Yes, but…
There are a myriad of factors that can affect the prognosis (whether the outcome will be good or bad).
What are some of the factors we know support a good prognosis?
1) The sooner the right diagnosis is made. That avoids the condition becoming chronic and the suffering. But on average patients spend 5-7 years before they obtain the correct diagnosis of PNES.
2) That the diagnosis is reliable. In order for this, Video-EEG monitoring is proposed as the gold standard.
3) The way in which the diagnosis is communicated to the patient by her/his neurologist, psychologist, or psychiatrist when the diagnosis is made. If the explanation is clear and respectful, the patient is able to understand it as well as the treatment recommendations.
4) Ideally, the patient doesn’t leave the hospital without a psychological referral in hand but the key word here is “ideally.” Unfortunately, there are few epilepsy centers that report having mental health professionals to whom they can refer PNES patients.
What about treatment? There is no one treatment designed specifically for PNES. Why? I think that this is because non-epileptic events are only the tip of the iceberg. To treat PNES, we have to target what is fueling them: the way in which stress, anger, frustration, fear, sadness, trauma, and more are affecting you. Since each person is different and life is also constantly happening treatment will need to adapt to each individual. Ergo, there is no one form of treatment that works.
There are many types of treatments: interpersonal, psychodynamic, cognitive behavioral, mindfulness techniques, trauma-specific-treatments, etc. There are also a number of psychiatric medications that can help. All of these interventions have shown that they can be useful. Elimination of seizures or significant reduction in numbers has been reported in about a 1/4 to over 1/2 of cases using any one or a combination of these techniques.
Today’s take home message: Treatments are available. Points 1-4 mentioned above are where we need to be focusing our efforts as professionals and as the PNES community. This will pave the way to get patients with PNES to that treatment.
This article is good. My husband suffered from PNES and one hospital saw he was having sz but nothing abnormal with EEG and they Know about PNES but never dx. They just giving hom med upon med. we took him to another hospital and within two days of his stay they dx and he started therapy and since then his sz have dramatically decreased
Thanks for sharing that, Jerri and for the kind words. It is good to hear that you and your husband had that experience of getting the correct diagnosis and being able to move in the right treatment direction. It is really essential.
I am a clinical psychologist, 70 years old, have a 90 year old mother who has had psychogenic disorders and caused us to suffer for my entire life. She has been diagnosed with pseudo-epileptic seizures by highly respected practitioners and institutions, including the University of Michigan Medical Center. She has refused to accept the diagnosis and over the years has also added pseudo-TIA’s. She has adamantly and angrily argued that “it is not emotional” despite all evidence and many respectful presentations. She has also managed to get doctors to do many, many tests, including a sleep specialist/neurologist who diagnosed narcolepsy and prescribed Depakote. Psychotropic and other medications have been prescribed.
I am certainly no looking for any suggestions, but I hope this account will help others in this more enlightened time to get the right help very soon in the course of this condition. I would highly recommend two things for the families:1) family therapy,2)a wonderful book, The Body Speaks.
Lynda Paull,Ph.D.
NYSPA member
Could you please tell me who the Arthur is ? Thank you !
My husband and hence our family is struggling greatly with PNES. He was diagnosed after 30 days in hospital between Jan 1 and Feb 26, 2013. He has been unable to work or drive since. I would be very interested in the book The Body Speaks. Could you tell me who the author is? After 8 months we have discovered that we, that is our family, know more about his condition than most health care professionals we encounter including and especially emergency medical personnel. Can anyone recommend medical personnel who would be willing to communicate online for direction and assistance in facilitating my husband’s recovery.
What book are you talking about.my daughter who was fifteen has it.now sixteen hasn’t been able Too go to school or drive.schools donot even want her because they are afraid she may get hurt.
which author is this book by?
The Body Speaks: Theraputic Dialogues For Mind-body Problems / Edition 1
by James Griffith, Melissa Griffith, Melissa Elliott Griffith
Thank you
Lynda, I was diagnosed with PNDE a few months back, at first I could not belive what the doctor said, he was kind or rude and cold. After seeing a few more doctors, I finally accepted what was happening to me, it has been very difficult because after beeing a very active person,suddenly the attaks appearedñ at first very lightly just a grin, after a while it appeard to be a epilepsy seizure. I just read what you had passed through and I felt what you wrote, now I can understand why sometimes I get angry and my negativenes of this diffult problem has become for me. I was higly active, did biking, now even my memory has declined and my way to comunicate. Thank You
Hi my daughter is 16 years old and has PNES
At least we think so She has had normal EEg . She gets intense dejavu seizures and I know some people might not like that word but that is exactly what they are It is just that they stem from a physical or emotional trigger not from an abnormality in the brain which is epilepsy. She has had anxiety and depression and is on medication(low dose antidepressant)but this doesn’t seem to be helping .Her doctor is doing everything he can to help.It seems that the more stressed she is the higher the frequency of the PNES Can anyone tell me if this is going to improve and what methods have you found which has helped to lessen these episodes. As a mother I am at my wits end to help my daughter. She wasn’t at school last year and they did lessen and she had months free of seizures which seems to be because of less stress. Can anyone help Thanks
My daughter is also 16, I would love to talk to you, I’m so scared for my daugher.
I was 16 when I started having them.. I’m 18 now.hasnt got easier. Please message soon if you have the time.
My granddaughter is 31 her seizures started when he was 17 yrs old, all this time she was on meds for epilepsy seizures, just this summer they claim they are not seizure and took her off all meds. Well it is not working she keeps have them and now she is going to a Psychiatrist, twice a month still no help. They won’t give her any meds they say she has to work threw her problems of the mind. He any one has a answer I sure would like to hear from you..THANK YOU
Read the information on this website:
http://nonepilepticseizures.com/epilepsy-psychogenic-NES-faqs.php
And look to see if you can find a professional who works with PNES on this page: http://nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php
You may also want to purchase this book: https://www.amazon.com/Psychogenic-Non-epileptic-Seizures-Lorna-Myers/dp/1492881414/ref=sr_1_2?s=books&ie=UTF8&qid=1390824900&sr=1-2
Best wishes!
My husband was diagnosed with a video-monitored EEG. If it is at all possible I would insist on this test. It gave us the assurance that there was no disease process or disorder of the brain causing the seizures. What we have found that is helping somewhat is to control the level of stress and counseling to help learn to relearn how to deal with stress in a more healthy way. However some days I have to simply look back over the last 9 months and see how far we’ve come in order to see there is any improvement. We are scheduled to start family therapy which will include individual therapy to see if that won’t help in my husband’s recovery. My children and I are willing to do whatever it takes to help him get well. Who knows this approach may help your daughter as well.
Does your husband also suffer from severe depression? If so, you may want to look into ECTs. Some with PNES and depression come to road blocks in their treatment and recovery becomes stagnate. This is because, until the depression is addressed, nothing else can move forward or improve. For those who don’t respond well to medications for depression, ECTs are often very helpful.
PNESs are usually the result of trauma. Many patients have a history of physical or sexual abuse. The seizures are an emotional coping mechanism. When the brain becomes overwhelmed by a stress or some sort of emotional trigger, it then goes into a seizure to cope. PNESs are often couple with other disorders such as depression, dissociative identity disorder, anxiety, etc. It is important to work with a neurologist as well as a psychiatrist, but be careful who you choose because not all of them are trained or willing to diagnose and treat PNES because it is so complicated and treatment is so specialized. My mother has PNES and dissociative identity disorder, which I’ve watched her struggle with since I was a very little girl. Both were a result of severe sexual and physical abuse as a child. I know from experience that the road to recovery can be very long and difficult, but there is much hope! My mother has come a very very long way in her recovery and a happy incredible woman of strength and wisdom.
My daughter has been out of school for a year it happen February 4 and not having trouble with school.she want to go back the schools are scared.They even put her in a 504 program, need answer please help me
I would suggest you bring your daughter’s treatment team (psychologist, psychiatrist, neurologist) into this. They can explain to the school what PNES is, how to respond to her particular events safely, what restrictions are necessary and which are absolutely not necessary. I wish you and your daughter the best
My daughter had her first seizure this year FEBRUARY 4th! She was immediately diagnosed with PNES. Her symptoms are more what they are calling rolling ones though. She will go from seizures to passing out to vomiting to hearing voices to going back in time to the same day over and over. It has been a crazy ride and we have very little hope so far. She is a great student, lots of friends and would appear on the surface and very put together 14 year old girl on the days that her episodes don’t control her. We have a team working with her from pyschologist,counselor,and family doctor but none can give her hope that she might get herself back anytime soon.
My son is fifteen and began having PNES late in his 10th year. This has been a long process to get him to the place where he can go weeks or even months without an episode. Early on he had a hundred plus a day. Emotional maturity has helped. He is much more in control of his emotions (frustration, depression, anger) now than he was at 10. We treat him normally and almost ignore the episodes. The school has become better at handling them. He swims, rides his bike, etc. and will get his temps soon. We find that the more we down play the episodes, the fewer he has. His current therapist counseled us that “less is more” when it comes to helping him. That over reacting, babying him, giving him too much support with school, actually was making him worse and more dependent. For the past six months, we have followed his advice and life has been much smoother. We are hopeful for continued progress. Hope this helps. Everyone is different.
Try neuro optimal neurofeedback. It’s worked quite well with my 15 year old
This is very familiar to my story with my daughter. Neurosymptoms.org helped me. My daughter takes anti depressants and eppilem as a mood stabilizer. She still gets them but not as much. My daughter recognises her possible triggers now and can hold them off by remaining Mindful. Practicing mindfulness remaining in the moment is critical. Good luck.
Hi my daughter just started two weeks ago having seizures. She has an eating disorder for twenty years. She is 39 years old. This week she was diagnosed with stress related seizures. She is going inpatient to a hospital but while we are waiting she has three episodes a day and it stopping her life. She is constantly wiped out from these episodes and sleeps imbetween the episodes . What is being mindful of when they occur mean? What can she do to hold them off?
I was diagnosed with pnes a few months ago. I’m 19 now and have had problems since I was 15. Doctors weren’t much help and going to so many and getting no anwsers just made it worse. More stress the more I felt my body tighten. Listening to calming music seemed to help though. Over the years though it has gotten worse best to talk to a good neurologist and theropist about options.
My daughter was 21 when she started having PNES.I took her to every hospital and she was misdiagnosed numerous times.She was also admitted to the psych ward.I finally took her to the Mayo Clinic in Rochester.There she was diagnosed with PNES.She was put on Clonapin and Lexapro.The seizures are ALOT less intense.It has been the hardest thing in my life to deal with.To see your child falling on the floor and flopping around like a fish.It is devastating.It has been 3 years now and I just wait for the other shoe to drop.It is so scary just being on guard.Noone seems to understand because it is not a visable illness.She is in college now and has to be driven each day because the drugs make her response time too slow.She cannot work because her anxiety level is too high.Just going to school each day is a challenge.But everyday is a blessing to have her with me.i love my kid and wish there was more information about this topic.
do you know the dosage of clonapin and lexapro she is on?
Yes, it is hard to watch your children try to lead a normal life when you are always waiting and wondering when the next seizure will be.
Thanks for sharing your information.
Pam
My daughter suffered a concussion followed up by complete amnesia (10 days later) and an onset of PNES nearly a month later. After 8 months and 23 doctors we still cannot find a solution. Were you able to find one?
My daughter suffered a concussion followed up by complete amnesia (10 days later) and an onset of PNES nearly a month later. After 8 months and 23 doctors we still cannot find a solution. Were you able to find one?
Where and what kind of therapy? Please!
What kind of therapy
A mentally challenged person is suffering through nonepileptic seizure. He is unable to speak or to understand. Doctors can’t control it. he dying daily. Any suggestions?? Any help? ?
What does the dx in your comment mean?
We are new to PNES and I need to learn as much as I can.
Thanks
pam
“Diagnosis” refers to the diagnosis of PNES. Prognosis improves if the diagnosis of PNES is made rapidly and is communicated to the patient and family in a clear manner. Also, starting proper treatment (psychotherapy and sometimes medication) is essential for better prognosis.
Where r u located
May I know what therapy your husband did?
I work with adults and adolescents with epilepsy and non-epileptic seizures. Lorna, your post is very sensible and important, particularly the way in which the PNES is communicated to the patient. I find that often the patient is looked down upon because they don’t have a “real” disorder and this sabotages treatment before it even starts.
I wonder if you can help? Since the age of 17yrs, I have suffered with numerous feelings and emotions that have changed over time. I was diagnosed of suffering from panic attacks and depression/anxiety. I recently informed my new surgery of what happens and I am now under the hospital. I have had 2 EEG’s which show ‘blips’ whereas I have also undergone an MRI scan, this was clear and showed no indication of epilepsy. The Dr is still insisting he cannot diagnose that I have or do not have epilepsy. Having read up on PNES, I am finding the symptoms etc are very much the same and I have had traumatic effects during my life, as a young child and as a 17yr old. Please could someone help??
What help do you need? If you are looking for more information, you might look at a few different websites: http://www.nonepilepticseizures.com/index.php. Also: http://www.nonepilepticattacks.info/index.html (created by Dr. Markus Reuber (a fantastic researcher and clinician who is in England) and of course: http://www.neadtrust.co.uk/
Hi Shahal, thank you for that comment. It is always fantastic to hear like-minded experiences. I see you on the NYSPA listserv sometimes. Where is your practice (you can email me)and what insurances do you take. I would like to add you to my PNES website’s referral list.
Looking for help…. My son has been having non-epileptic seizures on and off for about 2 years now. The events will usually last about 2-3 days having as many as 8 seizures a day at it’s peak and decreasing. Each seizure lasting the most 60 seconds. There will also be very large amounts of time between each event anywhere from 2-9 months. We think they are finally gone but they rear their ugly head again. Has been to 3 hospitals and all tests are negative. He has has EEG, CAT scan, MRI, Spinal tap. The most recent episode was a little different. He had one seizure with alot of head pain on a Saturday then another one on a Sunday and that was it. The difference with the last 2 is that he had head pain where in the past he didn’t so that’s why hospital ran extra tests. He has been seeing a psychologist for a while, but I was wondering if anyone can share advice with their experiences. Thank you.
I have had PNES for about four years. It was triggered when I began remembering traumatic events from my childhood that I had forgotten about my whole life.
Getting treatment in the current medical community seems very difficult. Despite having been a successful professional woman formerly, I was looked down upon by all of the medical professionals who attempted to treat me at the time, and most of them treated me dismissively, which exacerbated my stress and confusion going through a very traumatic medical situation.
Diagnosis, and the delivery of that diagnosis is critical. However, once I had the diagnosis, I felt largely abandoned by the medical community.
Finding a psychiatrist and therapist who are comfortable treating PNES was very challenging for me.
I just wanted to share some of the treatments that for me made the most difference:
1. EFT – Emotional Freedom Technique
This was by far the most successful in helping me with my PTSD and seizures. My coach was phenomenal and because of his great work with me, I am still alive today.
2. The PTSD Mind Body Workbook – a Therapist had me go through this wonderful book and I did it during the same time period where I worked with my EFT coach. It only takes about 15 minutes a day and it dramatically improved my ability to function.
Currently I still have seizures occasionally. However they have gone from several full-blown grand mal seizures a day to much less frequent partials with an occasional grand mal.
I wish everyone the best of luck in treating this condition!
While I was on contract in Iraq I was told I had seizure. I was given all the tests and of course nothing neurological was found. I was told I had PTSD and I resigned my job. Since then I have had 2 more rounds of tests each with same results. I have been denied Disability and MEDICAID. I have had several seizures resulting in head injuries and a car wreck. I do not drive anymore nor have I worked in 2 years. I may be forced to take early retirement with not enough money to support myself. My reason for not working is the dis associative amnesia I have after an episode. The Drs. don’t seem to know much about this condition. I have no medical coverage. What do you suggest?
Overthrow the corporate government, replace it wih actual competent law makers and people who aren’t corrupt, and instill universal healthcare and invest in more medical research.
I have been living under extreme stress for a little over 2 years due to job and family strife coupled with forclosure and the loss of my financial solvency. I also stopped drinking alcohol and using drugs about the same time. In the last 6 months, I have had 3 seperate attacks, the last 2 being multiple seizures. Each attack was preceded by an emotional upset. I am 46 with no history of seizures until 6 months ago. I just qualified for Major Medical through my employer. Does anbody have any advice as to where to start looking for treatment? I live in Southern Michigan.
LORNA MYERS- could you please send me info on your referral site? My email is Jocelynalexandria@hotmail.com. Thank you very much!!!
My 13 year old son has been having PNES for two years. They began after a mild concussion. All tests were negative including a 36 hour V-EEG in the hospital which helped in his diagnosis. Stress from school is the major trigger. He never has them over the summer. He sees a psychiatrist for an anti-anxiety medication, but it doesn’t always help. Can you refer him to a psychologist who is trained in PNES? We live is SW Broward County, Florida. Thank you!
I’m very interested in knowing what the Dr.’s told you in regards to the concussion and the onset of PNES in your son. My daughter had a concussion after falling off a swing at school her seizure came on suddenly after that and was followed by twittching which the Dr. said was just PTSD and should go away. 6 months latter she had another seizure and now has on going headaches and twitching daily so now the neurologist says it is PNES and has nothing to do with the concussion .
My son’s PNES started after he suffered 2 mild concussions in a 2 week span. They stopped quickly but showed up again months later when several stressors happened togetber. The concussions wefe the starting point, no doubt, but it doesn’t seem that knowing that i.pacts the course of treatment.
My daughter has PNES. She is 16 years old. She was fainiting daily. She stopped going to school. She now studies at home.
She wanted a dog badly. We got a dog. Then the fainting become only 1 to 2 times a week. The dog has been great! She is looking after the dog. Therefore she must be more focused on the dog. She can not faint. This has been GREAT! I hope this may help people. I hope helps someone….
Hey I’m 17 years old and I live in South Africa. In the past few months I’v seen 4 neurologists, 4 psychologists, 4 general practitioners, 2 psychiatrists and 2 physicians. I received treatment during the holiday at a clinic. I was put on an anti-depressant. Since I started with school again the attacks started. Luckily it doesn’t really happen at school but in the afternoons and late evening I still get the attacks. I’m at my wit’s end. My mother and sister have gone through tremendous stress since I got diagnosed. I just want 2 find some kind of relief. I’m in my last year of school. Can anyone mayb give some advice as to how 2 decrease the attacks? Thank you
I’m of sorry you’re having to go through all of this! When I saw you mention you are from South Africa; I needed to suggest you look into a medical condition. It’s called Porphyria. Porphyria is a genetic blood disorder. It is passed on to a child from one or even both parents. Porphyria can cause seizure like activity as well as many other symptoms. There are several different types of the disorder; with two main subsets. Not every patient has the all of the same symptoms. Some only have a few symptoms, some people have many of the classic signs (like me) and then you have people like my son who is so A-typical!
The important thing to know, is testing for it will only come back positive when done during an episode. My son has had positive and negative test results and so have I! It’s really important to find a Dr. who is familiar with Porphyria and makes sure the testing is done correctly! I would hope since you live in SA, you should have an easier time finding a knowledgeable Dr. then we have had!
I’m not saying you have this blood disorder. But all metabolic and organic disorders should be ruled out bf telling a patient they aren’t having “real seizures” Which, BTW they are! Sudo seizures (and Dr.s are not supposed to use this term anymore!) are seizures; Dr.s just don’t know the cause.
If you feel like it, look up Porphyria and the many symptoms they can cause. See if any of the symptoms fit your medical current condition. If so,find a doctor to test you for it. It’s a simple test that could help eliminate a cause or possibly answer questions about your current medical condition.
FYI, seizures caused by Porphyria do not show up on an EEG. They are not from an electrical imbalance in the brain. It is caused from neurotoxins; due to porphrins being in the blood stream where they don’t belong. The same information applies to certain metabolic & organic conditions. The seizures may never be picked up on an EEG. Regardless, of what is causing these types of seizures; it is beyond a patients control and is not done on purpose!
My son has no history of a traumatic life event, he has never been abused, both of his parents are still alive and married! However, he did go undiagnosed with Lyme Disease & several co-infections ticks carry; for many years as a child which caused severe illness. He can’t metabolize medicine properly, which causes a huge problem and He is positive for the blood disorder Porphyria.
This past year has been the best he’s ever had. Going back to school almost full time at this time . He has friends, including a girlfriend and he just made the A/B Honor Roll. So, I asked the neurologist at the hospital two weeks ago after a 4 day neg VEEG. While he was being discharged with the diagnosis of “Sudo seizures” and psychiatric referral! “I don’t understand why he would subconsciously choose NOW!… To start having these horrible, new seizures when everything in life is great? Seizures which can go on for hour’s and cycle one after the other? Why are they getting worse as each day passes! How can you give a diagnosis when you don’t have the medibolic test results back yet? Why did you only test him for Porphyria? (which was done incorrect!) And why did you lie to my son and tell him not all seizures are seen on EEG’s. That you believed him and don’t think he’s “crazy!” Only to discharge him with a behavioral medical condition!?” Thank you very freaken much! BC NOW, he does need to see a therapist again! (he saw one for many years while being treated for the Lyme D.) However, the reason is because you just told him “It’s all in your head” so now he thinks he must be making it happen and he is “Crazy!”
I apologize to everyone for ranting. I just need to find out what’s wrong with my son. Since being discharged 2 weeks ago he has missed alot of school. Today was one of at least 3 days, I got an urgent call from school notifying me he was having another seizure!
Blessings to all! I wish you luck and the answers we all need…
Hi Stacey.
I live in South Africa too and I was diagnosed with PNES in November last year. (2013).
I was wrongly diagnosed with Juvenile Epilepsy 9-years before.
After voluntarily admission to a private institute in Bloemfontein where I received therapy from both a psychologist and psychiatrist, they came to the conclusion after seeing a neurologist first.
In my case it is connected to anxiety (with no notable origin found).
You can only have a decrease in these episodes if you come to the root of the problem.
I am no doctor at all, but I have one theory I apply to everything in my life. Never put a plaster on if you did not remove the thorn first. Otherwise it might help, but won’t heal.
My advice is to try and identify your trigger(s). You are very lucky if you can direct it to a specific traumatic or stressful event or whatever the case may be, but knowing what causes this to happen also helps a lot.
Then, I am considering (with the support of a doctor) in rather tackling the root (in my case anxiety) than the episodes itself. The logic behind it remains to treat the thorn (which is the root of the problem) than treating the problem itself. It makes sense that by treating the root, the root will treat the PNES itself rather than trying to treat only PNES who cannot really help itself.
I hope this makes sense to you. You can e-mail me if you would like to have support (it always helps to be not alone) andre@sasi.org.za
Regards
I have someone who lives in South Africa who needs serious support. Do you still reside in South Africa
Where in SA u from…I’m from cape town ..mail me nawahl2@gmail.com
I was on anti depressants, tried a few and was put on newer SRI type. I went into docs complaining that tablets were making me sleepy, I found pretty much all tablets calmed me down but also dumbed me down and slowed down my reactions. I wanted to come off them but nurse I saw said tiredness was due to depression and upped dose. Upping the dose brought out seizures and falling unconscious mid sentence etc. Went back to docs, they decided to take me back down to my original low dose and said it could take up to 8 weeks to take effect. Seizures calmed down a little but didnt go away so ended up seeing a specialist and was diagnosed with non epileptic seizures. Saw two specialists. First organised EEG, ECG and MRi and was advised by him it was non epileptic seizures. Second has told me it was unlikely that tablets caused the seizures as it is rare (even though my mother is very sensitive to medicines) so am now waiting CBT or similar treatment starting in November this year. Have had the seizures since Autumn 2011 and they have a huge impact on my life. I am a single mum and cant teach my daughters to cycle. I can struggle crossing roads and can fall down mid way across. I cant push a trolley, a heavy door or a pram. I cant carry a tray\plate or cup from one location to another. I cannot play games on pc which use trigger type actions. Yes sudden emoion also brings them on, as do hormone chages and tiredness. I struggle to do several things at once. I can fall asleep at the drop of a hat, even while drinking strong coffee or smoking a cigarette. I am fully conscious during my seizures but cannot stop myself getting hurt unless I catch them quickly enough. I am better when I have my mum or someone strong with me as they can help me to the ground as it is usually my legs i loose control of first then rest of body. My mum can usually tell when one is coming as my eyes go strange. I am 40 and my mum is 61 and has Osteo and damage to her back from a fall so this is hard on her. I am scared to take my kids swimming, some people thing I am drunk as although I think I am speaking, no-one else can understand me as I try and tell people I have these a lot and will be all right in a minute or two. I havent worked since being let go after a 3 month trial in a job which coincided with the start of the seizures. They took me on as I advised them the doctors fully expected the seizures etc to go away within 8 weeks but they didnt. I am on different meds now as first specialist did not advise me ever going on SRI type tablets again and they make me sleepy but I have tried coming off them before and I basically struggle to get about or do anything in the house, whereas on them , I am usually ok for first couple of hours in the day. i am hoping they can make a real difference to my life when I start this treatment at the end of the year…I had an IQ in top 2% of population, was always on the ball with things and the person who found solutions or looked into stuff for my mum and sisters till my marriage broke up. Ok I have proved i am better at dealing with other peoples problems than my own but at moment its scary, I am a logical person who relied on their brain heavily as I amnt the best at domestic skills lol and its let me down and no amount of self analysis and use of logical thought paths can get me to fix this myself. Yes I had a bad marriage breakup but I dealt with that and finally moved on from it a couple of years ago, before the seizures started…I want to give my kids back the mum they had 18-20 months ago but am stuck in limbo and wasting precious years of their childhood i could be enjoying more fully with them 🙁 I just want the old me back, the night owl, not the one who sleeps more than my kids if you add up all the broken sleep I have.
My best friends has PNES,( going on 4 yrs now) she lives in Sydney, and we are finding it extremely hard to find a female doctors who is capable of treating PNES, please email me at baitrunner@bigpond.com if you can suggest anyone…I have seen first hand the stigma associated with this , and it’s atrocious, especially in the Medical profession, people whom you expect to have some empathy, treat this like the person suffering from PNES is doing it on purpuse for some attention…unfortunatly we did find a female doctor, but she is a registra (Lauren taylor)and cannot treat my friend long term..so we are at a loss.
My son Aidan who was 6 years old has non epileptic seizures at the time didn’t know what was wrong with him.We did VEEG it picked up mental issues.Im haven the most difficult time with tryn to get help for him.He goes to psychology she diagnose him with PTS,but tells me its a mine thing.I let her know its not this is very hard for me to deal with.Now he is 7 years old we still go through the samething.Its been almost a year no one can tell me whats wrong with my child.He has fever when he goes through his mood swings for a week or his body heats up and their is know fever.He gets in a move were he is like a baby he chew on things whatever he get his hands on.He start shaken his body vibrates he be deformed his head puffs out on each sides.He can’t walk or sometimes he can’t talk or catches his breath.Now at night when he goes to sleep he began to be very jumpy,as soon as he lay his head on the pillow and close his eyes.He be to the point sometimes it like he is comen off the bed.Its very scary so scary to watch your child go through so much as little as he is.
Hi Elinda – I was wondering how your son is now. I was diagnosed with PNES January of this year, I have my own mixed bag of psychological challenges and benefits and so does my daughter, who just turned 8. Some things you said about your son’s symptoms really resonated and resembled some of the challenges we have had with my daughter. Her symptoms began very early in her life seemingly unprovoked. I was hoping I could be helpful to you and your son. I know what you are going through, I can relate to the feeling of helplessness and heartbreak to see your child go through something so traumatic and confusing.
Please help, my daughter is 16, honor roll student, plays sports, out of the blue she started having attaches, its going on 5 dsys now, hours at a time, how do I help her
My husband has had a heart attack triple by pass surgery due to a cholesterol sensitivity no high bloodpressure 2documented strokes prostate cancer an internal cyst in his brainstem area .Hardening of the arteries in his brain and a chemical imbalance . He has had many non epileptic events. He is not nor has he ever been depressed .Before he got sick he was very active being a president of the outdoor club for years ….chief referee for mens soccer ..president of Diabetic Assoc for many years . He was head of food services at a fairly large metropolitan hospital for over 30yrs. A job he was very good at .He is now in a wheelchair because his balance is extremely poor and he is losing sensation in his hands and feet. Even although he doesnt fit any of the criteria for PNES our doctor seems determined to diagnose him with that .He is fed up and willing to accept anything if it will help him walk again . I just think it all doesnt fit ? Its like putting a square peg in a round hole !!!
Hi I have a 17 yr old daughter with fibromyalgia since she was about 12. She “faints” but she tells me she can hear and feel everything going on around her. We have been told she needs more salt and water both of which she gets plenty of. She is on florinef. She still “faints” (this has been going on for about 4 yrs) In the last year she started with her right hand shaking severely,sometimes her cheeks twitch or her head jerks, sometimes her hand locks up and she can’t move her hand or wrist. The other day she couldn’t move anything as she sat on the floor in a store. She could talk with her mouth closed and blink. On the way home from the neurologist both hands were shaking (normally it is the right)and at different tempos. We went to a neurologist yesterday and he thinks she may have pnes. She had an eeg where her hand shook with the flashing light but it was normal. I am willing to send her to a pyschologist but I am getting tired of her being told it’s in her head. Some people think the fibromyalgia is in her head too. This is so fustrating. Anyone have any ideas on how I can help her? Thanks
would love any ongoing information. my daughter was diagnonsed at age 16, it took several months for the final diagnosis and no one really knows how to treat her. she was questioned extensively at one hospital about the gardasil inj for hpv. she had all three inj. prior to her dx she had two shoulder surgeries, one breast surgery and many months of physical therapy and chronic pain which lead to inactivity. she has seen a neurologist and several psychologists and psychiatrists. she is a senior in college now and struggles sometimes daily. people feel she is faking until they actually see it take place. more education is definetely needed in the public. thanks in advance for any help you could guide our way.
She’s Not faking it. they are true seizures. I live in Baltimore and was seen at multiple hospitals with no help until my last visit. My seizures were caused by stress from a car accident I was in. Have been seeing a neuro therapist. Says it’s all related to post traumatic stress.
Would you be willing to share the name of the neuro therapist in Baltimore?
I’m a 40 year old woman who suffered from seizures for over a year. I was seen by a Neurologist who diagnosed me with Epilepsy. Was placed on seizure meds- continued to seizure, in fact the medications made me worse after several medications even an allergic reaction to the medication, I was worse than I was before. Not knowing any better I continued to trust my Neurologist. By this time I was so drugged I couldn’t function I was forced to take a leave of absence from work, couldn’t drive and was sleeping 16 hours a day. I wasn’t even the same person. I had always been a very proffesional, put together, hardworking individual, a wife, mom, and supervisor. I held leadership positions at church and at work. I worked 40 hours a week and did plenty of volunteer and service hours when I wasn’t at work. Now I was relying on my family for everything from helping me with my meds, food, even the simple tasks of walking. The unknown was getting the best of me, what is wrong with me is all I could keep asking?. Finally my Doctor referred me to a specialist and for a video EEG. He listed PNES as one of the differentials. I spent the next few weeks reading and researching all of the differentials waiting for my appointment. PNES was a perfect fit, I had been abused as a child, and have had many years of stress, my husband suffered from depression, was unemployed at one time, my teenage son had suffered from addiction, my teenage daughter had been in some trouble, I had a lot of responsibility and stress, but always just held it in and would tell myself this is normal, just smile and it will all be okay, when inside I felt like I was going to explode with all the stress and worry I was carrying. Everyone always told me I was so put together and calm they didn’t know how I did it. Little did they know how broken I felt inside. So PNES fit. I was a ticking time bomb. So when my diagnosis came it wasn’t a surprise, the Doctor was great in explaining everything, but didn’t give me any referral. I actually found my own therapist and explained to my therapist about PNES. She was great. I think the hardest part of this disease is there is no quick fix or magic pill. It’s all up to you and how you think, act and deal with it. I’m a survivor and always wanted to survive, I didn’t ever want to be the victim. I was a victim of horrible things but I survived them and they have made me the person I am today, more caring and compassionate for others who struggle each day also. I find mindfulness, a good diet, exercise and plenty of sleep are my medicines of choice. I’m not taking any other medications and I feel great, since my diagnosis 4 months ago I’ve only had a couple of episodes – which were brought on by stress. I’ve learned to control my stress now, which has been great. It’s okay to take a break, walk away, cry or even say no. I had to change my entire thought process which isn’t easy and is still a work in progress. I’m so grateful for sites like this one where you find out your not alone, lots of people suffer from this daily also. I wish the medical community was better equipped and knowledgeable about this disease and worked with the mental community to better help patients. I don’t know what I would of done without the pages and books that I read to learn more, because I learned it all on my own with very little help from my doctors. Best wishes to you all! Just know there is hope and help. I can testify to that, I’m healthier and happier today than I’ve ever been. But it takes hard work and a great attitude.
My daughter is having the same problem but her cause was after over drainage of her VP shunt and gave her hemorrhage in the brain. The doctors don’t think it’s seizures since eeg comes back normal and states it was not cause by the over drainage but just life changing events cause it. Does any one have the same problem? Or suggestions Thanks
Are the psychogenic seizure programs outpatient or inpatient? Can someone answer this question? I have been living with pnes for many of years. They are still complicating my quality of life.
Our PNES program at the Northeast Regional Epilepsy Group in NY and NJ is an outpatient program.
My daughter now 14, started having seizures in January, 2015. She has seen many Drs, neurologist, psychiatrist, psychologist, ERs Drs, etc., which all were excellent, but no diagnosis except “non-epileptic” seizures. She has had MRIs, CTs, x-rays, EEGs, and VEEG. She has been on many seizure meds and on an anti-depressant. The meds will help for 3 days to 2 months and then we are back to having seizures. She missed most of last year’s school because the school was scared of her getting hurt. So, now a week before school starts, seizures are getting worse. As you all know, she has to go to school. No one has diagnosed her with PNES, but all the research that I have done, Dr MOM, is that is what she has. I have been reading John Hopkins and Cincinnati Children’s Hospitals websites and I just want to go there and sit on the step with a sign “HELP MY BABY GIRL”….Living in the Chattanooga, TN area, I have not found anyone that is knowledgeable of PNES. Any suggestions??? I am like the rest of the moms, I am desperate and at my wits end.
I recently had my first “seizure”. What I find frustrating is my psychiatrist immediately said my neurologist was wrong and I needed a second opinion. I have been struggling for 8 years with PTSD. I somehow think a neurologist would have far more experience diagnosing PNES. No stone was left unturned, yet my phych would have nothing to do with it. The psychiatric world is truly a joke. I get 15-20 minutes every 3 months being asked arbitrary questions and then given a prescription. I have lived with PTSD for 8 years. The least she could do is listen instead of dismissing it as rubbing. Sorry but I think a neurologist trumps a psychiatrist on this one. I feel very stuck right now and am feeling more hopeless by the day. At this point I simply don’t want to continue beating my head against the wall.
I’m male, 20, live in northern California. This is by far the most helpful,relatable article and comments I have encountered so far in my struggle with my pnes. The “seizures” occur at least twice a week and are the tip of the iceberg, but less concerning that my day to day constant symptoms. If anyone who has had a breakthrough with their suffering would like to call, text or email me, to help me in any way, please do. haydenfirenze@gmail.com
Thank you and my condolences to those enduring. I know now I am not alone in the frustration aspect of the lack of information on my condition.
Hello everyon, Iam an old soul in this journey. I have been dealing with ones for years Iam 43 and it starte sat the age of 24. I have been from one doctor to another for years. Finally for one 6 years ago that diagnosed me with PTSD, I was with her for almost 2 years the one day they just stopped so I stopped going to see her, I went for 6 years almost completely seizure free the bam her I am again 4 days now and can’t function the problem now it that I leave in a different stat and I’m finding it hard to get help. Everywhere you go the doctor community looks at you with that your faking it. It is so frustrating, they still want to use the term pseud seizures which I find very offensive these seizures are by no means fake I believe they need to get there self a little more learning when it comes to speaking with patients. I don’t understand why this hasn’t be came more of a priority in the medical field, we suffer and a lot of us suffer for years, the fix they want to give is to drugs us. But how is that helping no one can function drugged out of there mind, well in not going to stand for it not. Anymore
Thank you for this article. I have a question that I hope someone here can help with.
If being on lithium changed my daugher’s “episodes” from what were being called panic attacks but looked to me like “tonic” seizures — into full blown grand-mal (tonic-clonic) seizures with greater frequency… and and stopping the lithium seems to have allowed them to go back to being the relatively (?!) minor kind she was having before — is that an indication that what she’s been dealing with is likely to be epileptic rather than PNES since the meds do seem to effect it?
More detail:
My daughter, 16, has been having “episodes” which we’ve been treating as PNES up until a week ago. They’d start with panic or a reaction to overstimulation like sound and chaos — but would become more seizure like. In hindsight, I would call them Tonic Seizures lasting around 3 minutes.
She started Lithium, and within a few weeks, she was having full blow grand mal seizures every 3-5 days. It has been very debilitating, leaving her fatigued for days and with sore muscles and joints that never get fully better before the next one. The only positive thing here is that now I’m much more sure that what she was having before were in fact seizures and not just panic attacks. I don’t know what causes them, but I know a grand mal seizure when I see one.
Once I finally actually did see one and recognized it, we stopped the lithium (with the doctor involved, not on our own) and have switched to Depakote. We’ve been on that only about week, and a very low initial dose to start with so I’m not very surprised that we haven’t entirely ended all seizure activity even if ultimately that drug will help.
Do you think that the fact that the lithium had the impact that it did, lithium being known to lower the seizure threshold for those prone to them, is an good indication that what’s going on is in fact neurological and not just psychological?
She also reports muscle spasms and occasional jerks that may be related to the muscles and tendons recovering from the grand mals, but also might be attributable to intermittent myoclonic seizures.
We’re having a blood test today, after a week at low dosages of Depakote ER to see how she’s tolerating it, so it’s likely they’ll increase that level, but that’s largely being prescribed for bipolar, not epilepsy for now as the prescribing doctor is her psychiatrist. We finally were able to browbeat the neurologist into scheduling a 48 hour EEG, but that’s still a few weeks away. The one time he saw her in the past was almost a year ago, and he did a basic neuro exam and gave her a 1 hour EEG that found nothing. He warned us that wasn’t conclusive, but said he didn’t see any other neurological signs at the time.
Are we on the right track here?
EMDR has been found to be very efective for dissociative seizures (same as PNES)
http://www.nescn.nhs.uk/wp-content/uploads/2015/02/Katy-Collinson-Treatment-for-Dissociative-seizures.pdf
I have used it for the person I am caring for, and after 3 sessions, many of the symptoms have already been reduced
I was just recently diagnosed with PTSD based psychogenic nonepileptic seizures(PNES). I was referred back to my psychiatrist by my epileptologist**and my psychiatrist said psychotherapy might help but sometimes it can make things worse. The problem and major concern I have right now is that I am having 3-4 drop seizures a day which means at any point during the day without warning, I just drop to the ground. I have hit my head numerous times, caused multiple lacerations on my face, fallen in the shower and bruised ribs and hips. Thankfully I have not broken anything yet. The other problem I am having is finding a neuropsychologist who deals specifically with PTSD based PNES and concussions (PTSD based psychogenic nonepileptic seizures) for further testing and to make sure I have not done any excess damage to my skull or brain. I would really apreciate any help and or advise at this point. (My PTSD is non military related)
**Side note…. My epileptologist did not tell me I had PNES, he said I had PTSD based seizures and sent me away without any explanations or referrals. I went through a year and a half of all kinds of EEG testing, blood work, etc before that point. I did not get a formal diagnoses until a month later when I called back and his secretary explained it to me.**
I began having seizures a bit over 8 years ago when my husband began treatment for leukemia. It took until a year ago before I was finally told I have nonepileptic stress induced seizures. I can relate mine to the illness and death of my husband. It took over five years before I began to grieve ‘properly’. I can usually tell when I will get a seizure, but lately, it changes. I had one last night for no apparent reason. This time, I was nauseous and very hot – sweated profusely. I have been on anti seizure meds, for other reasons, (the seizures began after years of taking those meds), and no longer take them. I have used alternative healing therapies, as well as psychological therapy, but still, have the seizures. I am tired of this. I am willing to work at it, but continue to have them. One therapist said – so you have lost your husband, your (stepsons), your house, most of your possessions and the memories attached when you no longer can see them, your job, your great nieces, so on… I still have the seizures. I still have an inhibited life because of it. The seizures started at 50 years of age. On the whole, my life is so much better and have dealt with past issues. What is my next step?
This is a good article. As someone who has been misdiagnosed for over 30 years and after a study of seizures, it is seen that mine are more inline with those of the PNES format. Also, as a person who believes in the Bible’s words of speaking in tongues, God has validated my health origination as being childhood trauma.
This is a good article. As someone who has been misdiagnosed for over 30 years and after a study of seizures, it is seen that mine are inline with those of the PNES format. Also, as a person who believes in the Bible’s words of speaking in tongues, God has validated my health origination as being childhood trauma.
i did not know what was happening to me when i had these odd seizures happening to me..i was married but the marriage turned for the worst..see i have a severe injury from a car accident during the marriage..that old limbic system was one of my 8 day bleeds along with my ex never going to the neuropsychologist to talk after hearing he needed to change by not pushing and being so harsh..and i had to do my own billing for rides, already a child of abuse, then being infertile for 5 years but then we had children through in-vitro but he moves us to his mom’s when the kids were 3..of course scandal in between accused of infidelity with no proof on the internet by a group..then at his mom’s he asked me for a divorce..i ask for marriage counseling and boom! the seizures come…so from 2005 until now i have combated them but divorced 2011..let go of that crap…but this year found this….PNES I got my Topomax down to 100mg and just on levothyroxine for hypothyroidism and naturals…other than that i am trying to figure out how to truly get the build up to calm..with a insufficient Limbic i get a build up of stress..it does not come out by exercise or talking or writing..it builds and explodes and yes the seizures are now mild and less often but the build up is more painful because i lessened the topomax because of the migraines which are now just headaches that last for 3 days but at least i do not have to stay in bed anymore… And yes my faith has helped me also let go of my past and be free now this has downgraded and i need the knowledge to go in steps to remove the topomax…
My daughter suffered a concussion followed up by complete amnesia (10 days later) and an onset of PNES nearly a month later. After 8 months and 23 doctors we still cannot find a solution. Has anyone truly found a solution for these?
My daughter was diagnosed with Epilepsy. The neurologist was very confident about the diagnosis based, my Daughter had an EEG (no idea if it showed anything; we were tired and may have misunderstood what he said about that). MRI was negative for problems. For the past 4 months or so, I have seen weekly occurrences, making strange faces (this involved cheek twitching and lip quivering). We did not realize it could be a serious problem until she had an obvious seizure (simple partial) last week. What is troubling about my daughter condition is that we have seen many daytime seizures, and that recently the seizures seem to cluster together. No idea if there are seizures occurring at night. We were given a prescription for Kapra, but are still weighing the risk / rewards of giving the medication to a toddler. After returning from the hospital, my daughter experienced a round a vomiting lasting from 3 AM to 11 AM, followed by additional vomiting the following morning at around 2 AM. Nothing sense then. She has not had an appetite, is drinking fine, and otherwise appears healthy. I read a lot of blogs where people who shared their testimonies kept mentioning Anti-seizure Herbal medication.
For a long time I suufered from headaches and migraines..6 yrs ago I started having memory loss, fainting spells, and seizures. 6Yrs of Dr’s and specailists and high doses of meds that helped a little but not always. I had an EEG video monitored study done and they now say I have PNES. I am on state medical assistance and can’t find anyone who trests this. My relationship is atruggling because we are at a loss to how to fix this issues. I am getting frustrated because I feel frained from searxhing for answers and someone to take this seriously and tell me I’m depressed. I enjoy everything in my life despite a darkened past. I know that causes issues but it was a long time ago and I feel I am being dismissed. I feel like they use my past as a fast diagnosis to explain things I can’t internally explain. I feel these seizures and other symptoms are more muscles or bone and neuro than just “emotional stress reactions”. I don’t understand how I can be depressed if I am happy with everything in my life. It’s not perfect but then again what is? I have goals and actively try to reach them..I am social. I have no desire to hurt myself or anyone so why do they keep enforcing that I am? Please help me find a PNES therapist in/ near Bucks County in PA. I am desperate for resolution!