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DrivenByME
@drivenbyme

Posts: 1
Joined: Nov 09, 2017

Non-Epileptic Seizures or PNES

Posted by @drivenbyme, Nov 9, 2017

In January 2014, after a battery of tests, I was diagnosed with psychogenic non epileptic seizures (PNES.) Information was not as plentiful as the resources are now, yet what I did find offered no real hope of recovery. November 2017 I am 2 years seizure-free. I am hope to all who decide they ARE going to recover from PNES. I’ve made YouTube help guides for those searching (youtube.com/christinemauriello) I hope you find guidance you need, when you need it.
Please feel free to use this forum for anything related to PNES.
God bless

REPLY

My hisband was in a motorcycle accident 2014and he start having seizures he had a bleed on his brain. 2014 they said it was real seizures but after many many test doctors many things they say they are not real seizures. i dont know what to tell ER when i have to take him. he cant work because he is off balance and gets confused easily. So i know as a man father and always worked 2 to 3 jobs at a time. now cant work i know it bothers him. he sees a counselor and a psychologist but he still has them. the doctor at ER 2 Nights agosaid for me not to bring him to er unless he is hurt to just let him have these attacks seizures whatever at the house. sometimes they will go on for 30 min stop and then start back. i am afraid it will hard him doing it so long. the doctors at hospital say they cant do anything i just wish someone could help his reg doctor would like us to go to mayo see if they can help. We are afraid if we go to mayo they are gonna tell us the same and send us home with same as all do here. we live about 5 hours away so i dont know what to do its an awful thing we feel helpless

i feel for anyone and their families dealinh with this because it is so hard

Welcome to Connect, @hosey70
I can imagine how hard this is for your husband and for you. Here a few related discussions you might like to read on Connect:
– Released from the hospital for "episodes". All tests clear. Confused https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/
– Conversion disorder with pseudoseizures (PNES) https://connect.mayoclinic.org/discussion/well-i-hope-i-can-be-of-help-in-2009-i-had/

Hosey, what do you do when your husband is having an episode? How do you help keep him safe?

@colleenyoung

Welcome to Connect, @hosey70
I can imagine how hard this is for your husband and for you. Here a few related discussions you might like to read on Connect:
– Released from the hospital for "episodes". All tests clear. Confused https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/
– Conversion disorder with pseudoseizures (PNES) https://connect.mayoclinic.org/discussion/well-i-hope-i-can-be-of-help-in-2009-i-had/

Hosey, what do you do when your husband is having an episode? How do you help keep him safe?

Jump to this post

i make sure he isnt gonna hit anything or fall then i talk to him his neurologist gave me diazepam to give him to help stop them. but he holds his breath looks like he is being zapped his legs and arm arm stretched out fist are tight and he holds his breath. they look so painful sometimes i can get him to swallow pill between them. his last for 30 to an hour sometimes he has one comes out of it goes right back over and over. i dont want to not get him to er and something more happens

@colleenyoung

Welcome to Connect, @hosey70
I can imagine how hard this is for your husband and for you. Here a few related discussions you might like to read on Connect:
– Released from the hospital for "episodes". All tests clear. Confused https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/
– Conversion disorder with pseudoseizures (PNES) https://connect.mayoclinic.org/discussion/well-i-hope-i-can-be-of-help-in-2009-i-had/

Hosey, what do you do when your husband is having an episode? How do you help keep him safe?

Jump to this post

so his reg doctor said we might need to go to mayo to see what the doctors there think. i am afraid they will just look over the records of all the er visits test and notes from all the many doctors he sees and say the same thing. with no help. he use to be a forman and a firefighter now he is off balance when he walks sometimes and he is confused about normal things he would have no problems with. so he retired and us on disability. i feel the seizures or attacks he has are making these things worse. just feel bad he is going thur this.

You might consider being checked for BPPV. My kiddo was treated for it and it seemed to help her in regaining her physical abilities again.

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