Dealing with Psychogenic Non-Epileptic Seizures

As happy as I am that it’s not the more serious condition, Epilepsy, I’m torn about my diagnosis of Psychogenic Seizures. I understand that it is not in my head, but my body’s real reaction to stress. As a person who thinks health is very important, whether it’s fitness, eating right, or just taking care of the only body you have; I find this a hard pill to swallow.

Does this mean I have PTSD from the car accident? It seems silly, as people I know with PTSD have been through way worse. Am I so stressed that it was the final straw, and my body couldn’t take it anymore? I really am surprised by this theory, because I always thought I dealt and coped with stress very well. I have faced greater obstacles in life, and I was fine.

I’ve thought about getting a second opinion, but I don’t know if I want to go through all of that again. I don’t know why I am having such a hard time with this diagnosis, as I am a huge advocate for having better mental health care. I am still in the process of making an appointment with a therapist that specializes in psychogenic seizures, but we’re playing phone tag, so I haven’t actually been able to make any progress on that. Maybe once I see the therapist, I will not feel as torn, because I will be doing something about it.

In the meantime, I am to find an activity that will help me destress for an hour every day, and I wanted to pick up piano again. I played when I was younger, but I quit because I didn’t like any of my new teachers after we moved to a new town. So I was looking at keyboards, and I realized we couldn’t afford to purchase one, so I felt like I took a step backwards.

Then my husband looked at me, and he said, “Your health is more important to me than anything else. I will find a way to get this keyboard for you so you can start to heal.” And he did. I’m so grateful I have such a wonderful husband, who supports me when I need him most. Most people would find any mental condition hard to accept, as there is still stigma attached to them. However, he hasn’t. He has stuck by my side.

I have a lot of support surrounding me, and I think with time, I’ll get better. It helps that I have a lot of resources on hand, because of this blog. I will continue to do my research and try not to stress about it too much. Hopefully, I get that appointment set up soon.

6 thoughts on “Dealing with Psychogenic Non-Epileptic Seizures

  • July 12, 2013 at 9:19 pm
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    I received a google alert when you posted this because I am always on the look out for PNES on-line. I thought this might be a research article when I clicked on it. Was happy to read your post. Wish you the best. Some resources specifically for PNES are my website: http://www.nonepilepticseizures.com/ and I also write a monthly blog in which I have addressed PTSD issues in PNES (you can access it from the website). Wish you a lot of luck with your therapist.

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    • July 13, 2013 at 9:26 am
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      Thank you! I am definitely going to check out your site, as I would like to get as much information as I can.

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  • July 13, 2013 at 8:04 am
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    I was dxed with PNES almost 8 yrs ago. I also have epilepsy too.

    It has been very difficult for me and my wife, more me than her.

    My PNES type seizures are far more destructive to me an my health after it happens.

    I have never in my 50+ yrs of having seizures been so beaten down that I have lost my self esteem, my attitude towards others have changed.

    I will stop here for now.

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    • July 13, 2013 at 9:32 am
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      I’m sorry to hear you also have epilepsy along with PNES. How is your PNES destructive to your health? I have trouble breathing afterwards, and my legs are just jelly.

      What kind of treatment are you doing for your PNES? I understand why it’s hard on you, there’s still a stigma attached to PNES apparently, as I got that vibe from the neurologist that gave me the diagnosis. I’d never felt so crazy in my life. Does it interfere with your activities?

      I start my therapy this coming week, and my keyboard arrives in a few days. I am hoping that this will help me heal.

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  • July 13, 2013 at 11:40 am
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    I have been dealing with pnes for 3 years now. My symptoms start with dizziness then blurred vision then the seizures. O have been seen by the best doctors. Numerous eegs and everything that goes with it. My neurologist referred me to a psychologist and vice versa. I’m stuck been in ICU two times. I have had 39 seizures to 50 in there. They are very debilitating. It takes me at least a week to just feel somewhat normal. Had promising career now shot down the tubes and 3 little ones to support. Still no answers. Thank you for this blog. Btet

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    • July 13, 2013 at 2:14 pm
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      Wow, 39 to 50 seizures in the ICU? That’s insane. I really hope you find answers, because nobody deserves this. There’s not a lot of information on this, because it’s considered a mental disorder rather than a neurological disorder. I do highly recommend that you find something calms you, and give yourself an hour. Whether it’s playing with your little ones or going for a jog. I’m excited for my keyboard because I think it’ll help a lot, but at the same time I’m nervous because, what if? There’s a lot of what ifs with this condition, and it sucks.

      I am somewhat happy (though I would wish this on no one) that I am not alone out there with this. I felt very crazy and alone, and the response to this post has been amazing.

      Reply

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