More Than Our Story

Navigating Life With Epilepsy

Table of Contents

As someone living with brain cancer and epilepsy, the possibility of having a seizure at any moment has become a very real part of my reality, and one shared by millions of individuals around the world. Just last night, I had an aura – a precursor to a seizure – in a crowded movie theater and had to leave in a rush. Thankfully, due to my medication it never progressed beyond the aural stage into a seizure.

Whether you’re navigating this journey personally or supporting a loved one, the physical, emotional and social toll it takes can be overwhelming. Be it managing medications or your own expectations, each day brings its own set of obstacles requiring resilience, understanding and support. This post sheds light on the reality of navigating life with seizures through investigating the toll it can take and exploring coping mechanisms and pathways to empower yourself.

Seizures Versus Epilepsy

Seizures

Seizures are characterized as sudden, uncontrolled electrical disturbances in the brain and can vary widely in severity and frequency. Seizures affect people of all genders, races, ethnicity and ages. Causes of seizures can include brain injury, infection or tumors, stroke, drug or alcohol abuse or withdrawl, poisoning, heart disease and heat illness among many others – sometimes no cause can be found, called idiopathic seizures.

Epilepsy

Epilepsy is a disorder of the brain characterized by repeated seizures. There are many types of epilepsy. In some people the cause can be identified, including an imbalance of chemicals called neurotransmitters, tumors, strokes, and brain damage from illness or injury, or some combination of these. In the majority of cases, there may be no detectable cause for epilepsy. It’s estimated that around 1% of people in North America have active epilepsy. Having a single seizure doesn’t mean you have epilepsy. Epilepsy is diagnosed if you’ve had at least two unprovoked seizures at least 24 hours apart.

The Physical & Emotional Toll

The Physical Impact

Seizures come in various forms, from subtle moments of confusion to full-on convulsive episodes. The physical toll they take can be exhausting. Loss of consciousness, fatigue, muscle soreness, and confusion are common, often requiring time to recover and regain composure. Injuries from falls are another concern. For those with frequent seizures, the disruption to daily activities can be significant, affecting work, education, and personal relationships.

Emotional Toll

Not everyone experiences auras – or warning signs – before a seizure strikes, leaving them vulnerable to sudden attacks at any moment. Fear and anxiety about when the next seizure will occur, frustration at the loss of control, and sadness or anger over the limitations they impose are all common experiences. Further still, people who surfer from seizures often feel anxious, depressed and socially isolated, taking a toll on their mental health. 

Seizures Facts

  • Seizures can lead to injuries and accidents, such as falls, broken bones and head trauma.
  • Seizure medications can affect thinking, mood, bone health, or other body systems.
  • A brain tumor might cause a seizure or epilepsy, which means having repeated seizures.
  • Epilepsy is diagnosed if you’ve had at least two unprovoked seizures at least 24 hours apart.

Be Proactive

Just because you’re navigating life with epilepsy, doesn’t mean you don’t have your hands on the steering wheel – quite the opposite – like any good pilot, being prepared can help you brave the storms with courage and strength.

Establish A Routine

One of the most unsettling characteristics of seizures is their unpredictability, occuring at any moment without warning, disrupting daily routines, activities, and responsibilities. One of the most important aspects of coping with seizures is establishing a stable routine. Consistency in daily activities, such as meal times, sleep schedules, and medication routines, can help minimize stress and reduce the risk of triggering seizures. A structured environment provides a sense of stability and predictability in an otherwise unpredictable situation.

Self-Care

Self-care is essential for everyone, but especially for those living with seizures. Paying attention to your overall health can go a long way to reducing seizure activity. Make sure to prioritize adequate sleep, maintain a healthy diet with proper nutrition and exercise regularly. I can attest to this last one; I exercise daily and it goes a long way towards maintaining my mood, reducing my stress levels and ensuring I sleep and eat well. Try practicing mindfulness and meditation, yoga, or deep-breathing exercises as part of a stress-reduction regime, and take your prescribed medication consistently. These self-care practices should maintain your physical and mental well-being and help reduce the frequency and severity of seizures

Create An Action Plan

Seizure Action Plans (also called seizure response plans) are forms that you can personalize about what to do if you or a loved one has a seizure. Carry with you at all times and make sure key family members or friends have one. Bring it with you when traveling and educate others on it so they will know what to do if you have a seizure. Things to include on your seizure action plan include the latest information about:
  • Your type of seizures and what they look like
  • Any triggers
  • Your daily medication schedule, including names, frequency and dosage
  • Any medicines you take when about to have, or after having a seizure.
  • What to do when you’re having a seizure, including when to call for emergency help
Creating and having this plan will help reduce your anxiety and stress about having a seizure while outside your living area, and help inform your friends and family about how to handle to situation.

Prepare Your Living Area

Small changes to your home environment can greatly reduce the risk of injury, especially if you live alone and have epilepsy. “Fall-proof” your living space by placing padding on sharp corners, getting rid of any tripping hazards and using non-slip carpets. For your bathroom, consider installing grab bars, non-slip bathmats and a chair in the shower, and taking only showers, not baths. Keep doors unlocked so people can reach you and give a neighbor a key and block off potential hazards like fireplaces or pools where you may fall in. By making a few small changes to your living area you can make a huge difference in reducing your risk of injury and ensuring people can reach you in case of an emergency.

Know Your Triggers

Seizures can often be triggered by the same activity or experience. Learning your triggers can help reduce your chance of experiencing otherwise avoidable seizures – something extremely valuable for those who live alone. 

Triggers can include:

  • Stress
  • Drug and alcohol use
  • Lack of sleep
  • Time of day
  • Low blood sugar

Build A Strong Support Network

Living with seizures is not a journey that anyone should face alone. Surround yourself with people who understand your journey and are willing to offer you their support and empathy. Building a strong support network of family, friends, healthcare professionals, caregivers and support groups is and invaluable safety net of assistance and encouragement. Connecting with others who share similar journeys can provide a sense of community, validation and empowerment. Take advantage of the numerous resources available to you: Epilepsy foundations, online communities, and advocacy organizations. These resources can empower individuals to take back control and agency over their own lives.

Education & Advocate

Social interactions can become difficult when living with seizures. Misconceptions and misunderstandings about seizures and epilepsy are commonplace and can to discrimination and alienation. Educating yourself about seizures will help you better understand your condition and advocate for your needs. Similarly, friends, family, and colleagues may not know how to react or offer support. Educating others is crucial in empowering others to be more compassionate and supportive and can help reduce stigma and foster understanding and empathy. 

Seek Professional Help

Find Your Treatment Plan

Treatment for seizures and epilepsy typically involves medication to manage and reduce seizure activity. Finding the right combination of medications requires patience and persistence, as sticking to medication schedules can be difficult – especially for me due to my short-term memory issues – and managing side effects can be challenging, but is crucial for taking control over the chaos.

Treat Yourself

If you’re struggling with your treatment plan talk to your healthcare professional, such as a neurologist or epilepsy specialist. They can offer guidance on treatment options, medications, and coping strategies. Therapy or counselling can also be beneficial for addressing any emotional or psychological challenges you may be facing.

Find Your Happiness

Living with epilepsy can be challenging, but it’s important to find happiness in your life. Whether it’s spending time with friends and family, exercising or your favorite hobby, finding these moments of happiness will uplift your spirits and provide a sense of purpose and fulfillment.

Conclusion

Living with epilepsy is challenging and requires resilience, strength, and support. By educating yourself and others, prioritizing self-care, building a support network, and finding moments of joy and meaning in everyday life, you can foster awareness, understanding, and empathy and empower yourself to navigate life with seizures with courage and dignity.

Seizure: How To Spot One & What To Do

A seizure is the physical changes in behavior that occurs during an episode of abnormal electrical activity in the brain. During seizures a person has uncontrollable shaking that is rapid and rhythmic, with the muscles contracting and relaxing repeatedly. There are many different types of seizures – some people experience mild symptoms without any shaking – and can happen for many reasons. So, what are the signs that someone is having a seizure, and what can you do, and no do to help?

Signs Someone Is Having A Seizure
It may be hard to tell if someone is having a seizure. Symptoms occur suddenly and stop after a few seconds or minutes, or may continue for up to 15 minutes. Signs someone is having a seizure may include:
  • Brief blackout followed by a period of confusion
  • Changes in behavior, such as picking at one’s clothing
  • Drooling or frothing at the mouth
  • Eye movements
  • runting and snorting
  • Loss of bladder or bowel control
  • Mood changes, sudden anger, inexplicable fear, panic or joy
  • Shaking of the entire body
  • Sudden falling
  • Tasting a bitter or metallic flavor
  • Teeth clenching
  • Temporary stop in breathing
  • Uncontrollable muscle spasms with twitching and jerking limbs
What Can I Do?
The main goal when a seizure is occurring is to protect the person from injury:
  • Try to prevent a fall
  • Lay the person on the ground in a safe area
  • Cushion the person’s head
  • Loosen tight clothing, especially around the neck
  • Turn the person on their side
  • Look for a medical ID bracelet with seizure instructions
  • Stay with the person until they recover or professional medical help arrives
What Should I Not Do?
  • DO NOT restrain the person
  • DO NOT place anything in their mouth
  • DO NOT attempt to hold the person’s tongue
  • DO NOT move the person unless they are in danger
  • DO NOT try to wake the person up
  • DO NOT give the person anything orally until seizure activity has stopped and the person is awake and alert.
When To Call 911
  • This is the first seizure the person has had or you’re not sure
  • A seizure lasts more than 2 minutes
  • Another seizure starts soon after a seizure ends
  • The person does not wake up or is acting strangely afterwards
  • This seizure is different compared to their usual ones

Seizures Phases

Seizures phases include the aural stage, the ictal stage, and the postictal stage.

Aural Phase
The first stage of a seizure, also known as the pre-ictal phase. This stage may or may not occur immediately prior to the ictal stage of a seizure and can last anywhere from a few seconds to an hour. People who have pre-seizure auras are aware of their symptoms and experience the same type of aura every time, which can include fatigue, visual changes, detachment from reality, altered perceptions, hallucinations, distorted taste, unusual sounds, tingling sensations or muscle twitches.

Ictal Phase This is the most visibly apparent phase of a seizure. The person may experience alterations in consciousness and/or involuntary, repetitive movements or sounds (automatisms), typically lasting between a few seconds and a few minutes. The person may or may not be aware of their symptoms or surroundings.

Postictal Phase The postictal phase of a seizure happens after the ictal phase and is accompanied by varied symptoms. The person may or may not be conscious and often feels exhausted, confused, weak or unarousable.

RELATED ARTICLE:
Embracing Life With Cancer

SOURCES

Picture of Daniel

Daniel

Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit. Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.

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