Could I have PNES? (psychogenic nonepileptic seizures)

[Lgk12]

Hey everyone

Obviously, from the title, I'm trying to get your opinions an whether I could have PNES or not, before going to the doctor and sounding like a lunatic so here's a little background history on me:

I was diagnosed with juvenile myoclonic epilepsy when I was 15. (20 now). That was the summer of 2007. In November of 2006, my dad passed away from Non-Hodgkins Lymphoma. He was sick for about two years, and during that time period I only had about two or three of my seizures (brief jerks). Maybe one a month. But after his death it was more constant. I was seeing a psychiatrist to cope with his death (I kind of just sat there... My dad was a psychiatrist and now I'm seeing one? Lol) anyways, she ordered an EEG for me and shortly after I was diagnosed with JME. But the thing is, I've just never felt right about my epilepsy. Of course no one wants to have seizures, but it's hard to explain. We have no family history of epilepsy, and then after my dad dies I all of a sudden start getting them? Well I put that thought in the back of my mind.. But it's always been there. I recently came across PNES, and knowing that If I did have it, I could potentially get rid of my seizures with coping methods, I'm trying to figure out if it's even a possibility. So I just wanted to get some thoughts from all of you thanks!

-ive had 3 EEGs, all came back positive for my diagnosis.
- I had one MRI (more recently) and it was clean
-my blood work has always been good.
-I take a pill for epilepsy and one for depression, let's just say its not pretty during a certain time of month

Thanks everyone!
Lauren

 

[Nakamova]

Hi Lauren --

A positive EEG means that there was epileptic seizure activity recorded. So your seizures are epileptic in origin rather than psychogenic. That doesn't mean that stress isn't playing a role -- it's a very common seizure trigger, especially in the secondary effects it has on every aspect (sleep, metabolism, immune function, etc.) of our brains and bodies. It's also possible (and relatively common) to have both epileptic and psychogenic seizures. Certainly it can't hurt -- and will probably help -- to look for ways to reduce your stress.

You might also want to consider the possibility of a hormonal trigger for your epileptic seizures, given your susceptibility to PMS-related depression. A high estrogen level can be a seizure trigger. Called catamenial epilepsy, it can sometimes be treated using progesterone in the form of birth control, lozenges, or creams.

Best,
Nakamova

 

[Bathtub]

So sorry to hear about your dad, Lauren. Bereavement is a very complex journey even without your own illness to deal with, plus all the background stuff school, exams, boys etc that goes with the territory being mid-late teens. It's a lot to handle all at once, and as well as actual direct stress it can disrupt sleep which I read is another trigger.
You don't mention your mum but there's likely some knock-on effect there, through her ineveitable stress and maybe financial issues, whether they lived together or not, and you're dealing with all that too. Although you're at the launching point for your own life.

Maybe some counselling might let you get on top of it, perhaps you have accidentally cut back on healthy behaviours like sport and sleep, or are worrying excessively about careers stuff, to get mum through...

I don't think you can "fake" - sorry can't find a better word, um, think yourself into? - characteristic EEG's, but looking at the common triggers that you can control, might be very helpful to reduce the seizures.

From what you wrote, you sound to be a very brave young woman and I wish you all the very best.