Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

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.

29 Responses to “So you’ve been told you have PNES – What’s that?”

  1. Amber Cooper says:

    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. Christina says:

    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!

    • Starly says:

      There is a critical shortage of informative artciels like this.

      • Lorna Myers says:

        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.

    • Sarah says:

      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. =)

    • Lorna Myers says:

      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.

    • Nick says:

      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

    • Anonymous says:

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

      Marie

    • Marie says:

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

      Marie

    • Marie says:

      Hi Christina are you able to discuss with me your homeopathic treatment

      Marie

    • Anonymous says:

      Christina, did you change your diet? What type of natural supplements are you taking?
      Email me at luv2sail2day@comcast.net
      Thanks, Dori

  3. cindy says:

    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. cindy says:

    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!

    • Lorna Myers says:

      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. cindy says:

    one more thing! eating garlic or to much garlic can risk on gettting a zeisure..so diet and what to eat is very important to know!
    here is will send a website that will help and give advice:

    http://epilepsymoms.com/reports/6-Critical-Facts.pdf

  6. Lily says:

    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 !!!

    • Sarah says:

      Ament… I agree with you.

    • Lorna Myers says:

      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.

  7. Jim says:

    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?

  8. Lorna Myers says:

    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.

  9. Samantha Wilton says:

    Hi,
    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?

  10. Gary says:

    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.

  11. jan sorby says:

    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 for.now 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 epileptic.im 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 words.talk rubbish and stutter.then can have more.feel helpless.

  12. sandy says:

    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.

  13. Elaine says:

    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.

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