In June and July of this year I blogged on how poor standard of care is in the US for many patients diagnosed with psychogenic non-epileptic seizures. However, this month I am happy to write about a positive experience I had at Overlook Hospital of Summit, New Jersey.
In the summer, I blogged about deficient care for PNES in neurology and mental health settings in the US. First, how the PNES patient management in many epilepsy monitoring sites is inadequate since no PNES treatment programs are in place nor are proper referrals provided upon discharge. Second, from a psych perspective, the two main mental health associations in the US don’t bother mentioning PNES in their public education efforts and that patients sometimes report not being “accepted” for therapy or by psychiatry because the treating mental health provider is not familiar with PNES.
My experience at Overlook Hospital this month was very different and made me think that it is possible that PNES will come to receive the proper recognition and treatment in more than just a handful of centers someday.
A month ago, I received an invitation to come and meet with two teams: the epilepsy program and the hospital’s behavioral health team to establish clear guidelines on psychogenic non-epileptic referral and treatment decision trees. I was very pleased with what I found at that meeting: a group of highly dedicated and motivated professionals who came together to understand PNES and its challenges and to make sure that the available resources are offered in the most efficient way possible.
The meeting occurred sort of like this: Facts about PNES and the specific tests that are used for diagnosis were presented to all. A lively discussion followed on all the treatment resources that the hospital has (individual, family, and group therapies; cognitive behavioral and mindfulness treatments; psychopharmacology) and all the resources the epilepsy program has (epilepsy specialists, neuropsychologists and a PTSD treatment specialist). The group then hammered out guidelines for making informed decisions on the different treatment paths available for patients with PNES and more importantly eliminating as many obstacles as possible so that patients can get to those resources. I walked out of the meeting with a positive sense that something very good and important happened. Let’s hope this spreads elsewhere in the future.
Congratulations! Very important work.
Thank you!!
I have a 10 yr old daughter who has been having these for about 3 yrs now! They have had her on the meds but she still has these seizures everyday at school ! Lately she comes home early about 3 times a week because the school don’t know what to do an neither do I she normally don’t have them at home even know when they first started they was only at home! She constantly complains of seeing spots,flashes of lights,headaches,an sometimes even images, she has also been diagnosed with selective mutism ,global apraxia,sensory issues ,an dyslexia do you know if any of these are connected with these seizures?? Right now Cassie is having these at church,some just recently at home,an everyday at school what can I do cause right now she misses more than she goes? We tryin do the whole tough love thing that her doctors recommended an she still has them,they recommended that I walk off an leave her in a room by-herself while she is having them giving her no extra attention which with my daughter means when I leave she’ll cry for about 30 min then she’ll get up having them,go fix her something to eat while still having them,go use the bathroom still having them,go to bed an watch a movie an will have them till she falls asleep, lasting 2-3 hrs in time sometimes!! The school reports that if they tell her to stop that sometimes Cassie can stop them but that was her school last yr an she’s in a new one now! I’m lost I don’t know what to do an neither does the school?? I just want her to stop,an unlike a lot of people I don’t believe she can,she jerks to fast an hard to have any control over this it doesn’t scare us anymore if she starts having them we go on with our day like nothing is wrong or happening! Sorry this is so long!!
Letrenia,
My first convulsive panic attack was at home when I was 12. Since then, they’ve always happened outside the home, at church or at friends’ houses or at school. For the first couple years, my teachers thought I could “snap out of it”. Some teachers asked me if they were for attention or if I planned when I would have one. My counselor explained the cause of the attacks as an “overwhelmed flight or fight response”. I knew I wasn’t faking. I didn’t want these. I cannot walk, stand or use my right arm, so every time I became really super excited, worried or afraid, my brain would tell my body that it was too much. So my inner (sometimes subconscious emotions and thoughts) would be involuntarily expressed through tonic-clonic resembling attacks that could last up to 3 hours and always left me nonverbal shortly before, during and after. Your daughter can’t just stop her attacks when she starts convulsing, because it is similar to a pressure valve bursting; emotions build – whether good or bad – and then, boom, it’s the “point of no return” for a while. I’ve had these attacks for 6 years now. I sat down with my teachers and gave them all an info card about what to do and how to spot an oncoming attack as much as possible. I’ve explained on the card the differences between PNES and Epilepsy, so that they know that they do not need to call an ambulance unless the attack has gone on for hours and I need calming medicine in order to have the attacks stop. Sometimes, I remember them, other times I don’t. I cannot talk during them with my voice, but know how to ASL finger spell. Some common words I’ve used to communicate during the convulsions are: “water”, “pain”, “lay down”, “stay” and “help”. STAY WITH YOUR DAUGHTER. The attacks are brought on by the body feeling overwhelmed, over stimulated. More often than not, the body is subconsciously “defending” itself, and to not have someone there who can soothe you and help you is a very terrifying feeling of utter vulnerability. Just stay with her and calm her. Stroke her hair, remind her that she’s working through them and that no one is mad at her. When I am finished with an attack, I often feel extremely tired and mad at myself. I feel like a burden during them, so I also suggest keeping this in mind when you are with your daughter. Tell her you know she can’t help it and that she’s getting out of them quicker every time. I also wanted to tell you that hormones (puberty) can increase the chances of really tough, long attacks. My counselor told me she believes the reason I have not gad attacks at home is because I am subconsciously feeling secure at home, but any place outside the home, I am suddenly confronted with a new atmosphere that causes subconscious anxiety that eventually builds and builds…
I hope this really helps you explain your daughter’s attacks to her teachers.
Also, please take a look at http://nonepilepticattacks.info This is a GREAT info site!