After a long break (because life decided I needed a plot twist), I'm back! This episode dives into my personal journey with psychogenic non-epileptic seizures (PNES) following a decade-old traumatic brain injury. I'll share the ups and downs of living with PNES, the tough choice to step down from my role as an executive assistant, and how I’m working with my medical team to prioritize my mental and physical health.
I am so excited to return to the ADHD EA podcast, producing short, informative episodes full of insights, practical tips, and my own experiences.
Coming soon: an incredible interview with an AuDHD Mental Health NP, an episode on the Pomodoro Method, and so much more.
Items referenced in the show (these are affiliate links and purchases of these items help fund the pod):
After a long break (because life decided I needed a plot twist), I'm back! This episode dives into my personal journey with psychogenic non-epileptic seizures (PNES) following a decade-old traumatic brain injury. I'll share the ups and downs of living with PNES, the tough choice to step down from my role as an executive assistant, and how I’m working with my medical team to prioritize my mental and physical health.
I am so excited to return to the ADHD EA podcast, producing short, informative episodes full of insights, practical tips, and my own experiences.
Coming soon: an incredible interview with an AuDHD Mental Health NP, an episode on the Pomodoro Method, and so much more.
Items referenced in the show (these are affiliate links and purchases of these items help fund the pod):
Hi everyone and welcome to the ADHD EA podcast. I'm your host, C claire.
Claire:
I don't know if you've noticed, but it's been quite some time since the last time I uploaded an episode, and the reason is because a lot of things have changed. First and foremost, I am technically no longer employed as an executive assistant. Now I want to make it clear this was a choice that I made in conjunction with my manager and my company, because I recently was diagnosed with something called psychogenic non-epileptic seizures or non-epileptiform seizures. Either term is usable, either term is fine.
Claire:
About About 10 years ago, I sustained a traumatic brain injury. This was due to two concussions sustained inside of a very short period of time. According to my journal at the time it was about three days and the result is that I now have what appear to be seizures but are not epilepsy. These episodes, as we'll call them, I originally thought were fainting spells due to the pneumonia I had and later on assumed were cardiac and pulmonary issues and then later assumed were anxiety and or panic attacks. And it wasn't until last December, when I was describing my panic attacks to a friend of mine, that she responded in a very concerned manner,"T hose those aren't panic attacks. Those sound like seizures. As it turns out, she was in fact correct. They are seizures Now they are not epilepsy. They do not show up on an EEG. They will never show up on an EEG With psychogenic, non-epileptic seizures, pnes if you experience something traumatic and then sustain a mild head injury, these can be the result and essentially it is a software issue in your brain, not hardware, which is why it doesn't show up on the
Claire:
EEG t
Claire:
.? I...
Claire:
For me personally, when I experience high levels of stress, I experience more of these. Some do appear to be grand mal seizures where I will be on the ground and shaking and very much what you imagine a seizure to look like. I also experience tremors in my hand if I'm trying to do fine motor skills or if I'm stressed out, and I will experience localized tremors, shakes, whatever you want to call them, where my arm or part of my face or my leg will just sort of twitch or not work right, and those can last anywhere from 15 seconds up to three to five minutes. The reason I am no longer an executive assistant is because I was having somewhere in the vicinity of 20 to 30 of these minor localized seizures a day is, " sometimes as many as five of the major seizure-like episodes a day. I have been unemployed for the better part of two months now and while the seizures have lessened, I am still experiencing about anywhere from five to 20 of the minor seizures a day and at least two to five major seizures each week
Claire:
Now, t as I'm sure you can understand. Seizures each week, as I'm sure you can understand. That could put quite a bit of a wrench in my plans to have this podcast be produced regularly, and I've been taking this time to focus on my mental health, my physical health to, and trying to work with my now very large medical team to get this under control. "
Claire:
The cool thing about PNES is that I will experience an aura beforehand, similar to what somebody may experience with migraines. For me personally, if you imagine that feeling right before you get sick, where you're like am I okay, is there something wrong? Something feels off, and then shortly thereafter, you will either get sick, you'll come down with something. That sensation is what I feel before I start seizing. It's useful, but unfortunately it does not allow me to stop these.
Claire:
The other part of this that separates F what I have from epilepsy is that during epilepsy there is a lack of awareness. During the seizure itself, there is a lack of self-protection. So if you try to poke somebody in the eye when they're having an epileptic seizure, you can poke them straight in the eye. They will not close their eye to protect it. With non-epileptiform seizures, the eye will close to protect itself, and I am completely aware of what is going on during the seizures. Now, I am aware that if you have never witnessed one of my seizures before, it is scary, it is very uncomfortable and very concerning to the people who are observing this, because it does look bad. However, in my brain, what is going on during the seizure is this again please stop. Please just move your limbs normally. Please just stand up. This is too much. You don't need to be doing this right now. Just stop much. You don't need to be doing this right now. Just stop. As I'm sure you can imagine, I do not just stop Now.
Claire:
The other part that separates this from epilepsy is that I can be pulled out of them. That is not hard and fast. It doesn't always work that way, but in the event that something happens especially something that I am not expecting and I have a subconscious reaction to that will generally pull me out of it. Now, if it is a bad one and you pull me out of it, the chances of me having another one that is worse very shortly thereafter, within like the next half hour, is quite high. So sometimes it's worth it for me to just get through it and go through the" seizure itself and
Claire:
just let it work its way through, because that is how my brain is processing stress. It is obnoxious, to say the least. It is very annoying for me to experience and it's very frustrating because I don't want to be doing this and in my head it seems like it'd be very straightforward to say, hey, stop shaking your limbs. And unfortunately that doesn't work. c. Unfortunately for me and other people who experience psychogenic non-epileptic seizures or non-epileptiform seizures, whichever you want to call it, there isn't a lot of research into this. For a long time they were called pseudo seizures, which led to the belief that a lot of them were faked. Now I am certain there are plenty of people who do fake them for whatever reason, whether it's trying to get medication, it's attention, etc. However, I will say that the preconceived notion of people faking these is incredibly damaging to those of us who do have this and are not faking it and having to essentially prove to medical professionals that this is an actual issue and this is not something that we're just faking. In my
Claire:
case, especially in January, february and March, I ended up in an ambulance at least once. I ended up in the ER at least once. I am very grateful that I am a veteran because the VA, luckily, has paid for all of this, because if they did not and I had regular insurance, this would have been a unbelievable stressor on my family financially. It would have been a stressor on anybody financially. I don't know if you've looked at the cost of ambulance rides recently, but yeah, now I've been very lucky in that All of my doctors understand this and are willing to do the research
Claire:
into this. A That has not always been the case at the ER, where I have had to tell them the name of this and they have had to episodes go look it up. I even had a nurse when the EMT told her that I was having pseudos using the outdated term. But you know I will. I will let that pass because the EMT had been in the business a very, very long time and
Claire:
it had not been in school when they shifted from pseudos to non-epileptiform seizures. When the EMT told a nurse that I had just had one in the hallway briefly .
Claire:
The
Claire:
nurse looked at her and went, but did she? I was about two or three feet away.
Claire:
I could hear her, I could see her and the result of that fear of not being believed resulted in the worst night of seizures I have ever had. I had nine within a three hour period, including one that lasted more than five minutes of severe shaking and trying to get a hold of somebody, because I'm in a ER room with the door closed and I can't hit my button and I'm trying to like flick off my pulse ox to try and get the attention of somebody and unfortunately that didn't work. Also worth noting that, again different from epilepsy, I can control some parts of my body depending on the severity of the seizure. So I always maintain my phone on me. I have a way to call my husband very, very quickly from my lock screen. The lock screen of my phone now says hi, my name is Claire. If I am seizing, please press down on my chest very, very hard and call this number. It's my husband. I will likely be okay shortly If I'm not. Call 911.
Claire:
To say that's depressing to have as my lock screen is a huge understatement, but a lot of times I am at least able to get enough control, while my arm is shaking quite badly, to at least get my phone to the emergency contact, call my husband and he knows that if he answers and I am not talking that I am probably having a seizure, and I luckily have a number of neighbors who either are stay-at-home moms or work from home who have full permission to just walk in my house, push down on my chest until I am okay.
Claire:
Luckily, that has not been a frequent need. But in ADHD and neurodivergence as a whole, we will be returning to what I originally intended this podcast to be, which is short, sweet videos on ADHD symptoms, adhd tips and tricks, personal experiences and those types of things. I have recorded an incredible interview that I've been wanting to share with you guys but, frankly, just haven't been in a place to be able to edit it and get it out to you. So, with that being said, I am very excited to be getting back into this podcast and I can't wait to produce more content for all of you. So until next time.
Claire:
This podcast is brought to you by FWH Productions and was produced and edited by well me. If you'd like to support this podcast, please give it a five-star rating, share episodes with your friends and join me on Facebook by following our group, the ADHD EA podcast. If you'd like to support this podcast via Patreon, well, I don't have one yet, but if I see enough interest, I will create one. Thank you.
