Recently, I have been reading a lot about quality of life in PNES so that is what I am going to write about today.
Two years ago, as part of a research project that our group presented as a poster at the American Epilepsy Society in which we compared self-reports of quality of life in patients with PNES and in patients with severe epilepsy. Our study found that quality of life reported by patients with PNES was worse than in the epilepsy patients. In fact, patients with PNES reported significantly lower total quality of life, energy, mental functioning (i.e. memory, concentration) and worry about having seizures. Similar reports have been coming out over the last few years (e.g. University of Cincinnati).
So the obvious question is: why? Some answers that have been proposed are:
1) The number of seizures you are having brings your life down. But some studies have not confirmed this.
2) Some have found that if your seizures stop completely, your quality of life improves.
3) In separate papers, Drs. Szaflarski and LaFrance have suggested that depression is higher in this group of patients and that makes a major dent in quality of life.
4) Some say that side effects from medication may play a role.
As usual, there must be multiple factors that are playing a role here. The real limitations (e.g. job loss, driving privileges loss, social isolation) and loss-of-control not knowing when an attack will come are similar in epilepsy and PNES. But the often painful history you carry (remember, 90% report trauma in their history) when you have PNES obviously has the potential to have a profound effect on depression, anxiety and clearly how good you feel your life is. Could the trauma history be a main reason as to why there is so much suffering? What do you think? I want to hear your opinions because no one knows this disorder better than you since you live with it day to day.
When I actually had a partial complex seizure disorder as a child, the doctor finally found a combination of medications that controlled the seizures. Now, as an adult survivor of physical child abuse at the hands of my parents, I have PNES that has continued for over 10 years despite every attempt at controlling it. They started out as just an embarrassment that occurred overnight. Last month I had one while I was driving and totaled my car. My therapist has been seeing me for almost 6 years, she’s great, but like most mental health professionals (including the NP that does my medication management) the PNES is something she has never had any prior experience with.
I came across the Northeast Regional Epilepsy Group website during my latest attempt at researching PNES online. My PNES eval is coming up on 2/7/12. I hope they can help me. My husband and I are even willing to pay out of pocket if we have to because they don’t take our insurance.
I’ve been researching NES recently due to someone I knew who just passed away from it and she was only 34 years old. She left behind a young child which is quite sad and what got me so confused on the matter was she had a good quality life with no history of health conditions and it was 2015 she had her first seizure and to pass away 2018 has me thinking how serious this can be . what I can’t find on the subject is that this condition can cause early premature death I no it can lower ur quality of life by up to 10 years if it becomes recurring but not when it takes a life just after 3 years. It shows how little information and help u can get here in my country and if it doesn’t snatch up your life it leaves u feeling like a prisoner. And I think it takes one person like myself to start speaking out an to honor this family friend by creating some awareness in this country that been new Zealand which is a small start I reckon
I think there is an element of denial, “Why is this happening to ME?”. The people around me say “It’s all in you’re head, so stop it”. Many medical professionals have never heard of it. I was recently in the ER, when I went into seizures. The security guard told the nurse I was shaking, she said to ignore me because I was “just faking it”.
The seizures are highly unpredictable and come on suddenly. I have to depend on other people for so many things. I feel I’m a burden, I scare people when they see me going thru yet another episode, I can’t make any plans, trial and error with medicines is almost unbearable, the side effects create a life for me that I can’t participate in, weight gain and suicidal thaought can’t be ignored, I’m called an “invalid” by those nearest and dearest to me.
I can no longer work, go for a walk, focus on a book, bathe without supervision or carry on an decent conversation, especially on the phone. The expected time of the recovery of this disorder has been described to me as unknown.
There’s always a false hope, if I don’t have sysmptoms for a day or two, that maybe I’m on the mend! Then it hits me again. It’s physically painful, mentally a very hard landing back into reality, and spiritually such a heartbreaker.It’s very depressing & frustruating.
Yes, it is a poor quality of life on every level.
Christine and Rhonda are right, PNES does get in the way of how my life used to be. I could drive, work in my shop, have a social life and be a productive member within my family. It was a wonderful 55 years. My life has changed – no Pollyanna story here – simply changed. Four to twelve seizures a day were tough to get used to but I did change my life expectations. The medical profession does not know about this condition. Neurologists, Psychiatrists, Psychologists and Primary Care Physicians all need enlightenment and training. The diagnosis of being “hysterical” or “faking it” is far behind us. Good luck to us all.
I am a victim of this problem.When I am 10 year my teacher punished me in school.From them ,iam having seizure once in a weak.Now I am 25 years old.In first I have the problem once in 2 or 3 month now its in a weak.I am neglected by all of my friend.I take them in a embarrassing situation.I want to get relief from the problem is ther no way.How I can reduce my anxity specially related with exam,teacher fobia.My EEg,Mri report is normal.How I can be sure that this is NES not appliepse.I am from Bangladesh.Shall I have to live my whole life with this problem,My condition is very poor …….:(
My husband has PNES, has since he was 8 or so. Since I have taken on his battle with him I have become furious at the lack of knowledge and support he has on all levels of professional care. He has been abandoned by several therapists, doctors don’t want to take on such a contraversial diagnosis. There is also a lack of professionals with knowledge of this problem. My husbands old family doctor ignorantly started my husband on tegratol 20 years ago and although it is in no way actually helping him, it dopes him up so much that when he does have seizures at night he hardly remembers them. The dose has gone up to 8 pills a night over the years to have any effect on him. It is a TOXIC dose of a potent and outdated drug, but it has become his security blanket and he cannot bear the thought of a night with out it. I have come to learn how destructive this medication is on his quality of life and how that impacts every single aspect of my life as well as our three childrens’ lives. Currently we live in PA and just contact your NJ group. Sadly we found out that our insurance is non-transferrable state to state. If I have to, I will move our family to NY or NJ so we can be seen by someone who can give him some relief, a chance at happiness. As hard as a major move like that will be, living the rest of our lives with his PNES untreated will be a hell far worse. If you can recommend anyone in PA with knowledge in this field, I would be grateful. Currently he is in touch with LaFrance’s assistant in order to participate in clinical research just to interact with someone who can possibly give him some relief.
Sarah, I am sorry to hear about the insurance limitations that don’t allow you to see someone in NY or NJ. Let’s brainstorm to see what you can do that won’t involve a whole relocation. You can check this list to find a neuropsychiatrist in Pennsylvania who can assess his current medication regimen http://www.anpaonline.org/directory.php?cs_config_country_field=countrySelect&cs_config_state_field=stateSelect&cs_config_country_default=countryDefault&cs_config_state_default=stateDefault&countryDefault=USA&stateDefault=&profession=Neuropsychiatry&country=USA&state=PA&public=
And if you are able to find a psychologist through his neuropsychiatrist or through the epilepsy center where he was diagnosed, please put them in touch with me and I will share what we do here in NY and NJ: handouts, exercises, etc. I am available for phone consultations with his psychologist too.
Samiha, Thank you for contacting us. Consult with the neurologists who read your EEG; they can better explain what diagnosis they think you have. You must speak to a medical doctor specialized in neurology to begin to better understand your condition. Wish you the best.
I was dx. With epilepsy 9years ago. I have this episodes only at night. More then a year ago, I stared having this other type of seizures. My Neurologist send me to a epilepsy monitor center at Dallas were I was Dx. Also with PNES, this illness is worse than the experience with epileptic seizures as they are more frequent about 5 or 9 a week. I was taking 3000mg of Keppra xr every night and lamictal 300mg 2times a day. They are decreasing Keppra but I’m going to continue with lamictal for my epilepsy. My life has change a lot ,I depend on my family because I have this seizures in the car,alone and when there is people . I know what you are been through. Im afraid of having this type a ,seizures all the time.
You shouldn’t be driving when you have PNES or any other seizure disorder. That is very dangerous. You could die or kill someone else on the road. What are you going to do when you have a seizure on the high way or going down a busy street? I have psychogenic non-epileptic seizures everyday, but even if they were less frequent, like once a month, I still wouldn’t have the guts to go behind the wheel. I don’t know when or if I ever will be able to. I have to say, developing PNES was about the scariest, worst thing that I have ever faced in my life. I don’t doubt that epileptics would have better quality of life than those of us who were diagnosed with PNES, NES or just plain idiopathic seizures. There’s just no treatment. I tried everything from anti-convulsants, anti-epileptics and anti-depressants to psychotherapy and cognitive behavior therapy. The neuro can’t figure it out, and tells me they’re not epileptic. They just can’t help. It seems impossible to live at this point. I can’t even work anymore. My employer is scared of me. I work at a museum where kids go. Getting strapped onto a gurney and rolled out while shaking and losing awareness, right where kids can see. It feels horrible. I don’t want to traumatize them, or anyone else. That’s what really makes life hard for people like us.
I’ve got a whole list of reasons my life might be less fun than someone with real epilepsy.
1) No one can tell me why this is happening to me. An epileptic may have to deal with the seizures all the same, however, there is most likely a clear prognosis for him or her. Stick to it and with time they’re symptoms will be controlled. I’m my own ginny pig here. My doctors have prescribed a whole cocktail of fun medications, more often than not the side effects are worse than any curative effect I might experience. And now, I’ve got to prove to them that what they’ve prescribed isn’t working or that its making things worse.
2) As you’ve pointed out the world thinks of these seizures as “fake” seizures. Something that I have the power to control. If I just buck up all will be well (and the seizures will stop). This is not limited to the public at large, in fact, it includes several insurance companies I’ve had the displeasure of needing to deal with. I’ve been treated like a criminal when seeking help that I’m entitled to.
3) Limitations of what we can and cannot do helps here too. In addition to having no independent mobility any longer, I’ve been told that paragliding, back country skiing, and a number of high country pursuits I once took seriously are no longer on the table. There have been days since I was diagnosed that I’ve spent the entire day indoors — do you realize how unusual (and unhealthy) that is for a guy like me? Even if my doctors hadn’t limited my movement, my friends would have. I mean who wants to have some guy thrashing around on the trail?
4) There is nothing I want less than pity. Yet I’m stuck here in this position. I’ve become self deprecating and rancid and alone. No one can understand what I’m going through so I have nothing in common with these people and they believe that the correct and proper response is to pity me. Even my family.
5) No clear treatment plan. If you get cancer there is a clear and well defined treatment plan. Do these things 1, 2, 3 and you’re likely to get better. Get PNES and what? Jump through hoops until your savings is gone and no one will insure you any longer. A PNES patient’s only real treatment plan is to continue to hope which puts all our eggs well over the horizon of realization. Eventually, you stop hoping because its too expensive or because your hope has been dashed too many times. Then your quality of life becomes what you can get away with between episodes.
6) All the other things we complain about that no one ever addresses. Shaking in my limbs, fatigue, headaches, dizziness, black-outs, & memory loss to name a few. I’ve lost nearly 45 pounds since this all started. All this is supposed to magically go away as soon as we control the episodes. Or people minimize it which is patronizing to say the least. Or they just pretend that you haven’t told them that these things are possibly worse than the seizures.
7) The overwhelming lack of support. Believe me I’ve been looking. You are the first Dr I’ve found and this is the first site where anyone actually says anything about this condition on the whole internet. I’ve poured my heart out on my blog, or on Facebook and I think the sound of crickets caused my last episode.
8) The difference in pace. I’ve been forced by circumstances to live my life as if I were a monk. All the people around me are racing around, getting things done. We don’t mesh. I’m lonely, have nothing in common with most folks, am often dependent on them for a long list of my daily requirements, and daily feel like I’m slipping further and further into an existence which is simplified, shortened and without meaning. To attempt to reintegrate means bringing the pace of my life up to theirs, even without memory issues that means seizures aplenty. I just cant keep up any more.
9) Becoming an inconvenience. Ever walk into a coffee shop and see the barristas whisper to each other “oh no, he’s back”? I’m that guy even though I don’t smell funny or do drugs. The crazy dude on a bike who makes everyone feel uncomfortable.
10) Loss of dreams. Man I had some, they were good ones too. I suppose I could still hope for those as well, but that seems even more ridiculous that hoping for a cure. Right now my aspirations are numbered by the days I go without an episode — something I have no control over — and I wonder what my children think about me.
It seems we share so many similarities. Word for word I read, I feel like you have written my story the past 18 months or so. Have you found anything that works and improve your situation?
I’m wondering how PNES first presented itself. Was there a slow increase in frequency and severity? Did it first occur on just one side of the body and gradually affect the entire body? I’ve finally been diagnosed with PNES (not that I looked forward to it, but I did want to know what was happening to me). I’m trying to recall past incidents that may have actually been initial symptoms of PNES. I’m new, confused, frightened, and have so many questions that I’m hoping you, all or any, can answer. Thank you!
I’m 23 years old and was diagnosed with PNES a year and a half ago. Sometimes I believe that quality of life is low because no one really understands what’s going on with me. Instead of being cared for I often feel blamed for a condition I swear I can not control. I know that depression makes the quality of life poor. How can I not be depressed when I think that despite my age I can’t even take a shower unsupervised. Before the seizures started I was independent, social and on track to finishing college. Now I’ve dropped out of school and the only time I get to leave the house is when someone else drives me to my next doctors appointment and I can’t even remember the last time I saw my friends. I suppose the worst part of all of this is all of the social media. I hate that I can’t help going on to Facebook and seeing how everyone else’s life has continued to move forward while I feel stuck. The only thing I have to look forward to is the next wave of treatments or pills that are supposed to fix me but they never do. All that ever happen is they take more money than i have and it never fixes me and that’s all i want … To be like everyone else.
Hi I’m Stacey and I got diagnosed with PNES a few weeks ago. I’m 17 years ago. I get 4-6 seizures evryday. Sometimes after a seizure I can’t even speak. It has completely taken my quality of life. I had to be taken out of school for this term because my seizures are so bad. The highlight of my day is waiting for my sister to come home. I can’t go outside or walk very far. Currently I’m waiting to go to a clinic in Cape Town, South Africa. Reading everyones stories made me feel like I’m not so alone. Maybe together we can help an support each other because only we can understand what we’re going through.
I’m only 17. This disorder is busy ruining my life. Along with the seizures I suffer from anxiety. I can’t even get a visit from my friends without having a panic attack and then PNES. The worst is probably seeing my mother and sister go through trauma because of this disorder. Medical professionals, up till now, haven’t been able to help me and I must rely on doing my own research if I want further answers. Another bad thing is people not believing me or saying that I’m ‘faking it’.I just want help and to be able to go back to school to finish my last year. PNES is a pest and I’m completely hopeless. Help 🙁
Hi Stacy I also have pnes was diagnosed in April 2015…depression anxiety n panic attacks…..what clinic are u goin to
I started having seizures in 2003, I would have 7 to 10 a day and I also had them in my sleep… It ruined my High school years… I was home schooled for 3 of them… but I told myself I would graduate and I did. It got so bad the ER knew me very well, every test they ran came back normal. This was extremely difficult on my family, it felt like I had regressed back to a toddler. I’ve been on so many different medications it ridiculous. Finally after 3 or 4 years a Dr. told me I had pseudo seizures (fake seizures) then i had another Dr tell me it was all in my head and that I might be doing it for attention, (WHAT??) need less to say I didn’t return to that DR. So I’ll skip a couple a years in 2010 I got pregnant, everyone around me was so scared because of my seizures, happy to tell everyone all through my pregnancy I did not have 1 seizure.. the only thing I had was extreme morning sickness for 4 1/2months…they kept a close eye on me and I delivered my little boy in July of 2011, after that I relapsed in march of 2012 and relapsed again very recently, last week of April 2013 I was at the park with my little boy… so right now I am making Dr. appointments and doing the routine EEG’s.
I’ve come to accept this, that’s really the only thing you can do. Being a teenager then a adult having these are scary..but Having them as a parent to a child is more scarier to me.
I’m glad I’m finally finding people out there with the same disorder or condition I have.
Take one day at a time!
Matt Thyer has described this disorder to a “T”. I don’t have it but my sister does. It has gotten to the point where she has had to quit her job. She’s filed for disability, but that may take months.If she tries to get work she could possible do, the disability app will be canceled. She is a hugh burden on me and the family. Not because of the PNES but because she will not try to help herself.I know she is depressed and has been for most of her adulthood. She won’t seek any online forums like this to get her pain out. She sits and reads her vampire/werewolf novel and eats. I know for a fact that she can control some of them because she has successfully driven across country twice in one month by herself. I’ve asked her gently to try and stop when the shakes are mild and she managed to do this a few times. I’ve seen her have a grand mal over and over again on the floor just because several people were trying to help her and were standing over her worried about how to help her. I asked, “how am I going to get you into the car if you continue like this?” She took a few minutes and pulled herself together and bam, out to the car she walked.
I’m very angry,I’ve lost all respect and compassion for her. I am the only one in our family that she can turn to to live with. I can barly make my rent and feed myself and now I have the burden of another person. She has just moved in with me and didn’t even say thank you for me taking her in.
After reading your comments and complaints I have no hope for her or myself. There needs to be a foundation, research and some form of help for you out there somewhere. Could hypnosis be the answer? Have any of you tried it? I find it oddly ironic that if it’s a psychological disorder why the heck do psychologist not try to help? What’s with that? I’m angry at her and angry at myself for the way I’m handling our situation. Money is a HUGH factor and we have very little.
thanks for letting me rant.
Quality of life? Depends on which day you ask. Most of the time I see the blessings – aggressive family doc who got me in for a video EEG and diagnosis only 6 weeks after the first episode and hasn’t buried me in meds that don’t help, understanding boss, coworkers, students and parents who make it possible for me to continue teaching my gifted ed classes, supportive family and friends who help when I ask and trust me to try and do it on my own otherwise. Other days I feel overwhelmed because of the fatigue, muscle cramps and aches, loss of independence with only limited driving, anxiety that an episode scares people around me until they see that I truly am OK again very quickly, and guilt that my family and friends are having to make changes in their lives because of my illness.
I’ve seen the quality of life for people with epilepsy; there are doctors who understand it, there is a standard of care for it, there is medication for it, meaning although difficult at times, it can be controlled. They can live a “normal” life. My husband was diagnosed with PNES on his first trip to a “University Hospital” the delivery of the dx was awful! And there were no referrals to see anyone when we left the hospital. We made our own appointments and not ONE neurologist we’ve seen, not ONE psychologist we’ve seen, not ONE psychiatrist we’ve seen knows ONE thing about PNES!!!! If they know NOTHING about it, how can they diagnose it? How can they treat? 4 YEARS later and we are no better off, have no more information, have no medical or psychiatric help… Nothing! His life and subsequently, mine and our 3 children’s lives… Well we don’t “live” we “survive..” This has taken all our lives away. He used to go 7-8 weeks in between “episodes.” Now it’s every other day. And he doesn’t have a seizure and boom it’s over, it lasts for days… He can’t walk, talk, vision is double, he looks like he’s seizing sometimes every 5 minutes back to back. His symptoms are 2 pages long. Our children have watched this day after day after day for 4 years. We can’t plan to go anywhere, do anything, because we never know when “it’s” going to happen. Their grades suffer, they’re different-they have a “sick” dad, they cry, they get angry , they’re sad and if they know one thing, it’s DISAPPOINTMENT. He’s 47 now, the kids were 7 and 4 (twins) when this first happened. His list if meds are as long as his list of symptoms. We have no life. None of us. I feel so bad for him, I’ve cried myself to sleep many a night. And I don’t see it getting any better anytime soon…. One nuero doc told him he’d wind up in a nursing home…. He also told him that he, himself was the only one who could make himself better… I do not know what to think, believe or even pray for anymore. We are lost and alone… I think the word “life” above should be “exist…”
I am 36 years old. I began having these seizures 3 years ago in April 2011. I don’t even remember the first one or what it was lie…or how it affected me (i.e.; fear, uncertainty, etc.). I, too went to the Dr. immediately, wore and EEG monitor (a regular one not a video). Had a seizure thank goodness. Only time since this all started that I was happy to have one. The results showed no change in brain activity. That was when the diagnosis of PNES was made. I’ve been told by my Psychiatrist and Psychologists that they know very little to nothing about this diagnosis/illness. I do not shake. I simply have absence seizures. I go ‘bye-bye’ for a minute or so (whenthey started they were much longer). After the seizure itself, I come out and ask questions ‘where are we’ ‘am I supposed to be here’ …plain confusion for a couple minutes. In December they upped my dose of Lamictal from 300mg to 400mg daily. I went 4 months seizure free!! 4 MONTHS! I was ecstatic. The longest I had gone before that was probably three weeks. However, I had a seizure last weekend, and have had two more this weekend. I am so sad and discouraged. I mean, at some point I am going to top out at the level of drugs they can give me. I totaled our truck, I don’t remember anything (even memories from BEFORE these seizures began). So scary and frustrating. IF anyone has any luck with meds, please post in here. I (as the rest of you) am absolutely desperate. I want my life back. Good luck and blessings to you all.
I was diagnosed with PNES about a year ago. My first seizure happened when I was 17. I was actually at the doctor getting a shot, and as soon as the nurse took the needle out, I blacked out. She had called in other nurses and my mother and little sister and brother were both in the room when it happened. They described it as this: My body stiffened so much so, that I slid straight down my chair, like a plank. I was unresponsive to sight, sound, touch. Pretty much all my senses were not responding. This only lasted for not even a full minute. When I awoke, I came out slowly. As if waking up in the middle of a really deep, deep sleep. I was disoriented. I was exhausted. I was sore. I didn’t know what had happened or why my mom was crying. The nurses helped readjust me so that I was sitting up straight in my chair again. I was in a cold sweat, and cold all over. And the nausea. I had my head between my knees puking for about 5 minutes. It took me 10 minutes before I was myself enough to stand again. I had never had a seizure before. I had blacked out a few times as a small child (age 6 or 7), but nothing like this. I was so scared, I had thought it was something in the shot they had given me (which was Gardisil, for those who are curious). The nurse said it could have been due to a reaction the act of getting the shot in itself. A reaction of ‘psyching’ myself out for it since it was in front of my two little siblings, I was the tough one and went first. We wrote off the experience as a no-go for the remainder of my Gardisil shots. We were sure it had something to do with the medicine. I went months without another episode. I was 20 the next time it happened. I was home with my younger siblings and some friends. I remember getting up to check on my little sister, as I walked to her doorway, I could feel myself become extremely dizzy and right then and there I knew exactly what was happening to me. The feeling of having a seizure is so strong and unique, I knew it was happening all over again. I was able to sit in a chair right outside her doorway and my brother was there and I remember muttering ‘seizure’ and then I was out like a light. Just gone. Nothing. Once again, I woke up in the chair in a cold sweat with overwhelming nausea. I started puking almost immediately. Like before, my whole body ached and I felt like I had been running for my life. My brother said I didn’t plank up like last time, but that I had stiffened. I just hadn’t straightened out into the plank shape. My poor brother didn’t know what to do for me. He and my friends were shaking me, calling my name, and he apparently even tried slapping me awake. He didn’t know, and I didn’t care because I didn’t even remember. I was so sore after waking up, that I didn’t even feel where he had slapped me. This made 2 seizures. After never having experienced them. My mom was at work that night, and I called her after to tell her. She wanted me to go to the Dr. but I didn’t want her to have to leave work, so I told her I just wanted to lie down and go to sleep. And I did. My next seizure was a couple months later. My best friend’s mother had just passed away from cancer, and the night I attended her funeral, I went to my Godmom’s house and stayed the night. That night I had another one. This time I was standing up talking to her in her kitchen. Suddenly I felt the dizziness again, and I told her, ‘I’m about to have a seizure.’ I saw her begin to walk towards me and I blacked out. This time, my seizure was more vivid. I think I spent more time under because I thought I was asleep and dreaming. I had gone through an entire dream when I heard my Godmom’s voice from somewhere VERY far away. And there it was, for the longest time. Just saying my name and soothing me. It was my lifeline. Something I could focus my attention on. After what seemed like a few minutes, I was able to follow her voice until it became louder and clearer until I woke up. I was looking up at her from the floor. I had apparently fallen, hit the counter, and landed on the floor. She said my body tensed up, but didn’t plank out. She said it looked like I was shivering. To me, it felt like I had been out for an hour. She said I was only out for maybe a minute at most. I was tired, achy, nauseous, and everything else that the seizures had made me. I went to bed almost immediately. I wan’t one to go to the doctor, which is why I hadn’t gone, up to this point. But finally, I thought, well, thirds time the charm. So, I went to the ER, I went to the Neurologist, they did their scans and everything came back normal. My follow up with my neurologist is when he diagnosed me. During the visit, he had asked me if I had ever experienced any traumatic events in my life, and of course, I started crying and telling him about my childhood. I had been through so much, and being the oldest child, I had always had to be the strong one and never let my sadness or grief show. He diagnosed me with PNES, and almost 2 years later, I haven’t had a seizure. The diagnosis just made sense to me. It felt like something that I knew was happening to me, but I didn’t know why. I haven’t been taking any medications. I have been to a counselor once or twice, when I knew my life was getting to a place where I needed to open up to someone. When I would get stressed and start to feel dizzy, I immediately took deep breaths and told myself that I am in control. So there you have it. 3 seizures and 5 years later, I feel like I’m in control. Who knows, I may have another one. But for me, my diagnosis did a lot. My diagnosis was my cure. I took what I knew and did the best with it as I could. And I know that I am EXTREMELY lucky, because I’ve only had a few. For those that go through multiple daily, God Bless you. You are a fighter. No matter how weak, how tired, how depressed the seizures make you feel, live in between. Love your children. Be the best of whatever you can be. Love your life. Because I can guarantee that your loved ones would rather have you the way you are than not to have you at all. Be that person that they love unconditionally.
Hi all, I was diagnosed last year with PNES secondary to my PTSD. I am a combat vet so it was pretty easy for them to diagnose but only the VA was has been treating me as Kaiser has limited experience with this condition in relation to my experiences. However, my biggest fear is dying during an episode. I have extreme prolonged episodes in my sleep where I stop breathing and convulse uncontrollably and even turn blue. The symptoms were controlled with the Sertraline but I stopped taking it to see if I felt better. Needless to say the came back immediately… ANYONE KNOW IF THESE EPISODES ARE FATAL?…with the exception of occurring while driving of course.
Unless you injure yourself during an episode (e.g. fall and hit your head) PNES episodes should not be fatal. However, ask your treating physicians/ psychologists about this too because they know the details of your episodes best and can work with you figuring out ways to keep you safe when alone.
This response is a few years later, I’ve had PTSD for 32 yrs, started these seizures a year ago. I know they happen at night too, as my dog leaves marks where she’s tried waking me, and when I come to I find her keeping me on the bed. No amount of medications have “cured” me, but I’m alive.
This is May of 2020; after all types of therapy my episodes are worsening, I am trying to locate someone trained in EMDR to hopefully take away the traumas control.
My story is very similar to Rebecca’s story. Today after reading everyones situation. I realized the my blackouts have a name PNES. My childhood was tough and I am the oldest. Im 53 years of age and have had six episodes. Only because after doctors told me I was okay normal and healthy, the doctor asked was I happy and I explained my status at that moment and she replied that i needed to relax and breathe. I went home and every time I felt weak and tingling all over I knew what was coming, so I put my hand under running water to feel something and took big inhales and slowly exhaled would not stop until I felt better. I know everyone is different but this works for me. Please find away to stop your seizures.
Interestingly enough, my quality of life improved after PNES was finally diagnosed.
Seizure after seizure, Emergency room visits where I was treated as a drug seeking crazy woman crying out for help.
Hospital stay with so much medication to stop the seizures in my system that I remember nothing for more than a week, both during and following my hospitalization.
Having a deep discussion with my PCP to create awareness and let him know what he wrote in my chart, hurt me on every level of care. I made him promise to be aware that what he writes on his patients’ charts is not god-speak.
Out of work for five months. My job was given to someone else. I was riddled with shame and guilt as I began thinking of myself as that crazy woman, crying out for help.
Seizure after seizure, seemingly clustered kept happening. I had two seizures in my therapist’s office. One happened in the waiting room and the other in his office. It was then, that he, my Psychiatrist, and I went on the epic journey to find out what was happening.
While I am not happy to have PNES and seizures at all, once I was diagnosed, I reached a level of acceptance.
My medication has been changed, and my seizures occur less frequently. More than that, now I am able to acknowledge the seizure, not be frightened by it, and while exhausted and having some memory issues immediately following, I am able to say, Okay, it’s done, and move forward.
My quality of life isn’t perfect, but so much better! Grateful to finally give it a name!!!
My cousin was admitted into hospital 4 days ago and has suffered over 200 seizures in that time. She should be allowed home in a few days, its reassuring to see that other people have had similar experiences. Its just something that she will have to learn to accept and hopefully through that, the attacks will fade
Maybe it’s because people with pnes get treated differently with less understanding than those with epilepsy
6 months ago I started having “seizures”. I had a couple trips to the ER only to find out that all my tests came back normal. After seeing specialists after specialists, I was finally admitted to the hospital for EEG video monitoring. I was having 1-2 seizures daily, being very lucky if I got by a day without. During my 3 day stay I had 2 seizures. The last day of my stay the Dr came in to tell me that I did not have epilepsy and that my brain waves were normal. He dz me with PNES. He didn’t explain this very well, but did tell me that I needed to see a psychologist/psychiatrist for further treatment. He handed me paperwork and out the doors I went wondering , what the hell do I do now??? I’ve been going to my therapist for almost 2 months now, which I think has started to help, somewhat. I’m not having seizures every day, but still 2-3 a week. Just when I go a few days w/o having one, BOOM, it hits again. She’s treating me with EMDR therapy, essential oil therapy, and Raiki. I feel like when I talk to ppl about this (when they ask) that they think, oh you’re just faking this! For those of you that are diagnosed w PNES, you know the truth! and for those that dont, I wouldn’t wish this on my worst enemy! I hate that this changed every aspect of my life!!! My work, my weight, my social life, my children, my whole family! You’re right when you say it changes the quality of life! It sucks! I’m trying to breathe, relax, stay and remain calm….but even at those times, the seizures still manage to show their ugly head! Please help us suffering with this condition find answers to help ease this pain!
I have had seizures for most of my life. When I was a child (1yr). I fell and hit my head and dealt with seizures until I was about I was about 8 or 9. Then my seizures came back when I was a car accident at 16 yrs. They never truly subsided but I was doing well as long as I took my medication. Maybe a slip up once or twice a year. Then in 2010 I had a seizure when I was choked out by an ex-boyfriend. From then on my seizures have been very real.
Every doctor has stated I was an epileptic now I have one neurologist telling me no you are a non epileptic from a test that I took over a year ago and never got the results as far as saying, “No these are not traditional seizures,” until today! What the hell!
I was the kid that had to wear the f%%%ing helmet to school as a kid because that was the only way the school would allow me. Now you’re saying this crap was all in y head from some type of possible trauma that I’m suppressing.
I’m ticked off! Now I know why I was treated like crap by my other care team.
It’s difficult to read people say that real epilepsy is easier to manage. I am just now encountering a diagnosis of PNES (won’t go into details) my PNES seizures don’t mimic my real seizures though. At first they did and now are very different – not yet quite fully understood.
My tonic-clonic /grand mal seizure was at 16 yrs old. I’ve had several grand mal/T-Cs and have consistent abnormal EEGs. My diagnoses was JME. I am now 46. My life with epilepsy has not been easy. It has not been ‘take this meds and you’re on your way’. JME is a VERY difficult epilepsy to control. I’ve seen countless neurologists.
Have been in and out of hospitals to get bandaged and stitched up after falling off sidewalks and out of showers.
Have taken rounds and rounds of various medications. Depakote, Topamax, Klonopins, Lamictal, Keppra, Tegretol, Diazpiam, Dilantin (and all brand because I couldn’t tolerate generic).
The side effects are horrible,awful, devastating to everyday life. You take one pill to stop seizure and it causes a side effect and you take another pill to subside that side effect. The Topamax drains calcium from your bones so you take large calcium supplements everyday. The medication is and worse than seizures.
My mother was embarrassed and told me to stop taking my medication after I stabilized after my first seizure.
Imagine college…no drinking cause of meds… that was fun.
Work was always great, until last year when I started having seizures and was told my AEEG was abnormal. Did a VEEG and was told it was PNES.
I have epilsodes on a near daily basis…I just ‘fade’ now, not like the jerks and vocalizations initially had last year.
I start to feel sick, lay down, can’t talk, can hear, and then fall asleep for about 2 hrs. This can sometimes happen twice in a day. And on top of my neurologist not taking any of my episodes seriously and my psychiatrist not knowing what to do… I have to take 3 medications, 15 pills to keep the “real” epilepsy at bay. So, to all those who think epilepsy is easier than PNES, I do not believe it is.
I’m really grateful that I found this blog, even if it is a little outdated. I am 20 weeks pregnant, and these episodes started at 17 weeks. I had had petite meal seizures as a child, but my parents were told I would grow out of them. I did, because I never had seizures until my second trimester, first pregnancy, and I am almost 30 now.
Luckily my neorologust, psychiatrist, and OB are aware of this condition and reassured me that I am NOT faking these. This is my body’s response to high levels of stress, and while it IS stemming from physchogenic reasons, I was told by my team that what I am going through is very real! Do they know how to cure it? No. No one does. But at least they are finally aware of them! They can see that we are NOT crazy!
This of course does not make life any easier. I was born 3 months premature and am legally blind because of it. My only mode of transportation has always been the local transit system or asking people for rides. Now I feel like I can’t even use the independence I once had. Daily activities are a chore. Where before I was able to work, come home and make dinner, and be social with my husband and friends, now it is a major accomplishment if I put the dishes away.
Being pregnant on top of this doesn’t help either. I am even more exhausted than I was at the beginning and doing too many things at once puts me out for the whole next day or I have between 8 and 20 episodes. I know it isn’t dangerous for me or my unborn baby, but my life has changed SO much and I am worried it won’t go back to being normal once the baby is born. ;-;
Thank you to all who have shared your stories. I am so glad I found people I can relate to! Learning to lower the expectations of myself has been a challenge, but I know with support from my dear husband and my God I can get through this!
To all those who share my plight, I deeply empathize. Today has been a particulaly rough day as it pertains to PNES. I lead a reclusive life, because I fear seizures and falls in public. Now I can’t even go to my doctor without having seizures. Today, I had a very strong one at the office, and they called the ambulance. The ER, as usual, had no idea what PNES is. It’s surprising for an ailment so common that all several ERs I have visited, did not understand the situation. This must change! The impact on my life has been immeasureable. I’ve lost all my friends. I have no love life, and a wife and children were always my perogative, but I feel that’s over. A house, job, or even a simple car to drive, myself, are all uncertain. Everything is seemingly destroyed. Therapy did not work for me; in fact, it made me worse, but I’m starting again only for treatment of bipolar disorder. The comorbidity of bipolar disorder and PNES causes problems in treatment. Because of the overlap in symptoms,my doctor chooses to ignore PNES. I don’t know what the future holds, but at this point, I’ve exhausted my resources. I hope you all find peace and silence in your bodies and souls.
My grandson has been suffering with PNES for 3 years. He is a senior in high school. He is friendless, his dreams of college are hazy, his only connection with a friend is his video games. He has decided to quit track. He has said he’s done. We have tried to get help but nothing. I read all this conversation on this blog, and they go back 10 years. Where the hell are the studies, research. How do we keep the ambulance out of the equation which can put families in the poor house only to get to hospital and be told there’s nothing they can do. My grandson wears a bracelet that specifically says PNES no ambulance needed. They actually told us, they don’t read those. Feeling safe??