Epilepsy or PNES seizures

@meagan Good Morning
In situations where I feel uncomfortable with a doctor's approach, I usually seek a second opinion. Regarding PNEs, I cannot add much, as my knowledge in that area is limited. However, I recently came across an article that might be helpful for you:
https://www.myepilepsyteam.com/resources/epilepsy-and-stress-related-seizures/
Wishing you all the best!
Chris (@santosha)

Hi, @meagan. Welcome to Mayo Clinic Connect. That's quite a bit of back and forth with taking or not taking the levetiracetam (Keppra) and trying to decipher if you have epilepsy or psychogenic nonepileptic seizures (PNES).

I applaud your continuing to seek answers.

I'm tagging a few members who have mentioned PNES and may have some insight for you as you try to determine if you have epilepsy or PNES @drivenbyme @hosey70 @jcnel @lindaibm @tonyde @stuckonu. I'd also like for you to meet @jakedduck1, who may have some thoughts for you.

If I understand properly, you feel the medication is helping with your seizures, but your neurologist wants you to taper off at this time?

Some Mom thoughts of a loved one with nonepileptic seizures and being treated for epilepsy. Have you had veeg's verses just an eeg? We also record any new looking seizure activity. Abnormal discharges have been found on my daughter's. I'm not sure if we can share specifically what med she uses or if that's something you'd like to know...
She also uses nonmed techniques to process hard things. A good sleeping pattern we have found is essential in fighting off seizure activity.

@meagan
I have never had a PNES episode, at least not that I know of.
You mentioned the Keppra helped you. By that I assume you mean, they have decreased the number of seizures.
Anti-seizure medication has no effect on PNES episodes.
There are some differences between a seizure caused by epilepsy, and when caused by PNES. One difference is that virtually all epilepsy patients have their eyes open during a seizure while during PNES episodes the eyes are generally closed. Another difference is that seizures caused by epilepsy are normally always shorter than those caused by PNES.
Also episodes of PNES movements seem to be different from episodes where as epilepsy seizures are of a more consistent nature. There are other differences that I can't remember.
Has anyone witnessed one of your attacks?
Have you had these seizures/episodes since being on Keppra?
Do you have anxiety, depression or panic attacks?
Take care,
Jake

The best thing you can do for yourself is to see an epileptologist to determine the cause of your seizures.

I went to several neurologists before getting my seizures under control. One neurologist told me I wasn't having seizures because I wasn't flopping around like a fish and my EEG was normal. I have since learned that it's not unusual for an EEG to be normal especially if you're under control.

I went for years without a seizure until I had a bad fall 18 months ago and they came back with a vengeance. A bad one put me in the hospital where I was out for several hours. The resident neurologist suggested I have an epileptologist do an EEG in a hospital setting. That consists of being hospitalized, stopping seizure meds and having a EEG for three days.

Your neurologist may be giving you great advice or setting you up for a nightmare.

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.

Hi Lisa, I hope it’s ok to jump in this thread. By husband has been having seizures for over 1 year now. They started more violently with flailing limbs but it’s just his hands and feet that uncontrollably move be on weird unnatural moves vents causing severe pain.
One example is one of his arms will want to go behind the back and it’s with all of his might and with the legs it’s more of a pretzel, but still just so tight and tense nothing can break it until the body releases it
We just need help please. We’ve going to the neurologist here that put us in the hospital for a few days for the EEG and after said there was no signs of epileptic seizures so must be PNES and that is where we are now we do not have a care team we don’t know where to go from here. This is continuing to affect our lifestyle and a major way it happens frequently and I don’t feel it’s ever been either diagnosed correctly or if they are just giving him medicine to try things out this cannot continue and I’m in desperate need of getting my husband back to himself please

@mpost1234

You stated, “the legs it’s more of a pretzel, but still just so tight and tense nothing can break it until the body releases it.” It's important to remember that you should never hold or restrict seizure movements or force limbs into any position. Seizure contractions can be extremely powerful and potentially lead to broken bones. If your husband is experiencing tonic-clonic seizures, he shouldn't experience pain during the seizure itself since he should be unconscious. However, if he is feeling pain as he begins to regain consciousness during the postictal phase that's understandable.

Just because an EEG does not show electrical abnormalities doesn’t mean your husband isn't having epileptic seizures. In fact, around 50% of individuals with active epilepsy can have normal EEG readings. The most accurate way to diagnose PNES is through video EEG monitoring in an Epilepsy Monitoring Unit (EMU). You can find various EMUs across the US at the following link: https://naec-epilepsy.org/find-a-center.

Here are a few distinctions between epileptic seizures and psychogenic episodes:

1. Epileptic seizures are caused by abnormal electrical activity, while PNES episodes are psychologically induced.
2. Typically, patients with epilepsy have their eyes open during a seizure; in contrast, those having psychogenic episodes usually have their eyes closed.
3. Most epileptic seizures are shorter compared to psychogenic episodes, which tend to last longer.
4. Patients experiencing psychogenic seizures often deal with negative emotions before and during the episode, finding it challenging to process their feelings, which can lead to crying.
5. Epileptic seizures lasting 5 minutes or more are classified as Status Epilepticus and demand immediate medical attention; this is not applicable to PNES.
6. The shaking movements in epileptic seizures are generally synchronous, whereas psychogenic episodes often lack this synchronization.

It's entirely possible for individuals to experience both epileptic and psychogenic seizures. Have you noticed a reduction in seizure activity since your husband started taking Keppra?

My best wishes to both of you.
Jake

@mpost1234 Welcome to Mayo Clinic Connect!

@jakedduck1 has a lifetime of experience and knowledge of seizures and how they affect one's life. I have little doubt his informative response will help you understand your situation.
Ginger