Non-Epileptic Seizures or psychogenic non epileptic seizures (PNES)

Posted by DrivenByME @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

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Chris Gautier OR Santosha | @santosha | Aug 5 7:26pm

@thelmathomas76
Your doctor is somehow right, people can have different reactions. As I am a person very sensitive to medications, my doctor at that time when I switched from Vimpat to Medical Cannabis did it very carefully and slowly so as not to increase my seizures as well as not increase the side-effects of Vimpat as medical cannabis potentializes the AEDs (anti-convulsants).
I can also imagine how confused you are with doctors of the same team saying different things. I would check for a second opinion if I were in such a situation.
Wishing you all the best at this Keppra drop-off!
Chris (@santosha)

thelmathomas76 | @thelmathomas76 | Aug 6 4:48pm

In reply to @santosha "@thelmathomas76 Your doctor is somehow right, people can have different reactions. As I am a person..." + (show)

Thank you for your input. It is always good to know what others are having so we dont feel alone. I was on a 3 day

EEG wire up and no seizure then, that was why they said mine was all from anxiety. The only episodes that were tracked were when I was in the hospital with a UTI that as going septic before they figured what was wrong with me.

Leonard | @jakedduck1 | Aug 6 7:34pm

@thelmathomas76
Just because a person has a normal EEG doesn't mean they don't have epilepsy. It's sad how often seizures are diagnosed as Psychogenic because of a normal EEG. Since you have started taking seizure medication's are your seizures under control or do they happen less often than they did?
Doctors are not always right.
Take care,
Jake

Chris Gautier OR Santosha | @santosha | Aug 7 5:35am

What @jakedduck1 has mentioned about EEG is very true, unfortunately. When you are doing this exam, there might be no electrical activity in the brain indicating epilepsy. I have lived with epilepsy without knowing it for over 30 years. I did several EEGs and doctors said they were all normal. According to what an epileptologist once told me, the best diagnosis of epilepsy is done through conversations with the patient, what he or she feels and what the symptoms are during and after the seizure. When in 2018, my seizures started to increase, I also had some doctors saying it was depression and anxiety. But finally, in 2019, I got the correct diagnosis of epilepsy.
All the best to you!
Chris (@santosha)