Aug 262011
 

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.

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 survivor to seek counseling through psychotherapy  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 survivors 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% seizure survivors have been misdiagnosed because much of the diagnosis relies on descriptions reported by observers.
  • Upon correct diagnosis it is reported about 10% of PNES survivors 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 survivor, 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.

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  129 Responses to “PNES: Seizure Disorder or Neurological Mystery?”

  1. I may have posted this on the wrong site I am very confused and dont know what to make about my experience. At 40 i began having periods of absense. I was sent to a neurologist with no unusual EEG reading. After a few months the period of absence contined and the neurologist reffered me to a psychologist who diagnosed me with disassociative disorder. I continued to see him without any change in periods of absence. Then at work I suffered What seemed to be a Grand Mal and the hospital Neurologist stated it was in fact seizures and put me on Dilainant which worked for a number of months before the side effects were too serve and other new medications did not work. I was then referred to NYU hospital and it was determined after a number of tests that i suffered from seizures even without any past events before they they began and no found cause.. I was given right temperal lobe surgery and was seizure free for 5 years before the they returned with a vengence. I have been having them now for two years, one worse than the last with no medications working. Another surgery may be recommended if this continues. I am quite frightened. Can it be possible that I may be suffering from sizures and PNES. Clould one cause the other? we recently went through another battery of tests.; video/EEG( I seizured after the removal of all medicationsand)and was given an MMPI . After the tests medications were changed. I have been seizure free for a few months and have been waiting for a new event,and wonder if it will be the last? l don’t know if the Video/EEG showed a seizure or the removal of medications actually caused the seizure.. I m frighted that we are barking up the wrong tree.. I would like to know what other professional think.

  2. My daughter has been having PNES seizures for 5 years now she is 17 and cannot drive or get a job! She was diagnosed in Boston 5 years ago by a neruoligist they increase with stress but can be very unpredictable, she has to do virtual high school because she would have multiple seizures in school . She did have a trauma in her childhood and is the bravest kid i know . She is leary of college and working at this point ! My older daughter who is an Art major in college did a documentary on Bailey It is on you tube Called "Post To Present" Please check it out. Anxiety meds did not help her at all but EMDR helped a lot! It was diffucult for her to go through but it worked!

  3. My heart and prayers go out to all of you because our 15 yr. old daughter has also been diagnosed with PNES. After a very traumatic, medical injury in October 2013, she began having violent convulsions and a wide array of different episodes that continue to this day. We adopted our daughter from terrible conditions in a Romanian orphanage and she came to America at 2 1/2 years old and although she was quite traumatized, she gradually began to come out of her shell. She was doing very well until she had to have her jaw wired shut due to a injury and somehow the pain and trauma brought back painful memories of her past. We have done all of the testing and now she is undergoing regular therapy but her quality of life has completely changed and she is suffering so much from this unpredictable and mysterious medical condition. We are desperately trying to give her all of the love and support that we possibly can but there just is not enough resources on PNES and we feel so defeated at times. Although it gives us some comfort that we are not alone, it is also frustrating and disheartening to know that there are so many people suffering with this condition.

    God Bless you all,

    Susan

    • Susan, be not dismayed, you are not alone. I applaud your courage and love displayed by adopting an orphan from Romania. Please feel free to connect with us on FaceBook and other social media. There is help and there is Hope as together we walk the journey to positive seizure management.

      Need assistance in staying connected? Let us know.

      Tonya Heathco
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..NSDF Living with Seizure Disorder Newsletter Feb 2014

  4. I was recently in the hospital. I fell out of the bed and hit my head hard. over the course of the next day I had what looked like seizures. but, I failed the hand drop to the face test, and the resisting to open my eyes test , and the squirting water on my neck test. I have not had any more seizure type activity but continue to have a lot of neurological problems. What could of been happening if I wasn’t having a sezure..because I was not faking and it really concerns me.

  5. I have been suffering from seizure for a very short term …one month! I have been in and out of the hospital 5times now in the last moth. Nobody has answers and just pump me up with anti psychotics and sent me on my way home telling me that they aren’t seizures and that I’m too stressed. And need a psychiatrist and therapy. Granted I need those things but 30 seizures a day is ridiculous…..I am completely useless at this time I am so exhausted …i have three beautiful children a house to maintain a husband who needs me to be function able. Thanks for all this website info it is helping …

    • Dani,

      Right now it may seem that you are useless. This is because you have no real answers as to what is happening. I encourage you to be examined by an Epileptologist or a Neurologist specializing in seizures ( not all of them do). I also encourage you to have the doctor order a Video EEG to determine whether these seizures are epileptic or non-epileptic. And, my last piece is to invite you to consider joining our private seizure support group on Facebook, NSDF Community. When you are ready and need help with any of this, please let me know.

      You are not crazy and you are not alone -
      Tonya Heathco, Founder
      National Seizure Disorders Foundation

  6. HI IM A 44 YEAR OLD MAN WHO HAS HAD A VERY ABUSIVE CHILDHOOD AND ON JUNE 3 I HAD A SEIZURE (OR SO I THINK) I have never been to the hosp in 30 years during my stay at hosp. I was on life support for two days I haad renal failure also I was there for 17 days I have been having seizures for the last 5 months I went on a 48 hour eeg they found nothing and said I had pnes I was baffled they told me to go to therapist and physcologist they say it is very rear in men they say it could take months or years of therapy to get rid of that blows my mind cause I have seizures every day and they are really bad I have been refered to brigham and womens hosp for a group they have its suppose to be a study on pnes so we will see

    • Robert,

      I took the liberty to friend you on FB. I do encourage you to move forward with the PNES study. You may help yourself and others! We meet people, men women and children, living with PNES quite often. The right specialist for you to see is a neuropsychologist. These specialist help you manage abuse, PTSD, and other issues along with PNES. The childhood abuse is key to your PNES and the right trigger just happened to occur to set off the seizures. PNES is your bodies way of dealing with the trauma your conscious or your mind does not want to manage. The seizures in Epilepsy and PNES manifest physically to look the same however PNES does not register in the brain the same way Epilepsy does. Your seizures are real and they may be treatable through therapy. However, most anti seizure meds may create complications resulting in more seizures so please be careful of any meds you take. I encourage you to be examined by an Epilpetologist to discover more and set up a few weeks of therapy with a neurophycologist to help you gain the coping skills you need to put the trauma to rest and manage daily stresses that may trigger seizures. Also, begin to keep a seizure journal by writing down the time and day and type of seizure you experience as well as any happening before the seizure.
      Thank you for reaching out – you are not alone -
      Tonya Heathco
      National Seizure Disorders Foundation

  7. Hi my 25 year old daughter has been through every test possible and the conclusion always comes back to she has PNES. We live the Tampa Bay Area of FL and every hospital, doctor or psychiatric person we have spoken to has no idea how to treat PNES. Nor can they refer us to someone who can. We are desparetly trying to get her help with not much success. It’s been very draining and an emotional problem for our daughter and our family. Do you core group of doctors that we can reach out to for help

    Thanks

  8. Hi! My sister is having seizures that the doctor have not yet figure out what is causing it and what type of seizures it is. She is been fight to get an answer since May2013 and nothing yet. She is getting worst. What should I do to help?

    • Just being there with support can make all the difference.
      .
      My boyfriend is my caretaker. After a seizure he often has to feed me, dress me, and help me focus while incoherent. He also reminds me of things I may have forgotten due to episodes… Small stuff, like what chores I still need to do, and bigger stuff, like happy memories we’ve made. Things like “Remember that trip we took to ____?” and helping fill in some of the lost details can really help me focus on something positive and turn my whole day around :)

  9. Why does it feel like we have no hope and no light at the end of the tunnel. I been having seizures since December of 2012 and they DO NOT get better. I currently have a psychotherapist, and have been through 3 different neurologists. I have had a standard EEG as well as a 48 Hour Ambulatory EEG and through that it was decided that months of taking anti-epilepsy medication that it was not epilepsy but in fact PNES (or so we think).

    My seizures are mainly absence seizures (5-7 per day) and i will have about 3-5 convulsion seizures a week. I have random memory loss and many broken bones to support the falls. I have driven since my first seizure and the thought of driving is absolutely horrifying.

    The hardest part about my PNES and its complications are the drastic array of emotions that I will go through in a regular day. I feel like that I am constantly angry at everything and everyone one minute, but than the next minute I am crying uncontrollably. Nobody has an answer for why the emotions or why the drastic changes. Just more questions left unanswered in my difficult times.

    What I do not understand is why the diagnosis was established for myself and my treatment did not improve, than why doesn’t anybody want to further look into any other possible diagnosis. I feel like once a doctor said that this is what it is than they give up and do not care anymore to see if it is something different. There was a study that said that a majority of epilepsy patients are actually misdiagnosed, but if we all in someway was originally misdiagnosed and now given the title of “PNES” than what are the chances that it could be something different.

    What can the future hold for someone that suffers from PNES? What light can be at the end of the tunnel when we have no plan of action except a therapist. I for one am not a personal fan of therapist/ psychologist, considering PNES is derived from traumatic experiences from your childhood and my abusive father is a psychologist.

  10. Hi,

    I’m 16 years old and my seizures started in December of 2012. I was diagnosed with PNES in February after many tests and started seeing a therapist. I have had upwards of 20 ambulance rides in the last 5 months. My teenage life is going down the drain due to my seizures. My neurologists (from children’s hospital Boston, one of the top hospitals!) have given up on me.They are stumped by my seizures as there is no epileptic activity…but something has to be wrong! Even psychogenic seizures don’t just happen…something in your brain must happen because it just doesn’t make sense. I’ve started to wonder if maybe I have something that doctors have yet to discover. is that possible? I’m so frustrated because a 16 year old should not have to live like this and I’m doing everything I can in therapy but are there other treatment suggestions you might have? Thanks.

  11. Hi there I’m a 41 year old female and I’m confused about my condition. I have severe Scoliosis and Herrington Rod placement and I have a Syrinx the neurologist said it’s thin but a Syrinx is a Syrinx. I don’t care how small or how thin it is and it’s location is very high up in the neck exact location is unknown. My first encounter with PNES was in 2005 after my second nervous breakdown. At 19 I was diagnosed with SMI Severe OCD one Psychiatrist described it as the worst OCD that he had ever seen as well as having PTSD and Borderline Personality Disorder and General Anxiety Disorder. All of 2005 not one seizure just a lot of body shaking and head flopping back and forth and side to side and other involuntary Automatisms. The seizures actually started in 2011 and my blood pressure dropped so low that the EMT took me to the ED and I went through a bunch of tests and I was released and I was told to see my psychiatrist or I could have surgery for my Syrinx. I left the hospital and I started counseling and I take full responsibility for processing the trauma in my life but here’s where my journey gets a little more challenging because four months ago all the symptoms of my PNES returned but my seizures are changing and I just saw an Neurologist and he started me on Depakote and he ordered a number of tests on me starting with the muscle test and an EEG and an MRI and I started having severe convulsions and was losing consciousness and memory lapse and my body was shaking and my eyes rolled back in my head and I was hitting myself in the face and biting my tongue during the 30 minute EEG and the lady who did the test panicked and ran to get the Dr.s and he said that he didn’t see anything on the EEG I went back to see the neurologist and he gave me Oxcarbazepine and that stopped all of the seizure activity until a couple of weeks ago when I suffered a day and a half migraine and I was so mean to my day that whole day just grouchy and testy and then by Sun morning I was making my way down the hall to make my breakfast and I got really dizzy and I was losing my balance and I was in and out of it by the time I was in the kitchen I was going into the PNES movements with my head shaking from side to side and my right arm flying off and while I was making my toast and then all of a sudden I saw black right in front of me and for like five seconds and I made my way to the kitchen table and the first seizure started and then a couple of minutes the second seizure and by that time I was barely cognizant and then the third came a couple of minutes later and this was the worst one that I have ever had and I remember my body going stiff as a board and that’s all I remember until the Fire Department got there and were over me and I still felt like I was hanging outside of my body and I could barely hear them and I couldn’t respond to them and they took my BP and it was 90 over 70 all the way down and they put oxygen on me and they started and iv but I was unresponsive like I could barely feel myself there or something like that and then they put me in the ambulance and on the way to the hospital the ambulance lady hit me in the chest and told me to just stop it and that scared the crap out of me because I still hadn’t come to fully yet and I was still having tremors but the seizure part was over and my body just felt depleted and then the other ambulance guy took my arms and gently placed them across my chest and held his hands over me and the first thing that I hear from the nurse in the ED and once they had wheeled me into a room and I’m still not fully able to respond she tells me that I’m here with my seizure bull and you could tell that the next word that was coming was going to be shit and my parents hadn’t gotten to the ED yet and so I was still pretty scared and in the ED they did even more testing and nothing is coming up MRI CT all were clean and the Dr. invited me to check into their behavioral center and I respectfully declined and my symptoms are not the same I’m not able to see words clearly and I have Migraine headaches that can last for minutes to hours to days and then a severe seizure will come on and I have stuttering and memory problems and the thing that really concerns me is that my Mom has MS and my grandmother has Alzheimers disease I’m back in to therapy for my PNES and PTSD but because the severity of my condition I’m doing in home therapy and I’m thinking that maybe something more is going on here but what sorry about the grammar my mind just doesn’t work like it use to and I’m not sure what it could be and if all the tests are coming back clean any advice that you can give me would be appreciated, thanks Sincerely, Kelly

    • Kellyann,

      Know that we will do everything within our power to ensure you feel accepted and gain the support and resources you need in order to enjoy a higher quality of life. I have responded in depth privately. Always now, you have the option of believing in positive possibilities!

      You are not Alone –

      Tonya Heathco,CEO
      National Seizure Disorders Foundation

  12. My daughter had her first seizure in December of 2012. This seizure was tonic-clonic seizure and lasted a very short time (20-30 seconds). After that she went 6 weeks and had another seizure, then 4 weeks, then 2 weeks, and then she was in a car accident. Since the car accident she is having episodes usually once a day, sometimes twice and have spiked to as many as 5. She underwent Video-EEG for 2 days and has had 2 other EEG’s show no epileptic activity. She has been diagnosed with PNES and has begun seeing a psychologist. They don’t seem to be getting better, but the episodes have morphed. It started with tonic-clonic seizures, then it went to what looked like absence seizures where she had no convulsing, then went back to short periods of convusling, and now they are similar to a panic attack where her heart races and she has difficulty breathing, stops breathing periodically during the episode (but no shaking). Then when she does awaken she can’t move her extremities for a minute or so, then they slowly start to come back and she can move her body starting with her left shoulder and moving down to her foot, then her right shoulder and then down to her foot. She complains that her whole body “hurts” but can’t really explain the type of pain. It does subside eventually. We just want her to be a normal kid and she is trying very hard to attend school and her teachers and other students have been VERY patient with her episodes. Today the episodes changed again and she seemed to go in and out of the episode where she could communicate with us that she had difficulty breathing and that her body hurt, but then would tense up again and then sort of pass out. Her heart rate remains constant the entire time, but she seems to stop breathing for 20-30 seconds at a time. We’ve had nurses with us when this is happening and her blood pressure is always constant. Should we be concerned about the breathing? Are all of these symptoms “typical” of PNES (understanding that there is no norm per say)? Thanks for any help you can give.

    • Tommy,

      PNES is a seizure disorder that does not register in the brain as epileptic activity however it manifest physically just as any seizure. With tonic clonic and other seizures, a cease in breathing is a common report. This does need to be monitored.

      I encourage you , your wife, and your daughter to join our private seizure support community on FaceBook – NSDF Community. All of you need the extensive support. Need help with this? Just let me know.

      Please understand your daughter is a normal girl. She is extraordinary in the fact that she lives through seizures. Please resume family life as close to ordinary as possible. Begin a seizure journal and learn to recognize her seizure triggers. Also, learn more about PNES. It’s important she get the right help and support to work through the trauma causing the PNES in order to maintain positive seizure management. NSDF can help with this. Just let us know when you are ready for this education and support.

      I have your email and will connect with you privately soon.

      Hang onto Hope and you will find Peace -

      Tonya Heathco,CEO
      National Seizure Disorders Foundation

      • Tonya,
        We would LOVE any support and/or help. In fact, yesterday my daughter had another episode and when she awoke has lost over a year’s worth of memory. We are very distraught and are grasping for answers. Have you seen/heard of this type of memory before? Thanks and I look forward to speaking with you.

        Tommy

        • Tommy,
          National Seizure Disorders Foundation can provide the support and resources you need. Yes, it has been reported that seizure survivors lose memory of a year or more depending on the type of seizure and the Foci of seizure(where they occur in the brain). It is possible for your daughter to experience PNES and Epilepsy I encourage you to have her examined by an Epileptologist in order to correctly distinguish if these are non-epileptic(PNES) or Epileptic seizures or both. When you need help finding and Epileptologist in your area, please email me at terrifictonya@nsdf.us from there I will send you more resources and my personal phone number for extensive one on one support.
          You are not alone – continue to hang onto hope,

          Tonya Heathco, CEO
          National Seizure Disorders Foundation

  13. I just submitted a request to join your Facebook page. I really need the support. I was just diagnosed by my neurologist who specializes in seizures last week and he referred me to 3 different psychiatrists who are not on my insurance plan. I really need help finding someone who specializes in treatment, as well as a support group. This is affecting my ability to work, and my quality of life is diminishing. Since being in the hospital and getting the diagnosis, I have fewer seizures, but I really want to get therapy to get through the PTSD that I strongly believe is behind it. While my life now has very little stress, my past life was very stressful and I was a victim to multiple violent attacks by my ex-husband who has now alienated me from our 4 children. Especially this day after Mother’s day, it is all very painful. I live in north Dallas and would appreciate any information you can provide to help me in my quest for healing. Thanks so much!

    • Nickolette,

      I applaud your bravery in sharing your experience with our readers. You are not alone. National Seizure Disorders Foundation has the help you need. We will do our best to point you in the right direction for help in managing your health issues causing the seizures. I look forward to helping you during your journey toward positive seizure management. I look forward to connecting with you through NSDF Community on FaceBook and when you are ready, speaking with you on the phone.

      Think on Peace and Hang onto Hope -
      Tonya Heathco,CEO
      National Seizure Disorders Foundation

  14. I live in Oregon, a state that takes your drivers license if you have seizures. She drives and says that they don’t take her license because her seizures are not neurological. What’s the difference? It seems rather unsafe to me?

    • Denise , same with calif , must be seizure free , for 1 yr , must also , have a drs letters/ notes , of what meditcation , they are on when was last seizure . its a 3 page letter that drs fill out ..
      next time ask this question , ” what if i hits a child , or pregnant woman , family , or have a head on with another car , or maybe a lawyer , i have seizures since i was 8 yrs old , i am 60 now , driven only once in my life , that was to get a drivers license , past all the test 100%.. my dad never wanted me to drive .. because i could hurt either myself , or hurt many others & could sue me .. to where i could lose everything .. you see , with my seizures , i have no warning ,even talked with DMV , of Calif , they told me ,” what if ” too , i would be held in responsible… even with the drs note , the drs can be sued also , many now a day , dont want that .. lets say , this too on even certain jobs , what if you was a carpenter , fixing a high rise , or cooking in a nice hotel with fire , & had a seizure , same thing .. you would be injured , or maybe some one else .. think the next time you get into that car , truck , , ask your self one question , will i have one ? will it be an infant , coming home , from the hospital , with the mother who just given birth ? or would it be a lawyer , who just won his case , coming home to his family .. there has been many like this on the news , family from England , on vacation , was stopping in for meds , crushed to death , was father , & child , 8 yrs old , mother lost her child , & her husband .. another one was a car dealership , mention , a lady on hiway 50 , just brought her car from the dealership , on her way home crashed , due to seizure ,

    • Denise,
      The difference is in the medical proof of epileptic seizure. States pull license in the case of epileptic seizures as a way to encourage survivors to take their meds and get regular check ups in order to control seizure activity. This process is ridiculous because many seizure survivors have no control and even if one goes without seizures for 6 months, who says the seizures won’t manifest again due to the stress of driving. Driving is a choice of responsibility. It is unsafe to have a history of seizures and continue to drive no matter what the cause of seizures or diagnosis. Of course, this choice is a personal responsibility choice and people should not be judged by our personal standards.

      Thank you for your opinion -
      Tonya Heathco, CEO
      National Seizure Disorders Foundation

  15. tanya,
    I am so comforted by knowing your foundation is there for those challenged by seizures and have no explanations. My 15 year old daughter is suffering from non-epileptic seizures for the last several months. She has been hospitalized, had 2 video EEGs, and has been evaluated by multiple neurologists and epilepsy has been ruled out. Blood tests show no vitamin deficiencies. Eighteen months ago she had surgery for a Chiari malformation and has suffered with constant headaches,and arm tremors. Now she has seizures about 4 times daily and they come in clusters. She is on anti-anxiety meds but no improvement.I have not been able to find a psychologist or psychiatrist in our area(near Philadelphia) who is familiar with PNES. Perhaps you have information on effective psychotherapists you could share. Thanks for being there.

    • Debbie,

      Thank you for the compliments and kind words. I have some questions and insight for you:

      Has your daughter undergone a flow study for correct flow of cerebral spinal fuid?

      Has she underbone MRI’s lying down and standing up?

      MRI is a study done in a recumbant(laying down) position, CANNOT be accurate with its flow analysis all the time.. due to lack of gravity and position

      My research and experience shows that Chari and Seizures are not related however, one does trigger the other. Seizures are common in children affected by Chari. As research increases, I will keep you informed.

      Thank you for trusting in NSDF and helping bring order to seizure disorders.

      Tonya Heathco,CEO
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..NSDF Living with Seizure Disorder April 2013 Newsletter

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  17. My daughter age 18 recently starting going through this. She was diagnosed with PNES after an over night EEG and video monitoring revealed there was not disruption of the electrical charges in her brain when she was going through the seizures. (She had a total of 8 that night) Although relieved it isn’t epilepsy we are facing another set of challenges. The seizures do not come often, although they are still coming. I am afraid to allow her to drive as we do not know when they will manifest. I am curious also if any one can tell me if their child was also diagnosed with a UTI at the time the seizures where going on? Two hospitals and her general practitioner tested her urine and found she had what looked like the beginning of a UTI, the hospital she had the EEG at told me they did a microscopic slide of her urine and found no UTI. At her follow up visit two days later I asked her doctor to test for it again, and he came back with a positive for which she had antibiotics prescribed. I was told when I asked that the UTI had nothing to do with the seizure attacks but I still remain curious.

    • Carefully consider her driving responsibilities. Many states do not allow driving until the seizure survivor is seizure free for 6-12 months. Also, driving is a responsibility that carries with it stress which may induce more seizures. If she chooses to drive, she must be ready to assume complete responsibility should she hurt herself or someone else or minor property.

      When a body experiences seizures and the stress associated, naturally the immune system is lowered.UTI is common among people living with all types of seizure because of this fact. My suggestion is she take prescribed antibacterial or antibiotic, increase water intake by 20 ounces a day, refrain from caffeine and carbonated products( they irritate inflammation), reduce yeast and sugar containing products(they increase infection). Also, keep record of the UTI’s if she experiences more than 3 in a years time, she needs to be examined by a Urologist. The UTI does not cause the seizures so in that affect it has nothing to do with the seizures. However, the stress of illness and infection creates enough stress on the body to trigger seizures. Rest is imperative while she heals.

      Let me know if we can be of further assistance -

      Tonya Heathco, CEO
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..NSDF Living with Seizure Disorder April 2013 Newsletter

  18. Hi Tonya,
    So glad I found this site! My sister (age 50) has suddenly started having seizures with no apparent neurological component. She has had an MRI, blood work, etc. and everything is negative. She hasn’t been able to work for three weeks now, and the frequency of these episodes continues to increase, and she is almost debilitated.. My question – she has them numerous times each night while she is sound asleep. Is this a characteristic of PNES? We are desperately searching for a diagnosis.
    Thank you so much for your help.

    • A proper diagnosis will come from a skilled neurologist specializing in seizure disorders/epilepsy or an Epileptologist. Always be bold and ask the doctor what amount of experience he has with seizure disorders. If none, ask for an examination from a qualified specialist.

      This activity is considered nocturnal seizures and may be the effect of stress built up during the day. The difference between Epilepsy and PNES is discovered by a 2-7 day VEEG test( video EEG). This should be the next step in diagnosis. Nocturnal seizures are not specific to PNES. Any type of seizure activity can occur with PNES.

      It’s important she be comfortable in sleeping during the day and allowing her body to sleep as long as she is able. Do not force sleep, instead allow her to sleep as long and often as she is comfortable.

      Also, ask her doctor to check her vitamin and mineral levels. A healthy level of Vit D. magnesium, and Vit B are essential to well managed stress and seizure activity. It is possible these are not seizures at all but just a deficiency of vitamins and minerals.

      Consider asking her to limit caffeine and other external stressors. These too can trigger seizure activity.

      Please let us know when you are in need of more support -

      Tonya Heathco, CEO
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..NSDF Living with Seizure Disorder April 2013 Newsletter

  19. Hi,

    I am so glad I came across this webpage. I am 25 years old and have suffered from seizures since 2008. I did have two years seizure free however I had one in October 2012 that again was unexplained. I have had many tests in the past CT scans, MRI scans, Tilt tests, Heart monitors, to find a cause for these unexplained seizures and as yet I have not had an answer. I was discharged from the Neurologists care in 2010 and am now under a neurologist again who has arranged an EEG. Can this tell if I actually have PNES as it may sound like I do.
    I did have a difficult childhood, my brother who is 15 months older than me, was diagnosed with a brain tumour aged 5, and he relapsed with another tumour aged 8. I saw him very sick and feel this may have affected me in some way, I suffer from anxiety and constantly worry about day to day things, however I am a therapy radiographer now treating cancer patients and feel a great sense of dedication from the job I do. I do not deal with stress very well and it always seems to be during stressful situations that seizures present themselves. I lost my maternal grandfather in 2008 and my paternal grandfather in April 2012 which affected me greatly. I did not eat a lot and sleep was out of the question, it affected me so bad and obviously the seizures did not help. I have positive control over my life now, unfortunately when the last episode occured in October 2012 I was again very stressed as my brother was awaiting surgery on a third brain tumour. I just wonder if this could be PNES affecting me as neurologically they have not found anything wrong with me.

  20. My stepdaughter recently passed out at work. After 4 days in the hospital and every test under the sun she was told there is nothing physically wrong with her. When she passes out she goes into a sleep like state, staring straight ahead. She does not have convolusions. This has lasted up to a few hours. When she comes to, she needs some time to figure things out. They discharged her & told her to find a neurologist. Someone must have told her about PNES because she asked me to look it up for her. Based on the symptoms, I’m not 100% this is the correct diagnosis either. Can anyone give some answers or guidance where to turn. We lived near the Philadelphia, PA region. Thank you.

  21. I have a 16 year old who began having seizures in December 2012. They started as what seemed like fainting spells but progressively got worse with body jerking. She also has developed body twitching between seizures. I think she may be having issues while she is sleeping because she often wakes up more tired than when she went to bed. She has had an MRI, echocardiogram, CT, EEG, and video EEG all came back normal. Our next step is a psychologist. Is there anything I should be asking at this point? More testing? A second opinion? She is on Celexa and Ativan but is still having episodes. Please help!

    • I responded via private email to ensure you get the support you deserve.
      Thank you for coming to NSDF today and sharing some of your experience as a caregiver. You seem to be on the right track for answers. Know you have power as an advocate. Let your daughter know if at anytime she does not understand what the doctors are saying, you will be there to advocate for her until both of you understand her situation to the best of your ability.
      Seems you have all the testing covered. If you have a “gut feeling” about the seizures, don’t stop asking “why” until you find a doctor that listens and responds well. You( your daughter) always has the right to a second opinion. Before you jump into getting one, consider why you want one. Examine your own feelings. If you find yourself in denial, the problem will not become better with a second opinion.
      Keep track of theses seizures and the relation to her taking Celexa. Seizures is a side effect of Celexa if one is predisposed to seizure disorder, just keep that in mind and ask your pharmacist for more information.

      I look forward to hearing from you again soon -

      Tonya Heathco, CEO
      National Seizure Disorders Foundation

  22. I am so incredibly frustrated and angry right now. My 8 year old daughter was diagnosed with epilepsy in 2008. She has had what I can only imagine are true epileptic seizures several times over the years. However, this past Dec. she started having PNES and they are getting more frequent and longer. Her neurologist has been most unhelpful. Once he determined some of her seizures are apparently PNES he has stopped responding when I inform him of these attacks, not provided the promised referral to a mental healthcare provider, nor set up the video study he previously felt was warranted. Tonight I emergency paged him. My daughter had one of these episodes and was begging to go to the ER or have diastat because she doesn’t “want to be stuck like this forever.” After 30 minutes I went ahead and gave diastat (which she hates) and it did not work. An hour after the diastat is when I paged. I told him what had been going on and that she was complaining of being hungry, that her arm was hurting from being stuck in position for so long, etc. He kind of laughed and said, “well, tell her to move her arm then and go eat.” He went on to say I could wait her out, otherwise, the only advice he could give me was to go to the ER and have a Mobile Crisis Team come evaluate her and have her admitted to a Psych Unit!! He said she should be there a week or two. What!?! I think he’s the one who needs to go to a psych unit!!!!! I am so far beyond angry. I live in Nashville and there are not a lot of peds neuro’s available. My only option is to go to Vandy peds neuro. We’ve been there before and they are so overrun with patients that most of their work is done over the phone – that’s why we left. But maybe I made a mistaked. And I have no idea if any of them are actual epileptologists there. The school is getting frustrated at this point as well – class is disrupted often by a seizure or PNES and they have even had to call 911 twice in the last week. I am at my wit’s end as well. If I had not been recently laid off, I would probably have been fired once all this started because I’m always having to pick her up from school, or let her sleep in after heavy meds, etc. At least this way I have unemployment but I can’t live on it for long. How am I going to get a new job like this though? I need some direction. Please! And thank you.

    • I reached out and offered a private email to you today. Please use the number given and contact me soon. Together we will find answers to your daughters status and to help you heal frustration, anger, and fear.
      We at National Seizure Disorders Foundation and NSDF Community walk this journey with you, understanding exactly what you are experiencing because we too experience seizure disorder.

      I know I will here from you soon.

      Feel Peace in this moment -

      Tonya Heathco,CEO
      National Seizure Disorders Foundation
      NSDF Community on FaceBook

      • Hi, I have been going through the exact situation as Michelle A. who posted above. My son started having seizures at 4 and took an EEG and it showed activity. He was placed on meds and was ok for 2 years. All other EEG’s and MRI’s are normal and does not show any problems. This past December he started having problems and each time he was admitted to the hospital the EEGs are not capturing anything. On the last visit a few doctors in the ER saw what he was going through and did not think he was having seizures so they had him do yet again another EEG for 4 days and again no epileptic seizure activity. They are not saying it may be PNES but his neurologist is not being very clear on this topic or explaining what this all means and it not returning my calls. We went all these years thinking he has been suffering from seizures and was placed on 2 seizure meds at a high dose and to now find out he may not have needed these meds is very confusing and try to get better answers as to how to help him is getting frustrating.

        • Corina,

          We at National Seizure Disorders Foundation help parents like you through the frustration and fear in situations like these. We also offer you a private seizure support group through FaceBook to help you realize you are not alone. Consider joining NSDF Community today.

          Until then, understand seizure disorder is extremely difficult to pin point and maintain control. This is because we still know so little about the brain and just when everything seems to be under control, the seizure survivors body goes through a life change, change in stress levels, or change in brain/body chemicals all of which can trigger seizures because they lower seizure threshold. Your sons seizures may be deep in his brain or perhaps the doctor
          looking over the tests does not see what needs to be seen.

          NSDF suggests that people – unhappy with the change in seizure status or perhaps feeling as if the current diagnosis is just not telling the whole story – consult with an Epileptologist to begin finding answers. Clear the confusion and have your child examined by an Epileptologist. Need help finding one in your area? Please let us know so we can serve you best.

          Peace-
          Tonya Heathco,CEO
          National Seizure Disorders Foundation

        • You just described my life. So frustrating as a parent. :(

  23. what about PNES and memory lost ? I still believe that the inf, still there but I cant access it for the moment. Is this possible or to be considerate ? Neurologist said, once the data is deleted, it is gone. If PNES are considered a natural defense machanism of the brain, kind of like a SHUT OFF switch, where does the memory lost come into play ? Where can I find an epileptoligist? Thank you so much, I appreciate your support.

    • One major role in losing memory when related to diagnosis of PNES is stress and trauma. As stress and trauma are worked through and resolved, memories can be rebuilt. Yes, you may lose the original memory for a time, but it is better described as hidden instead of lost. There are researchers that believe every memory we hold is deep inside our DNA, so I believe it logical and possible to believe our memories are retrievable. One way to retrieve memories helpful in healing PNES is hypnosis guided by a skilled therapist under the advisement of your doctor. It’s always wise to begin work on your stress level before retrieving past memories and you can begin this today by getting a physical in which your doctor runs levels on key nutrients such as Vitamin D and your hormone levels including Thyroid hormone. Vit D and hormone levels, when low, will increase memory loss and stress as well as depression.

      As for an Epileptologist, National Seizure Disorders Foundation can help you with this, I will contact you privately for the information needed from you.

      I invite you to look us up on FaceBook and consider joining our private seizure support group, NSDF Community. While living with any type of seizure activity support online and offline is crucial. NSDF Community provides positive support within a safe community.

      Peace -

      Tonya Heathco, CEO
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..Living with Seizure Disorder Newsletter December 2012

  24. My husband has been diagnosed for many years with PNES, PTSD and is bipolar. There have been many occasions where he has had amnesia and paralysis. The amnesia has always scared me as he has thought he was 15 again and didn’t know my or our children, but as of late he has experienced 2 episodes where he would come out of the seizure and not know anything at all. About 3-4 hours will pass he would have another seizure and wake up with all of his memories plus remember what happened. We were traveling by car the first time this happened and I took him to the er we were passing. Unfortunately the hospital staff was not capable of helping him and he decided to walk out. I am curious if anyone else has delt with this type so scenario of amnesia?

    • Ann,
      We at NSDF encourage you and your husband to become members of our private support community at FaceBook. Simply click here and request to join. We are hearing of amnesia and paralysis more often associated with epileptic and non-epileptic seizures. In our article “NSDF talks about Conversion Disorder” We discuss the different effects of conversion disorder which include paralysis and amnesia. The article is a good resource to take to his doctor and begin a discussion.

      Please let us know how we can be of more support.

      Peace and Power -

      Tonya Heathco,Founder&CEO
      National Seizure Disorders Foundation

  25. Eddie,

    You and I spoke of this today on the phone. When you find you are losing Hope, please take time to refocus on why you are with your wife. Focusing on why you are with your wife will help you gain perspective and energy to keep up the good work you are doing in her life. National Seizure Disorders Foundation is researching into this for you to help you and your wife find answers you both deserve. I know Epstein Barr can trigger seizures because of the stress it puts on the brain and body. I know PNES can be the result of the trauma caused by Epstein Barr. I applaud your willingness to stay with your wife during this journey. I will let you know as we discover more about PNES and providers in your area.
    Terrific Tonya Heathco recently posted..What does a seizure feel like?

    • Terrific Tonya–
      I hate to tell you this, but unfortunately there is no concrete answer to your question about what a seizure feels like, as EVERY seizure is different and every person experiences them differently. I can tell you how I experience them in a generic fashion, (I think I mentioned every seizure’s different, lol). My most prevalent seizures are what are commonly known as Grand Mal seizures. I think they’re called something else every time I do research on them, but most people understand “grand mal.” First, I scream. According to my sister, it’s horrifying and unique. She knows what’s happening regardless of where she is in the house. Then I curl up into the fetal position so tightly no one can un-tuck me. I generally bite my tongue, (always the right side), and afterward have a horrific headache and sleep for about 3-4 hours. I don’t “convulse”, a seizure does NOT have to involve convulsions to be a seizure. Once I “sleep it off”, however, I am generally fine other than the achy muscles from curling so tightly and the memory loss. Most of the memories come back, but not all and not always. My friends describe my memory as Swiss Cheese, which is the only way I can laugh about it, otherwise it’s very depressing. The only thing that I can tell you that IS consistent with everyone who has a seizure disorder is that he or she needs support, understanding, and love because chances are it’s more scary for him or her than for any onlookers.

      • Kate -

        Thank you for taking time to comment on this post. Your words are valuable and appreciated.

        I am well aware each seizure is different as I experience 5 different types in my journey. Each one is different and much of the time each time the seizure is different even if I have many of the same type in one day. I am uncertain where you picked up that question, but I am glad you are aware and you are bold enough to speak out.

        NSDF is honored that you share your seizure experience with our readers. The Tonic Clonic ( or Gran Mal) you described does not include convulsions but does include seizing which is why you have pain after curling up in a ball. Have you been examined by an Epileptologist?

        I enjoyed your advice and encouragement. I encourage you to consider entering into online support through our private seizure support group on Facebook. There you will find support, understanding, acceptance, and love: NSDF Community

        Peace&Power -

        Tonya Heathco, CEO&Founder
        National Seizure Disorders Foundation

  26. My wife was diagnosed with PNES at Tampa General last year. She recently had a stroke and was hospitalized for 1 month at Naples Community Hospital. With therapy there she regained speech use of her left arm but not hand and some movement of her left leg. When her medicaid ran out she was immediately released from the hospital to fend on her own because they could not find a rehab facility.
    One week later she had another stroke and was put into the ICU at Physicians Regional Hospital. She has paralysis on her left side but they saw her move her arm and leg when she was sleeping so they are discharging her tomorrow. They say that she is faking it and probably has Munchausen Syndrome.
    Can PNES manifest itself into paralysis to appear like a stroke? Because she doesn’t fit the profile for this.
    Thank you for anyone’s input

    • Mike,

      Was your wife tested at a level 4 Epilepsy Center? Was she seen by an Epileptologist? Was PNES diagnosed after the stroke? Trauma from stroke may lead to PNES. PNES is not a fake neurological disease yet many doctors treat it as such because it cannot be seen on tests. I encourage you to check around local hospitals for seizure studies, stroke studies, and PNES studies. Many times these studies will bless you with the right doctor as they did me here in Tennessee. Seizures can manifest into physical symptoms similar to stroke and paralysis. PNES is the physical manifestation of seizures with no epileptic brain activity. I invite you to gain more support through our FaceBook seizure support community – NSDF Community. We’re private and supportive. You and your wife are both welcome to join.
      I also encourage you to learn more here:http://nationalseizuredisordersfoundation.org/how-to-cope-with-pnes/

      You both are in pour prayers -

      Tonya Heathco, Founder&CEO
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..NSDF Newsletter October 2012

  27. Please help!!!!!!!!!!!!!! I have a 9 year.old daughter who has been diagnosed with PNES. Am really trying to find out more about this illness. Because I am getting from doctors so far is to just let her go thru with the seizure til she comes out no need to call 911 because they should only last from 5 mins. to 30 mins. But my baby have for the past two weeks had a seizure that are lasting longer now(last week 1 and 25mins and today almost 3 hrs) and I feel that something isn’s right. I need to know what is going on with my baby. I talk to her PCP today while at the E.R. and he is stating that she need to get back sooner to her neurologist doctor sooner than in November. And yes I agree,and so do her teacher and principle at school because they are witnessing her going through this as well. Plese help me with some information and I would love to have extra support like a group who is going through this as well. I have friends and family support but I feel as they not truely understanding what I am going through with my baby girl. And what hurt the most is I can’t seem to be able to help her at times(when I look at her and see she is hurting). And also she has narcolepsy which came on when she was 6yrs. old. So my child have two conditions that she is dealing with. I do know that God has her and he will help us get through this,but it do get hard at times because there so much going on.

    • meant to say 1hr. and 25mins.

      • Anytime there is a dramatic change in the type or length or recovery time of seizure, 911 should be called. Also, when you talk with her neurologist again, have him prescribe a “rescue” medication of Diastat to be given during lengthy seizures.

        Much love -
        Tonya Heathco
        National Seizure Disorders Foundation
        Terrific Tonya Heathco recently posted..NSDF presents Doggy Dollars Campaign

    • Rita,

      I know from personal experience how heart wrenching watching a loved one go through the motions of PNES. My daughter has both epileptic seizures from a genetic disorder and PNES. I am here to tell you there is hope. Hope that you,your daughter, and your family will find peace during this journey. NSDF has resources to teach you more about PNES:http://nationalseizuredisordersfoundation.org/how-to-cope-with-pnes/
      We also have a private seizure support group on FaceBook I encourage you to join, NSDF Community. I also advise that your daughter be examined by a pediatric epileptologist and a psychologist familiar with PNES or PTSD. A crucial exam for doctors to engage in with her is a VEEG, Video-EEG, This will allow doctors to view what she experiences while a machine records activity in her brain. This is one test that will determine epileptic seizure from non-epileptic seizure. One cannot tell just by viewing her activity while she goes through a seizure, brain activity must be monitored. If you need help finding and Epileptologist in your area, please let me know.

      I will follow this with an email. Please stay in touch so that we can help you further.

      You are no longer alone,

      Tonya Heathco, Founder&President
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..Seizure Experience: Through a Mother’s Eyes

      • Thanks, Mrs. Tonya. I am taking her to see her neurologist in two weeks to see about how to go about getting her a second test did to be reassure about her. She had a video-EEG did in May at LeBonheur. But not sure if he was an Epileptogist or not. So if you don’t mine please help me with some Epileptogist here in Memphis,TN? I just don’t feel good about her having a seizure for a hour or two and he saying that it not effecting her brain. But that why I would like to be in a group to learn more about this illiness and to help with understanding, And be able to communicate with people going through the same with love ones.Once again “thanks”.

        • National Seizure Disorders Foundation will help you find an epileptologist in Memphis. I will look for you and friend you on FaceBook then add you to NSDF Community so you will have a secure and friendly community to go to with your concerns over seizures. More than likely the seizures your daughter experienced were a cluster of seizures and not one long seizure. Either way, these are serious. The seizures will not result in any permanent brain damage, but she may have significant memory loss. I can say this with confidence out of experience. There was a time several years ago I had 5 tonic-clonic( gran mal) seizures one after another with no rest in between. This cluster is referred to as status epilepticus and when these reoccur doctors usually prescribe a medication to break them up, a rescue medication. I look forward to speaking with you more about the seizures she experiences. Please if you will, send your contact information to terrifictonya@nsdf.us so I can contact you when an Epileptologist is found in your area.

          Peace&Hope-

          Terrific Tonya Heathco
          National Seizure Disorders Foundation
          “We Bring Order to Seizure Disorders”
          Terrific Tonya Heathco recently posted..NSDF Newsletter October 2012

        • Rita, I have found information and sent it to your email. You and I need to talk. Please reply to my email(NSDF37029@gmail.com) with a good contact number for you so we can further discuss details.

          Feel Peace in Every Moment -

          Terrific Tonya Heathco
          National Seizure Disorders Foundation

          • Mrs. Tonya upon receive of this email,please contact me at XXX.XXX.XXXX I really need to ask you some things relating to my daughter. I just really need help,am so emotional. One doctor say this,another say this. Please Help!!!!!!

          • I applaud your bravery for helping yourself and your daughter by reaching out and requesting phone contact. In answer to your request, we talked and you now have more support and reassurance.

            Thank you for helping NSDF help you!

  28. PLEASE HELP! My adult daughter started using alcohol about 3 months ago to squelch her anxiety and panic attacks. Then about 3 weeks ago she started having seizures. After her seizure attacks she would act out and be irrational for a period of time. When she had her last seizure, she was on a cement floor and according to witnesses, hit her head pretty hard on the floor. She was taken to the ER for about 3 hours and they did a cat scan which was normal. However, after she was released from the ER, she was really acting up, was irrational and not her self at all.

    Do you have any information on others acting out after seizure activity or after a hard blow to the head?

    • Is your daughter currently under the care of a doctor? Has she been examined by an Epileptologist? Many seizure survivors do act out in different ways after a seizure. This is because the brain is not completely under control immediately after a seizure. The severity of acting out depends on where in the brain the seizure originates. Your comment leads me to believe the seizures may either be PNES related, which is manageable or a result of mixing meds with alcohol also manageable. My advice, have her seen by an epileptologist for testing to rule out underlying seizure disorder and have her seen by a qualified therapist to address PNES issues. For you and for your daughter I also suggest you consider online and offline support. NSDF offers this service free, online we have NSDF Community on FaceBook and email support. Offline, we have scheduled support via phone or Skype. Please keep communication open with us and continue to learn more from out website. As a follow up I will email this comment reply to you. NSDF looks forward to helping you and your daughter find peace. This journey is not a fast paced short walk, it is a lifetime experience and you are not alone.

      Peace&Hope –

      Terrific Tonya Heathco,Founder
      National Seizure Disorders Foundation

  29. PLEASE HELP! My adult daughter started using alcohol about 3 months ago to squelch her anxiety and panic attacks. Then about 3 weeks ago she started having seizures. After her seizure attacks she would act out and be irrational for a period of time. When she had her last seizure, she was on a cement floor and according to witnesses hit her head pretty hard. She was taken to the ER for about 3 hours and they did a cat scan which was normal. However, after she was released from the ER, she was really acting up, was irrational and not her self at all.

    Do you have any information on others acting out after seizure activity or after a hard blow to the head?

  30. I have been monitering my physical perameters too hard I suspect leading to a severe anxiety attack that I believe may be related to a seizure.please hear me out and then reply.
    I am 41 male,I had an episode where I was working outside on a hot day and and had to stop what I was doing and run to the kitchen sink as I was shaking, my head was very hot,I was short of breath and very scared I was gonna have a stroke.since then I have developed what I believe to be severe paranoya of that episode or if it was simply the fear that was driving the entirety of it.Every couple of weeks I would notice(or imagine?)that I am too hot or I can not breath which surges my heart rate up and I start to get scared.Suddenly I can not hardly breath, I start to feel the gravity pulling me to the ground taking me to my knees….my mind is scattering as this goes on for a few minutes then goes away.I can catch this and actuall beat it by asking for gods hand in on this and other mental tools but I believe now that this whole thing is driven by fear I create when micro managing my brething performance and my temp….Am I making any sense?heip please.

    • Ron,

      Thank you for revealing this piece of your life to our readers. I know your recall of this episode will reach others in need and show them they are safe and accepted here at national Seizure Disorders Foundation. I applaud your courage.

      Have you been examined by a doctor since this episode? By the recall of events, it seems you were very near heatstroke which can cause the same symptoms and lead to seizure. You are not alone in feeling the fear. It appears you may be experiencing anxiety, or extreme fear. Fear can be faced and with the right support and right tools, the fear can be managed and even melted away. There is Hope.

      First things first, as soon as possible get seen by a doctor to consider the current level of your health. After knowing where you stand physically, you will be better prepared to move forward spiritually to manage fear. When you are ready to move forward toward Peace, please connect with me by leaving a comment here, or connecting through Facebook or other networks by using the buttons to your right on this page. There is Hope and you are not alone. I will feel more comfortable moving forward on this once your health is screened by a medical professional.

      Until then, stay out of the heat and know you have power to overcome fear.

      Terrific Tonya Heathco,Founder
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..NSDF Newsletter August 2012

  31. Please help! My daughter was very stressed after the breakup with her boyfriend. She was having medical problems that required her to visit an emergency room on 6/25/12. While in the ER, she became very upset and uncontroable they had to Baker Act her, they then started her on Celexa and Risperdal. They released her on 6/27/2012 and five minutes later had a Grand Mal seizure or what looked like a seizure. They re-admitted her to the medical floor and ran a ct scan, mri, and eeg; all were negative. She then had another seizure on 6/29 and still the tests were negative. We found out that she was having a reaction to the risperdal. She was now having trouble speaking and could not communicate at all. She followed commands but nothing else. They wanted to transfer her back to the phy unit. This is when I asked for a transfter to another hospital which felt would have been a better hospital to treat her. The next hospital had to be voluntary so we instructed her to sign the documents and she did so. Well, on her second day there she tried to leave out of the doors and they felt she had to be Baker Act again and transferred to a third hospital but before she left the second hospital she was given Risperdal again by accident and after the tranfer she had another seizure. The doctors at the third hospital started her on Keppra. After this her seizures are uncontrollable, the first day after receiving this medicine she had seizures ALL DAY. The neurologist seen this and immediatly put her under and put her on a breathing tube. She is sedated but not heavily, she had been this way since Saturday(6/30). She is now on four different seizure medications, and she still have seizures while sedated. The doctors fully awake her every day to see if she has seizures when awake and she does so they sedate her again. They cannot find what is wrong and she can’t remain asleep forever. They can’t give me any answers and this is very frustrating. What could cause this and can it be treated?

    • I gave an incorrect date, my daughter has been sedated since Saturday(7/7),

      • I am so sorry for what has happened. When they put my hubby on antiepileptic- they actually made him have seziures. They finally put him on gabapentin and he stopped having them (he still has them due to his PNES) but no more every 30 mins petit mal seziures. Definately get the meds checked!!

        • This is what happens all too often. A person has a physical seizure and is treated by an untrained medical professional. No one is to blame because no one knows in that moment. Suddenly the patient is given an AED ( anti-epileptic drug)that not only is ineffective for the patients issues, but often helps the brain develop more seizure activity. This is where the responsibility of family or caregiver come in… When someone you love is being seen for seizures, talk to the doctor. Find out the doctors history in treating seizures and his medical title. Also, be clear ( even put it in writing) that you are to be consulted before any meds are given to the patient. When an AED is prescribed, ask “why”. If the doctor is unsure what to do ask for a second opinion. Once a person we love is in a medical emergency it is up to us as caregivers to do the right thing and protect them. All AED’s have potential of producing seizures when given to someone not experiencing true epileptic seizures. It’s a thin line between the two and only the patience history and specific specialists will be able to tell us the right move to make. Danyelle, I encourage you and your husband to surround yourselves with loving support to help you both through this time of need. You will find such support online and offline through NSDF. When you are ready, let us know and we will point you in the right direction.

          Peace& Hope -

          Terrific Tonya Heathco
          National Seizure Disorders Foundation
          Terrific Tonya Heathco recently posted..Newsletter July 2012

    • Cathy,

      Once in awhile I come across a comment that urges me to pick up the phone and connect with the person directly. Your comment is one of those. When you feel comfortable talking on the phone or through email, please let me know by sending me a short note at NSDF37029@gmail.com. Since reading your comment days ago you and your daughter have been in my prayers and on my mind. National Seizure Disorders Foundation will provide solutions that will help guide you and your daughter to peace. NSDF will also provide what you need as a caregiver to find peace in your daily life even though you feel such turmoil at this point. Although your story is unique, you are not alone. We offer free support, online and offline and we offer information and education you need in order to create order within seizure disorder. Some questions to answer follow: Has your daughter been seen by an epileptologist? Has she been seen by a neuro-psychologist? Know as a caregiver it is your responsibility to double check with every person in contact with her to make sure they know of her incompatibility to Respiradone. I will continue this in a private email. My final thoughts, the trauma your daughter confronted initially was enough to trigger PNES. The AED’s given to her triggered seizures because her seizures were not truly epileptic. Now both you and your daughter are on a journey to living a new life. There is a reason. No, you can’t go back – no one is able. But you will move forward. With the help and support of NSDF. You will learn to adapt to this life altering seizure disorder.

      Peace&Healing -

      Terrific Tonya Heathco
      National Seizure Disorders Foundation
      Terrific Tonya Heathco recently posted..Newsletter July 2012

    • Cathy – Something kind of similar is happening with a family member of mine as far as still having seizures while sedated. Was any doctor ever able to figure out how to stop the seizure activity? I would love some insight because the doctors we are working with aren’t sure what happened and how else to treat.

      • Lacy&Cathy, Was information explained to the person experiencing the seizure that a side effect of sedation can be seizures? If it was the sedative, the information is important to future medical issues. Keep this information along with the rest of the seizure survivors medical records. Also, please understand that whatever the cause, one a person experiences a seizure they are sensitive to developing Epilepsy. Does not mean it will happen, just something to be aware of for the future.

        Always tell doctors and pharmacists about these seizures.

        Peace -

        Terrific Tonya Heathco
        National Seizure Disorders Foundation
        Terrific Tonya Heathco recently posted..Seizure Experience: Through a Mother’s Eyes

  32. My 18 year old daughter was in a pretty bad car accident last week that left her banged up and her car totaled. Five days after the accident she began having, what looked like, grand-mal seizures. After a 4 day hospital stay and a VEEG, it has been determined that she has PNES. She has also began vomiting every night. Is this ever going to stop? Will she be able to return to college this fall? She is having about 4-7 seizures a day and right now I don’t even feel comfortable letting her sleep out of my site. Should I have her sleep in her bedroom and try to make life as “normal” as possible or do I watch her every second of the day? She has a therapist but she doesn’t specialize in PNES. Is there some type of special therapy program for PNES? We live in the Indianapolis area. Any help or direction you could give me would be very, very appreciated. Thank you so much.

    • From my experience, your daughters PNES is related to trauma as most PNES cases are. This is good news because you can work on this trauma. Some PNES patients aren’t ever aware of the trauma that brings on PNES. I’m doing some research for you in order to get you connected with a therapist that will help. The vomiting and seizures will stop when the trauma is realized and taken care of. The best you can do for her directly is to love her unconditionally, accept her as she is, act as if the seizures are no big deal, and tell family and friends to do the same. Why act as if seizures are no big deal? Because with PNES if the seizure survivor ( your daughter) or caregiver( you and others) act like seizures are traumatizing, then the PNES will only continue and get worse. Be proactive and positive by continuing on caring for her as if the seizures are just another part of life. Make life as normal as possible. Don’t allow her to drive until the PNES is under control. See that she eats healthy small meals several times a day and stays hydrated. Learn to adapt and help her learn to adapt by getting positive support through National Seizure Disorders Foundation and on FB in our private group NSDF Community. Support for both of you is important. We have you and your daughter on our prayer for peace list. I will let you know what the research for a therapist shows up. Take time for yourself and take good care of your mind and body by eating healthy, getting quality sleep, and doing something for yourself at least once a week. You are important too! You are not alone in this journey. NSDF is here for both of you.

      Peace -
      Terrific Tonya Heathco recently posted..NSDF presents “Share Your Story”with Bob Nimmo

      • Tonya, thank you so much. I look forward to hearing from you about caregivers in the Indianapolis area. I can’t tell you how nice it is to have someone talk to me who actually understands what my daughter is going through. Thank you for adding us to the prayer list. We have gone all day without a seizure. Hoping this continues.

        Blessings,
        Bernie

  33. I was diagnosed with epilepsy at the age of 18. After testing it was found that the activity cause by scaring on my right temporal lobe . I had a right temporal lobectomy in 1989. Before surgery I had complex partial seizures. after surgury I had tonic clonics. My seizure were controlled for 15years untill reciently I’ve been having auras similar to what I would expierence before a tonic clonic. Saw and Epileptolgist who put me on a new med. a couple of weeks ago I had what I thoug was a cluster of seizures and ended up in the ER. The ER doc said they couldnt be seizures because I did’nt lose control of my bladder or other functions and did’nt bite my tounge. I’ve had 2 EEGs since March. First one was abnormal with activity on both sides. The last one was Thur last week. I am going in for a VEEG on Fri this week. My concern now is he is going to say that this is PNES. I’ve been doing a lot of research on the subjet and I’m starting to get concerned also. I know you can’t believe every thing on the net

    • Thank you for coming to NSDF with your information. I know what you write will help many coming here to find they are not alone. You too, my friend, are not alone. I encourage you to have the VEEG and follow up by getting the results, no matter what they may be. A diagnosis of PNES is manageable. To date there are no medications or cures specifically for PNES, however there are coping skills one can learn in order to manage the seizure activity. You have hope and you have support here at National Seizure Disorders Foundation. I encourage you to find our private support group on FaceBook and request entry: http://www.facebook.com/groups/169922089687803/ I also encourage you to keep in touch. NSDF is here for you every step of your journey.
      Terrific Tonya Heathco recently posted..How to Cope with PNES

    • Finished the 7 day viedo eeg on Friday. Had what I thought were seizures but the epileptolgist said they loooked like seizures but did now show on the eeg. Now starts the appointment with a. Therapist. I will keep you posted on my journey

  34. 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?

    • Josie,
      Your sons actions are typical for someone new to seizures and PNES. Especially someone of his age. Right now he is scared but may not want to reveal that he has fear. My best advice to you is to tell him several times a day that you are ready to help him when he is ready to help himself. Let him know you support him and love him and he is wonderful just the way he is – PNES, ADHD, and all! I truly believe the children being diagnosed with PNES today have a special calling on their future. As parents and elders it is our responsibility to guide these special children into their future while showing them love and acceptance.

      I’m glad to see you found your way into NSDF Community on Facebook. Support for you as a caregiver is crucial. When he is ready, please let him know he is welcome into our group to find others that are walking the same journey. Many times knowing that one is not alone is a strong support in itself.

      At the end of my comment you will find another NSDF article on PNES. Read it and encourage your son to read as much as he desires on PNES. Knowledge is power and power is needed to overcome this invisible illness.

      Always know NSDF and NSDF Community are here for both of you. You are not alone.

      Peace -
      Terrific Tonya Heathco recently posted..How to Cope with PNES

  35. 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

  36. 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

  37. 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

  38. 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.

  39. 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

  40. 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

  41. 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

  42. 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

  43. 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…

  44. 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

  45. 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.

  46. 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

  47. 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

  48. 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???

  49. 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

  50. 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

  51. 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

  52. 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

  53. 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 .
    Jessica recently posted..
    “Your EEG was negative.” Don’t bet on it.

    • 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
          Terrific Tonya Heathco recently posted..National Seizure Disorders Foundation presents Jeff Conn and Cole

  54. 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.
    Loren Greig recently posted..Time Management and Project Management Tools for Success

    • 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.

  55. 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
    David Paul recently posted..Outwitting The Six Ghosts of Fear One At a Time

    • 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.

  56. Hi Kathleen, Thank you for the powerful comment and the shout out from Porter TX. Keep on Clickin and remember to connect with NSDF through social media using the buttons provided on this page. You will see, NSDF is growing all the time online and offline in order to journey with millions of people like US down the path of positive seizure management. I look forward to reading more comments from you on our other pages built with love.

    Peace -

    Tonya
    Terrific Tonya Heathco recently posted..Share Your Story – Cindy Lou & Lou’s LifeSaver

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