#the cleveland clinic has some good information on their site about both epileptic and pnes type seizures

[v-tired-queer]

Hey! We don't know each other but I found you through the PNES tag. I'm trying to find out more info about PNES versus temporal lobe epilepsy, to help me figure out how likely it is that I need medication for what I'm pretty sure are focal seizures.

My question is: can PNES seizures have an aura?

Are there any ways you know of to tell the difference aside from an EEG during an episode? I am planning on getting a neuro referral at my next doctor's appointment but it's been giving me bad anxiety worrying about it.

Thank you for your time.

Hello! I really hope things go well with your appointment! I know how scary all of it can be. I have full faith that you've totally got this though!!

So, to answer your question: yes, some people with PNES can and will experience an aura before a seizure, but others won't. The way that PNES affects people and is experienced can vary from person to person. For example, like I said, I do experience an aura sensation before I have a seizure. My head begins to fog up in a way that's kind of hard for me to fully describe. For me, it's almost like I'm slowly becoming mentally numb, like a fog is rolling in that puts me on high alert. But I also have other tell-teale signs that I'm about to seize: my left hand always starts to tremble, and I always become vastly less-than-aware of myself and my surroundings. Other people with PNES might have different cues, or similar cues, or anything else entirely. That being said, the seizures themselves can differ, too. While mine include no longer being in control of my limbs and violent convulsions and twitches, some people may have ones that look like absence seizures, or even another type completely.

Before I was officially diagnosed, I went to two different neurologists and had two different EEG scans done: one in office and one overnight. They monitored how my brain behaved both outside of a seizure and during a seizure. PNES seizures and epileptic seizures look very different on EEGs, which is to be expected due to their different causes. It's actually pretty cool to see the difference, I recommend looking up some different scans to see! But outside of the tests, my doctors ran through my symptoms and how I experience having a seizure, and were able to jot down the differences in what I was experiencing compared to someone with epilepsy. For example, I'm actually able to hear everything around me during a seizure, but since I'm seizing, I'm unresponsive no matter what, which tends to be abnormal for the type of seizure I experience. I also go completely nonverbal after a seizure for anywhere from 10 minutes to an hour. But again, that's just how I experience them. Experiences can and often times will vary from person to person, but the cause is the same: PNES is brought on by an emotional response, while epileptic seizures are caused by a physical response from the brains nerves cells.

Now that being said, temporal lobe epilepsy doesn't seem to be caused by an emotional reaction, but rather, can be triggered by an emotional reaction (usually high stress levels) due to the epilepsy being present in the, well, temporal lobes. Which then circles back around to the overall cause being different, though symptoms can be similar.

To be honest, due to their similarities, I'm not sure if you could be diagnosed with one or the other without having EEGs and other tests done. But the good news is, none of the tests hurt! And for all of them you'll be closely monitored so in the event of a seizure you won't be injured then, either.

(I'm a "glass half full" kind of person lmao)

I cannot stress enough how important it is to be honest with your doctor about what you're experiencing. It's definitely anxiety inducing for a lot of us, but the more open and honest you are with them, the more they can help steer you in the right direction. And if you get saddled with a doctor unwilling to listen or simply write you off, please don't hesitate to really advocate for yourself. You really need to be in your own corner so you can get the correct diagnosis, so you can then get the proper help and treatment you need. It'll take time, and at some points it'll probably be frustrating--I know it was for me--but it's so important to get the proper treatment for the true problem.

I really, really hope that things go well for you and that you can figure out what it is that you're experiencing! I'm rooting for you!!

(Also this got very long very quickly, but I hope it helps nonetheless!)