Epilepsy or PNES seizures

Posted by meagan @meagan, 4 days ago

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.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Chris Gautier OR Santosha | @santosha | 3 days ago

@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)

Lisa Lucier, Moderator | @lisalucier | 2 days ago

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?

jcnel | @jcnel | 2 days ago

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.

Leonard | @jakedduck1 | 2 days ago

@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

tonyde | @tonyde | 1 day ago

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.