← Return to Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?

Discussion
Comment receiving replies
Profile picture for nancycollett50@gmail.com @nbean08

I have had seizures since 2012 after I was rear ended by a drunk driver. I had been just fine before. My first neurologist told me he thought I could have epilepsy and then diagnosed me with PNES. I have been doing great for the last year and then July 31, 2025 at 230am I saw a flash of light and then started to have pretty bad seizures and migraines. They kept coming off and on for 12 hrs then my husband sent me to the ER. They just gave me IV fluids and some Benadryl and Reglan. Then sent me home. This did help a bit but they didn't go away they kept getting worse. I went to the ER again on 8/19 due to really hard bad seizures where my chest was hurting. I told them I had PNES/FND and they put me in a hallway bed and I after they took my BP and got my IV I didn't see anyone for hours. A nurse came by and put the BP cuff on me and I saw it was 169/89 and my sat must have been low because I remember having O2. My husband had to ask when would we see a doctor because my seizures were so bad that he said a nurse had to give me a sternal rub to get me to respond. After 3 hours I finally saw a PA. He gave me IV because my Lactic Acid was high and gave me Ativan. After my seizures got better he sent me home. We have called my neurologist several times with no calls back to ask for guidance and have sent messages through patient portal. I did get my Lamectil increased when I finally got an appointment on the 13th to 150 mg. I was having bad seizures in front of to the PA and she told me to read a book on PNES. I still was having seizures but on the 19th had the worst seizures I have had which was when I went to he ER again (See above) I feel ignored and blown off by my neurologist who also witnessed my seizures on the 13th and would like to have a second opinion from someone who specializes in these type of seizures and to see if I also have FND and want to make sure we are not missing something. Would Mayo be able to help?

Jump to this post


Replies to "I have had seizures since 2012 after I was rear ended by a drunk driver. I..."

I would definitely find a new neurologist. If you go to Epilepsy Foundation of America you should be able to search for one in your state. I went through 3 neurologists before I was referred to a epileptologist. They specialize in epilepsy. I am now 12 years seizure free. I went through numerous medications & nothing worked. I then went through a lot of testing & had left temporal lobe surgery in 2013.

@nbean08
Hi Nancy!
First, welcome to our group at Connect.
I'm so sorry to hear you're going through this experience.
Unfortunately, many of us have already had the experience of feeling dismissed by doctors. Dan (@dannoyes) started a discussion about this that you might find useful:
Have you ever felt ghosted by your doctor?
https://connect.mayoclinic.org/discussion/have-you-ever-felt-ghosted-by-your-doctor/
As I have experienced myself recently and shared here in this discussion, one can have both epilepsy and PNES. There is an excellent and very informative webinar by the Epilepsy Foundation about PNES and epilepsy that I'd like to share with you:
An Overview of Psychogenic Non Epileptic Seizures (PNES) - Epilepsy Foundation


Have you had a Video EEG (EMU monitoring) yet? This is the gold standard for distinguishing between epileptic seizures and PNES.
I'm tagging @dannoyes, who also has both epilepsy and PNES and has been treated at Mayo Clinic.
You deserve proper evaluation and treatment. Please don't give up advocating for yourself.
Chris