Living with PNES What You Need to Know

Understanding Psychogenic Nonepileptic Seizures (PNES): What They Are and How They Differ from Epilepsy

What are Psychogenic Nonepileptic Seizures (PNES)?

Psychogenic Nonepileptic Seizures (PNES) are episodes that resemble epileptic seizures but are not caused by abnormal electrical activity in the brain. Instead, they are triggered by psychological factors, such as stress, trauma, or emotional distress. These episodes can be alarming for the person experiencing them and those around them, as they may involve convulsions, loss of consciousness, or physical symptoms like jerky movements. Despite the similarity in appearance to epileptic seizures, PNES is classified as a psychological condition.

How is PNES different from epilepsy?

While both epilepsy and PNES involve seizure-like episodes, the key difference lies in their causes. Epileptic seizures are caused by abnormal brain activity, which can be measured using an EEG (electroencephalogram). In contrast, PNES is not linked to electrical disturbances in the brain and is often related to emotional or psychological triggers. Diagnosing PNES typically involves ruling out epilepsy through neurological tests, including video-EEG, where the patient's behaviour is observed alongside their brain activity.

Can someone have both epilepsy and PNES?

Yes, it is possible for an individual to be diagnosed with both epilepsy and PNES. In some cases, people with epilepsy may develop PNES as a secondary condition, often triggered by psychological stress. Treatment for each condition will differ, with epilepsy requiring medication to manage seizures, and PNES being treated through psychological therapies such as Cognitive Behavioural Therapy (CBT) or trauma-focused therapy.

What triggers PNES episodes?

PNES episodes are often triggered by emotional stress, unresolved trauma, or mental health conditions such as anxiety and depression. Unlike epileptic seizures, which follow a specific neurological pattern, PNES episodes can vary greatly from person to person. Factors such as interpersonal conflict, work stress, or even suppressed emotions can provoke an episode. For some, the episodes may occur frequently, while others experience them sporadically.

Diagnosing and Managing PNES: A Closer Look at the Process

How is PNES diagnosed?

Diagnosing PNES typically involves several stages of assessment. Initially, doctors will rule out epilepsy through an EEG, which monitors brain activity during a seizure. If no abnormal electrical discharges are detected, further psychological evaluation may follow. A video-EEG test is often considered the "gold standard" for distinguishing between PNES and epilepsy, as it records both the seizure-like movements and the brain's electrical activity. This helps doctors confirm whether the episodes are psychogenic in nature.

What happens during a PNES episode?

During a PNES episode, symptoms can resemble those of an epileptic seizure, such as sudden movements, falling, or changes in awareness. However, there are some key differences. For example, PNES episodes might last longer than typical epileptic seizures, and the person may retain some awareness during the episode. Some people report sensory changes like tingling or vision disturbances, while others experience emotional responses like fear or confusion during an attack.

How long does it take to diagnose PNES?

The diagnosis of PNES can sometimes take months, particularly if the person has been misdiagnosed with epilepsy previously. Because PNES is a condition that requires ruling out other potential causes, especially epilepsy, the process can be lengthy. The use of video-EEG and thorough psychological assessments are vital to ensure the correct diagnosis is made and that appropriate treatment is started as soon as possible.

Is PNES life-threatening?

PNES episodes are generally not life-threatening, although they can cause significant distress and impact the person’s quality of life. The main risk lies in potential injury during an episode, particularly if the person falls or has convulsive movements. While PNES itself doesn't cause brain damage, living with untreated PNES can lead to worsening mental health issues, such as anxiety, depression, or social isolation.

Treatment Options for PNES: Therapy and Lifestyle Adjustments

What are the treatment options for PNES?

The most effective treatment for PNES involves psychological therapies, particularly Cognitive Behavioural Therapy (CBT). CBT helps patients identify and address underlying stress or trauma that may be triggering their seizures. Other therapies, such as mindfulness-based therapy and trauma-focused therapy, can also be beneficial. Unlike epilepsy, PNES is not treated with anticonvulsant medications, as the root cause is psychological rather than neurological.

Can medication help with PNES?

Medications used for epilepsy are generally not helpful in treating PNES. However, if the individual has a co-existing psychiatric condition such as anxiety, depression, or PTSD, psychiatric medications may be prescribed to manage these conditions. Antidepressants or anti-anxiety drugs can be part of the treatment plan, but the focus remains primarily on psychological interventions to reduce seizure frequency.

What lifestyle changes can help manage PNES?

Stress management is crucial for individuals with PNES. Techniques like mindfulness, relaxation exercises, and regular physical activity can be helpful in reducing overall stress levels, which may decrease the frequency of episodes. Support from family, friends, and healthcare professionals can also make a significant difference, as a strong support network helps individuals navigate the emotional challenges associated with the condition.

Is full recovery from PNES possible?

Many individuals with PNES experience significant improvement with appropriate treatment, and some may achieve full remission. The prognosis often depends on early diagnosis and access to the right psychological therapies. By learning to manage stress and addressing any underlying trauma or emotional distress, people with PNES can reduce or even eliminate their episodes over time. However, it’s important to note that recovery is a gradual process, and ongoing support is often needed.

Living with PNES: Daily Challenges and Support

Can children develop PNES?

Yes, children and adolescents can develop PNES, often in response to stress, trauma, or family conflict. In young people, the condition is sometimes linked to difficulty coping with emotional challenges or a history of bullying. Family therapy can be an important part of treatment for children with PNES, helping parents to understand the condition and support their child effectively.

Can people with PNES drive?

Driving restrictions for people with PNES are similar to those for epilepsy. Most doctors advise against driving until the episodes are well-controlled. Depending on the laws of the region and the frequency of the seizures, driving may be prohibited until the individual has been seizure-free for a specific period. It's important to discuss this with a healthcare provider to ensure safety.

How can family and friends support someone with PNES?

Family and friends play a key role in supporting someone with PNES. Offering emotional support, helping them manage stress, and being present during healthcare appointments can all make a difference. Understanding that PNES is a real condition, despite being psychologically based, is important to reduce any stigma or misunderstanding. Encouraging them to follow their treatment plan and practice stress management techniques can also contribute to recovery.

What should someone do during a PNES episode?

If someone is having a PNES episode, it's important to stay calm and ensure their safety. Unlike epileptic seizures, there is usually no need for medical intervention unless the person is injured. Keeping the environment safe, such as moving objects out of the way, and offering reassurance after the episode is helpful. It's always a good idea to seek advice from a healthcare provider about specific actions to take in case of an episode.

In conclusion, PNES is a complex condition that requires a thorough understanding of its psychological basis. With the right treatment, including therapy and lifestyle changes, many individuals can improve their symptoms and regain control over their lives.

Why PNES Medical Cards Are a Vital Resource

For individuals living with Psychogenic Nonepileptic Seizures (PNES), carrying a medical card can provide peace of mind in various situations. Our PNES Medical Cards offer a clear, concise way to communicate your condition to others, especially in emergency settings or when you may not be able to speak for yourself. These cards provide crucial information about your diagnosis, ensuring that people around you, including healthcare professionals, know how to assist you appropriately.

The cards are the size of a standard credit card, making them easy to carry in your wallet or purse. Additionally, they are made from biodegradable plastic, aligning with eco-friendly values while serving a crucial practical purpose.

How PNES Medical Cards Can Assist in Emergency Situations

In moments of stress or confusion, having a PNES Medical Card can be lifesaving. Since PNES can mimic epileptic seizures but do not require the same medical treatment, this card helps ensure that first responders or bystanders are aware of the correct steps to take. Misunderstanding your symptoms could lead to unnecessary medical interventions or delay the right kind of assistance.

Our PNES Medical Cards can be personalised with key details such as your name, photo and emergency contacts. Whether you're at work, travelling, or even running errands, these cards ensure that your condition is clearly communicated in any scenario.

Biodegradable and Convenient: Take Control of Your Health Today

Made from biodegradable plastic, our PNES Medical Cards are not only practical but environmentally conscious. Small and discreet, they offer a simple yet effective solution to ensuring that essential information about your condition is always readily available.

Don't wait until you're in a challenging situation. Visit The Card Project UK today to order your PNES Medical Card and make sure you're prepared, wherever life takes you. Our cards are quick to personalise, easy to carry, and the perfect way to ensure your safety and wellbeing.