An almost universal cognitive complaint in persons with PNES is that their memory is bad and it is not unusual after going through neuropsychological testing of memory (verbal, visual, etc.), that these complaints are officially confirmed. Although we are not sure, these memory problems are probably due to more than one reason.
The most obvious answer is that if you are clinically depressed or anxious (which co-occur in PNES at high rates) your thinking takes a hit. A depressed or anxious person may think slower or faster, as well as having problems with sustained attention, mental efficiency and memory. Note, if you tend to dissociate (split yourself off from consciousness), you miss things and may seem to have “poor memory.”
But there is also some newer research with imaging techniques (i.e. fMRI) in patients with post-traumatic stress disorder (PTSD) that has reported that persons with childhood sexual abuse and/or PTSD have observable differences in their brain structures. How come? It is known that when someone experiences a traumatic event, the body releases cortisol, neurotransmitters in the brain react, and primitive lower brain mechanisms take over. In a child who is not yet speaking, visually may be the only way this information can be processed. In a brain that is still forming, these processes may have a lifelong effect and change brain development.
As a clinical psychologist, I have many times been impressed by the minute visual details patients can recall of their trauma; as if it were “seared” in the mind. But also in everyday life, these patients seem to have better visual memory while verbal weaknesses and poor verbal memory is not unusual.
At our center we tested 49 PNES patients with visual and verbal memory tests; those with a history of sexual abuse showed a significant strength on visual memory on the Continuous Visual Memory Test as compared to others.
So, for those who dismiss PNES as something that is “just psychological,” don’t be so hasty. The fact that it is psychological does not mean it does not have some very real consequences.
will post it on my fb… very informative… thanks…
Thank you for sharing on your fb!
My son says he loses YEARS in a time line after his “Black-out” seizures. He now thinks it’s 1989… the year he graduated from H.S. Doesn’t remember his 4 children, 3 wives, or his mission to East Germany. Ive never read anything of this type of loss or his blackouts with PNES. What’s with this kind of PNES ???
It’s been quite some time since this article but I felt I had to respond. My SO has PNES and he frequently loses years! I’ve researched this condition off and on for 9years now and had yet to find another that lost such large amounts of time! What a relief it was to read this. It made me cry. I can now tell him he’s not the only one. I wish I had to tell him, but that is something anyway. Where we live, at the time he was diagnosed, it was myself that suggested that was his problem and when he started seeing a general practicioner regularly he only heard about it and not taught about it. It’s 9 years later and he’s still receiving no help. I am the his caregiver and companion, I am at my wits end and have fallen apart so many times but yet I never give up hope! I know someday someone will say “wth?” Why hasn’t anyone helped this man?
Thank you!
My wife had a ectopic pregnancy on December 30th 2015 had to have surgery she was on bed rest for 3 month then all the sudden she started having seizures an when she comes out of them she loses 10 to 15 years of her life we have to girls she can’t remember her mom passed away in Jan of 2011 she for gets everything she had c.t. scan mri an epilepsy test done all came back normal Dr don’t know what to think other than she is fakeing it somthing got to happen they say it’s just stress I don’t believe it my wife has been fighting so hard to get back to normal for our kids an me there has to be some thing cousing her to lose her memory like that she can’t take care of her self she’s all the time falling she thinks she’s crazy an she’s not.Dr’s sau it’s sudo seizures but can’t explain why the memory lose if anyone out there has some answers for me please email me thank u
I have been having PNES for ten years. The first eight years were under a Cardiologist and a Neurologist who performed numerous EEGs there was no diagnosis. Following a series of seizures I scored a pacemaker due to a misdiagnosis; as for eight years it hasn’t recorded any cardiac events.
After a seizure that hospitalised me due to resultant physical injuries. More EEGs were performed and then my Neurologist referred me to another Neurologist who specialized in Epilepsy. Upon her questioning a person who witnessed my seizure, she exclaimed, this is not Epilepsy, it’s STRESS! From there it wasn’t difficult to join the dots to PNES.
Following a series of seizures I scored a pacemaker. the onset possibly being a high achiever working in an organisation where I had difficulty respecting my peers.
For the last 2.5 years I have not been able to work but I’m still experiencing PNES and apart from the occasional collapse, by far the greatest impact is the loss of recent memory following each attack. A little of the lost memory returns but the most of it is gone… sadly gone forever.
I’m being treated under a psychiatrist taking 75mg of Venlafaxine daily which having reduced the dose to avoid grogginess apparently does nothing.
An effective treatment would be able to put my life back in order, but unfortunately I’m yet to find a solution.
so I’m not sure if anyone still goes on this, I just found it through a google search. My wife is 20 years old, and has gone through a lot of trauma in her short life. Her parents split when she was about 5 and they both remarried. Her mother was an alcoholic and her dad was the only ray of sunshine in her life. Her stepmother, whom her dad remarried, was very mentally abusive and basically shunned her out of her life and tried to do the same for her dad. Her dad was really the only person who ever showed her any love and compassion.
I really don’t like to get into what happened in her life, but when she was 12 she was sexually assaulted by a few boys and it was described very graphically. She also had a very abusive boyfriend when she was in her teens who would physically and mentally abuse her for over 2 years, using chemicals, calling her names, and even “branding” his name into her wrist.
Her and I met last year and she was having seizures prior, but they were never diagnosed or showed up in any tests done by the hospital. Now, she is also a diabetic (diagnosed at age 8) and whenever she has a seizure, this causes her blood sugar to shoot up in the 300-450 range. The doctors keep her for days to lower her BS but do nothing about the seizures.
She usually feels tired and describes a “dripping” feeling in her head before she has a seizure. It’s not due to lights, sometimes is set off by sudden loud noises or when she gets scared, but it appears to be a normal seizure (eyes closed, full body stiffness and convulsions) but what’s happened quite often is when she comes to, she will forget large periods of memories. Sometimes she’ll think she’s 15 and still in school. More recently she’s forgotten me, as well as where she lives, her friends and family’s names and all of the recent events of our relationship and marriage. In the past her memory will come back but not until after she has another seizure.
I just want to know what I can do to help her. What kind of doctor can I take her to so we can help stop these seizures? I would say she isn’t dealing with as much stress as she was dealing with before, maybe therapy to get those bad experiences out of her head? One doctor mentioned something about Conversion Disorder. I’m not to sure what I can do to help her.
Hello Sean, thank you for posting. I suggest you read some of the pages on this website and see if PNES or conversion disorder sound like the right diagnosis for your wife. Note that the diagnosis of PNES is given after running a test called video-EEG. http://nonepilepticseizures.com/epilepsy-psychogenic-NES-information-answers.php
Depending on where you live, and if the diagnosis of PNES is confirmed, you might have access to the proper treatments for your wife.
You can check on this link (organized by state-but not all states are listed): http://nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php
Or otherwise, you might enter your zip code here and see if a therapist is in your area. http://www.isst-d.org/default.asp?contentID=18
Best of luck
I was diagnosed with PNES nearly 8 years ago. It has been so debilitating for me. In the beginning it would not be uncommon for me to have 20 seizures in a month. My seizures are absence seizures, but tonic clonic. I go ‘bye-bye’ for a few minutes and then have several more minutes of confusion as I come out of the seizure. My husband says I draw my hands up and make chewing motions with my mouth. I’m in a blank stare the whole time. Just in the last couple of years I have what is known as an aura. I don’t get this warning every time, but I’m so thankful I get them at all. The largest and most heartbreaking side effect of it all has been my memory loss. My long-term memory is intact. I’m a middle aged woman who remembers The outfit I wore in fourth grade, the show I watched at Gma’s House, etc. However, I do not remember the last eight years of my life. I don’t remember trips we’ve taken, people I’ve met, my children graduating high school… none of it. I’ve said it before and I mean it, I would be willing to have a seizure daily if it meant I could have my memory back. My husband and I will be visiting with friends and they’ll ask if I’ve seen such and such movie or been to a restaurant and I say “No, I’ve not” and my husband says “Yes we have”. I hate it. Anyone else suffer from this dramatic memory loss?
That should read absence seizures, NOT tonic clonic.
Hello! Thank you all for sharing! My 24year-old son was diagnosed with PNES about 3 years ago. His neurologist continues to prescribe antiepileptic medications. He have a period without, then suddenly a day of 4-5 seizures. He has been unconscious for as long as 30 minutes a few times. His memory lapses are usually about very recent events. However after his most recent seizures, he forgot we moved last September. We went from an apartment on the main street of a small town and bought a house in the Mountains, only 30 miles from where we previously lived. Our son has been very angry about moving and tried to talk us out of it. Could his distress about the move almost a year later be causing his seizures?
Dear Marilee, Thank you for commenting on the blog. I would recommend that you look through our website (www.nonepilepticseizures.com), especially the FAQ section: https://nonepilepticseizures.com/epilepsy-psychogenic-NES-faqs.php
Does your son see a mental health clinician? Research shows that the most effective treatment for PNES is as of yet, psychotherapy. A psychotherapist would be able to help him (and the family) figure out what might be triggering the episodes and if there are unspoken feelings that might be fueling these.
I wish you the best.