder in which seizures occur without any clear medical cause, such as the abnormal brainwave activity which is found in epileptic seizures.
Like with epileptic seizures, non epileptic seizures have a lot of variety. Some seem identical to epileptic attacks(with the exception of having no unusual brain activity), while others can be wildly different. Common differences include:
Lasting more than two minutes
The patient being conscious during the episode
Attacks only occurring while the patient is awake
and more. Like epileptic seizures, some people can sense an “aura” that indicates they are about to have a seizure. Auras can range from yawning to feeling “off” to just about anything, really. However, not all people with Non Epileptic Attack Disorder(NEAD) have auras, and not having an aura does not mean that it isn’t a really seizure.
NEAD is closely linked to a history of trauma, as 90% of NEAD patients are estimated to have experienced some kind of traumatic event in their past. It also commonly coexists with Post-Traumatic Stress Disorder(PTSD).
Common triggers for an attack involve emotional events such as stress, anxiety, and anger, although non-emotional triggers are also possible*.
It’s very common for NEAD to go diagnosed or incorrectly diagnosed for years(I believe the average is seven years, but don’t quote me on it), so please signal boost this and by spreading awareness, we can cut down on the number incorrectly diagnosed NEAD sufferers.
