In the field of psychogenic non-epileptic seizures, there are two “million dollar questions.” One is: Why do you develop seizure-like episodes and not some other stress-related symptoms? Is it something about your history (i.e. types of trauma), your physiological make-up (i.e. tendency to be hyper-sensitive), is there something neurological (something about the way your brain functions)? Is it all of these and more or none of these? We are still working on answering this.
The other key question is: how can we best treat PNES, how can we help you get back to health?
Currently, cognitive behavioral treatment (CBT) is being used and tested with psychogenic seizures and it looks promising.
But because people with PNES are not all the same I wonder if one size fits all or if we need to tweak it and tailor-make it? I suggest: 1) let’s first really understand what stands out as problematic for the patient and 2) provide treatment that directly targets these issues.
In our group, before treating we test and one of the things we test for is: anger. Why? Because we have seen that many patients with PNES have difficulties expressing anger (not being assertive, or blowing up out of context, or percolating with anger about things past and present). Why is this important? Anger seeps into a patient’s level of tension, physical health, quality of life and social relations. Anger provides an identifiable and modifiable target for psychotherapy. It is potentially a goldmine for therapy.
Last year we published an article. We looked at 62 patients who were diagnosed with PNES and found a significant correlation between high anger trait, “cynicism” and low quality of life. These results suggested to us that anger expression has a role in the reports of diminished quality of life in some patients.
Extremes in anger in patients with PNES are not surprising; descriptions of being brought up by adults who did not provide healthy modeling of anger expression are common. Many of our patients have been abused and are angry about this. Others are angry at their present situation.
Angry feelings that are not successfully dealt with can lead to physical and emotional problems.
So to answer the question: how can we best treat PNES, how can we help you get back to health? For those who have severe issues with anger, this looks like a good target.
I initially responded to an old “Blog” with the below but then seen the most recent post by you so decided to copy and paste here…
We’ve (my husband and I, he being the one dx with PNES) have been seeking answers, treatment and/or therapies for almost 2 years since his sudden onset of seizures at the age of 44. We’ve been to more hospitals than I can list and have seen a variety of psychiatrists, psychologists, and neurologists… the initial diagnosis was not delivered in a very positive and reassuring manner as is suggested by the many credible Websites I’ve visited. We finally stopped going to the hospital, they did nothing for him and have even, at times, made matters worse by suggesting he was “faking” these horrific and debilitating “events” (which is impossible, I have video and he has symptoms that cannot be “faked”). Even though “they” (the many different docs) say the seizure meds do not help him he is still on three different medications (which does help him in at least he will go for a month without a seizure–off of them, he seizes continuously and was DX with Status Epilepticus (subsequently spending days in a couple ICU’s)due to them stopping the meds. He has also been put on “Seroquel, Zoloft, and Xanax” in addition to the seizure meds. I assume they are trying anything they can just so they can get the “seizures” under control. He’s been in therapy for about 6 years, but has since added an additional psychotherapist who is going to perform EMDR Therapy for the PTSD. They hope by getting the PTSD under control, the seizures will therefore be under control. We feel like Lab Rats, he’s had several EMG’s and VEMG’s, all with no electrical activity showing up. The only hope we have is the therapist (and the medication, which helps but does not control. But at least he can function… somewhat). This has turned our world upside down and changed “life” as we knew it, as well as our children’s’ lives. There’s not much research being done (some docs say because it’s rare while at the same time others say PNES is common).??? Answers are rare, seemingly as “rare” as PNES. This is the only pace with a date of after 2006 or 07 that I have found that has mentioned any type of research. I wish I knew where you were. We’d be willing to uproot our family to get our husband and father back. He’s been used as a guinea pig it feels, they put him on meds, take him off meds, the neurologist doc says he doesn’t have the answers to talk to the psychiatrist, then the psychiatrist says he doesn’t know to talk to the neurologist. The doctors (some of the supposed best neurologists in the US at Washington university in St. Louis, Mo) see the DX of PNES in the chart and they pretty much just put you off, make you feel like you’ve done something wrong. One Professor of Neurology at the University of Springfield told us that he (my husband) actually had control over whether he had them, that he “could stop them or let the seizures put him in a nursing home…” where’s the positivity in that??? There have been changes in the left side of his brain affecting the right side of his body (according to the comparison of a one year old MRI to a present MRI), and that’s why (so “they” say) he has the Right-sided facial droop, and weakness on his right side. (Among many other symptoms. Since this all started on April 4, 2011 he’s been dx with at least 6 different things, when they could find no physiological explanation they dx him with PNES. That’s a hard one to swallow, but we are trying, and we are doing everything they said to do that was a “treatment.” And he just had another seizure as I write this. There is very little light, very little hope to hang on to. Our GP doc told us he’s the only patient she’s ever had that’s had this so she didn’t know what to tell us. (she wasn’t trying to be anything but honest because she had no answers). She’s the one managing all of his medicine at this time, the neurologists say it’s not their field, and the psychiatrists say the same thing, we’re the ping pong, they’re in possession of the paddles! There are times we don’t think we can go on another day… when I see the worry, fear, disappointment, and anguish in the eyes of our children I just want to hide under the blankets and stay there, so to speak.. I can hardly bare it. But some how, some way, by the Grace of God, we’re still here and still willing to try anything. Yes, he’s a definite stuffer–has never “blew-up” to my memory (14 years). Yes, he has definite childhood trauma, including severe sexual abuse before the age of 10. Yes, he comes from a family that did not show emotion and a mother that had several husbands. Yes, he has abandonment issues. Yes, he has sever anxiety and panic attacks, and yes, he has a history of alcohol abuse, but is now and has been sober and very involved in a Twelve-Step program. I think he fits the criteria for the DX, we just need the treatment that goes with the diagnosis! There is no “standard of care” for PNES. So if you have any advice, anything to offer, we would sincerely value it… Anything.
If anyone who reads this has or has been dx with PNES, I pray for you, and I hope for you, and I wish the best for you, because this is a nightmare no one should have to go through. Hang on to any hope, if only a mustard seed… God Bless.
Our son had 2 EEGs MRI’s, a stint in the hospital. He has never had a trauma in his life, not physically or emotionally. He is now 20. He has no anger issues, and is a calm person, yet, he has PNES. He has been cleared of any and all physical causes. We are going to try Tapping Therapy in the next few weeks, because we are at wits end. He was repeatedly misdiagnosed by neurologists. While he has improved now that he is off he seizure medications, we will not give him any medications because this is how this all started with placing him on ADHD medicines. I have read that there is only a 2% decrease in episodes, etc. with cognitive behavioral therapy.
Dear Beth:
I have been told I developed PNES and PDS and have decided to seek alternative medicines. I am going to see a Naturopath for natural alternatives. Already started to walk for an hour daily, became a vegetarian and are learning to avoid any person or thing that can bring stress to my life from now on. I was never abused but experienced several traumatic events such as divorce, evacuation from Sandy Storm and recently unfair mistreatment at work! These compounded events triggered the PNES so badly lately that I am on sick leave now and have decided to simplify my life and take one day at a time!
Do not fret so much about it. Keep it simple. Seek a good Naturopath ND or a Holistic MD. Get counseling and remember to relax and give thanks to God for living! The more you stress the more you will stress your love one who needs you to be strong and calm for him!
Finally, pray daily and the peace from God will give you the strength to go on.
Tryly, Beckee
since this blog have given the information regarding seizures I just want to know more detail about cognitive behavioral treatment.What procedures is followed in this treatment.
If anger is at the root of my sons anxieyty and his PNES, then how do we go about treating the anger. We have learned how to diffuse his anger (I subscribe to the website by the Lehmen’s), by adjusting our own reaction to it. But how do we get to the heart of the problem and teach him how to control his anger? When he was younger (age 10/12) anger didn’t seem to be a problem, but as he enters the teens (13/14), I see it more and more. When he gets stressed over a period of time, his anxiety, anger and PNESs all increase. He has been going through a bad period of a couple of weeks and all of these are more prevalent. Thanks.
The letter from Beth hits home. My daughter was diagnosed almost a year ago and we are still trying new Doctors to help make her problems something she can live with. Our biggest problem is the side affects of a seizure (blindness, paralysis and memory loss) have it very difficult to schedule regular Doctor visits. We were working with an excellent Psychologist but just could not keep a steady appointment schedule. Good luck to everybody with this frustrating problem.
I have just be diagnosed with PNES yesterday and I have so many questions about it and this website has helped with a lot of them so I just want to say thank you to everyone who is contributing to this and Lorna for most of the information!
I have had a PNES seizure disorder for over 5 years and am always on the lookout for answers and information, and to share other people’s experiences. This is a difficult journey but I have made huge progress in my daily functioning for the most part through expressive therapies – Art Therapy, physical movement such as yoga and exercise, mindfullness and visualization meditation as well as counseling and psychotherapy. I found no medications helped my condition what so ever. Very little info from doctors and treated terribly in the hospital system. This disorder has been debilitating and I still have bad days and sometimes weeks but there is always hope, perhaps try alternative and self EXPRESSIVE therapies as well. You may find some work well for you and even enjoy it too.
Good luck with your journeys to Wellness
I have been diagnosed with epilepsy and non epilepsy seizures – cognitive therapy makes it worse – I do not have anger issues – Keppra works best – can go two to six weeks without one – I get so stiff that my joints hurt for a long time – cannot talk for about an hour.
Hi I have these episodes Where I freeze and I can’t move my muscles tighten but I can hear you and I see you unless I’m sleeping at that time then I can just hear you and It can last so far30 minutes has anybody been through this it hurts so bad my body aches I wake up with what feels like a stiff neck and my arms they feel like they’re shaking all the time and tired
Can someone please explain to me what a Non epileptic seizure is? My son has eplieptic seizures, and has just recently started having something different.
I was diagnosed with epilepsy when I was 10 and have tried several anti-convulsants (Keppra, Topamax…). None of which helped control the seizures. I have recently been diagnosed with PNES. Cognitive behavioral therapy has helped. I also take Lamictal, which is an anti-convulsant but also a mood stabilizer. On top of that, I take Sertraline, which is an SSRI. I experience depersonalization/derealization with PNES. I haven’t had a seizure since taking the medications.