Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

Treatment for psychogenic non-epileptic seizures: Love and light

This first half of this post is from September 2014 and the second portion is from June 2015

lightMy name is JJ and I am 22. My seizures have been a sporadic problem since I was 13. They really became a problem December 2013. I had quit drinking in September, I later discovered my alcoholism was suppressing my seizures. My seizures became unbearable, I was unable to do the things I used to, I began seeking and searching for answers. Every time I would go to the hospital they would tell me I was “faking them for attention.” I had one nurse tell me if I didn’t stop she was going to cut my shirt and she cut my shirt for no reason.

 

My therapists, psychiatrist, and neurologist were at a complete loss of how to help me. My mom ran across Dr. Lorna Myers in her search for help. She purchased her book, read it, and then gave it to me. As my life continued to slip away from me, I knew intuitively that New York was where I needed to go.

 

After speaking with Dr. Myers via phone I knew we needed to go as soon as possible and within a week I found myself in New York. By this time I was having on average 35-50 seizures a day. After being hospitalized in New Jersey for a week, having some medication adjustments, and a proper diagnosis of PNES, I began treatment with Dr. Myers.

 

This is when I was exposed to INVIVO Exposure and Prolonged Exposure therapy. This was one of the hardest things I have had to do in my life; as Dr. Myers said in the beginning “we speak the unspeakable here.” I have endured a lot of trauma and we began to process one specific trauma that happened as a child and we continued to work on this specific trauma using pictures, speaking about it, and listening to it. I continued this treatment with Dr. Myers for four weeks.

 

I am back in my home state now and will be continuing Dr. Myers’ work with an individual who is trained in the same type of therapy.

 

I am now able to control my seizures they don’t control me,  I now have 0-10 depending on the day, and I know they will continue to decrease the more I face my fears and trauma head on.

 

I was also in school during this time, I graduated three weeks ago! I have had the privilege of inspiring others through my story and journey. I feel that all of my experiences have happened for a reason, I now have public speaking opportunities, opportunities to help with numerous books, I have been able to reach others and give them hope through their struggle with PNES, and I look forward to continuing to heal myself and to help, heal, and inspire others.

UPDATE 6/26/2015

Hello, Dr. Lorna Myers asked me to share some of the tremendous progress I have made over the past several months.

As I mentioned in my previous post: When I came back to home, after treatment in New York, I sought out a psychologist who believed in and practiced similar treatment. When I returned although I was still having seizures daily, they were not nearly as many as before I went to NY.

Since coming back home, I experienced a lot of stress.  I moved three times over a few months and had a few traumatic encounters. As many PNES sufferers know, the fear of seizures being amped up is always present. Luckily though, none of this affected my seizures for too long and I am now four months seizure free! I also have a job.

In regards to therapy: I remember Dr. Myers stating something along the lines of “if we address one major trauma, often times it will resolve the others”. I remember thinking, “that would be really nice but I have SO many different traumatic experiences to address, so I don’t foresee that happening”. I am happy to say that IS what happened.

Last week my doctor gave me the same test that had been given to me around the time of my last blog post to assess my PTSD symptoms. My doctor was curious to see where my scores would fall now in comparison. She looked up at with a big smile and said “if you were to walk into my office today, I would tell you that you do not have PTSD”. What an amazing thing to hear and to feel as well. I no longer have symptoms of PTSD like I used to.

Prior to taking this test, I had an encounter with a former abuser. The last time I saw this person in a public setting, I had a panic attack, started shaking, had to leave immediately, and had a seizure while sitting in the car. THIS time:  the individual was arm’s length away from me before I even noticed. I looked up, looked them in the eyes, smiled, and just continued to shop. This time, they were the ones who turned away and left without continuing to grocery shop. This was a true victory for me and a testament to my hard work. It is one thing to overcome a traumatic experience. It is another to look that individual in the eyes and show them kindness and to not have fear anymore. I was not going to waiver, I have come too far, I am strong, and I deserve to be free.

I am also blessed to now have someone in my life who loves and respects me for who I am. I am grateful that I took the time to work through what I needed to before getting involved in a relationship. Now, that part of my life can be the past. I have the rest of my life to look forward to.

I wasn’t able to write the first half of my life, but now I get to be a part of writing the rest of it.

Life can be so beautiful, don’t forget to find something to be grateful for each day.

Love & Light

8 Responses to “Treatment for psychogenic non-epileptic seizures: Love and light”

  1. Claudia says:

    Thank you for sharing. As a mom with a daughter and PNES and PTSD I know how difficult your life has been. I hope you will continue to speak out – it brings so much hope.

  2. Katie Rowland says:

    Thank you so much for posting this. It shows there can be a light at the end of the tunnel. Something amazing to hold on to.

  3. Jordyn says:

    Thank you both SO much I am glad that I was able to offer light and hope! It is there, I promise.

  4. Kelly S. says:

    Wow JJ,

    I am in awe of your triumph!!! My hubby, the love of my life has been suffering for years with PNES, and that was made worse by having the traumatic experience of having to have brain surgery for an aneurysm.
    I am his constant advocate. WE have been through hell, including almost losing our home, and having Bob lose his career. Our marriage and family have been through hell, as has my husband. I came across Lorna’s book, and ordered it. I immediatley e-mailed her, and she was willing to see us, and even gave us a closer option in Boston with another PNES program. Of course, none of my hubby’s drs at Dartmouth have any idea that there are treatment cenetrs in our area.
    Anyway, I cam across your blog after e-mailing Lorna. You have given me tremendous hope for a better future for my husband, our family, and our marriage. I can’t thank you enough for your willingness to share such a personal experience. I hope you continue to improve, and God bless you JJ.

  5. Kyra Wissing says:

    Thank you so much for sharing your story. I’m a 14 years old girl from the netherlands. And I’ve PNES to. Nobody feels what I feel. I’ts one big stuggle… I’m in therapy but there are no results. No traumatic things or stress. I’m waiting for answers from myself. Thankyou.

  6. Jordyn says:

    Thank you both very much. I am grateful every day, things can, will and do get better! Thoughts, prayers, love, and light.

  7. Jordyn says:

    Thank you both so much, for sharing your stories! I am so grateful, for my life today. Things can, will, and do get better. Just continue to put one foot in front of the other, no matter how dark the path may feel. There will always be a light somewhere. Thoughts, prayers, love, and light to both of you!
    Jordyn

  8. JJ !
    I am in awe of your story and in awe of all the hard work you did! I’ve been a therapist for over a decade and never heard of PNES. But now I work at a facility that diagnoses and treats PNES and I am happy to learn more. Thank you for your story!
    Hugs, Kathy

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