Pseudoseizures: When people hear the word they think we are faking

I feel for you , it took years and several broken bones and cuncussions from falls do to emotional/ anxiety/ Pseudo or whatever they want to call them this week . Anyone who has witnessed these seizures from me realize they are far from fake.
I started having them as a child due to a very disfunctional family. In my 20's I was diagnosed with epilepsy.... the medications made me feel wonky and as if my brain were on pause as well as the fact that they didn't help me. I was later diagnosed with a brain tumor ( I didn't have one )
I was diagnosed with leukemia ( they were wrong ) but it left myself and my family wrecked emotionally, due to their quick trigger response and misdiagnosis.
My falls have broken my arm, dislocated my shoulder , broke several teeth from clenching due to they are considered grand maul and numerous pulled tendons, muscles and severe migraines afterwards .
I have seen 18 separate neurologist in the last 45 years and I have yet to succeed in a clear answer as to what is wrong with my brain ? Anxiety and emotions are the closest correlation my husband and I can come up with . I have PTSD and when overly emotional or when my anxiety is at it's max I seize . My hands/ arms begin to flinch unconditionally and I lose consciousness. I can't drive, or watch my grandchildren by myself. We live on a lake and I can't sit on the dock alone as well, for fear of drowning which is understandable. I hate these ####### things no matter what they are called but I refuse to let them own me . If anyone disrespects , ignores or doesn't give you the medical attention you deserve make sure they are held accountable. Having these are hell and no one should decide that you DONT rate medical help . I hope it never happens to you again , if it does raise some hell and take names you deserve compassion just as much as anyone else .

@suhcuddo and @mulligan I certainly feel for your situation. How difficult to have these episodes and not have help nor compassion! I can understand how you must be frustrated. I did find some information about this on the Epilepsy Foundation website, here is the link: http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures. Please feel free to share more details with us as you are comfortable doing so. For example: How long have you been experiencing these episodes? How long does it take you to recover from them? Teresa

Hello ,
Thank you for the information. I can go a year and not have a seizure, as well as I can have 2 in one week? I have woken with severe changes . I have gone from right handed to perfectly left handed . I have woke studdering severely from anywhere to an hour - several weeks. I have also not been able to read yet understand perfectly what is being said to me . The seizure fog last for several hours dissapaiting with time . I also have had seizures where I wake hating a specific food that I loved only a few minutes earlier . My seizures can last anywhere from seconds to 1.5-2 minutes ( they were my worst ones that needed an ambulance and a hospital stay . I hope this helped a little .
Cheers,
🙂

Hello Ladies!!
I too suffered for many years with seizures and a good 6 years with misdiagnosed ones.
I finally got fed up and went to Mayo Clinic and went through their Comprehensive Epilepsy Treatment Center, was admitted to Hyde hospital there where we tried to reproduce my seizures. I am forever blessed to have had that opportunity. I went from taking 4 different drugs at the same time, that never successfully managed my seizures, to just 1 medication and only 1 seizure in the last 10years.

Here is a link to some information. That helped me. http://www.mayoclinic.org/diseases-conditions/epilepsy/diagnosis-treatment/treatment/txc-20117241

Good luck
Dawn

Hi @mulligan, thanks for re-initiating this discussion thread. You'll notice that I changed the title and moved it to the Epilepsy & Seizure group. I'm also tagging @coleleeo and @es6903, past members who talked about pseudo seizures a while back.

@dawn_giacabazi, can you tell us a bit more about having seizures reproduced while in hospital, so they can help determine treatment options? Were they able to reproduce them? Was that scary?

Mulligan, have you ever had that done?

Yes @colleenyoung!

Dr Britton managed my care at the time. I was admitted to the hospital where they discontinued all of my medications. I went through a battery of tests throughout the day and night. After about 7 days I finally started having seizure activity including auras which I would get 2pm everyday!! Once we could identify the triggers and types (I have several kinds; Partial complex, Generalized Tonic-Colonic & Petit Mal seizures) we were able to determine the best medication to use.

Was I scared??? No!!! As most seizure patients know all to well, it is far more scary to not know when to expect one. The fear of having one at an unsafe time or place is far worse than during a hospital controlled setting.

NOTE:
NO ONE SHOULD EVER try to stop their medications at home without medical supervision and their physicians directions.

Thank you
Dawn