Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?

I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years but my neurologist says that I have non epileptic seizures along with a second neurologist’s opinion which said I have PNES seizures and took me off my seizure medication but my primary care doctor put me back on my seizure medication and it has been helping with my seizures, during my seizure my eyes are open and roll back into my head but my MRI CTSCAN VIDEO EEG LAB WORK comes back normal along with everything coming back normal I have a neurological condition called neurofibromatosis type 1 and MRI of the brain come back normal then in march I had a partial hysterectomy but still having seizures every now and then but my aura is elevated heart rate before the seizure but during the seizure heart rate is normal along with oxygen level but my blood pressure goes up also I have Mitral valve prolapse. I’m just wondering on what to do next cause neurologist wants to take me off the liquid keppra by slowly decreasing.

Dear @meagan
All young life is great; alive! All of us has problems: born, accidents, sickness, shooting, falling down, and on. Some serious; some not.

Your life gives you a place that helps yourself and helping to others. I had a bicycle accident from 2012. I Lise my memory and knowing and under standing and doing. No more driving; no more swimming; no more understanding my doctors, little or no reading or my drugs-meds. Live lost my job, that I loved, the City at Newport News, Va. Thankfully, my wife, Karen, helps me, daily.

I became a Brain-Injury member 2012. Now, I take 3 times a day of for ant- seizure. My doctor took me the last 4 years that ‘stopped” my seivure (sp?).

I pray for you and the rest people within this place for you and your (the word, is not here) ❤️

Thx,
Greg D. @greg1956

PS; I believe Christ inside me; daily this mement!

I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years but my neurologist says that I have non epileptic seizures along with a second neurologist’s opinion which said I have PNES seizures and took me off my seizure medication but my primary care doctor put me back on my seizure medication and it has been helping with my seizures, during my seizure my eyes are open and roll back into my head but my MRI CTSCAN VIDEO EEG LAB WORK comes back normal along with everything coming back normal I have a neurological condition called neurofibromatosis type 1 and MRI of the brain come back normal then in march I had a partial hysterectomy but still having seizures every now and then but my aura is elevated heart rate before the seizure but during the seizure heart rate is normal along with oxygen level but my blood pressure goes up also I have Mitral valve prolapse. I’m just wondering on what to do next cause neurologist wants to take me off the liquid keppra by slowly decreasing.

I've started taking Keppra extended release about 8 weeks ago and it's helping. I do have a question on non-epileptic seizures. I had a seizure in a hospital and my blood pressure skyrocketed to the level where they called in the stroke team. I have no memory of the seizure.

My question is could my blood pressure suddenly increase for some unknown reason and cause the seizure or did the seizure cause my blood pressure to skyrocket. Unfortuntely, my brain activity wasn't being recorded so I have no idea if it was abnormal.

I ask because I'm scheduled for a five-day in-hospital EEG and my blood pressure going high enough to cause a stroke is a real concern. I do have a stent in my "widow maker" artery and that only increases my concern.

@tonyde Hi
Your question about blood pressure and seizures is really important, especially given your cardiac history.
From my understanding, both scenarios you mentioned are possible. High blood pressure can potentially trigger seizures in some people, and seizures can also cause blood pressure to spike during and after the event.
Your question reminds me of someone's story. She had a cardiac arrest alongside a seizure at home. Doctors haven't been able to determine what came first, that is: whether the cardiac arrest triggered the seizure or vice versa.
How are you feeling about the upcoming EEG? I remember you starting a discussion about 5-day EEGs in the hospital in our group last June.
Chris

I'm getting a little nervous about it, everything from not having a seizure to having a really bad seizure. No seizure and it's a worthless hospital stay, a cardiac related seizure may not show brain activity and a bad seizure may cause permanent damage. I need the 5-dy EEG to help me find the cause and gain better control. The reality is anyone could have a seizure not related to brain activity or permanent damage from a seizure without being hospitalized for an EEG. I just have more time to worry about it.

I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years but my neurologist says that I have non epileptic seizures along with a second neurologist’s opinion which said I have PNES seizures and took me off my seizure medication but my primary care doctor put me back on my seizure medication and it has been helping with my seizures, during my seizure my eyes are open and roll back into my head but my MRI CTSCAN VIDEO EEG LAB WORK comes back normal along with everything coming back normal I have a neurological condition called neurofibromatosis type 1 and MRI of the brain come back normal then in march I had a partial hysterectomy but still having seizures every now and then but my aura is elevated heart rate before the seizure but during the seizure heart rate is normal along with oxygen level but my blood pressure goes up also I have Mitral valve prolapse. I’m just wondering on what to do next cause neurologist wants to take me off the liquid keppra by slowly decreasing.

I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years but my neurologist says that I have non epileptic seizures along with a second neurologist’s opinion which said I have PNES seizures and took me off my seizure medication but my primary care doctor put me back on my seizure medication and it has been helping with my seizures, during my seizure my eyes are open and roll back into my head but my MRI CTSCAN VIDEO EEG LAB WORK comes back normal along with everything coming back normal I have a neurological condition called neurofibromatosis type 1 and MRI of the brain come back normal then in march I had a partial hysterectomy but still having seizures every now and then but my aura is elevated heart rate before the seizure but during the seizure heart rate is normal along with oxygen level but my blood pressure goes up also I have Mitral valve prolapse. I’m just wondering on what to do next cause neurologist wants to take me off the liquid keppra by slowly decreasing.

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?