Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

Important Announcement: New research study recruiting adults diagnosed with psychogenic seizures (PNES) or non-epileptic attack disorder (NEAD)

blogAlthough psychogenic seizures are definitely not a new disorder and are certainly a grave and often severely disabling health problem, there are painfully few new research studies that examine novel treatment options that might benefit persons suffering from PNES. So, I was especially pleased when I heard about this new project that is being conducted out of the UK by none other than Dr. Markus Reuber.

Who is Dr. Markus Reuber you may ask? He is a Professor of Clinical Neurology at the University of Sheffield, Honorary Consultant Neurologist at the Sheffield Teaching Hospitals NHS Foundation Trust and Editor-in-Chief of the Seizure European Journal of Epilepsy and is a very powerful voice in the field of PNES or NEAD as they call it in England. His publications on the topic of PNES are of exceptional quality and many are truly ground-breaking.

So, what is this new project about?

Dr. Reuber and his doctoral graduate student Gregg H. Rawlings are conducting a research study at the Royal Hallamshire Hospital in Sheffield to test whether writing can help people with seizures feel more in control of their condition, reduce their seizures and improve their quality of life. The knowledge gained from this study will also further contribute to a better understanding of what it is like to live with seizures and will probably later turn into a book on testimonials.

How do you know if you can participate? If you are over the age of 18 and have a medical diagnosis of “epilepsy”, “non-epileptic attack disorder” (also known as psychogenic non-epileptic seizures or dissociative seizures) or both “epilepsy and non-epileptic attack disorder,” you could be a viable candidate. Participants must be able to write and complete a series of questionnaires in English without any assistance, and must be able to provide informed consent. People taking part in this study will have to write four times for twenty minutes about different topics.

To read all the details of the study and to register, go to this link: https://sites.google.com/a/sheffield.ac.uk/developing-a-writing-intervention-for-patients-with-seizures/

13 Responses to “Important Announcement: New research study recruiting adults diagnosed with psychogenic seizures (PNES) or non-epileptic attack disorder (NEAD)”

  1. I am epileptic and my complex partial seizures are under control, but I have non-epileptic seizures all the time. It’s thought I may due to having PTSD. The time it takes to for me to feel better after a non-epileptic seizures, is much longer than the partial complex, grand mal, and peti mal seizure.

  2. Nawahl Mortlock says:

    A pity that I’m from South Africa, Cape Town…I’m suffering from pnes since March and haven’t been working. Alone most of the time without family support cause of my parents passing…

    Not alot of people has the knowledge specifically in medical profession…so want to get over this

  3. Jacquie McDowell says:

    Hi, I have a 20 year old son who has PNES and also has Aspergers syndrome. He would like to participate in your study. Out of interest to you I also have two daughters, one has Juvenile Myoclonic seizures and the other has Grand Mal seizures. Could I please ask at this point if the three types of seizures can be related?
    Yours faithfully J. McDowell

  4. Diagnosed in feb 1997 with P.N.E.S
    The Dr told me to grow up .
    Im now 50 yrs old and still taking non epileptic seizures since i was 11 yrs old .used to hide it from my family .My mother and father seperated when i was 16 yrs old .i was seeing a physcologist she told me about disasociation seizures.i eventually sore a physcologist 10 yrs ago and he explained it to be like when the computer switches off and you have to reboot it .same happens to the brain .

  5. claire simpson says:

    my daughter was diagnosed with dissociative disorder (non epileptic seizures ) about 6 months ago , she has the blinking ones staring and full body seizures and she has just started having the drop seizures ,she also has postral orthastitic tachycardia syndrome {P.O.T.S) and fibromyalgia .she had just turned 19 when she became ill she is 23ys old today .she has to use a wheelchair because she can’t walk very far .will she have these seizures for life ?.

  6. Claire pollard says:

    I was diagnosed in 2010 after suffering numerous attacks for two years after my very first tonic colonic sezuire in 2008. After seeing two neurological doctors and not still knowing what was wrong with me it was clear after a third neurologist diagnosed this condition known as non epileptic attack disorder. Having sezuires has made a big impact on my life and now trying to control these attacks.

  7. Victoria Cole says:

    Hello I am 27 and a paeds nurse on the neuro ward at Bristol Children’s hospital.
    I have been diagnosed with NEAD after my fourth episode of becoming unconscious with a GCS of 3 in resus resulting in near ICU admissions every time. The longest I have been unconscious for in resus is 6 hours.
    I have a few other health problems including a leaky heart valve, endometriosis and asthma. I am also now wondering if I have lyme disease as I have had the rash, have almost every symptom and am undergoing spinal investigations so wondering if the NEAD is associated with that?
    I would be very interested in your study and am definitely an interesting case!

  8. Katie Rowland says:

    I am in year 6 of PNES and PTSD. Fortunately I am at a stage where I can read short pieces and write. For nearly 5 years this would have been extremely difficult/impossible. Completing forms answering a questionnaire and writing for 20 minutes would have been a dream for me. In my case my symptoms would have been exacerbated.

  9. AP says:

    I am a 42 year old women I suffered with epilepsey after the birth of my son I suffered with it uncontrolled very badly for 19 years but the epilepsey got controlled then my son left home to go to university and I started suffering non epileptic fits,I have had them for 3 and a half years now uncontrolled.I have had CBT and am now waiting for counciling.I wonder if I could become part of your study?Thanks
    Aimee

Leave a Reply