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Through My Eyes: Living With PNES

preschoolplaygrounds PNES Personal Experience

Trigger Warning: Mention of suicide, self-harm, seizures
Video may be disturbing to some. View with caution.

After each of these seizures, all I want to do is sit, stare, and let my body drop into the couch. I'm grateful when the medicine begins to sink in, helping my muscles relax. Though I can get something in my system to offset the wild movements, I still end up with one or two muscle strains. A kink here, a kink there. It feels like I exercised for hours when I certainly did not. It takes so much out of me.

To me, these non-epileptic seizures are the oddest things. First, I can feel the shaking start like an internal vibration. Then, before I know it, I am stuttering, swearing, physically shaking, and trying to get myself in a safe space because I know what's coming. 

It feels absolutely terrible. 

I try to speak, but it comes out jumbled. I try to reach for things, but my body is flailing around, and I cannot control it. But, as odd as it sounds, when the ordeal is over, I am calm and relaxed, and every muscle seems to take a rest, thankfully.

This is my footage from the seizure I experienced Friday. It shows me gesticulating, making quirky faces, and taking a pill. It may not be suitable for everyone to view. 

I record these episodes when I am able because it helps me understand myself. PNES, or Psychological Nonepileptic Seizures, can look drastically different from one person to the next. It is extremely understudied, and there are no real answers, just things to try and learn from when an episode rears its ugly head. Although I must say, now that I know what is happening to me, I am much more relaxed during them. If I am cognitively aware, that is. But I'm not always present; instead, I'm lost in a whirly-twirly rainbow floating around in my subconscious.

As I mentioned, PNES looks different for most. But I found a pretty good FAQ here; check it out.

Once I had settled down and rested, I watched the video recording. I noticed how I could hold a phone for a bit and put the cap on my water bottle, but I couldn't stop twerking or making jazz hands repeatedly. I don't understand why sometimes I jerk and repeat movements; other times, I stretch as far as possible. So now I know these episodes can take all types of turns. I just have to roll with it and let it happen as safely as possible, constantly reminding myself that this moment is temporary. It will get better.

Something did stand out during this episode, but it wasn't something I did. As it was happening, even more bizarre than, well, me was my dog, Bruno. Bruno is a Shih Tzu/Terrier mix and notorious for staring at me; all the livelong day. This time was no different, but he was lying on his side, jolting every few seconds. I have never seen him move like that! That dog was mimicking me, and I could not believe my eyes. I felt he was showing me it was normal. We all do that! He then ran over to me as if playing and did the I'm a little dog standing up and leaning on the couch thing. I pet him, and wouldn't you know it; my body immediately began to relax. I'll never forget that. You can hear my husband a bit in the background of the video on speakerphone. When I was petting the dog, my husband said he could sense the instant relief, hearing it in my voice. That's something to add to the old toolbox for next time. 

Many years ago, I would get angry, throw things, drive 100 mph, and stay out all night in reaction to the symptoms of my illness and the stigma associated with it. I grew up knowing I was "too sensitive" because I was told that constantly. But I wasn't sensitive. I was ill. Lucky for me (and others), those days are over. I'm not saying I won't ever be manic again; scientific data and my experiences tell me otherwise. But I have learned that deciding how to respond to situations like this helps me recover. It can extend and improve the quality of my life to practice mindfulness even (most importantly) when struggling. And if that makes me sensitive, good for me. I'd rather be supportive of myself than feel I am a wrong human. There is nothing wrong with me. I have an illness, and this is how I can accept it, work with it, and understand it. 

Bipolar Disorder, ADHD, OCD, PNES, PTSD, and failed back syndrome can make daily living difficult. With my illness and the fact I am a suicide attempt and self-harm survivor, I must manage my symptoms before and when triggered. No one else will do it for me. Therefore, I must do everything I can to help myself, even if that means getting very uncomfortable and challenging my mind to be better for itself.

One could refer to my mantra, "I am not doing this to myself," as a way to create new neural pathways to change the way I'm prone to thinking. I bet you can probably guess my TOC (therapy of choice). You would be correct if you said CBT (Cognitive Behavioral Therapy). Everyone has what works for them. CBT is and has been a longstanding, reliable tool in my toolbox. But there isn't just one tool; it takes many to keep this garage functioning.

Hmm. I never did compare myself to a garage before.

So, I guess it is safe to say the seizures have not gone away entirely, though, with a medication change, I had hoped they would. But unfortunately, it seems they are part of my life, and I have no choice but to go with the flow and learn as much as possible. Then make the changes necessary to live even better than the day before.

I believe my brain was created and grew with an imbalance or biological malfunction. Over time, my mind has worked in overdrive, often against me and in the wrong direction. I also believe that regardless of everything that happened to me, it is my job to train my brain to work better for my loved ones and me throughout my life. That means letting go of all things that no longer serve me, whether it be people, places, activities, thoughts, or behaviors. I have to live with myself and prefer to live knowing I do the very best I can at being the best person I can be. And I don't give a shit how cliche that sounds. That's my truth, and that's all I can do. So I am good with that.

Thank you for your interest in my story. It means more than I could ever explain. If you need help, please check out our growing resources list here. Remember, you do you. Be sensitive, be loud, and be bold but never be quiet about your illness. Advocate for yourself because you, my dear, matter.

If you need immediate care, call 911 or 988.

Love & hope to all,

Mo🤘❣️

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2 comments

  • You are an amazingly strong determined woman! 😘❤️

    Betty on
  • You. Are. A. Beautiful. And. Utterly. Amazing. Human 🖤🤘🏻🖤

    Colleen Ward on

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