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.

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 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.

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?

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.

@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

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.

Hi. First time poster, long time lurker.I had my first seizure in March, now another last saturday. I`m 43 years old, never had any seizures in my life before this.There is no epilepsy in my family as far as I was able to research and ask my relatives. I also had an EEG, MRI`s, CT-scan, X-rays taken and blood tests, all came out clean and everything was fine in the scans.My therapist thinks this is related to my ptsd - most likely c-ptsd, but it´s not yet a diagnose where I`m from. Meaning that it´s a difficult case of ptsd that requires treatment, psychotherapy and medication. I`m on Tramadol, Pregabalin and Xanax, the medication has been same for 8 years now with no problems whatsoever. With the meds and therapy I have been able to stabilize my life and get some control to the symptoms, all in all my life has gotten better and easier. And now, out of nowhere I get seizures with absolutely no reason other than ptsd.So my question is, are there others with this kind of violent symptoms of ptsd? If so, what has helped you? I would be grateful for any tips or advice, I would just want to live my life and try to make it better day by day, so I could enjoy life for once, perhaps try to get a part time job and a relationship and so forth.Thank you, have a good one and stay safe out there.