Many times National Seizure Disorders Foundation (NSDF)has come face to face with the question “PNES, is it a seizure disorder or neurological mystery?” NSDF has found through research online and offline PNES is a physical manifestation mimicking seizure disorder while remaining so elusive much of the medical community considers PNES a bit of a mystery.
Imagine for a moment you experience a seizure for the first time. All the classic symptoms are there. Witnesses even tell you afterward that it seemed to be a Gran Mal ( Tonic Clonic)seizure. Days go by and you start to see a pattern, so your epileptologist orders a video EEG for about a week in order to get a solid diagnosis. Many seizures are detected. At follow up your epileptologist informs you these are not seizures at all. Confused and a bit outraged you wonder if the epileptologist has the proper training.
Does an epileptologist have the correct training?
An epileptologist is a neurologist who specializes in the treatment of epilepsy . 
Epileptologists are experts in seizures and seizure disorders, anticonvulsants, special testing, and special situations involving seizures, such as cases in which all treatment intended to stop seizures has failed and epilepsy.
Only the trained eye of an epileptologist can correctly read EEG to determine whether it is normal or abnormal for PNES. Neurologist often misdiagnose PNES by incorrectly reading EEG. Training is just not there for neurologists. The advice of National Seizure Disorders Foundation (NSDF) is to consult with an epileptologist when you experience two or more seizures within a year.
If PNES is not a seizure disorder, what is PNES? Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges.
PNES is not a physical brain disease or disorder, most commonly PNES attacks are emotional,stress induced,and result of traumatic childhood experiences. For this reason it is recommended treatment for a PNES patient to seek counseling under the direction of prescribing epileptologist.
A few quick facts:
- PNES attacks are sometimes called pseudoseizures, “psychogenic non-epileptic seizures” (PNES) is now the preferred term.
- PNES are the most common condition misdiagnosed as epilepsy.
- PNES are not rare, with a frequency comparable to multiple sclerosis.
- In general, 1 in 5 of patients sent to epilepsy centers for difficult seizures is found to have PNES instead of epileptic seizures
- 75 % of PNES patients are women
- Most reliable test to make the diagnosis is long term EEG-video monitoring with which diagnosis can be made with a nearly 100% certainty.
- About 80% patients have been misdiagnosed because much of the diagnosis relies on descriptions reported by observers.
- Upon correct diagnosis it is reported about 10% of PNES patients also have epilepsy
National Seizure Disorders Foundation continues to bring you facts about types of seizures and seizure disorders in order to educate you whether you are a seizure patient, caregiver, or professional. Please leave a comment for NSDF so we know the effect this article had on your life. Do you have questions? Do you need support? Are you searching for more about seizure disorders? We appreciate that you let us know.
My13 year old son was initially diagnosed with epilepsy two years ago. He was not able to tolerate any of the medications prescribed by the doctor. In January he was admitted to Children’s Hospital for his seizures. He was there several days having back to back seizures. He was diagnosed with PNES. He does not want to see any mental health care professionals. We had tried counseling when he was younger for issues with ADHD. He refused to cooperate with any therapist we tried. Any suggestions?
After reading the comments I have a couple of questions that I’m trying to get answered. My daughter has been diagnosed with PNES, after a four day VEEG. My question is about the side affects and if they seem to go with PNES. It started with passing out from what was Diagnosed as Migraines, after which she suffered from short term paralysis. Then came complete amnesia that lasted for different lengths of time, in addition to full or partial blindness. This was followed by the seizures that started in the last year. At this point she has had head pain of some level, since last June. My question is are all the side affects reported in cases of PNES? While we are trying to understand PNES more, the side affects just don’t seem right.
Thank You.
Dennis, I appreciate that you are doing all possible to find answers. When we begin to untangle any mystery involving the brain and nervous system the journey does get overwhelming from time to time. Please understand that you and your daughter are not alone. There is help and there is Hope.
Has your daughter been examined by an Epileptologist?
Has your daughter had an MRI and CAT Scan performed?
I know it is possible to pass out from migraines and I’ve also heard that amnesia has been reported with migraines and with seizures. The collection of side effects including blindness lead me to wonder if any doctor has been looking for any form or size of tumor. A tumor can explain every symptom. It’s my advice to have her seen by an epileptologist and tested for things we may not want to face, such as tumors, brain abnormalities, and aneurysms. I want you to find the answers to all your questions. Even if the answers are hard to face, at least they are answers.
I invite you and your daughter to connect with us through FaceBook and gain access to our private seizure support group ‘NSDF Community’ where you both will find the acceptance and support you both need; she as a seizure survivor and you as a caregiver. I also invite both of you to continue increasing your knowledge here while adapting to living with seizures. A good read for both of you: http://nationalseizuredisordersfoundation.org/how-to-cope-with-pnes/
As always, you are not alone – I am here.
Peace&Power -
Terrific Tonya Heathco recently posted..How to Cope with PNES
Thank you for your comments. Yes, the neurologist that ran the VEEG has experience with epilepsy. It was done at the Epilepsy Monitoring Unit at the University of Texas Southwestern here in Dallas. We are just trying to see the next steps. As I said, I’m beginning to understand PNES, but am having trouble with all the side affects and the continuous head pain and other symptoms. Although she as been through the MRI’s and CAT scans without anything other than normal findings, I still wonder.
It’s good to know there is an Epileptologist involved and she has had all the right tests. Have you shared your concerns with the doctor and asked directly about possible tumors? I will continue to investigate the possibilities on my end and let you know what I find. Remain optimistic because there is always Hope! Consider helping her learn stress management techniques and trauma coping skills. These often ease the triggers that cause seizures and migraines. Once the seizures and migraines lessen, you should see the other effects fade away.
Both of you are in our prayers -
Terrific Tonya Heathco recently posted..NSDF Newsletter May 2012
My wife is suffering pretty massive what looks to be seizures. Her legs and arms start to completly tighten and shake, and then her eyes roll back and then she begins full body shaking, her head shakes like she is saying yes like 100 times per minute or more and the stomach is contracting, and all limbs, her complete body is tight and they last anywere from 1 min to 5 minutes. we have recently had a EEG done, they were able to provoke pone of these episodes and i was in the waiting room and seen 3 other nurses run in. she always stops brething after the episodes and has to have CPR done to get her breathing back. The nerodignostic guy made a statment to me that it was one of the worst he has ever seen and have been doing this for 21 years. And on top of the episodes she suffers complete memory loss. no idea of who she is, were she is, or who i am. it takes her nearly 24 hours to gain partial memory back. and that is to say we don’t have 10 more of these episodes through the day and each time she looses her memory again. The Dr. who ordered the EEG has called and said that the EEG showed no seizue or brain activity during these episodes on the EEG and to contact a psychiatrist. And he has not even finished viewing the results to the rests he ordered. she still has the haulter monitor on now, that has 30min until it shuts off of its 48hr window he wanted looked at. Is this normal for a nerologist to say contact a psychiatrist after not really examining a patient, only speaking to her twice ordering a EEG and haulter monitor and only seeing the results to 1 of the tests. I am honestly just trying to see were to go from her,i am pretty much having to give my wife 24/7 care right now. because these episodes can happen at any moment. If anyone has any suggestions or questions please contact me at envyous@cox.net the help would be greatly appericated. and if you need any other symptoms or questions feel free to ask me. thanks for your help in advance
Thank you for leaving such a great comment. I know others reading this will know they are not alone and know it is safe to seek out help. Imagine all the people you are potentially helping in leaving your comment. Good for you!
With the physical description and the results of the EEG, I would say that it is reasonable that your wife could possibly have PNES. My suggestion is that you have her seen by an epileptologist or ask her neurologist about PNES or find a psychiatrist she is comfortable with who also understands that trauma can trigger seizures.
Why a psychiatrist? These are the type of doctors that help people understand trauma. People living with PNES ( seizure survivors) usually have unresolved trauma somewhere in their lifetime and when they get stressed, the trauma surfaces as seizures of all different types. For some, as with me, the seizure is small and for others like your wife the seizure is deadly.
I will be connecting with you via email because it is important you and your wife have a strong circle of support and information. You are not alone and there is hope. First things first, relief that will lead to the peace of mind easing her seizure severity.
Peace&Power -
Terrific Tonya Heathco recently posted..How to Cope with PNES
My 41 year old girlfriend suddenly has started to experience seizure like symptoms that the doctors are calling PNES. During these episodes, since she cannot call them seizures since the EEG’s were clean, she loses the ability to talk, move and becomes somewhat frozen. The symptoms have gotten worse now including seeing colored spots, extreme pain in the base of the skull, and short term memory loss. Has anyone here been diagnosed with stress related PNES for it to actually be something more?
Let me add she has been seen by 2 ER Drs, 2 Neurologists and a therapist. The crazy thing is the first ER doc released her after a 3 day VEEG and said “Your results look ok. I think it is stress related but I want you to go to a Neurologist.” Why would he send her to another Neurologist if he believes it’s stress?
Mike,
Thank you for coming to National Seizure Disorders Foundation with this issue. You and your girlfriend are not alone. Cases of PNES are increasing recently. We have more information that will help in the following articles:
http://nationalseizuredisordersfoundation.org/how-to-cope-with-pnes/
and
http://nationalseizuredisordersfoundation.org/conversion-disorder/
In addition, you and your girlfriend are invited to connect with our private seizure support group in FaceBook – http://www.facebook.com/groups/169922089687803/
Has she been examined by an Epileptologist? This type of doctor is skilled in seizures and often reads test results specifically to pick up details other doctors just don’t see. I’m most concerned over the pain in the base of her skull. Please encourage her to be examined by an Epileptologist. If you need any help with this, please let me know.
An answer to your question is the ER doc sent her to a Neurologist to cover areas in which he is not skilled. This relieves liability from the doctor and hospital. She should have been referred to an Epileptologist, but not many ER docs know this.
Remember, there is Hope. Knowledge will give you the power to overcome this condition and support, acceptance, and unconditional love will make the journey much easier.
Peace -
Terrific Tonya Heathco
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..NSDF talks about Conversion Disorder
I am sitting here reading all of these posts and I am seeing my 15 year old daughter in these comments. We have just been released from childrens hospital for the 3rd time on video eeg. I could swear to you that she is having a grand mal seizures with loss of urine anf biting tongue and saliva running down her face. Well the eeg says there is no abnormal eeg waves going on. I am so frusterated that i could cry. A 15yr old just doesnt wet the bed. We have been seeing a counselor and a psycharist anlong with the neurologist for months now. She does have epilepsy. please help.
Jill,
Non- epileptic seizures physically mimic epileptic seizures. It is possible for a seizure survivor to have both Epilepsy and PNES. I speak from experience because I have both. Find relief through support by reaching out to NSDF through information on this site and by connecting with our private seizure support group on FaceBook: http://www.facebook.com/groups/169922089687803/
To build your knowledge on the subject, we have two additional articles for you to consider:
http://nationalseizuredisordersfoundation.org/how-to-cope-with-pnes/
http://nationalseizuredisordersfoundation.org/conversion-disorder/
It’s important for you to know that in addition to helping her manage her stress, both of you will benefit as you learn the coping skills to manage your stress also. Let me know when you need help with this.
It seems you are on the right track for treatment. My only other suggestion is that she be examined by an epileptologist. If you need help finding one close to you, please let me know.
You are not alone -
Terrific Tonya Heathco, Founder
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..How to Cope with PNES
Hi,
I have a 17 year old daughter who started having a sudden on set of what we thought were seizures 4 weeks ago we have done the 3 day video monitoring with negative results. We were told she has a conversion disorder or pnes I am so lost where do I start to find the root of the problem and is there any meds that can help to calm them some for her they seem to be so violent and hard on her. She has also become very angry and bitter yelling and screaming and calling her family members names. Her friends have stopped coming by to see her which has made her become depressed I need some guidance if anyone has some.
Thanks so much for letting me read all of your story’s it helps to not feel alone.
Amy
Amy,
Thank you for coming to NSDF to find answers. You are not alone and neither is your daughter. Please connect with our private support group on FaceBook ( NSDF Community) by clicking on the Facebook button on this page. Also, continue to reach out. I am emailing you a private reply and you are welcome to connect with me through email if more convenient for you.
After being diagnosed with PNES and experiencing the violence of seizures, many people do become angry and bitter. Understand, her life and her future is changing. Right now she does not have the coping skills to manage this new change, her brain and body are still healing, and much of society will push her away just because they do not understand the disorder. She needs your love and acceptance more that ever right now. She also needs the acceptance and support of others going through the same issues. This support is plentiful in NSDF Community on Facebook. Although we are not doctors, our experience will help her and you gain coping skills needed so more moments of peace may be felt throughout each day. Please stay in touch and together we will find answers you need.
For more on this topic: http://nationalseizuredisordersfoundation.org/how-to-cope-with-pnes/ and http://nationalseizuredisordersfoundation.org/conversion-disorder/
Peace&Power -
Terrific Tonya Heathco
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..NSDF talks about Conversion Disorder
Hello, i’m 22 years old and was diagnosed with conversion disorder 2 years ago. I am seeing a psychiatrist and therapist to be treated for it. However, I have seizure episodes where I urinate myself and lose consciousness. Because of this my psychiatrist believes that I have a combination of conversion disorder and a seizure disorder…but the neurolgist I am seeing now believes that it is all psychological. This is the second neurologist I’ve been to. I researched PNES and didnt find anything on urinating yourself during an episode. This is a major reason why my psychiatrist believes theres more to it than conversion disorder. These past 2 years I have been treated like a mental case, been told that I am faking, and lost many friends. My life has become a complete and utter mess. On monday I will be having a 48 hr eeg. If this shows nothing then i will have to be admitted to the hospital for veeg. All i want is an answer….HELP!!!
I know you understand I am not a medical professional, however I do have plenty of experience in this area. A person can experience PNES and seizure disorder. Loss pf bladder or bowel during any seizure points toward and epileptic seizure which is registered in the brain and points toward seizure disorder. Begin keeping a journal of these events. Time – date- experience. If needed, ask friends and family that witness these events. If you remember the details of the last event, please begin with that one. A journal will help your doctor determine the best treatment for you.
I also suggest you be examined by an epileptologist. If unfamiliar, an epileptologist is a neurologist that specializes in epilepsy and all other seizure disorders. The have special training to read tests in a way no other doctor is able. I am a firm believer in being examined by an epileptologist because I went for 10 years misdiagnosed by neurologists until enrolling myself into a drug study headed by an epileptologist. Being examined by the right doctor will be the best thing you can do for your own health.
Through National Seizure Disorders Foundation, I am here to support you and help you find answers you need in order to achieve peace. Link with us through FaceBook and return often for more knowledge and support.
Above all know you are not alone -
Terrific Tonya Heathco, Founder&CEO
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..How to Cope with PNES
My daughter (47 years old) has always suffered with frequent migraines. However, recently, she had one so painful she was admitted to the hospital for testing. The tests revealed nothing. A few weeks later she had 2 seizures only minutes apart. She was hospitalized for three days and underwent every test the doctors could think of. They found nothing. What should be her next step?
Thanks for your help
Janet
Janet,
Keep in mind I am not a medical professional, however I do speak from over 20 years of experience.
While in the hospital, did the doctors perform a VEEG on her? This is a test that picks up seizure activity in the brain. It is done over 24hr-7days. Electrodes are placed all over her head and hooked to a monitor. The test also picks up on video.
Is her doctor a neurologist specializing in migraines and seizures, or an epileptologist specializing in seizures?
I will contact you via email. Much more needs to be discussed.
Prayers of Peace -
Terrific Tonya Heathco
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..NSDF presents “Share Your Story” with Èric Harris
this is how my seizures go. i have so much persperation in my hole head of hair {short] that the persperation runs done my neck. then my for head perspers. between these 2 times i can lower the temperture of my brain with in 3 to 5 min. if i do not they say that i go into convulsions, then i get eradick and if some one gets around me anything will happen. i have been to 4 hospitals, 6 doctors. nothing. ok that is enough about all that. the way that i have found to stop it for me is when i can catch it in the first 2 faces of the heat in the head is 4 pufs of a joint as i said it will reduce the heat in 3 to 5 min. it has never faled yet. phone # 318-757-6378
My wife started having weird feelings in her right arm and chest (tingling) in 2010. The family doctor prescribed her Effexor for a pinched nerve. Shortly after taking the meds she started feeling weird but per the advise of the doctor continued the meds. Shortly after my wife started having seizures in 2010 and saw a neurologist. The EEG showed everything was normal. First diagnosised it as PNES but after the seizures went away for about 8 months without medication they related it to the Effexor. Recently the seizures started again. This time the EEG showed they were seizures. She was put on meds and the seizures reduced from 3 a day to maybe 1 every 2 or 3 days. She had a MRI performed but everything was normal so now the Neurologist wants her to see a physciatrist for possible PNES. When asked why the EEG shows it not being normal, she said the movement of my wife could have caused the reading. When I research the web there could be many things that cause seizures but the first place we are being sent is mental health. My wife is very upset with the diagnosis. We are very confused and would appreciate any feed back..
Jeff,
has your wife been examined by an epileptologist? An epileptologist will be able to pick up on certain behaviors and read her tests in specific ways that no other doctor is able. Please have her seen by an epileptologist before putting too much stress on her about this diagnosis. The seizures very well could be from the Effexor. My research shows about 1% of Effexor users can develop seizures. Also, look into the reason your wife had the weird feelings. If the diagnosis was stress, the event that stressed her could have been enough to spawn PNES. A diagnosis of epilepsy and PNES in the same patient is also possible. Above all, let her know she is not alone and these symptoms are not fake or “in her head”. For both of you, National Seizure Disorders Foundation is here to give you hope and help you cope. Please connect with us again and let us know her true diagnosis once it is found.
I will keep in touch via email -
Terrific Tonya Heathco
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..NSDF Celebrates Purple Day!
Looking for help… My 9 year old daughter has been having difficulties since January and we have seen several doctors with so far no definite answer to her problems. She started out having ‘tics’ where her head would twitch to the left shoulder and her eyes also. Then on February 14th, she began falling asleep (passing out) for no apparent reason. She is asleep for a few seconds and awakes startled. They increased to the point that someone had to be with her all the time for fear of her falling while walking. It doesn’t matter if she is sitting, standing, or laying down. She has had other symptoms after that started, breathing very fast when she goes out and gasps for air when she comes back awake. She will sometimes now have a tic in her left arm and complains of her vision going blurry. She has had increased headaches since this has all been happening. She will sometimes shake all over like a seizure but will awake easily. She has been to the pediatrician, ER, cardiologist, neurologist, we’ve done a 24 eeg video monitor which resulted with nothing being wrong. My husband and I are so concerned about her. We have tried paying less attention to it to see if it could be a mind problem and she has done some better but still falls where we don’t always walk right with her. They have put her on medicine for anxiety and panic attacks. It really doesn’t seem to be helping her. I just took her to a psychiatrist who said that he would see her again in a month to check her meds, sent her back to school because she has missed since she has been falling, etc. and offered no diagnosis or anything. As a matter of fact, my daughter asked me if we were made to leave because the time was up. He handed us the paperwork for the front office in the middle of a sentence and showed us the door. I pray that there is someone out there who can help us. She has had no major trauma in her life, only some bullying at school and please don’t misunderstand me, I don’t take that lightly. To her, it’s very disturbing but I am just not sure that that is the root of her problem. Please help us with some kind of feedback…
tomorrow i see the psychiatrist at EMORY. I am going to voice my opinion that there has to be something more to this. the twitches, shakes, surges, seizures. all just too much and i vomit from them
I just got out of a 4 day hospital stay. I had this start 2 years ago, much like them 7 girls u hear about on the news. I have had the childhood trauma, and adult trauma, heart attacks, surgeries, recent thyroidectomy. THen just 2 weeks after that surgery, bam, full blows shakes tremors, seizures. I was taken by ambulance to hospital, and after 4 days and EEG diagnosed with PNES. I was give ativian TID, it helps but I somehow still believe this is something neuro not just stress. Just wanted to share. I am 37.
I was told that I have Pnes and the scary part is that on the 8th of Feb I go to see if I can get disablity. I had the 3 day eeg and video. Then I went to a therpist and he told me that I should look up on the web a guy that was getting beat up and acted like he was having seizure. The therpist said that was me and I never returned. I have seizures 2 to 3 a day and I am getting scared. I had a aneursym clipped 10 years ago, had to have 4 stunts, a pace maker, and a heart attack. The stunts, pacemaker and heart atack was in the last 2 years. I am having PVC of the heart. If the Doctors dont believe or have knowledge how can disablity know anything about it. My loving husband is with me 24/7 I had my liscence taken. What is the chances of disablity giving me help?
My advice about disability is to tell your worker everything about your medical history, including any bouts of depression. Remember to ask questions if the worker brings up something you do not understand and do not give up til you get awarded disability or have a reasonable answer that satisfies you.
Unfortunately there have been documented cases of people faking seizures to get out of legal trouble and there have been people actually seizing and being arrested because the police need more education in this area. NSDF is working on eradicating this social stigma through educating the public and our legal protectors.
As for fear, I understand your fear and also know that fear will not help you. If you do have an issue with fear, NSDF will help you resolve it. We are not professional counselors, yet we have the experience and resources to help you gain peace while living with seizures. Please connect with us for more about overcoming fear while living with seizures.
Refer to your private email for more follow up on this comment.
We’re here for you -
Tonya Heathco, Founder
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..Types Of Seizures:Part 1 of 4
It is possible that you have epilepsy ( the uncontrollable seizures) and PNES ( seizures not registering on EEG). You are not alone in this. Step back for a moment and consider your own health management…
Do you want to be on AED’s? Are the AED’s helping in seizure management is any way?
Remember, you have the final decision when iy comes to everything in your life, including healthcare.
PNES can result from any trauma, not just abuse or childhood trauma. You were in a traumatic car accident and the resulting surgery left you with necessary but traumatic results. In other words,there are artificial items in your skull that are necessary but the body acts as if they are a form of trauma.
To ease your concern, I would suggest you speak to your circle of support and your doctors about the possibility you have epilepsy and PNES. Epilepsy can be managed by AED’s( you may have to go through several before finding what works) and PNES managed with therapy.
You are not alone. National Seizure Disorders Foundation is finding numerous PNES patients daily. Many are confused because the diagnosis suggests abuse and trauma. One area not covered is the trauma we suffer each day due to the foods and chemicals we put into our body and the environment in which we live.
Peace -
Terrific Tonya Heathco
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..NSDF presents “Share Your Story” with Terrific Tonya Heathco
Thanks for your response. I really appreciate it. I am just frustrated and scared.
After re-reading my first post I apologies for being unclear and short. I was upset with with the Epileptologist as he basically informed me that I do not now and never have had a seziure in my life. He told my Wife & I that the “episodes” I experiance are all psychological & that with therapy, we may be able to reach the root of the problem. How about a car accident in 1985..that was when they started..ROOT!!! Sorry
My Neurologist is keeping me on some AEDs as we both have seen what happens when I change them or go w/o them. We both believe there still is some benefit to me staying on them while I start threrapy.
I see how you link the plates, wires & screws that my body views as a trauma, but then wouldn’t that then be a physical issue rathher than a psychological one? It really does not matter as I have no problem going to therapy rather I am just trying to understand this.
Thomas, I understand your frustration and fear. Please understand you are not alone. I am here for you as are the members of NSDF Community through facebook and offline. Remaining on aed’s during therapy is a good move as long as there are no unpleasant side effects you experience from weds. Are you keeping a seizure journal? This will show you progress and possible triggers.
The hardware in your skull is both a physical ans psychological stress and can be a major trigger for seizures of any type. Consider this stress and discover healthy ways to manage the stress. If you need help with this,please let me know. National Seizure Disorders Foundation is here to help you nonlinear and offline.
As for the root of the seizure episodes,you may be surprised. My advice is to be completely open in therapy with your past and present. You never know what will be found to benefit your seizure management.
Peace-you have active support here,
Tonya Heathco
National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..NSDF presents “Share Your Story” with Stuart Ross McCallum
Hi,
I have just returned from a follow-up appointment with the Epileptologist who performed a Video EEG on me this Fall with a diagnosis of PNES. He was not happy that my Neurologist still has me taking AEDs as “I am not having seizures!!” I was in a car accident in the mid 1980s, suffered an open head wound, underwent a craniotomy and have several plates, wires & screws in my skull.
I have had uncotrollable seizures since the accident which were exaherbated by a fall which resulted in a Class II concussion in December of 2008. Both my Neurologist my Family as well as myself were suprised to hear the PNES diagnosist.
My Neurologist is not an old school prescribe drugs just to be safe type of Doctor, he is rather, just the opposite and is with me in trying to figure out how I can best move forward w/o medications.
I am confused. I really do not know what to do. I was never abused, had a GREAT childhood and now feel as though I am being told the last twenty-some years of my life has all been a lie when in fact, I know I have seizures that all intially resulted from my first accident.
I am feeling lost and confused???
Hello
I have been dealing with siezures for over two years, drugs didnt help, eeg and video monitoring shows the episodes, and they decided it wasnt epilepsy, but pnes, and post traumatic stress syndrome. I have had to deal with the problem which has been very rough, my ex wife thought I was a fake, even though the doctors said I wasnt. But they finally sent me to a physcologist for some help, the fist one wasnt interested in helping me. I moved to another part of the state and finally had open heart surgery that other doctors didnt think was bad enough to fix at that point, they had no answers for my seizure issues other than I was a mental case. I have been on disability for two years for pdst anxiety attacks panic attacks, even though they had video of the sizures the one nuerologist said I was just mental and see a shrink. My seizures varied from lasting as long as 5 minutes to only several seconds, but has caused issues with short term memory. I just saw a new neurologist who said that my seizures were most likely pnes because my mri was good.
It is devestating it affects everything I do, I was just informed today that my disability pay is stopped since there wasnt enough support for the issue and the insurance company doesnt understand pnes. I cant work no one wants a person having seizure issues and since my short term memory is messed up I cant remember what to do or if I even done things. I am totally lost, I dont know what direction to turn anymore, my physcoloist supports me but others feel I am just nuts, and since the insurance company doesnt understand it and the doctor hasnt fully explained it to them I am just a piece of meat thrown out and they go well you are on your own sorry but not our problem you cant pay rent or for medical now.
How do you get doctors to understand and help, I have lost my friends, money, my home, lost respect of people who knew me. Frigging help me somehow, can you make the insurance company understand that this is real and can be horrible to deal with and being alone is even worse.
Mark,
Thank you for your well thought out comment. Your comment reminded me of what an interesting journey seizure disorders can become. Many of us have lost most of (or all of) our past lives including friends, family members, and occupations. Please realize you are not alone. You are invited to return here for more information and connect with me(tntonya) and a private group I administrate( NSDF Community) through Facebook. There are so many people waiting to accept you. Doctor-patient relationship is a topic I discuss here: http://nationalseizuredisordersfoundation.org/doctor-patient/ There is no way to change anothers’ view of our disabling condition. The best we can do is accept ourselves and one another while raising awareness in the medical community ( including ins co) and general public. The best we can do to help your insurance company understand your condition is to educate policy makers. Better yet, have an epileptologist examine you and submit paperwork to your insurance company stating that testing and medication and follow up is necessary to your better health, Please stay in touch, you are not alone.
Peace,
Terrific Tonya Heathco
National Seizure Disorders Foundation
My husband was recently diagnosed with PNES. We have an appointment to speak with his therapist this week. We were told not to do too much research about PNES on the internet, as there is misinformation out there regarding this condition. We feel confused and frustrated, even after finally getting some more definitive answers about his seizure condition.
The suggestion to refrain from research of PNES on the net is very common. This is because PNES is still fairly new and much of what is found is taken from patient experience and not from medical fact. Much information can be misunderstood. PNES is real and it is a seizure syndrome which means the body reacts in seizure mode yet the brain makes no neurological connection with seizure activity. Patients of PNES are not “faking it” and do need support. I encourage you to keep asking questions of doctors until you get all the answers possible. I also encourage you to join support groups online and offline that will give you and your husband the peace and support and resources you need. When on FaceBook, look up National Seizure Disorders Foundation Community and request to be added to the group. It’s a group I host and you will find the love, acceptance, and support needed there.
You and your husband are not alone,
Tonya Heathco, Founder
National Seizure Disorders Foundation
Thank you for putting the time and effort put into this informative site. P.n.e.s is one of the hardest DC to finally get the doctors to discover. It has been three years of testing and various doctors to finally get a Diagnosis. It is very frustrating. Due to all of this stress and not knowing, I fell into drespression and anxiety. I am still unsure that I am on the correct medication. How do I research this? Also, how do I bring this up to my doctor firmly, with out seeming like I am thinking I know better than he does?
Thank you again, Trista
Trista,
Great comment. Your working toward answers by reaching out.
Diagnosing and medicating PNES is a trial and error method. The symptoms of PNES are what must be treated. The seizures your body exudes should be treated with antiepileptic meds and the root of the PNES should be treated by seeing a psychologist or psychiatrist. You do know your body better than he does, however be open to his help. I will be emailing you soon as I believe this conversation should be outside of comments here. You are not alone
Peace -
Tonya Heathco, Founder
National Seizure Disorders Foundation
I have had a Left frontotemporal craniotomy clipping of anterior comminicating artery aneurysm on 10/4/03. I still Experience siezures since my surgery. I am told I need to make am appoitment with a epilogist to have a 4 vessal cerebral angiagram. And for Seizure control.This was reccomended by my Nuerosurgeon to be done. And I finally found one close to home I live in Kentucky. How do I make an appoitment?
Debbie, You are on the right track and together you and I will get this appointment set. I know you have questions and even some fears. Please connect with me through email, I’ll send you a hello first. Then when you are ready we will talk over the phone and get you set up with the right doctor.
Peace -
Terrific Tonya Heathco, Founder, National Seizure Disorders Foundation
Terrific Tonya Heathco recently posted..NSDF presents Share Your Story with Julie Hope
The subject of PNES is very complicated and challenging, but I’ll stick to 2 main points.
It is a seizure disorder even if it may not be an epileptic seizure disorder. People who experience these events feel shut out by the medical community. Basically, a neurologist tells you they can’t help you but they can’t really offer much of an alternative. You’re wasting their time.
Neurologists are likely to default to this explanation if your EEG doesn’t show clear spikes and waves. EEG is typically used to rule out epilepsy, which is not what it should be used for. (It is one piece of data that begins with the patient’s clinical history.) Neurologists should know that EEG, even with video, is unreliable. There are many seizures that don’t get picked up by scalp electrodes because the location is too deep or the area involved is too small. When you add a video camera to a detection technology that is quite limited, all you’re doing is adding pictures to incomplete data. Video does not begin to address the problem of seizures that aren’t picked up on the scalp.
I have written about the problem of negative EEGs being interpreted as PNES in my .
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Jessica,
The issues you speak of are exactly why National Seizure Disorders Foundation recommends all seizure patients get examined by an Epileptologist. Neurologist do misinterpret tests because they are not skilled enough to see specifics. Epileptologist know what they are and are not looking for in this type of testing. It’s a matter of poor education for professionals and seizure patients. Thank you for the information and for your efforts in spreading awareness.
Blessings -
Terrific Tonya Heathco
National Seizure Disorders Foundation
I am currently in the hospital on an eeg. I have pnes AND epileptic activity. How could I go about finding some answers? You mention Education reading the eeg better?
April,
My apologies for just now seeing this comment. To answer your issue, Epileptologists have the utmost education on correctly reading an eeg to give you the best answers. Another way I recommend compassionate and correct answers is to seek out a support community full of people who care. NSDF Community is available in FaceBook. Request admittance and we’ll accept you with love. Let me know if you need more on this subject. Upon closing, it is possible to have epilepsy and PNES. The more you learn about both, the more peace you will find. Please return often and learn all possible, read stories that will help you feel connected, and ask questions to get solid answers.
Peace -
Terrific Tonya Heathco, Founder
National Seizure Disorders Foundation
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Hi Tonya,
Thanks for sharing these interesting facts and the valuable educational information about the different types of epilepsy. You’ve helped us to see how important it is to be insistent about seeking treatment from trained Epileptologists who specialize in seizure disorders.
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Thank you for the quality comment and the compliment Loren, I look forward to reading more comments from you in the future. Recent statistics report 1 in 26 people today will either witness or experience a seizure during their lifetime. With this news, National Seizure Disorders Foundation is taking action to get information to those who will listen and learn. Taking a stand of peace, we are also focusing on eradicating social stigma related to seizure disorders. The best start in through knowledge.
Wow, thank you Tonya Heathco for bringing this information to light about PNES. It makes sense when we consider the amazing capabilities that human body has in adapting and surviving severe stress and abuse. I think that the recommendations for proper diagnosis and treatment are excellent as well.
David H. Paul
Adult Foster Care Provider
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Thank you for the comment David. PNES has been excuses for years by doctors as a condition many can manage with stress reduction. Sadly to say much of the medical profession does not consider the fact that many PNES patients also have epilepsy left untreated because most doctors refuse to look past the PNES to get to other neurological issues.