My Close Call with Epilepsy

This topic resonates deeply with me. 10 years ago I was diagnosed with Grand Mal Epilepsy. Roughly six years ago, I had a near-death experience because of it. This is my story that I’d like to share with you.

May 24th, 2018. A particularly harrowing day for me. That day, I went through three Grand Mal seizures, each more terrifying than the last. By the third one, I was gasping for air, my body went limp, and I was completely unconsciousness. Thankfully, a loved one (my now husband) found me in time, knew about my condition, and took the right steps to prevent a worse outcome. I might not remember that day, but its impact lingers.

Here’s an account of a day that remains vivid in my memory, a day when I came perilously close to the edge.

That morning, I was engulfed by an overwhelming heat, as if a wave of warmth had enveloped me, particularly concentrating on my face. Almost immediately, an intense bout of anxiety gripped me, manifesting as a unique blend of pressure and pain in my chest, unlike anything I’d felt before. The sensation was so overpowering that I felt nauseous. I wanted to cry.

My then boyfriend, swiftly carried me to the bathroom, providing a bucket in case I needed to vomit. The bathroom seemed like the right place to be, especially as I could sense an impending loss of bladder control. As I began to retch violently, my boyfriend stepped away for a brief moment to fetch me water from the kitchen. But the sound of the bucket clattering to the floor alerted him that something wasn’t right.

Rushing back, he discovered me in the throes of a seizure, I had fallen off the toilet and I was trapped between the bathroom sink and the bathtub. Each convulsion caused my head to strike the tiles with alarming force. With no time to waste, he swiftly repositioned me, attempting to bring me ‘right’, calling out to me, but nothing. No response. I was deaf to my name, I couldn’t talk. And my vision to the world around me had completely vanished.

My gaze was vacant, as if I was peering through him rather than at him.

The incident was deeply unsettling for my (now) husband. When my breathing stopped, he tried calling out to our neighbours for help, but no one seemed to hear.

As my complexion shifted to a worrying shade of blue, he resorted to CPR and a technique that had previously been effective: shock treatment.

In past instances when I felt the onset of a seizure, we’d use cold compresses, like ice packs or frozen peas, pressing them firmly against my back. The aim was to jolt my body out of its seizing state by diverting its attention to the cold sensation. While this method had often been successful, on that day, it failed to bring the desired relief.

Recognising the urgency, he quickly took me to Olivedale Clinic. There, due to the frequency of the seizures and the strain on my heart, the decision was made to sedate me. To ensure I received the best care possible, I was later moved to Fourways Life Hospital, where I spent a few days in the ICU for observation and recovery.

Some might find it hard to grasp, but a near-death experience can profoundly change you. I don’t often talk about it because it’s hard for many to understand, but during the time of my sedation at Olivedale Clinic, I had an outer-body experience. From above, I watched myself, motionless in the emergency room, surrounded by medical staff. Everything felt serene and unhurried.

In that moment, I thought this was it. I was being given the choice: surrender to Epilepsy or muster the strength to fight. I chose to fight, and I came back with renewed determination.

To this day, there’s still a 12-hour gap in my memory. It’s like a blank chapter in my life’s book. A void of vivid details or colours.

The last clear memory I have is feeling sick and how the anxiety gripped me. That feeling, that sensation, will never leave me. Beyond that, aside from that surreal outer-body experience, everything else is still a haze.

To this day, I thank my lucky stars for my husband. With the knowledge he had about my condition, he was able to save my life. He is and forever will be, my Ironman.

I’d now like to take a moment to share a bit more knowledge with you about the condition and how you can manage it.

 

Understanding EpilepsyΒ 

Epilepsy is a neurological disorder where the brain experiences abnormal electrical activity. This imbalance can cause the brain to react differently to stimuli like lights.

Seizures are sudden episodes, often characterised by uncontrollable shaking, where the individual loses control over their body.

Causes of Epilepsy:

  • Genetic predisposition
  • Head injuries
  • Changes in the brain’s chemical balance

Who can be affected by Epilepsy?

Anyone, irrespective of age, ethnicity, or gender. It can be hereditary or result from trauma.

Seizures by Age Group:

  • Newborns: Brain malformations, maternal drug use, birth-related oxygen deprivation, blood sugar or calcium imbalances.
  • Infants & Children: Infections, fever, brain tremors.
  • Children & Adults: Conditions like Down’s Syndrome, head trauma, rare brain diseases, genetic factors.
  • Elderly: Physical/emotional trauma, stroke, Alzheimer’s disease.

Experiencing a Seizure: Symptoms vary: hot flushes, nausea, disorientation, vomiting, vision loss, confusion, jerking movements, emotional symptoms like anxiety, and more.

Supporting Someone During a Seizure:

  1. Create a calm environment.
  2. Stay informed about their specific type of epilepsy.
  3. Stay calm and breathe.
  4. Reassure them gently.
  5. Practice a “test run” scenario.
  6. Lay them on their side with a soft object under their head.
  7. Ensure their airway is clear.
  8. Don’t put anything in their mouth.
  9. Avoid sudden temperature changes.
  10. Offer water post-seizure.
  11. Seek emergency care if the seizure doesn’t stop.

Understanding the Recovery Process and Post-Seizure Feelings:

After a seizure, the recovery process can vary from person to person. Some may recover immediately, while others might take hours or even days to feel like themselves again. This period after the seizure is often referred to as the “postictal” state.

How Epileptics Feel After a Seizure:

  1. Confusion and Disorientation: It’s common for someone to be confused or disoriented after a seizure. They might not remember what happened or where they are.
  2. Fatigue: Feeling extremely tired is common after a seizure. Some people might want to sleep for several hours.
  3. Headache: Some people experience headaches after a seizure.
  4. Muscle Aches: The intense muscle contractions during a seizure can leave a person feeling sore afterward.
  5. Mood Changes: It’s not uncommon for someone to experience mood changes, like feeling depressed, anxious, or irritable after a seizure.

What to Do After Someone Has a Seizure:

  1. Stay Calm: Your calmness can help the person recovering feel more at ease.
  2. Ensure Safety: Make sure the person is in a safe place, away from any potential dangers.
  3. Comfort and Reassure: The person might be confused or scared. Comfort them and let them know they’re safe.
  4. Allow Rest: If the person is tired and wants to sleep, let them. Ensure they’re in a safe position, preferably on their side.
  5. Stay With Them: Until they’re fully recovered, it’s a good idea to stay with the person and offer support.

What Not to Do After Someone Has a Seizure:

  1. Don’t Offer Food or Drink Right Away: Wait until the person is fully alert.
  2. Avoid Bombarding with Questions: They might be confused and not remember the seizure. Give them time.
  3. Don’t Restrain: If they’re moving around, ensure their safety but avoid restraining them.

Remember, every individual’s experience with epilepsy is unique. It’s essential to communicate and understand the specific needs and preferences of the person with epilepsy in your life.

Empower Yourself with Knowledge:

For those who are caregivers, au pairs, parents, nannies, or simply individuals who want to be better prepared in emergency situations, we offer an online emergency course that covers epilepsy among other crucial topics. Equip yourself with the knowledge and skills to handle situations with confidence and care. By understanding epilepsy better, you can make a significant difference in someone’s life during a critical moment

 

πŸ’œ A Personal Note ✨

If you’re grappling with the challenges of epilepsy and feel isolated or in need of a listening ear, please don’t hesitate to reach out to me. I’m here to listen to your story, and if you’re interested, share more of my own journey. Remember, you’re not alone in this, and sometimes, just talking can make a world of difference.

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