1. < Epilepsy & Seizures
Profile picture for DrivenByME

Have nonepileptic seizures/psychogenic nonepileptic 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.

Profile picture for tonyde
tonyde | @tonyde | Jul 30 9:43am
In reply to @santosha "@tonyde Hi Your question about blood pressure and seizures is really important, especially given your cardiac..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@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

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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.

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Profile picture for Chris Gautier, Volunteer Mentor
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Chris Gautier, Volunteer Mentor | @santosha | Jul 30 7:35pm
In reply to @tonyde "I'm getting a little nervous about it, everything from not having a seizure to having a..." + (show)
Profile picture for tonyde @tonyde

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.

Jump to this post

Hi @tonyde
I completely understand your nervousness. I felt the same way when I had a 3-day EEG at the hospital for exactly the reasons you mentioned.
Try to remember that you'll be in the safest possible environment at the hospital. If a seizure does happen, you'll have immediate medical care available.
Have you been able to discuss these specific concerns about the 5-day EEG with your neurologist? Sometimes talking through the "what ifs" with your doctor can provide reassurance.
Chris

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lanieg | @lanieg | Jul 31 11:19am
In reply to @meagan "I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years..." + (show)
Profile picture for meagan @meagan

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.

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I recently had an episode that several doctors said was a seizure but no one could put a name to it. I stopped walking an couldn't or wouldn't move. EMTs laid me down and an ambulance took me to the hospital. I became unconscious for 2 1/2 days, was intubated. My temperature went up to 103.4 degrees and my blood glucose rose to 614 mg/dl. Had many tests, EEG, MRI, CT scan, spinal tap, blood work. Nobody could tell me why this happened. Any ideas?

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Profile picture for Leonard
Leonard | @jakedduck1 | Aug 1 12:26am
In reply to @meagan "I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years..." + (show)
Profile picture for meagan @meagan

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.

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I wonder if you experienced a seizure that progressed into Non-Convulsive Status Epilepticus. Were you walking and aware that you had stopped, or was your awareness impaired? Did the hospital place you in an induced coma? Do you have any memories of this episode? Do you know the results of your EEG? Have you been diagnosed with epilepsy or diabetes? All those seizures can increase glucose levels. I never heard of glucog evels anywhere near that high. Do you know how long your ability to walk was impaired? High glucose levels could potentially lead to a seizure or coma. Very curious episode.
Please keep us updated.
Take care,
Jake

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nancycollett50@gmail.com | @nbean08 | Aug 22 11:24am

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?

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2 replies
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audo | @audo | Aug 23 1:31pm
In reply to @nbean08 "I have had seizures since 2012 after I was rear ended by a drunk driver. I..." + (show)
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?

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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.

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Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Aug 31 3:06pm
In reply to @meagan "I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years..." + (show)
Profile picture for meagan @meagan

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.

Jump to this post

Hi Everybody!
About 3 weeks ago, I experienced my first PNES episodes, giving me a much deeper understanding of the posts and experiences that have been shared here.
It all started with an aura followed by a strong complex seizure. So, I respected my body and rested for the rest of the day. To my surprise, several hours after my complex partial seizure, I began experiencing a few auras again, which continued and increased over the next day. My doctor then recommended I go to the hospital, where I was admitted to the EMU. After the EEG results were analyzed, I received the unexpected diagnosis of PNES alongside my existing epilepsy.
My doctor's analysis and diagnosis: Following my first status epilepticus experience last December, I developed an intense fear of it recurring. This fear became deeply embedded in my subconscious. The complex partial seizure I had earlier that day, after almost 8 months without any seizures, created significant anxiety and insecurity, which then triggered approximately 20 pseudo-seizures that felt exactly like my typical auras. My doctor explained that it's quite common for patients with epilepsy to also experience PNES events.
This all occurred during a period when I was reducing my CBD dosage while facing some stress. Both my doctor and I learned an important lesson – this wasn't the appropriate time for any medication adjustments, even minor ones like I was attempting. I've returned to my previous CBD dosage and slightly increased my Keppra dosage to provide additional protection during this vulnerable time, given my parents' current health situation.
I must acknowledge that while my doctor was aware of my parents' circumstances, I hadn't fully communicated how emotionally fragile this situation has left me. That was my oversight, and I realize now how important it is to be completely transparent about stress levels and emotional state with your doctor.
Since I've been back on my previous CBD dosage and increased Keppra dosage, I've had no more seizures and/or PNES events, thankfully. However, I feel that my memory is still a bit impaired, similar to what happened after my status epilepticus in December. Did any of you also experience decreased memory after PNES episodes?
Thank you all!
Chris

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Profile picture for Chris Gautier, Volunteer Mentor
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Chris Gautier, Volunteer Mentor | @santosha | Sep 1 5:51pm
In reply to @dannoyes "I also have FND seizures and epileptic seizures and the first thing that I have found..." + (show)
Profile picture for Dan Noyes @dannoyes

I also have FND seizures and epileptic seizures and the first thing that I have found is I had to remove the PNES label. For me and actually my neurologist (not Mayo) it felt like this was a psychological issue. In fact, my local neurologist sent me to a psychologist to try to "fix me". Fortunately I went to the Mayo EMU and I was told that my clinical condition is considered FND seizures and it's not psychological, but biological. I wasn't making it up. It wasn't because of some type of psychological issue. It was just as real as the scarring on my brain from a TBI during a seizure. This helped me immensely!

I also participated in the Mayo PRC program which help to further explain my chronic condition and to elaborate deeper into what was going on in my brain. Once again it was biological not psychological. This clear delineation made me feel whole again and not like I had done something wrong.

The difficulty now is knowing what types of seizures I have and whether they are FND or epileptic seizures. What my wife does is film every seizure I have and send them to my Mayo neurologist and he can instantly pinpoint what type of seizure it is. I've taken this one step further and uploaded my seizure videos to an AI tool with all my MRI and PET Scans, my diagnosis, and my patient history and then have Gemini do an assessment of my seizure. I then share the outcomes with my Mayo neurologist. The accuracy is stunning. While even the most modern AI tools are not 100 percent this extra bit of diagnostic information helps me get a better handle on my condition. This is all thanks to the amazing Mayo team.

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@dannoyes
Hi Dan,
As I recently shared in this discussion, I've just experienced my first PNES episodes after having an epileptic seizure a few weeks ago, which reminded me of your situation.
In your post, you mentioned that your wife films your seizures and sends the videos to your doctor to help determine which episodes are epileptic seizures versus PNES events. Did your doctor share with you what specific differences he found between your seizures and PNES episodes?
I'm new to the AI area and would love to know more about how to get an AI assessment like the one you did. Would you mind sharing more details about the process? Out of curiosity, which AI tool do you use?
Thanks a lot!
Chris

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Profile picture for Dan Noyes
Dan Noyes | @dannoyes | Sep 1 6:55pm
In reply to @meagan "I was born premature at 25 weeks born with epilepsy. Been on keppra for 23 years..." + (show)
Profile picture for meagan @meagan

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.

Jump to this post

@santosha So my Mayo neurologist has me upload my seizures as a private YouTube upload and then I send him the video links in the portal. At one point he offered to walk through the videos with me to reveal specifically why they were FNDs versus epileptic, but I was very hesitant to know. Psychologically, seeing myself seize is so troubling for me. I hate even just catching a glimpse when I'm uploading the videos. He also said my seizures are very unusual, and he feels that after seeing me seize for over a year now, he can identify them immediately. Like you, I have both types of seizures, so distinguishing the seizure type is only important if they need to make medication changes. Fortunately, I'm on Vimpat and Gabapentin so the feeling is they are both relatively safe so since I primarily have FND seizures recently we're just going to assume the meds are keeping the epileptic seizures under control.

Send me a private message and I can share with you how I used Google's MedGemma to have it review the seizure video in consultation with my Mayo neurology team. I would never trust any other AI tool to provide trustworthy clinical insights at this time. There are obviously a ton of ways the other tools can help, but just not diagnostic perspectives.

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1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Sep 2 7:51am
In reply to @nbean08 "I have had seizures since 2012 after I was rear ended by a drunk driver. I..." + (show)
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

@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

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