So you’ve been told you have PNES – What’s that?

You’ve certainly been dealt a real challenge.  Why? Because PNES is  a very complicated psychological condition that seems to defy logic.  There are however some promising treatments. We only need to figure out who they will serve best. In my opinion, the biggest problem lies in that we may be lumping different conditions into one single category and asking questions from a single viewpoint. 

How do we define PNES?
Psychological non epileptic seizures are behavioral events that may look a lot like  epileptic seizures (i.e. body movements-shaking and twitching, vocalizations, changes in consciousness, odd sensations, sometimes  loss of urine or tongue biting), but when tested with an electroencephalograph (EEG), the brain waves are not epileptic.

So if epilepsy doesn’t trigger these events, what does?
Rather than being triggered by abnormal electrical activity in the brain, the episodes are triggered by psychological distress. What is somewhat incredible is that this can occur even when the individual is not aware of being under stress. 

How can our mind be doing something that we don’t know about?
Our mind/brain is incredible.  In extreme conditions it can activate and deactivate parts of itself.  Dissociation (splitting off of awareness) is one such feature that can sometimes play a role in PNES.  During the episode, you may still be able to perform actions but are unaware of what you are doing. 

What are some of the characteristics that have been documented in many PNES sufferers?
Note: not all patients will have everything in this list and the list is not exhaustive. 
• History of trauma (trauma can take many forms)
• Around half carry a diagnosis of post traumatic stress disorder (PTSD)
• Alexithymia (a dyslexia of your emotions)
• Troubled families of origin
• Problems with anger management/assertiveness (you are “steamrolled” at times and “blow up” at others)
• High anxiety and problems with stress coping
• Depression  
• One or more head injuries or neurological conditions 
• Substance abuse in some
• Fybromyalgia and chronic fatigue syndrome
• Memory, attention and speech difficulties

What does psychology have to say?  Many of the symptoms and characteristics are considered learned through early experiences and some factors are inherited.  Recent exciting progress in the field of neurology and neuropsychology is complementing our understanding of the condition. 
First off, a sizeable number of PNES patients have documented neurological findings.  It is not clear how or if this is meaningful but it is intriguing.
And in patients diagnosed with PTSD, neuroimaging studies of persons who experienced extreme and long-term traumatic events is showing actual changes in brain structures (the “emotion center,” “relay center” and “organizer” of the brain).  This suggests that intense life experiences (trauma) may literally transform the brain.  

So where does this leave us?
We need a multidisciplinary team including neurology, psychology, and psychiatry to really understand this condition.  In my opinion, this is the only way we will be able to treat PNES effectively.

47 thoughts on “So you’ve been told you have PNES – What’s that?”

  1. This is the type of information I think everyone with this condition needs to know! So many of these sufferers tend to deal with this condition in silence; mainly because so many ‘medical professionals’ have turned their backs or failed to take them seriously. Knowledge is key – thank you for your part in bringing awareness of PNES to light!

  2. I have suffered from PNES for 5 years, stemming from a head injury. For 4 plus years, I was in and out of doctors offices and hospitals. They thought I was “making it up for attention”; or thought I needed to be “locked up”; or ultimately just kept putting me on high doses of meds which inevitably kept me in a state of PNES, toxicity levels off the charts! Finally a year and a half ago, after exhausting all avenues, I went to a Homeopathic Doctor, top notch in the country. He detoxed me off all meds, showed me ways of coping, and put me on two all natural supplements, plus a prescibed Vitamin/Mineral..Intra-max. With lots of love from my husband and kids, my new supplements, and exercise everyday, I have my life back again. My last PNES was 6 months ago! Don’t get me wrong, I have my moments. But going from 8-10 seizures a day to 1 every 6 months is a Blessing from God! If I can get better, others can!

      1. Thank you! Will continue trying to keep this information coming. Next blog post is about findings we made recently of visual memory problems in some patients with PNES.

    1. I do have dyslexia, and I do get steamrolled when someone poke me or repeat same questions over, and over. Also I was abused in childhood from home and bully kids in Germany.
      which cause part (PTSD) and dealing with depression. I do get high anxiety with finacial situation, school and job. Also, I am not aware of head injure at that time. All I remember is that I fell down the stairs from the rocken the horse. Yes, I get tired real easy and the more I push the worse it gets. When I am tired I go straight home and sleep. People know when I am really exhausted my skin color change to pale. I have difficult with speech and memory, I can’t repeat what I read or someone told me a story. I get some of it and it’s a huge struggle. First of all my mom think I did on purpose to get attention so did school. I was fustrated and I wasn’t faking. I was paylarize head to toe not knowing why and my eye shuts and I cannot open, but can hear and I jerk to mild to server, range to 2 to 15 minutes.Other than that I couldn’t speak either because my stomach is so tight that I couldn’t speak or breath that easy, so I had to wait until I can take control. Also, when I am really tired my body start aching everywhere, feeling sore all over and weak and all I want is sleep and worse migrane. When someone touch me or start telling me that i need to do chorse, that’s when I get cranky. If I try to focus on my homework. I do not like someone touch me or start making too much noise that i get exploided because I was overwhelmed and fustrated by sounds. Also, I get overwhelmed when there’s too many people around me. A year ago the doctor gave me a tons of test and that I had to answer for two hours striaght. They discover that I have communication barrier and language barrier. I get migrane very often as well and I sleep a lot that’s when doctor told me that my symptom was depression. Now I am taking anti-depression, kappra, and migrane medicane from the doctor, not on the counter whiched helped me termendoulsy compare three years ago. I was on dapakote, laxapro, abilify and so on.. I hate it, made me tire, get worse migrane I ever had and my father was really upset to see me in pain. He said that I sounded like I was drunk because i was in so much pain and sleeping a lot. My doctor describe me as bipolar and i quit seeing her because i hated the dapakote I was on and made me misrable and felt that she didn’t listen to me. Also I went to a different doctor.After I quit my medication, have been going to E.R and they suggest me to go back on dapakote, and I refused to and told the E.R that med I took was most miserable I ever felt in life. So after three years, my freind help me get back to mental health, doctors and so on. My freind and I talked about the symptoms and make a list and it was the hardest thing to know, until she explained and I answer the question for her and gave the list to the doctor and they gave me anti deppresion. Then I was pregnant and the other doctor realized that I was not on my seaziure med and said that the baby is in danger, so they send me to neurology. So neurology finally gave me seazure med which helped me termadously and feel have control over my seaziure. However lost the baby due to the missing D.N.A. Also my anti-depression helpd a lot with me not sleeping so much and feeling sick in my stomach.The doctor did a lot of test and finally figure out and explained me what was going on with me. So my mom realize that I wasn’t faking either. I have doctors, my mother and my freinds there for me. I wanted to thank them for all hard work they put in and took me eight years to be back to myself again. A lot of people saying that I have more color on my face and smiling a lot more,talkative, able to consintrate better and that I am back to myself again. They were so happy to see me like this. I really appericate their help they put in. ALso, my EGG says it was normal which was hard to dignose with. Also, it’s critical that people don’t just assume that they are faking, which I wasn’t faking. That hurt my feeling because I have no control over my PNES and sometimes I don’t realized I am stress either. Again, I like that fact on this website, it’s very clear, easy to read and true facts which will help others to understand more about PNES. I am very pleased with this sorces and other sorces are lot more complicated to comperhend. =)

    2. Thanks for sharing this. There are many paths to health, the thing is to keep hope up, find a reputable professional who works well with you and put in all your effort in getting better.

    3. Hi christina
      Our 17year old daughter starting having seizures about seven weeks ago.LIke yourself we have been to many doctors epilepsy has been ruled out but we have no idea what is causing them.I was interested in the type of hoeopathic remedies and vitamines you were recomended

      Thank you
      Regards. Nick
      We live in australia

    4. Hi Christina are you able to share with me your homeopathic specialist details or even even advise what vitamins or supplements you were advised.


    5. Hi Christina are you able to share with me your homeopathic specialist details or even even advise what vitamins or supplements you were advised.


    6. Hello Christina. I was wondering if you would be willing to share your natural supplement remedy to help with PNES?

    7. I suffer from severe depression and high anxiety. I went to doctors, as well as Neurologists, but I’ve been told they’ll do tests on me to see whether or not I myself was also looking for attention. I suffer from depression and anxiety brought on by my past sexual and physical abuse by my own ex stepdad. I have troubles trusting any other males. I only trust my fiance of 8 years, and he’s seen me just literately freeze up, stare blankly at nothing, trembling somewhat, and he has said he could hear weird sounds coming from me. I have said I never remember any of those. I also do have a tendency to hyperventilate a lot. I can’t be around large crowds at all for too long. There are times when I stop breathing in my sleep, and I “jump” in my sleep as well. I never remember anything afterward. I was told I suffer from non-epileptic ptsd psychological stress-induced seizures by one neurologist out in Iowa City. I think Neurologists out there are more sophisticated than my local doctors. They did a battery of tests on me. What are your thoughts on this?

    8. Hi Christina, I suffered from PNES for 30 years, in 2013 finally the doctors diagnosed me with PNES, I expend 3 year to accept what I have. Now I am prepared to do something about. I normally used homeopathy to cure small health issues in the family but I am looking for a professional that could understand this disorder. Could you give more information about your homeopath or the treament that you went through.
      Many thanks and best wishes

    9. My daughter is going through this since having her appendix out. Where did you find this holistic doc? We live in Chicago. Any info will help

      Thank you, Colleen

  3. i am happy that you could minimize the
    seizures..that is good,,also your diet is important,,,you should not eat rich foods,,more light foods,,,and have enough rest,,feel relax in your mind and body,,maybe when you feel stress meditate..that will keep your midn out of stress and anxiety,,as this can also bring up seizures!
    also dont let your body temperature go up and get hot,,allways keep your body and head,,cool,,as heat inside body and head can also bring up seizures.this information i been finding out from many different directions,,and it has been pretty much helpful,,and last,,before bed,,try to have some one massaging you every night so your body and mind can be relax and prevent a seizure,,,i been doing this every night!! and live a positive life and stress ful life!

    good luck and god bless

  4. zeisures can also come up from traumas and fear from the past,,childhood and blocks inside of you!!!!!it is important that people with zeisures check up traumas,,by going maybe to a hypnos doctor,,or therapist or psycologist,,it does not mean people are crazy coz we go to therapists and psycologists,,,as we all human beeings have traumas and blocks from the past in our childhood,,so dont worry,,we are humna beeings,,not perfect and by no mean robots,,so many things can help to make your zeisures less and less,,i hope my advice was soem help!,,warm hugs and love to every one in need!

    1. TRUE! Going to a psychologist or psychiatrist is sometimes the greatest sign of health. It shows you have insight, are trying to get better. It shows strength and motivation.

  5. Hi ! I have a history of long term and sustained trauma and subsequently have been diagnosed with PNES ! It was a devestating blow as I have now expereinced a change in the way people in the health profession treat me ! So no longer do I have epilepsy – no now I have a dysfunctional mind !!!! Shoot me now !!! The stigma and resulting treatment are unjust, unfair, labelling and create more obsticals for treatment…so set some boundaries with those who are treating !!!

    1. I know it can be horribly frustrating and hard to live with. But the more we get the word out and educate professionals and the public, the better! Read the blog post on trauma please, traumatized persons don’t have a dysfunctional mind. Anyone who goes through enough suffering and pain will develop symptoms. It just stands to reason. And it is not less important or serious than “psysical illnesses or conditions.” Remember, there is treatment out there and at least with the diagnosis you have a clearer idea of where to direct yourself.

    2. I agree I had non epileptic seizures for three years then I had EMDR treatment done, now they have been back they go in cycles an d I have learned a lot of triggers, I had to eliminate flour, pasta, sugar, stay out of the heat, not take certain things vitamins, dairy, caffeen gum. I try to get 20 min of excersize a day, swimming makes them worse for me.i have been currently taking CBD it helps often to stop them or prolong them till I can get to a safe place. These types of seizures are different for everyone, keep a log it helps to all my fellow sufferers thank you for sharing your stories. It’s so comforting that we are all trying to search for an answer.

      1. Hi Anonymous, can you please tell me more about the CBD? I have PNS as well and are very sick with this, since 2006.
        The psyciatrists, Neurologists, Physition, and alle the other that I saw in the past, never told me about CBD. Maybe it can help me a little.

  6. I have had two doctors, both Neurologists, tell me that my PNES is caused by subconscious issues some time in my past. I have been working with my psychologist for the 1.5 years and have not found it. Then I read your information about fibromyalgia and a light came on. I have had fibro for four years. I have several questions: 1. I understand that PNES is not epilepsy but there must be a mechanism for the spasms to occur, what are these? 2.I have just been diagnosed with neuropathy, do the damaged nerves play into PNES. And lastly, there doesn’t appear to be much money applied to our cause. What can be done about this?

  7. Hi Jim, excellent questions!
    1) Subconscious issues are almost always present in PNES and almost 90% of PNES sufferers have abuse in their history. Trauma is best treated through psychotherpay and medication (when necessary). It can take a frustratingly long time sometimes to “recover” those subconscious nuggets.
    2) Fibromyalgia is not well understood but some suspect its foundations may be biological AND emotional. In addition, it is not well understood, but there are high numbers of persons with PNES and fibro… And lastly, what is also not well understood is what triggers someone to develop PNES which at least visibly looks very much like a neurological disorder and why that same person doesn’t develop some other stress reaction. The answer could lie in neurology, psychiatry, psychology, sociology, etc. This is the million dollar question that we need to answer. It will likely require a MULTI-disciplinary approach and we are not there yet.
    3) Why aren’t there more funds in PNES research and support? Probably there are several reasons, such as, it falls under mental health and that is always pervasively underfunded, there has not been that much dissemination to the public and professionals about the disorder, insurances need to be informed about the costs of untreated PNES, etc.
    Stay in touch. We post about once a month on new topics in PNES and BTW, if you have a topic you would like to suggest, send it my way.

  8. Samantha Wilton

    when I was younger I would have episodes of vertigo and spacing out and not remembering what happened. they went away for a while and recently about 2 months ago they came back full force but this time i was convulsing. We went to the hospital and they said it seems that i had a seizure. Next morning called the neurologist and made an appointment right away. before my appointment i was having these seizures everyday close to 5-8 times a day. i couldn’t remember what i was doing before i went into one. my husband said that i would bite my lip and play with my fingers. After each one i would have a horrible headache and would have to use the bathroom to urinate. when i finally saw the doctor he got me to stay at the epilepsy seizure for a week. while i was there i went through very small seizures no convulsing. he said that the EEG was perfect. i couldn’t understand. he then told me that it was pnes. my subconscious he said is what is doing this to me. i don’t understand how my subconscious is doing all of this. i was and still confused. what he did tell me was that the whole time as a child the doctors thought that i was going through vertigo i was going through pnes. i do have a history of child abuse and i have ptsd along with anger and anxiety. he told me i need to go on anti depresents and i did but they made me have more anxiety with more anger and extremely tired. that is another thing i need to add. i am always so tired for years now i could litterly be awake for 4 hours and sleep the rest of the day away. i would try and explain that to all the doctors but they really didn’t listen. sorry back on track. i stopped taking the meds. recently i called another doc to get a second opinion cause i guess it nothing is working even going to a counselor. well the doc looked over my records and said that there is nothing he can do for me. i just need help. i want my life back. i can not work or drive right now. some people think i am faking all this and im not. it kills me to see what i am putting my husband through and i am not myself anymore. i really don’t know what to do. i can except pnes but does it ever go away? how do i take care of this? if any one can help me or give me advice that would be great. i wont lie i am scared and just don’t understand y?

  9. I have a long history of trauma (sexual abuse, family disfunction, adoption). I underwent PTSD inpatient then outpatient therapy about 10 years ago and it made all the difference in my functioning. 3 years ago I suffered a physical attack from a foster child and shortly afterward I started having seizures that were misdiagnosed as Post Traumati Epilepsy. However, this last week I was diagnosed with PNES through an Epilepsy Center and Video/EEG. Trying to figure out the ratio of current trauma being the trigger for PNES. Is it that common? My doctor is trying to say that the attack didn’t have anything to do with it … that it was going to happen anyway. However, I have dealt with a number of medical illnesses, and mental illness diagnosis through the last 30 years and I never had a seizure before. Why would they start 4 weeks following a very horrendous physical attack? I may need to change doctors.

  10. I have fibromyalgia and i started having seizures 3 months ago.they happen every day sometimes.i have only ever missed 3 days between. I can have between 3 and 40 a day.mostly repetitive.really affecting my life as off sick from work.scared going out alone..started after a bad pain attack which i was told twelve months ago was trigeminal neuralgia and treated they say its atypical facial pain syndrome.fits start with pain in my head.had a normal mri twelve months ago.neurologist said dont sound like epileptic attacks.thinks non having an eeg next week.if non epileptic they said psycotherapy only option.worried it wont help.cant carry on like this.i can hear whats going on when fitting just cant speak open eyes or respond.head and arms jerk.then i open eyes stare into space and then words all jumbled up.cant think of rubbish and stutter.then can have more.feel helpless.

  11. I have had seizures for the past 6 yrs finally diagnosed with PNES 1 yr ago I was having 7=10 seizures a day now 1-2 a month. Nobody can even imagine how this makes your body and head feel and always so tired. It is easy for people to tell you to get rid of all stress but like in other articles there are ties you don’t even know you are stressed. Until 1 yr ago my Dr had me on seizure meds that were throwing me into more seizures when I was taken off all meds my seizures started to becoming less and less. The summer heat definatley is not good makes your whole body feel like its gonna happen any moment. This is really life altering condition.

  12. I have been diagnosed with pnes by psychiatry, after my video eeg looked wonderful. So now what? I have been going through a separation and it has been difficult. I see a counselor 1 time every week. I am on an anti depressant and a mood stabilizer(anti psychotic). Plus a beta blocker for social anxiety. 10+ years of unexplained unconsciousness with what looks like seizures or near seizures, on the times my unconsciousness was witnessed. I am feeling better now that I have been diagnosed with pnes as atleast there is a legitimate name for my condition. I have been told for years it was nothing, just imagined, all in my head.

    1. Me too, exactly. Can you tell me about your experience with beta blockers? I’ve been considering asking my regular doctor for them.

  13. May I please share this article on a facebook page my daughter and I have created. it is called D.A.D.S a Daughter’s Awareness for Dissociative Seizures. My husband suddenly started suffering from this a year ago.

  14. Thank you for this blog. I’ve been dealing with this since I was 12. I’m 26 now and have been through so many neurologists it’s not even funny. I think most doctors aren’t familiar with seizure disorders so they want you to take every brain imaging test imaginable, tests not even covered by insurance, just to make sure it’s not epilepsy rather than actually listening to their patients.

  15. My son got into a snowboarding accident at the age of 14. For years we went to neroligist with no answers. We finally found out about a year ago he has PNES. For those of you that dealt with this for many years I have been told the diet is extremely important but no real details on a exact diet does anyone know what this is? When my son was younger his seizures were anywhere from an hour to an hour and 50 minutes now they seem to be anywhere from 10 to 20 minutes. He has a migraine or his head hurts after he has a hard time walking for up to a week his speech is off for a few days. Are these the same symptoms that all of you have? We have you oils to help with his conditions and they seem to help after the seizure. He has also learned Reki his neurologist wants him to learn to meditate more and to go to a psychologist and psychologist.

    1. Hi,
      I was in a car accident in march and your sons seizures sound just like mine. They leave me unable to walk or talk for a length of time. My friend brought over essential oils and their aroma dome. It’s helped. I too find myself at a loss. I never had problems with anything before.

  16. I have been having pseudo seizures for about 12 years now, I went to many different Drs. finally I was diagnosed with mental abuse, almost had a break down. I saw a psychiatrist and counselor as well as medication. The neurologist I see for my epilepsy recommended that I see a psychologist, after a few weeks he stared doing hypnotherapy ( not hypnosis and certainly nothing like ou see on tv.) You are aware of what is happening around you but are very relaxed, I even recorded his therapy to do at home and it really helps. I won’t go into detail but I will say that my attacks have stopped until I got the fibromialgia and now this seems to bring them out again. But I do reccommend the hypnotherapy very highly, but make sure you have a qualified dr.

  17. The GAPS diet made me so much better. I would literally not have any seizures even to flashing lights if I didn’t consume certain foods. Even when I had no idea one of the ingredients was in there, my body always did. This is how I know there truly is a problem and a cause, not just my imagination. But I don’t follow it all of the time and found that butterbur with feverfew works. The most effective brand for me is NOW without the maltadextrin. It normalizes brain activity and tones the blood vessels alleviating neurological discomfort, and is most commonly used to treat especially the most severe of migraines. It takes about 10 to 15 minutes for me to be able to handle flashing lights and food triggers. If I am already starting to feel one or having one I can stop it instead of allowing it to take it’s sometimes very lengthy course. I take it in between the moments when I’m responsive. Keeping my body up to par nutritionally is helpful, but seemingly hard to accomplish, which is common in individuals with leaky gut syndrome (which is often the cause of these seizures in the first place). We can have some malabsorption issues. My issue I think goes a bit further to damaged blood brain barrier from having suffered menengitis, which is also still treatable.

    Basically, when this hit me it was life changing in so many ways as I’m sure you all know, and with this diagnosis all hope felt lost in getting help and I felt as if this label was a way for them to write me off without truly finding the cause and worse, they used my past traumas as the excuse. And of course the reactions from everyone over my experiencing this have been crushing to say the least and have found myself vulnerable too often. However, I learned that there are so many ways to fix this and I have had so much time without seizures. I am not done fixing this and I haven’t tried as hard as I should have, but even then I have been able to live a worth while life. I know living this way can sometimes make it not feel as worth it. When doctors tell you that essentially they don’t understand what’s wrong with you, and they give you some untreatable label as a way to write you off… KEEP LOOKING FOR THE SOLUTION!!! Just like with cancer there are truly so many ways to cure it, this is no different. When one system fails you have no choice but to fail with it, or to find a different system that is not and to raise your standards to demand a better option for our bodies, persevere above and force our questions to be answered, even if we are the ones having to answer them.

    1. Well written article. I appreciate the way that you presented and compiled the information. I was trying to search for additional information about food triggered PNES and accidentally stumbled upon this. I didn’t find what I was looking for per say but nonetheless I found my most favorite summary yet of the prior excessively long but helpful educational articles on the subject.

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