Research shows that a very high number of persons with PNES have suffered abuse in the past (see past blog posts). And experiences of abuse go along with distress and fear. So, PNES is commonly seen as fueled by anxiety and fear by clinicians.
However, I am sure you have heard of the “fight or flight” response that gets activated when we encounter danger. This response ensures that our body and brain get ready for evasive or hostile action to allow us to survive. Flight ties in with the emotion of fear. Fight ties in with the emotion of anger.
Both these emotions are necessary to ensure our survival and are useful throughout our lives. However, when they become overactivated and can’t come down even when the threat is long gone, we have a problem.
PNES is likely fueled not just by FEAR but also ANGER.
My patients often explain to me that they see themselves as “angry” and needing to control themselves so as to not explode or become overly emotional. But in order to control this anger and avoid a blow up, they often end up allowing others to ignore their needs or steamroll their rights. Logically, this only leads to more anger, resentment and frustration.
By bottling up anger you miss the potential value that anger has in the first place which is to alert you about something and defend you. There is another option to 1) explosive anger or 2) bottling up anger; the option is becoming ASSERTIVE. A person who is assertive is not a violent person. Assertiveness is being able to speak up for your rights, for your needs, ask for clarification, be persistent, and disagree. It takes practice but the good news is that you CAN learn to be assertive and studies have shown that it can improve your interpersonal life, your self-esteem, and your quality of life. Defusing lifelong habits and replacing anger suppression or explosion with assertiveness and anger management are important therapy goals for PNES patients.
i have never been abused in fact i have had a very happy life surrounded by love i do not suffer from niether anger or depression nor no i fit into any of the usual “profiles”for non epileptic siezures. My neurologist believes that my having suffered 20 years of illnesses and operations a couple of the illnesses being lifethreatening then major surgery followed a few days later by a major vasospasm which at the time was thought to be a brain heamorage as i was so ill that my central nervous system has just decided that basically it cannot take any more and therefore keeps malfunctioning to the tune of 20 – 50 siezures every day, dystonia and multi functional body disorder all of this leaving me wheelchair bound, needing 24/7 care and unable to do much for myself. I get really angry and upset with all non epileptic sufferers being grouped together and people assussming that one must have phsycological problems . I have had 4 weeks inpatient mdt where the phscologist and cbt theapist confirmed i have no imotional or physcological problems atall.
Hi Brenda, you are right that not all cases are the same. What is being reported in the current research is what is observed in the majority of PNES patients however there are always some who remain outside of this majority. If you read back on reports of abuse, ten percent do not fall in that category. You may count yourself as fortunate that this is the case in your history. However, for those who have suffered the abuse it is key that we recognize and work with these terrible events and memories that many times keep affecting them well into adulthood.
I agree with you. I was abused as a child but it is in my past and I am very happy. My therapist thinks its caused from my chronic back pain and the crap that was going on at my job and that my mind just said that is enough and I started having seizures. My therapist said I don’t need to see her any more because I don’t have any physcological problems.
I was diagnosed for 16 years with epilepsy and under neuro care with seizures that would not cease even tho medicated for it. It was first speculated the seizures were caused by a concussion in a car wreck I was in. After seeking therapy and counseling and informing the neuro and the counselors of all my conditions with sexual child abuse and the car wreck, I was advised to video EEG monitoring in an epilepsy center. I was diagnosed with PNES. I have since been diagnosed with PNES, bipolar, PTSD, and borderline personality disorder for all I endured. I have always bottled up my emotions for my youth days and am still learning how to control them and not let them control me and becoming aware of them all. I am learning to control my emotions now but after spending many days researching PTSD, seizures, and physchological conditions I know that my medical problems would have never happened if I had intervention and the abuse never occurred or someone would have stopped it and there was many involved that could. I do believe the fight or flight response does cause disorders and the central nervous system in the body to process life when someone is abused. But I also believe that PNES is still not given research of all the body functions in the heart, brain, lungs, and chemical processes as it should be. Even epilepsy is speculated to occur because of electrical brain waves malfunctions. Heart arrythemias can also produce seizures but are not classified medically as epilepsy when this is the origin. PTSD can cause seizures when deep within the brain it becomes inflammed by PTSD triggers or inflammation from processing life’s circumstances surrounding trauma based triggers. But until the phychological world of medical practice and the neuro doctors and medical doctors get on board together to research all aspects of seizures and why they occur this is only speculated documentation of what causes seizures. With each individual, seizures are caused by many reasons some medical scientific proof and some are not proven yet because the cost associated with finding the sources of internal origins of seizures are so expensive, no one wants to pay the bill or research to find out the cause of all seizures. I seek therapy and do the best I can but I do not believe everything a professional tells nor what I read myself. I only do what I can to preserve my own life now seeking understanding of my inadequancies of body functions and emotions for all I have survived. But no one will tell me that a child who endures abuse will not be altered in their human body because my illnesses and disorders are strictly disorders that were acquired by circumstances of abuse. No one will tell me that a PTSD veteran does not suffer medical inflicted disorders because of trauma circumstances and even those who suffer car wrecks, accidents and human body illnesses does not suffer in many of these acquired disoders. To me, seizures are probably the most ignored medical disoder there is. Even tho, much research is given there is so much unknown about it that no one should ever be classified in one group and each individual case should be treated for their case, not a classification that does not apply to all in generalizations. It’s medical malpractice as it’s cruelest forms on personal health and personal well-being not including the expense one tries to find in obtaining and sustaining a good healthy quality of life with medical care.
Cindy, you are so right that not all cases are the same. Some may recognize some of these aspects of PNES discussed above in themselves and not others.I agree with you that mental health and medical professionals should always strive to work together in a team approach. The progress that can be made in that way far outdoes the progress we can make separately.
Thank you for your comments.
Thank you. Your response really helped me. I have many similarities and am trying to figure out what triggers it.
Thank you for writing this. After being a lab rat and treated so poorly by doctors, I have found I am the best at figuring out what is the best for me. I send compassion to everyone who endures pnes and those who care for them. It is a hard enough mystery to solve without all of the associated stigma. I was diagnosed with pnes 9 years ago. It has been a rough battle. I completely agree, every treatment plan needs to be addressed and tailored to each individual in order to find answers. I have found many answers that work very well for me and even though it may seem hopeless at times, I know, I really know…the hope and the love and support of friends and family helped me not give up.
ignored? yup. It is 2017 and still nobody has a clue about my seizures. Not any further testing.
They won’t even let us legally smoke weed which DOES help.
Did you ever get any good seizure info?? Mine seem to be connected with anger episodes.
thanks
malou
This information is very informative to me. My boyfriend suffers from PNES and it is a strain for us at times. He often falls into cycles of having seizures and becomes upset because he gets seizures thereby creating a seizure cycle. I find, although I’m still trying to get him to a place where he’s comfortable exploring this idea, that his seizures are often triggered by disappoints that he realizes but does not appropriately process. He was mistreated growing up and has this unrealistic expectation of who he should be, which does not necessarily have anything to do with who he wants to be. But, if he doesn’t achieve the things he should be, he feels he has let people down. He doesn’t fight for himself, and I have a hard time not fighting for him (I’m a huge fighter when its something I want, or believe in). I think if he could learn to fight he would feel better, or if he at least didn’t accept disappointing events as if he didn’t really care to begin with – get angry, fight back! His seizures are not constant. They come and go at the most inconvenient of times. He is constantly worried that one day his employer will stop accommodating him, or that his seizures will increase to the point that he can no longer keep a job – worries that themselves cause him to have seizures sometimes. It is definitely a frustration for us. He does try to push me away from time to time because of his frustration with his PNES but I have to be strong and know that he is just venting internal frustration, its definitely difficult at times though. Thank you so much for your blog. The therapy ideas you present do at times relate to our situation and they create helpful avenues for us to try in seeking a long-term treatment.
Erin
You don’t know how much your response meant to me. I do not have anyone that understands or tries to learn more about PNES and Conversion disorder, and they think I am crazy for saying I have PTSD when I have not served in the military. It is so frustrating to know that you are an inconvenience or a problem. I have not worked since May 2012. I am in trouble with losing my job now. I don’t know what is best keep fighting or go on disability. But to have someone in my corner would mean the world to me. Keep on trying to be there for him. He needs you and he needs someone who truly understands and cares. You are special
Erin, thank you for your kind words and I wish you and your boyfriend find your way back to health quickly.
Lorna,
Very informative post. I experience PNES and Epilepsy on a regular basis. I know what the cause and triggers are in my specific case and am active in reaching others going through similar situations. I admire the work you do and hope to work with you in the future to bring peace and hope to millions suffering from seizures that may or may not be PNES related. Until we have that opportunity, I will pass your information on to all I service in the seizure disorders community online and offline. Through helping others find peace, I myself and finding peace with my own seizure disorders.
Peace&Power –
Terrific Tonya Heathco
I am Terrific because there is no other positive choice!
Terrific Tonya, I enjoy following your work too and hope we may meet one of these days. Please feel free to pass on any posts or information from this blog to your readers. I would also like to hear suggestions or comments from you if you have any to give me.
Please stay in touch.
Hi Lorna,
I’m very happy to find your site! Thank you! I have never discussed this online before, with any one with PNES or others with an understanding of the condition out with my health care professionals. I hope my post here can helps others with PNES.
I have been diagnosed with NEAD / PNES or functional neurology. My seizures or attacks are very severe and I suffer generalised weakness, my limbs are unable to move during the attacks so I can’t get to the loo or do simple tasks. I’ve been hospitalized a couple of times, one of my seizures lasted 8 hours and resembled or looked like a grand mal seizure.
I am currently receiving treatment for this condition and I am doing mindfulness training. I have been meditating daily for eight weeks and practice yoga regularly. These are great and fantastic tools. I was very lucky to receive a good explanation of my condition from my neurologist. My psychiatrist is excellent and it was he who introduced Mindfulness to me. I am half way through my treatment with him so I can update here if you like as my process unfolds.
Interestingly, throughout my mindfulness program my seizures have got a lot worse, however, I feel a lot better after them, having more clarity perhaps. Almost like they are getting worse before they get better. I have full faith in Mindfulness even if it may take a while for things to fully take shape.
Guided C.D’s:
http://www.amazon.co.uk/Guided-Mindfulness-Meditation-Jon-Kabat-Zinn/dp/1591793599
Excellent book:
http://www.amazon.co.uk/Full-Catastrophe-Living-mindfulness-meditation/dp/0749915854/ref=sr_1_1?s=books&ie=UTF8&qid=1344199342&sr=1-1
I suffered childhood sexual abuse and stalking and harassment from a neighbour from age 9 – 16. I was unable to tell my mum about it. My mum doesn’t respond well to many of my problems in life, she’d just rather not know. Usually if I did tell her or ask for help she’d respond with outbursts of anger and sometimes hostility, sometimes even just ignore me. My mum was never tactile with me after I was a baby. I love my mum to pieces, she’s a great mum in a world of ways but I know that because she didn’t always show affection or mainly empathy, especially if I was sick or upset (i wasn’t allowed to cry in front of her for example) is a main cause of my problems today. I still can’t go forward and report the abuse to the police as I could never tell my mum so I am working on forgiveness to the perpetrator and other routes to resolving the experience. Its a bit of a work in progress just now.
I had a number of traumas over a prolonged period of time throughout my twenties which I am untangling now. My father left my mother and told me without telling her that he was leaving and that the lady was pregnant with my brother. I unfortunately ended up having to tell my mum about this so it bruised my relationship with her. I was in a domestic abusive relationship myself. Had surgery and was diagnosed with Post Viral Fatigue Syndrome after three bouts of flu in nine months. (I often wonder if there is a connection with PFVS and the seizures.) I was housebound for six months with PVFS. I did stay very positive and made a good recovery and now have reasonable health in that respect. I can work part time now, which I am proud of. Furthermore, an important factor is that I was badly bullied a very close relative/friend who I am no longer in touch with. I feel I have suppressed anger and have a lot of unnecessary guilt to unravel from this period. I would benefit from some assertiveness training perhaps and I have been thinking about going to martial arts more often, ninjutsu especially. I went to a class before, its great.
http://en.wikipedia.org/wiki/Ninjutsu
I remain very positive as I have been gifted in seeing my life from the outside and have an ability to analyse my life so as to fully recover from the CSA and PNES. I think that’s imperative to allow complete healing.
I do feel I am getting there with my recovery from PNES but its an arduous journey. I had an episode yesterday when out visiting a local cave and surrounding gardens. Beautiful place so I was disappointed when the weakness started then I went limp, had slurred speech and felt disconnected or distant. I can often then have dystonia in my hands but didn’t yesterday. My fiance had to carry me to the car where I had a seizure. I very often have unwanted sexual feelings during the seizures, then I go very cold and need a blanket.
I’m very fortunate to be living in a beautiful, serene place now and I am in a truly wholesome place in my life where I can truly heal (I live by the sea which is a just marvellous!) My fiance is so incredibly and unconditionally supportive so I’m full of gratitude to him.
A great and informative website that my neurologist told me about is:
http://www.neurosymptoms.org/
I find that if I don’t have a lot of time for a full meditation then this little short mindfulness video can be very beneficial:
http://www.youtube.com/watch?v=hm2Wymc0FtQ
I have short footage of my seizures which if you wanted for your site I would be willing to share.
With Kind Regards
Does anyone on this blog with PNES drive?
I drive a little. However, I am just beginning to learn about PNES and the episode are different for each person. I have convulsions that start with my right hand shaking. Sometimes they just progress to my upper body and sometimes my legs will shake too. Anyway, when my hand starts I can concentrate very hard and stop it for a minute or so. If I do this it comes back after that minute and is a worse than usual episode – 2 or 3 minutes of violent fell body instead of 1-2 of just upper. The point of that is I only drive brief distances and stay to a route and outside lanes that would allow me to pull over if my hAnd begins to shake. It has only happened once when driving and I was able to get off the road. I sat there a bout 10 minutes after the episode until I felt more “normal” and then finished my trip to the bank.
I certainly would not make a blanket statement about safety and driving with PNES because the episodes vary so widely from person to person.
actually yes i do drive having pnes.
My brother was always a very expressive person. He always displayed his emotions and said what he thinks. He is now undertaking anger management to control his anger, but since then he has been having seizures and was diagnosed with PNES. Is it possible that bottling up all his rage and hurt could be a major contributor to the seizures? And would taking up a sport like boxing help him vent in a healthy way?
After reading this this blog I could only think of myself . This was a clear description of how I feel emotionally ,& psychologically , . I am a survivor a domestic violence , in a marriage to my children’s father during the pregnancy , and after. Once my children became 1yrs. Old I moved away from him with the help of victim services. Then years of disappointments affected me in a way that I became angry. Thetrauma I felt loosing my mom when she was at a young age 50 yrs old , a mom who raised me and my sibliblings with my Dad her of husband of 27 yrs before she die from cancer returning. I am the youngest of four children by the way. Then I had a very close relationship with my dad who only lived 7 yrs after my mom past. It hurt so badly because my dad had not been sick. Wasvon his first day of vacay , drop dead of a heart attack 3 blocks from the city hospital in NEW YORK CITY. at age 57. My parents were highschool sweethearts from NORTH CAROLINA THATMIGRATED to the big city for better employment.In 2010 I moved to Georgia on sick leave. I had my Disability Benefits at that time for over 12 yrs. After living in Georgia for 3 months ,Social Security turned my benefits off , because they claimed they thought I was still employed in N.Y.C.
After providing pfoof that I had not been employed for for 7months , I was under the impression that my benefits would be restored. No , they were not. I was left with no income , no health insurance because I had no children under age 18 yrs of age. Now how do I continue medication management ? This has put a strain on my 13 yr relationship. We were buying a home together.no I have nothing to contribute.The outcome to that was him cheating. Finding someone who was employed. My son & daughter become my caretakers. 2011 I get in s CSR accident , I don’t hit my head , but my body has contusions all in the front part of my body. My entire body is sore,my hands are place in braces to the wrist to keep them in one position. Trauma, Trauma , Trauma ,
After 6-7 months after the car accident I started having Seizures that no one could help me with. My son researched my symptoms on line. Told an E.R. Dr.what he discovered. Now they can verify I’m not faking. Here in N.Y.C I called the N.E.R.G clinic and spoke with a nice receptionist named Sonia. I called from Georgia , by the way. I wanted to find out wat insurance was excepted because I had Intention’s to move back to N.Y.C it took about a year to get here after speaking to Sonia but I made it. Only thing is I’m here with my daughter, granddaughter 5 yrs old, my daughter took a leave of absence from her college classes shom is 27 yrs old single mom. Irony we live in a stressful enviorment because we live in a city family homeless shelter. That was the ultimate sacrifice that had to be made for me to get the proper treatment. I advocate for myself, I am assertive. I do have health insurance , a home attendant , visiting nurse services. I would not have any of this if I didn’t advocate for myself. My grand daughter receives special related services in kindergarten, I advocated for that. Mentally , I am exhaughted and angry at the same time. No one here in this shelter assist us. I do everything on my own all though there are rules they are supposed to follow , they don’t. Yes I’m angry. I want to go back to work , but I can’t until I feel stable enough to manage this anger. I use to work in BEHAVIOR HEALTH OUT PATIENT DEPT. CASE MANAGEMENT, CERT. ADDIC. COUNS. , CERT. PEER ADVOCATE., I enjoyed my job. It was unionized. Benefits were great. My goal is to get back in school & work , so I can share my experience , and the complexity of my Diagnosis, Depression , Anxiety , PNES , SLEEP D/O.
My son 18yrs reacts to sad news and anger ive told him several times to try and seperate anger from emotion.immediately this starts to happen he breaths heavly red eyes and tears gushing from eyes he does as if theres going to be an explosion and we try to hold him talk to him and he runs to pour water on himself before it really get him and that doesnt even work the bp the runs high at a time u think hes getting some.relif this starts to build up again
Hi my name is Sherri,
I was abused as a child. I was shot at, kicked, punched, by my father. He denide me from birth. He went out of his way to make sure I knew I was not wanted. I had tried to commit suicide at the age of 6 yrs., by hanging myself on our back porch railing. After my parents finally separated, I thought I was free. Instead, my younger (The Apple of my father’s eye), felt it necessary to continue my father’s abuse, not physically but mentally. One day I got so angry I snapped, I blackout, I don’t how long I was out, when I came to, my mother was crying. My mother told me that I had beat my sister. I didn’t believe her, because I didn’t remember doing it! She went on to say that, she tried to pull me off my sister, but was not able. She siad the look on my face, told her there was no one home! I was 12 yrs old the first time it happened. My sister continued to attack me mentally, I would do everything possible to ignore her, My mother did nothing to help me. As long as my sister left her alone, she was continent. My sister continued with her antics, it did no good to tell her to leave me alone. I had these episodes happen a few times, I was taken to the hospital, they told my mother I was having Psuedoseizures. The Dr.’s told her, she would need to keep stress to a minimal as possible. The worst one I have had, I was 18 yrs old. I had just gotten home with my mother and sister, I was trying to get upstairs to get away from her, we had been arguing about something. I was very angry, because I could not get away from her quick enough. I blacked out, again I have no idea how long I was out. When I came to, I had 4 Police officer’s yelling at me, trying to break my grip from around my sister’s throat, and my mother was standing there with a look of horror on her face. I cannot even begin to tell you the horror that when through me, as the officer told me what took place once they had arrived. I looked down at my sister’s lifeless body, her nose was bleeding, her face was purple, and she started choking. My mother did every this g she could to have me locked up. I don’t know what the officer told her, but they didn’t lock me up, but her attitude changed. My sister was taken to the hospital, and released a few hours later. I am 45 yrs old now, and have not had a spell like that since then. I have tried to talk to Doctor’s about it, but a majority of the time it’s brushed off. What scares me the most is the fact I have no control and no recollection of what happens while I am out. I am concerned now, that my husband has vascular dementia, and the mood swings irritate me to no end. The last thing I want is the Psuedoseizures to start agian!
I was diagnosed with PNES in 2011. It has been an uphill fight since then. I was able to work full time for 5 more years. Now on disability since May of 2017. Been rejected and turned away by many docs of mental and neurological nature. Finally, after 8 weeks in an inpatient facility in Texas (only in-patient facility I could find in US that would take me, as a start to serious treatment and get a grasp on how to fight this condition, I found a psycho-analyst in my hometown in AZ who has agreed to treat me and has been for a bit over a year. Through my time with him, anger, has become the main trigger for my seizures. So much rage has been suppressed inside of me from abuse as a child. I have found that the seizure activity is a defense to keep this anger from coming out. I also, have two identity alters that handle my emotions, which the seizures also try to keep contained. I am not better, I working hard to try to get working again, at least part time and will continue to fight this diagnosis. I won’t let it destroy me. I have an amazing family, even though my husband divorced me because my medical bills to high, my immediate family has supported me without judgement. I thank God for them and thank God for giving me strength to continue to fight this horrible, silent, lonely, mental disorder.