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.
Recommended reading: Th Neuropsychology of PTSD: Biological, Cognitive and Clinical Perspectives (2005)
Are there any successful treatments of PNES?
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.
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
Hi Adam,
I know this post is 4 years old, but I really hope you get a notification about this. My bf who is a combat war vet was Dx with PNES. He also has TBI and PTSD (90% mentally disabled). Plus depression and anxiety. He also has a history of childhood trauma.
Can you please give me any information you have in regards to the doctors you worked with at the VA.
He did some hyperbaric oxygen chamber treatments in Colorado a few years ago and the seizures stopped for a couple years. But recently they’ve started again. 2 – 10+ seizures a day lasting a minute to several minutes.
I’m trying to get him to find a therapist for cbt and start a clinical trail in Stanford. But I’m not sure what else to do besides educate myself. The VA system is very challenging to navigate. Any help from anyone would be greatly appreciated!!
Hello, thank you for your post. As a veteran, your husband should be seen at a Center of Excellence for epilepsy – the VA system has 16 and one is in San Francisco. http://www.epilepsy.va.gov/ecoe.asp
The Veteran’s Administration has conducted massive training of their mental health providers in a form of treatment called prolonged exposure that is one of the most effective forms of treating PTSD and recently, we published a small series of 16 cases of patients who had both PNES and PTSD-results were promising. This is the article: https://www.ncbi.nlm.nih.gov/pubmed/28038392
Your husband can request this treatment.
If you want more information about PNES, you can look at this website: http://nonepilepticseizures.com/epilepsy-psychogenic-NES-information.php
You may also want to visit our Facebook page and “like” it. We make announcements here about upcoming events and news about PNES. https://www.facebook.com/Psychological-Non-Epileptic-Seizures-144184112260986/
Wishing you the best
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.
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
Paul, my daughter was diagnosed with Epilepsy just June of 2012 at the age of 36. But she has only had six grand mal seizures. We believe after watching her for these two and a half years that it is a mental condition also, great depressin?? She is fatigued, loss of balance, difficulty finding right words, slow to process as she speaks, she sees double when it comes on and by coming on I mean some numbness,tingling and now double vision. And now, most recently she sees things move that she is aware are not moving, but she seems them move. And on her menstrual cycle she would sleep 24/7 but we try to get her up and keep her up a few hours. But this last bout she sleep 20 hours a day for twelve days. Does any of this ring true for you? Your symptoms?
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
Chris could you share how you finally got approved? I have my hearing Feb 25th and am already facing an area with some 94% denial rate My attorney says it’s hard to win a case that’s mental in nature. I don’t consider seizures where I’m unconscious strictly medical. I’ve already sustained a dozen injuries from them. Thank you
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
F Lynn Marrs and Miranda. You are not alone. My daughter was diagnosed at the age of 34. She has only had six grand mals but the rest of her life is affected in other ways; extreme fatigue, difficulty finding right word, slow to process her thoughts when speaking, losses track of time, double vision, recently has begun to see things move that she knows are not moving but still “sees” them move, and the worst thing that affects her husband and two boys 8yo and 12yo is that during her menstrual cycle she sleeps non stop and it is like she is under layer upon layer upon layer of fog when you try to wake her up. It seems to affect that part of your brain that alcohol affects because if you didn’t know her you would think she was drunk. This last time was the worst of the past 2 and a half years and she slept basically 20+ hours a day for twelve days. We are beginning to think that it is psychological as she has been able to share with us she is deeply depressed due to what you shared, Marrs, the almost obtaining driving (freedom) and then having a seizure just prior to plus the way this has affected her life, her mothering, her being the kind of wife she wants to be etc. I live close by to them so that I can help. She has some pretty great friends who reach out and help plus some that live on same street. She is not alone but feels VERY ALONE. I just happened to stumble across this site. If either of you will respond to me I will see if my daughter would be interested in sharing her story with you. Marrs, your story is very similar to my beautiful, sweet, intelligent daughter of 36 years.
Beth….I thought I was the only wife in the world who is going through this!!! I would love to talk to you! Email me. mleepaschall @ yahoo
I had 12+ years of what was never diagnosed as pnes, but rather as hysterical conversion reaction, faking, seeking attention, etc etc etc…once however, I can remember I was partway through a ??? (seizure activity test? – sorry, my memory is so messed up, but it was lights…and so on) and I seized, the nurse who was assisting produced what I think was a C tuning fork and she placed the vibrating fork onto my forehead, believe it or not, it calmed my system enough to be able to finish said exam…however, due to a multitude of other medical issues that also needed attention, we didn’t follow up and get the tuning fork, in hindsight we should have because it truly did work – at least on this single occasion. Perhaps this will be something you may explore – would love feedback if you do. I was also on klonopin (some help) however the only really effective (to the degree it lessened symptoms if I took enough pills – which varied from PNES to next episode). The klonopin was .5 mg sublingual and there were days I ended up taking up to 8-9 at one event, and perhaps the same amount during a second or third event in the same day. Not an optimal choice I do know, however, it did work – again, just learned how many to take by trial and error, but most of all dosage/pnes episode was also guided by it’s effectiveness (i.e. take 2/3 while in midst of episode (this was why sublingual was the only effective dosing strategy – my mom would pop them under my tongue – then we would wait a tiny bit and see and then just keep it up until the episode had finished (honestly these could last up to 1/2 hour and would leave me exhausted – no kidding =O – but also in full muscle spasms which would contort my body into exquisitely painful positions. From there the next step would be for my mom and myself (to the degree I could assist) to get me somehow to bed with a heating pad (I was always freezing cold after such events) and then the Ativan would send me into a deep sleep which was “THE ONLY” way for my body to release the muscles from there dramatic contortions. I do know how horridly shameful, embarrassed – at times furiously angry and resentful – I was with the myriad of specialists I sought out and even travelled out of Canada to seek some type of respite for these PNES and many other symptoms. That was what I (and any rational people who happened to witness/ try to help me) knew were real and confounding and embarrassing and painful emotionally and physically (emotional was far more painful thought). This however became a bad time in the past in comparison to my current situation more than 14 years on…complex ptsd – I was a child from a severely dysfunctional/alcoholic father and in hindsight, I can now see the dominoes all lined up and tumbling one to another…This PNES + other medical problems became severe in 1989 when I WAS 26 had graduated college in LA, lived in London and then Sydney Australia where I felt safe and like I had found my place, I had been sponsored for immigration and things were going well – I however was asked to leave the country and return to Canada (never given a reason) and then reapply from home from there I would be granted full status for immigration. However, that was my undoing…back under my father’s roof…I didn’t know it then so from 26 to 39 I suffered as mentioned above as well as was bedridden and confined to wheelchair and unable to walk. Who knew, now it makes sense…except I am now 53 and my life has totally unravelled into the abyss of complex ptsd, not just from childhood, though that was the foundation that I took with me into the world and which set the stage for time after time of further trauma, abuse, accidents, medications, pain, emotional problems and misdiagnosis.
I felt compelled to reply as your heartfelt and extremely emotional and touching ending to your post hit me like a Mac Truck…I believe that anyone who HAS NOT been unfortunate enuf to go through what I know you are being forced to fight with (not only is the illness/symptomolygy exhausting and terrifying) you then have to fight the friking medical community. this is a fight you can’t win, as you have been forced to reckon with.
PLEASE, PLEASE PLEASE DON’T GIVE UP – I am still here, still fighting, still trying to live a life of promise — not even sure what that will look like but I have somehow been able to always keep a tiny kernel of hope alive somehow. I’ve always believed that this isn’t how I am supposed to live and that “one day”…. Now, it’s hard to keep that flame alive as it flickers so unsteadily. I am stuck, but I never stop hoping, and I always kept trying to learn as much as I can about what might help, what might be the “WHY”…
I wish I could say I will pray for you, I can’t as the ptsd has even robbed me of my comfort of faith…But I can promise you I am sending not only thru this reply but through the energy of ??? the earth, I guess, all the hope and wishes for your burdens to be eased…If you want, you could send back a reply and perhaps we could connect online. I have 25+ years of experience with this and 53 of PTSD, I know a lot and I have such empathy for others suffering (a tremendously valueable GIFT of suffering and yes, I believe it is a gift). If I don’t hear back I wish you well, I wish you peace, I wish you health and a future that leaves this horrible period of your life in your PAST. Hold on if you can, trust in each other, it is the support that only a deep and unconditional love can provide that will see you through this ordeal.
Please take care, take hope. xx
I am 44 now and 3 years ago began with PNES. After spending a week in the epilepsy center they determined that while I experience lack of consciousness my seizures were not epileptic in nature but rather related to PTSD from abuse and rape. My life has been upside down since I was pulled from work 3 years ago, lost the ability to drive, lost all income, and have watched my daughters suffer as a result. I’m approaching my 3rd and final disability appeal at court and have been advised that it is very difficult to win a disability case that is mental in nature. It’s amazing to me that while my neurologist has declared me unable to work (or…cook, climb a ladder, etc.) due to my seizures and the injuries I’ve sustained from falls a judge can say otherwise. This leaves me where? After all I’ve been through I feel as though the state is putting me through a whole new type of abuse. Trying to get help has been enough to make me crazy and I feel as though I’ve lost everything. I’ve worked since 15,have my college degree, owned my own business and now I’m being treated as if I’m nothing more then some psych patient that is everything less then human. I hope that you are able to get the help you deserve as this is no way for anyone to live. Have you tried DBT?
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 🙂
Thank you Richard for your comment. Stay tuned for new posts.
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
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!
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.
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.
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.
I just now connected pines and ptsd Have been treated for clinical depression anxiety blamed for pseudo seizures. Was also diagnosed ptsd but no treatment now see need to treat PTSD as well.
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.
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!!!
Shelia I am so sorry to hear what your going through and share in your frustration. I too was pulled from work 3 years ago by my neurologist and lost my insurance. I’ve since had to go on state insurance which I’ve found has just about kept me from getting any type of specialized treatment. I pay out of pocket for DBT training and I do see a psychoneurologist once a week. I’ve had to look into the local psychiatric hospital for abuse/trauma therapy where you’re evaluated for both their inpatient and outpatient programs. Let’s just say it’s been 3 weeks and I’ve heard nothing even though I was supposed to hear back within 2 days after my intake interview. Now I have to ask what type of society we live in when even the psychiatric hospitals fail you. I told my therapist today that it was a good thing I wasn’t on the edge of the roof when I called.
Please don’t give up. While a good majority of society has placed stigmas on us I’m realizing that there are many more people suffering from the same issues then I had thought. I’ve had to turn to forums and sites such as this to connect with others who can relate to and understand the importance of the struggles that this diagnosis has presented. In my prayers
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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.
I have been having episodes since early childhood. I recall waking up in places that I didn’t go to sleep in and losing large chunks of memory and time/place. I recall experiencing my first seizure at age 12, although I was not aware that was what was happening at the time. I had more episodes later in life that I had no idea were seizures due to amnesia after the event until the age of 35 when I had a severe grand mal and nearly broke my neck in a fall. My husband witnessed this event and several prior that we reported to our Primary Doctor. We were not believed until the worst happened and I had a gash that cut to the bone above my brow and temple. I was recently diagnosed with frontal lobe epilepsy, PTSD in conjunction with PNES and Dissociative disorder. I was informed by Dr. LaGrange at Vanderbilt that it was a very rare case and one that could used for research. I am very confused and frightened. I am ready for my life back and to stop having my life, the lives of my family decimated by this. Has anyone else experienced anything like this? I live in a fugue state for days up to weeks following my seizure, often with no memory of anything at all. It is frustrating and frightening. I am sick of feeling out of control of my own life and have no desire to be a lab rat.
Long time away. Found gainful employment with health insurance and medical accommodations for my disability. Diagnosis PTSD w/PNES. Great therapist.. but still not seizure free. I will say though the seizures are not nearly as frequent or as hard to recover from as they were in the beginning.
I suffer from PTSD and started having “fake” seizures is what the doctors called them in December of 2006. Doctors would do a test or two and then refer me to someone else. This went on for quite some time before my mom suggested that I go to the Mayo Clinic. They finally told me that these seizures are nonepileptic but are related to my military PTSD. I went back to the VA and have been bounced through every inpatient and outpatient therapy and a variety of meds and have had no reprieve. My seizures happen pretty much every day along with migraines, panic attacks, depression, insomnia, nightmares, dissociative episodes and more. It has completely turned my life upside down. Now I am told this is likely a lifelong problem but the VA in it’s infinite wisdom has lowered my disability benefits. I can certainly understand what you all have been through and pray that you can recover from this.
My daughter just passed away. After reading this we have NO doubt it was due to PNES.
She was brutally assaulted by a drunk neighbor. Hitting her in the face at least 10 times with a closed fist, dragging her down concrete stairs and hitting her again. Dragging her till her clothes ripped off.
She had flashbacks and seizures. Never had seizures before. Was diagnosed with PTSD but we didn’t know it. Received 2 weeks psychiatric treatment. If we had only just known. She was afraid to tell us about the flashbacks. I found page after page of her accounts after her death as I was going through her things.
Doctor couldn’t understand why she only had seizures at night. All makes sense now. Flashback, then seizure. Her poor little body couldn’t take the flashbacks of the assault. She passed away a few hours after a seizure at the age of 31. Just under 5 years after she was brutally beaten for no reason.
I wish we and her doctors knew about PNES so we could have helped her get out of her suffering. No more flash backs my dear daughter. I wish I knew what you were going through and how to help.
Wow, I wish you all the best. On July 12, 2016, my wife was expected with PNES, Her first ever seizure, and believability to the extreme stress of her job. She quit the job immediately, never returned to the job and life is clicking right along with her happiness. January 28, 2017 she never awoke from what is believed to be another seizure. She was a healthy, active 57 year old adorable wife and mother. I am not so sure she had PNES, and coroner is trying to figure out what happened, as she was in great health. I don’t intend to scare anyone, but keep searching for the correct diagnosis. As for me the pain I live every minute without her is immeasurable.