Do you really suffer from epilepsy or is it dissociative seizures? How an online toolkit begins to prevent misdiagnosis.

Dissociative seizures are not widely known and are often misdiagnosed for epilepsy which leads to the wrong treatment given to patients.

While some individuals may experience both conditions simultaneously, many are mistakenly treated for epilepsy when they actually have only dissociative seizures.

Due to this increasing problem, staff from NHS Greater Glasgow and Clyde (NHSGGC) worked together to launch a toolkit to help prevent misdiagnosis and to spread awareness of dissociative seizures, also known as NES (non-epileptic seizures), and how to manage them from the comfort of your own home.

Understanding what type of seizures you’re having is not always straightforward. It can take trialling different medications to see what works best and multiple appointments with an epilepsy specialist. This can be stressful as it takes a lot of freedom from daily routines and employment.

What are dissociative seizures?

A dissociative seizure can include loss of consciousness, going blank and staring, or shaking. Although they may appear similar to epileptic seizures, their causes are different.

Dissociative seizures are caused by a number of factors, a few may stem from stress, trauma, and mental health conditions. Unlike epileptic seizures, they are slightly different.

These seizures can be caused by any interruptions to the normal connections between the nerve cells in the brain. This may involve high fevers, low blood sugar, alcohol/drugs withdrawal or brain concussion.

Do all dissociative seizures look the same?

Dissociative seizures do not look the same. Symptoms differ from person to person, making it essential to understand that each experience is unique. This should never invalidate your experiences and does not mean that your diagnosis is wrong.

People are encouraged to recognise their own experiences with dissociative seizures and develop personal coping strategies.

How common are dissociative seizures and why are people misdiagnosed with epilepsy?

According to Scotland’s NHS website, “1 in 10 people suspected to have epilepsy are diagnosed with dissociative seizures when seeing a neurologist.”

Dissociative seizures are often mistaken for epilepsy because of how similar the seizures appear. As a result, many patients are misdiagnosed with epilepsy for several years before discovering they actually have dissociative seizures.

Consequently, it leads to people being treated with medicines for epilepsy for long periods of time before being correctly diagnosed. This is an even larger issue right now with the shortage of epilepsy medicine which is only made worse by a misdiagnosis.

The role of the NHS Toolkit.

Dr Sharon Mulhern, Consultant Clinical Psychologist at NHSGGC, and Dr Saif Razvi, Consultant Neurologist, were instrumental in developing the toolkit.

Dr Razvi, a neurologist, makes it clear on why and how dissociative seizures are misdiagnosed/takes time to be diagnosed. He noted that in the past there had been guilt and shame surrounding dissociative seizures.

Therefore, people with these seizures often feel ashamed and isolated. He further stated that there is a lack of information available to patients which then leads to accusations that patients are “putting it on”.

Dr Razvi explains, “It takes detailed investigations by a neurologist to diagnose Dissociative Seizures.

Without it, people might face a lifetime of worry and confusion about what’s wrong with them, but getting diagnosed means at least some certainty, and the chance of needing medical services reduces, as do other possible harms.” This is one of many reasons why the new app is important.

About the Right Decisions app

The toolkit takes people through the diagnosis of dissociative seizures, gives information on why their medication may not be helping them, and how to live with the condition. The toolkit has a wealth of knowledge where people can learn more about their seizures and how to handle them from the comfort of their home.

Since its launch, over 300 people have accessed the app, and early feedback has been positive from both clinicians and patients.

Dr Mulhern said, “In some cases, the app is so useful that once they’ve been through it, it’s possible they won’t need any additional support from medical services.”

The app is available for free on the NHS Right Decisions Service, home to a range of digital services developed by NHSGGC and other health providers throughout Scotland.

Susan Groom, Director of Regional Services at NHSGGC, said that there is a possibility of this app spreading even wider to other regions of the UK.

You can also watch a demo of the app.

Concerned about seizures but have no diagnosis?

Seizure diaries can be helpful especially if you are unsure whether or not your seizures are dissociative seizures, having a record could be helpful.

Since many people don’t know what happens during seizures, especially dissociative seizures, diaries should be available for others to write down what they see.

It is also an easy way to show health professionals what your seizures are like and then diagnose your type of seizure. Also, it is a great way to monitor any side effects of medicines you take.

Some people may prefer to have a physical journal to record these seizures. However, if you would prefer an online tracker that can easily be copied and pasted.

Epilepsy Foundation also has a “Seizure Event Diary” template that can also be printed out and filled in.

Further support and resources.

If you suspect you have dissociative seizures and need more support, here are some helpful resources:

· Epilepsy Society Helpline (which also supports dissociative seizures): Call 01494 601 400.
· The Brain Charity – Provides information and support for those with non-epileptic seizures
· FNDhope and FNDaction – Charities that also provide support for non-epileptic attacks. They hold support meetings and online forums where patients and families can receive more information and talk to others about the condition.

Raising awareness of dissociative seizures and providing accurate information is crucial in preventing misdiagnosis. With improved access to resources like the NHS toolkit, more people can receive the correct diagnosis and appropriate support.