Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

Psychogenic non epileptic seizures and PTSD

According to an article by PNES specialist, Dr. Marcus Reuber (2008), 90% of PNES sufferers have a history of trauma. Not surprisingly, many present with symptoms of post-traumatic stress disorder (PTSD). This means that they have intrusive symptoms (e.g. nightmares, memories), avoidance behavior (of reminders), and hyperarousal symptoms (e.g. startle response, hypervigilance for danger).
Research of PTSD suggests that intense life experiences (trauma) may literally transform the brain. Parts of the center of emotion (limbic system) appear to be more active in many patients which could explain why patients have heightened fear and vigilance for danger. Better retention of emotional memories could also be explained by this since the “memory centers” are nearby. The prefrontal cortex (the part of the brain that helps us problems-solve, control our emotions, and make decisions) appears “deactivated” which could explain why rational problem solving and emotional control is often not working as well as it should. Less activity of the left hemisphere (which is used for processing of words in most people) may explain why persons with PTSD have trouble finding the right words when they speak. Smaller sizes in the memory structures in the left (that allow us to remember words) have been reported and could explain why patients often have trouble remembering words they heard while they can remember things they saw.
Measurements of the “stress hormone” norepinephrine are higher in many persons with PTSD. Norepinephrine affects our fight or flight response: raises heart rate, increases blood flow, and raises glucose levels.
These neuroscientific findings lend us direction for our psychotherapy designs and support some of the psychological theories that are already around. Based on this, psychotherapists confirm the potential value of using a treatment plan that has the aim to translate these bits and pieces of visual and sensory memories into words. By doing this, it is possible that what may be happening is that these memories are being processed by the prefrontal cortex, are “filed away” in a sounder way, and weak verbal skills are strengthened. Now we need to see how this research on PTSD may also help us in working with PNES.

19 Responses to “Psychogenic non epileptic seizures and PTSD”

  1. Lorna says:

    Recommended reading: Th Neuropsychology of PTSD: Biological, Cognitive and Clinical Perspectives (2005)

    • salbiah says:

      Are there any successful treatments of PNES?

      • Beth says:

        We’ve (my husband and I, he being the one dx with PNES) have been seeking answers, treatment and/or therapies for almost 2 years since his sudden onset of seizures at the age of 44. We’ve been to more hospitals than I can list and have seen a variety of psychiatrists, psychologists, and neurologists… the initial diagnosis was not delivered in a very positive and reassuring manner as it is suggested by the many credible Websites I’ve visited. We finally stopped going to the hospital, they did nothing for him and have even, at times, suggested he was “faking” these horrific and debilitating “events” (which is impossible, I have video and he has symptoms that cannot be “faked”). Even though “they” (the many different docs) say the seizure meds do not help him he is still on three different medications (which does help him go for at least a month without a seizure-off of them, he seizes continuously and was DX with Status Epilepticus due to them stopping the meds). He has also been put on “Seroquel, Zoloft, and Xanax in addition to. I assume they are trying anything they can just so they can get the “seizures” under control. He’s been in therapy for about 6 years, but has since added an additional psychotherapist who is going to perform EMDR Therapy for the PTSD. They hope by getting the PTSD under control, the seizures will therefore be under control. We feel like Lab Rats, he’s had several EMG’s and VEMG’s, all with no electrical activity showing up. The only hope we have is the therapist (and the medication, which helps but does not control. But at least he can function somewhat). This has turned our world upside down and changed “life” as we knew it, as well as our children’s’ lives. If you have PNES I pray for you, and I hope for you, and I wish the best for you, because this is a nightmare no one should have to go through. There’s not much research being done (some docs say because it’s rare while at the same time others say PNES is common).??? Hang on to any hope you have. Answers are rare, apparently as “rare” as PNES.

        • Adam says:

          Hey my name is Adam and I have also been diagnosed with phsycogenic non epileptic stress disorder due to PTSD and TBI. Luckily I came across a bunch of good doctors at the VA hospital in Houston Texas. If it helps any they gave me divalproex and have been seizure free for 3 months. As long as I take them as prescribed I am fine

        • Paul says:

          My name is Paul and I am 50 years old. Last year on May 2nd I suffered my first PNES eppisode, or the first one I know of, and the next month was utter hell. ER after ER, test after test, study after study, Doctor after Doctor. It seemed like I was stuck in a revolving door of medical mystorys. If it wasn’t for my wife and kids I may not have made it through. Until the day a Psycologist with 40 years of treating Vet’s with PTSD told me everything I was going through before I told him. From that day on, the light at the end of the tunnel has been getting brighter. He ignored most of the physical symtoms and treated the underlying cause, my PTSD. It took a few months to fine tune my medications before we found the combination that worked for me.

          ( Cymbalta for the conic pain and depression that I was in; Buspirone 30 mgs and Catapres-TTS-3 for the emotional turmoral caused by the PTSD, and Prazosin for the nightmares)

          This combination has kept me seizure free for for almost 10 months.

          Please do not give up hope. There are doctors out there that have been dealling with this condition for years, even when the rest of the medical community had turned up their faces at it.

          • Lonnie says:

            Paul, I am a 37 y/o veteran from Bosnia, Iraq wars with PTSD. I had 3 grand maul seizures this last year (2 back to back). I need the contact info of your great doctor

        • Chris says:

          Hi Beth, My name is Chris I am 37 years old and have been going through the EXACT same thing plus so much more… You are so right about it turning the world upside down… I lost my job and had to go on disability and then almost lost that because they thought I was faking … It is so frustrating.. Me and my wife have 2 young girls who have both been traumatized by this… we would love the chance to talk with you and your husband as we do not know to many people who have had the same problems almost to the tee… thank you for your time

        • F. Lynn Marrs says:

          Hi Beth
          I have somehow never heard of PNES, but think it might be my answer. I had my first grand mal seizure at age 23, while in the hospital for hereditary pancreatitis. Having never had a seizure before , the docs thought it was due to my electrolytes being out of whack. My potassium was low and I was on an NPO diet restriction which greatly restricted any kind of real calorie intake. That was it until I was 28 . I was living in NYC working in the fashion industry. I worked and traveled a lot , but slept little. During an especially crazy, hectic time ( right before first showing of spring line and fashion week) I had a grand mal seizure while standing in my office. I was not alert until surrounded by paramedics. Then it took a long, long time to be totally lucid. I was hospitalized for a few days in which I had yet another grand mal. Upon release of the hospital I was placed on medication and follow up with a neurologist. However, it still did not seem to really rattle me as I still saw these as isolated events. Furthermore, I lived in the city so I was not driving anyway. Plus I was young, not married, and responsible really for just myself.

          Flash forward 14 years and I am married with 3 precious kiddos. We are at my sons’ soccer games and my husband is on the field coaching. As I was sitting on the quilt on the grass with my girlfriends and cheering the little guys on, I had a 6 minute grand mal seizure. Again, I knew nothing for a long time and then slowly I would recognize things even if I did not know the word for them. Yet again CT and several MRI’s were done ( I could not stay still for them apparently….. I was still so out of it) Of course nothing is found. I spent several days in the hospital for testing. I was released on 1 anti seizure med which made me really stupid. After 6 weeks or so I switched to Keppra . That made me moody and I eventually switched to Vimpat am and pm doses. This has had the least amount of side effects. But 6 months later in Nov 2012 I had another. ( right before I was about to drive again)….. So 6 more months until driving. Well the week before my 6 mth mark I had a grand mal and landed head first in the swimming pool. My husband had just pulled into the garage. I was under for at least 40+ seconds. When I finally started coming to this time ( and every time since) I was terrified. Of what I don”t know. And again I was aware that I knew certain things, but I could not say them or put them into words. I looked at my children and kept telling my husband that I knew their names……… But I just could NOT say them. It was truly heartbreaking. More scans, tests, a morning of double vision and four months go by. On Aug 16, I had a grand mal while talking on the phone to a girlfriend while making the bed. Apparently I make a loud scream/ weird sounds and then crash. She said I was very quite and not responding to my name and then the scream sounded. She called my husband and children and raced to my house in the neighborhood. My kids had turned me to my side. Again, an exhausting day where my body feels like I competed in IronMan and I am just sleepy and out of it the whole day….. And then some. Following evening I was feeling good ( sore and banged up, but good)…… We spent the evening with our neighborhood friend families swimming and BBQing as a last summer get together. We had a blast. We all get home and kids are putting on PJ’s. I am in guest bathroom and fall off toilet. Then the really scary thing is that my speech was non coherent . I was writing everything down…….More scans and tests…….3 nights later I am at Barnes and Noble with my kiddos. My husband is waiting for us in the car. Apparently I have another one which checking out. Again, I do not wake up until surrounded by paramedics asking a million questions. I still don’t know much of anything , but realize I have had another one and am devastated . They actually put me on stretcher but I sign not to go to hospital. I really don’t know how they accepted my word, but I guess with my husband saying he would handle it , they let me go. ( thank goodness)…… They just rolled the stretcher over to the suv. Yet again I am totally terrified of I don.t know what. ( also I was the other 2 times that week)…….. And even your dreams are hard core and scary for like it seems days and days, but probably just hours and hours.
          2 days later I finally see my new neurologist, on Friday. Automatically, he wants me to go in patient to the hospital Monday morning for EEG and video monitoring to try to catch something electrical. His plan was to slowly wean me off my meds in hope I have a seizure. I went in on Monday morning. It is now 4:30 AM Saturday morning and still no seizure…… Though my head hurts. I always have severe headache after seizure, but usually not this far out. I am thinking it is either as a result of having 3 so close together or coming off meds, or both. Anyway, I too have been diagnosed with PTSD…… It has never been suggested to me that there could be a correlation. But, after reading what you had to say I now really wonder. We so desperately want answers. As you said, this is so difficult on the family. My husband has to drive everywhere and do dbl time on so much. My kids must be traumatized, although they say the are not scared. Heck, I am scared, now. I simply cannot imagine being 6, 9, or 11. So anyway that is my LONG winded story. Sorry I threw every detail in there. Brevity is not my strong suit, as my hubby would you ! However, I wanted you to know all my history/ facts if you would like to communicate via email. It is just so refreshing to read something you thought no one could possibly relate to. I would love to have some correspondence if you find time. Thank you for posting your story. It has meant a great deal to me. I look forward to educating myself on PNES and whether or not this might be exactly what i am dealing with.
          ( oh, one more thing is that I never have any sign, smell, or other type indicator that a seizure is about)
          F. Marrs

          Ok, I finally see my

  2. This is the most thorough and satisfactory description of half my condition. The other half is frontal lobe epileptic seizures. It’s all beginning to make perfect sense, even though it is unlikely that the “original insult” will ever be discovered (not enough time to take the trip….I’m nearly 68, and learning to live with a new and more accurate diagnosis). Many thanks, Lorna :-)

    • Lorna Myers says:

      Thank you Richard for your comment. Stay tuned for new posts.

    • Gabriella says:

      Frontal Lobe Epilepsy?

      My brother has frontal lobe epilespy from a tbi which resulted in lesions on his frontal lobe. It’s very difficult for him to live a normal life because of what’s happened to him. My family and I care about him a lot, but my parents are at a loss, and keep telling me there’s nothing that can e done to help my brother. I just do not want to believe it.

      Could you please share more about you and your condition.

      Email gabriellaschultz2@gmail.com

      Gabriella

  3. Ashleigh Davis says:

    I must say this is making things seem so clearer. I am 24 and have been suffering from tonic clonic and partial seizures since i was 12. Every test or scan ive had has alway come back as nirmal functioning. I have never even to this day had a proper diagnosis and was simply told i had epilepsy as the doctors were stumped as to what caused them. I did have a traumatic childhood which i dont like talking about… and have been experiencing memory and sentence structure problems recently… maybe this could be a possibility for a diagnosis??? I will be enquiring about it next consult with my neurologist!

  4. Elizabeth Bowman has written quite a bit about this. If you seach, ‘psychogenic seizures Elizabeth Bowman’, you’ll get access to part of an article she wrote in the book, Psychiatric Issues in Epilepsy, a practical guide to diagnosis and treatment, by Allen Ettinger and Andres Kranner. Elizabeth is also an excellent clinician, and could be a good source for treatment or consultation.
    I’ve had clients go into seizure in my office, and for them it was due to stress. One person felt it was somewhat like a panic attack – fear triggered it for her. For others, they would go into seizure when they were completely emotionally overloaded. All of these clients were trauma survivors, and dealing with the trauma reduced, and then eliminated the seizures.

  5. Kim says:

    My 20 yr old daughter has been having non-epileptic seizures for 10 years. I had no idea until a week ago that she had any kind of trauma in her background at all. Since she has told me about the trauma she experienced as a child, it all makes sense to me. The problem is getting a diagnosis or medical help since she lives on her own and has no medical insurance.

  6. Shelia says:

    Thank you all for being here. I started having seizures in August of this year and have been hospitalized twice because of the severity of the seizures. My MRI and EEG both came back normal. The last hospitalization the doctors told me it was stress induced, I have recently changed nuerologists and he is recommending the VEEG to determine the type of seizures I am having. I was diagnosed in my 40′s with childhood PTSD, which the doctor gently explained had changed the wiring of my brain. I did not really put the two together until I found this website. Again thank you.

  7. Shelia says:

    A little to late to put the pieces together. Looks like the VEEG may be put on hold since I am losing my job and health insurance due to the siezures. I just turned 56 over Christmas and have not been able to drive since August. This along with my age and the seizures will put a damper on finding gainful employment. I am frustrated because I have worked so hard most of my life to be a good worker and be reliable. Now because I don’t have a definitive answer as to what is wrong and cannot contro when I will have an episode as one nuerologist likes to call them I am screwed.

    • Melinda says:

      Dearest Sheila – I, too, lost my job at the age of 56 due to PNES. I did 3) things: 1.) what caused the seizures – stress from work caused them for me thus I pursued FMLA and rcv’d an extension of 18 months – thou, having to pay COBRA eventually. 2.) Went to 3 neurologists for sleep deprived EEG/CD reading..BE CAREFUL thou! First doc read the EEG and said seizures and prescribed Keppra.. (NO DRIVING, ETC.) other Neuro docs read same EEG and said “Couldn’t even read ANY seizure activity and get off Keppra immediately! I kept all doc records including psychiatrist and therapist..what I was experiencing was PTSD, (trauma) and PNES, NOT EPILEPSY! 3.) I applied for Social Security Disability and rcv’d it within a few months I am now on Social Security Disability, still having to pay COBRA, (18 months) but up for Medicare in April! Hang in there! There ARE SOLUTIONS for YOU!!!

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  9. L says:

    I too suffer from seizures from PTSD. Mine didn’t happen all of a sudden. There was first some abnormal brain stuff, like big tension headaches. I saw a doctor who did an exam, and ruled out any serious head injury, which is a mistake I know realize. I would suffer tension headaches and what felt like changes to the brain for sometime (in one instance I thought I was preggers because I couldn’t keep stuff down, and my since of smell had changed). Yes memory loss has occurred slightly, like more easy to mix up names after coming down with PTSD, which was confirmed by 2 doctors from a job bully. Then over a year I started having seizures while sleeping related to PTSD. I am dealing with them, but its a learning process, and its good to read all the other comments here, since so often we go through these things alone. The doctors I have consulted all seemed to be learning from me how to treat the condition I have, which feels weird. Those who have experts at the VA are lucky, as with your treatment there is less experimentation.

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