I am not epileptic

[Nikki3.0]

I am new to this but would like to know if it helps. For most of my life I’ve been treated for epilepsy. Recently my seizures became more violent and more frequent. For the second time in my life I was admitted to a long term epilepsy video/EEG HOSPITAL ward. At the end of 6 days I was told by the attending neurologist that I was experiencing psychogenic nonepileptic events. He told me 99% of patients who have these uncontrolled muscle movements have been victims of violent sexual attacks. At any given time 50% of the patients in this particular ward are not epileptic. They are patients just like me. They have suffered trauma, suppressed it and it emerges as a physical problem. Anyone else out there ever heard of this?

[MeBeMary]

Hi Nikki and welcome.

I am sorry for the reasons you are here but glad that you have found us. This is a supportive community with many understanding and kind members. You are not alone. 

Altho, I am not someone who suffers from psychogenic nonepileptic events, it has been brought up by members from time to time...so this is a thing. Tho I can't relate on the diagnosis, I can relate on the suppression of memories. This is a far too common thing among survivors. It is very frustrating, as struggles do find us even if memories evade us.

Feel free to look around the community and interact where you feel comfortable. I wish you the best on this journey of healing.

Mary

 

[Nikki3.0]

Thank you. That bit of validation brings tears to my eyes. 

[Finchy]

Welcome to AS, Nikki. I'm glad you found your way here. Like Mary said, you are not alone. What you've gone through is not uncommon, unfortunately...you'll find others here that can relate. I wish you all the best on your healing journey. ❤️ 

-Finchy

[Nikki3.0]

Thank you, -Finchy. 

[Dawn76]

Welcome to After Silence @Nikki3.0 I'm sorry for the trauma you have experienced that lead you to us here. 

While I don't suffer from psychogenic noneplileptic events, i have some experience with  uncontroled muscle movement caused by trauma.  No where near your level of seizures though. I'm sorry you have been going through that. 

I hope you find After Silence helpful and suportive. This is a wonderful group that is so understanding and kind. 

[Kmkz]

Welcome to AS, Nikki. 

Your description of psychogenic non epileptic events sounds similar to non epileptic attack disorder (NEAD), some people who experience these may have had traumatic experiences but it may not be the case for everyone.

I hope you find the support and understanding you are looking for to help you on your healing journey. 

[missfrier]

Dear nikki

 

I would like to welcome you to After Silence's forums.  We are all here for you and want to support you in any way we can. I know that posting for the first time can be scary.  Please don't worry, though; you will always be given so much support from our lovely community and its members.  You're not alone - we are with you.

 

 

Take care and keep reaching out!! 

 

 

 

 

[Maya20]

Hello Nicki and welcome 

I also had non epileptic seizures due to my trauma and was also mis diagnoSed with epilepsy. I have not had a seizure now for 19 years following a few years of treatment. Your very welcome to inbox me if you would like to chat 

[WannaMoveOn]

On 2/11/2023 at 1:39 AM, Nikki3.0 said:

I am new to this but would like to know if it helps. For most of my life I’ve been treated for epilepsy. Recently my seizures became more violent and more frequent. For the second time in my life I was admitted to a long term epilepsy video/EEG HOSPITAL ward. At the end of 6 days I was told by the attending neurologist that I was experiencing psychogenic nonepileptic events. He told me 99% of patients who have these uncontrolled muscle movements have been victims of violent sexual attacks. At any given time 50% of the patients in this particular ward are not epileptic. They are patients just like me. They have suffered trauma, suppressed it and it emerges as a physical problem. Anyone else out there ever heard of this?

I haven't heard about this specific epilepsy alike seizures, but surely about seizures and other physical symptoms related to this specific trauma. I am sorry this is happening to you. 

I am Wanna by the way, welcome to After Silence!

You made a good decision by coming here, many survivors benefit from having a community. This is a safe spot to connect with fellow survivors, share your experiences and exchange support and advice. You decide how much you'd like to share, no pressure at all! You can talk about trauma related topics as well just plain life.

Wherever you may be at in your healing journey, we'll support you. You are not alone

Please reach out to me or any staff member of choice if you'd need some support, would have questions or need some company. 

Take good care, W ☀️

 

[Maya20]

14 hours ago, WannaMoveOn said:

I haven't heard about this specific epilepsy alike seizures, but surely about seizures and other physical symptoms related to this specific trauma. I am sorry this is happening to you. 

I am Wanna by the way, welcome to After Silence!

You made a good decision by coming here, many survivors benefit from having a community. This is a safe spot to connect with fellow survivors, share your experiences and exchange support and advice. You decide how much you'd like to share, no pressure at all! You can talk about trauma related topics as well just plain life.

Wherever you may be at in your healing journey, we'll support you. You are not alone

Please reach out to me or any staff member of choice if you'd need some support, would have questions or need some company. 

Take good care, W ☀️

 

I had these wanna, for a very long time. They can be a little scary, but they do go with treatment eventually ❤️

[greywitch]

Yes I suffer non epileptic attack disorder it stems from my cptad from childhood abuse its like a computer rebooting its self sadly I can not work due to them being bad. I can have to 30! In one go one after the other in less then an hour. There's no cure nor medication for it as it is NOT organic like epilepsy is. I have had them for 8 yrs now. So your not alone with them.

[rebelliouslyhopeful]

Hi Nikki,

I am also new hear but wanted to comment on your post to say you are not alone. I too suffered non-epileptic seizures after CSA. They are frightening and mine were also misdiagnosed as epilepsy initally. Things have improved with therapy and processing the trauma but your body remembers even when our minds don't and trauma can show itself in lots of ways including seizures like this. Feel free to ask ant questions and I will try and help. Take care.

[Joyelle]

Hello Nikki,

I’m new here and this is one of the first posts I read. I started looking for support groups actually because I had a seizure. They’re terrifying, and I felt so alone, and as if no one in my life could understand me. I was tested for epilepsy and POTS, and they determined that I have conversion disorder. If I get too emotional, relating back to early childhood sexual abuse, I start developing really weird symptoms that have no cause. I’ve only had full blown seizures twice. But I lost feeling in my legs one time, I went mute another, frequently I will throw up or get dizzy. And I’ve had a fainting disorder since I was little. I want to validate that it’s such a struggle going about relationships sometimes….when you not only have to consider, will I get emotional, but will I have a seizure. It’s a lot. Thank you for sharing, you’ve helped me find a space where I can feel understood ❤️‍🩹