Non-epileptic seizures
What are you supposed to call them?
Their name can vary from non-epileptic seizures, Psychogenic Non-Epileptic Seizures (PNES), Non-Epileptic Attack Disorder (NEAD), dissociative seizures to Functional Neurological Disorder (FND). Whichever of these titles you have been diagnosed with, you don't really care what they are called, all you know is that something very scary has happened in your health, you are struggling to get help and to understand them!
On this page we are going to call them non-epileptic seizures.
Your diagnosis
This means that at this time your neurology team have been unable to see epileptic activity on an EEG (which monitors your brains electrical activity), and you may have shown key symptoms of non-epileptic seizures such as having your eyes closed during seizures.
Although only present in a smaller percent of diagnosed individuals, it is possible to have both non-epileptic seizures and epilepsy.
What this actually means
This means that you won't respond to medications for epilepsy. You are probably feeling very stressed and being told to try and manage your stress (easier said than done!). You may be moving between different medical departments for assessment. Not enough people have heard of them and you struggle to explain them to friends and family. Worst of all you may be feeling you have no control and can't understand this.
Possible reasons for non-epileptic seizures
One of the problems with non-epileptic seizures is that not enough research has been done to give clear paths of treatment. This means treatments available vary greatly and that often those diagnosed feel unsupported and alone.
A key area of research with non-epileptic seizures is the strong association with stress and trauma. Whether something is a trauma or not is determined by how that individual experiences it, not how others see it (they may not even know it's happened). Sometimes trauma is an experience that one person finds leaves them constantly revisiting an event and blaming themselves (this can even be bullying, bereavement or divorce), whereas another person may see that event as very unpleasant but not traumatic.
What happens in the body
Experiencing trauma and stressful events doesn't just create problems like depression and anxiety, it also has physical effects in the body. Inflammation can increase in the body and brain, often increasing pain, fatigue or poor concentration. The whole nervous system can become dysregulated, sometimes affecting movement and motor control, and with high stress hormones heart rate is affected, along with disrupted digestion and absorption of nutrients (needed for making brain chemicals) - nothing in our body works in isolation!
How does this link to seizures
Under the effects of continued stress the body's ability to regulate itself can be lost, and heart rate measurements in both epilepsy and non-epileptic seizures have been shown to change before, during and after seizures. The heart is actually the biggest electrical source in our body, and is the best system to monitor to be able to tell whether our nervous system is in calming mode or over-stimulated mode. Lowering stress and regulating heart rhythms can help the nervous system (our electrical wiring) to start regulating itself again.
When to get extra help
Although it may be a stretch to pay for extra help, it is likely to save you money in the long term. The quicker someone gets help the greater the likelihood that they will make faster and greater progress. This is in part because the more our bodies repeat a pattern (whether good or bad), the more automatic it becomes for our nervous system directing this behaviour. And non-epileptic seizures are largely just an inappropriate pattern of behaviour by a disrupted nervous system.
This is not to say that getting help later won't help, it will, it just may take more work.
Options moving forward
One tool that is used in some non-epileptic seizure clinics is heart rate coherence training. This uses a clip-on monitor and gives feedback on a screen so that you can start to learn how body and mind exercises influence what your heart and nervous system are doing. This may sound complicated, but it really is easy enough that even young children can do it. With the support of a coach to help teach you techniques you can influence what your body is doing, and improve your health quickly and long-term, even when you are not using the monitor.
It is about resetting your nervous system through lowering stress and changing how your body responds. This can be done with many different tools, and at The Seizure Shield when we work with clients living with non-epileptic seizures, we use a combination of approaches. Starting with the easier options first...
- Coaching in heart coherence by trained and registered coaches
- Using nutrition to lower inflammation, physical stress and to support the body and mind
- Helping stop negative mind chatter with easy tools
We are not psychologists, but we do have the tools to support you in resetting your body and nervous system and will help nurture your health to a place that makes it easier to do more challenging mental work with a trained psychologist later if needed. We can also refer to other trusted practitioners to aid in physical therapy or psychotherapy to support you alongside our work together if needed.
YOU CAN INFLUENCE YOUR HEALTH AND IT DOESN'T HAVE TO BE SCARY.
Many times those diagnosed with non-epileptic seizures are scared about dealing with stressful events in case it triggers a seizure. But what if you started at a place that doesn't involve re-visiting any of your stress, just helping to support and calm your body with tools that really do work.