Management tools
When I set out to create this website, I knew I had to include the strategies I’ve picked up over the years from different people, places, and programs that have helped me get through each day with epilepsy.
Nothing can truly prepare you for what living with this illness is like—there’s no guidebook or ‘how-to’ manual. But it’s my hope that by sharing what I’ve learned, and the strategies I have employed to help me throughout the years, that maybe it can help you too.
anything that can prevent a seizure, can also cause a seizure
Any medications, treatments, or lifestyle changes that keep the brain calm and balanced can be effective tools in helping to prevent seizures, but everyone’s brain reacts differently. So even something that works most of the time could, in rare cases, cause an imbalance and lead to a seizure.
It’s all about how each person’s individual brain responds to changes.
So it’s important to
dedicate a notebook just to write about your seizures and everything seizure related.
Date and Time: Record when the seizure occurred to identify patterns.
Type of Seizure: If possible, describe the type (e.g., focal, generalized, absence, tonic-clonic) or what it felt like.
Duration: How long the seizure lasted, from start to finish.
Triggers: Note any potential triggers before the seizure, such as lack of sleep, stress, flashing lights, missed medication, or specific foods.
Pre-Seizure Symptoms (Auras): Record any warning signs or auras (like a strange smell, feeling, or visual disturbances) that happened before the seizure.
What Happened During the Seizure: Describe any physical movements, changes in consciousness, or behaviors during the seizure.
Post-Seizure Recovery: Note how long it took to recover and any post-seizure effects (e.g., confusion, headache, fatigue).
Medication Status: Whether you had taken your medications as prescribed or if there were any recent changes to your medication regimen.
Sleep Patterns: Any changes or disruptions in your sleep leading up to the seizure.
Other Factors: Include details about hydration, diet, illness, or hormonal changes that could have played a role.
Take notes and
keep a record
adjust your mindset
Most of us grow up with a straightforward idea of healthcare: when we feel ill, we visit the doctor, receive a diagnosis, and take prescribed medication to get better.
However, to live well with epilepsy defies a conventional approach.
Epilepsy is both mind and body, so management requires a more nuanced understanding and a multifaceted treatment strategy.
We need to rethink how we manage and respond to health issues, and recognize that some conditions require more than just medication—they require a comprehensive and considerate approach to both physical and mental wellbeing.
the key to living with an invisible And unpredictable illness is acceptance
The hardest part of living with an invisible, unpredictable illness like epilepsy is learning not to get too comfortable with how you feel in any given moment. One day, your body might feel strong and stable, and the next, you’re knocked down by a seizure or a side effect you didn’t see coming.
The key is to remind yourself that this is the reality of the illness—things will always change, and you can’t cling to the good or the bad too tightly. It’s all about rolling with the unpredictability, even when it feels impossible.
recomended reading
I dealt with intense mental and physical health challenges early on in my life, all of them invisible, and I found myself struggling to find a way to make sense of what I was facing,
Luckily for me I got into recovery when I was a teenager, so I credit my 12 Step Program of recovery for the incredible foundation and tools for living I use every day, but I have also found tremendous meaning in a couple of books I want to share with you here.
In these books I found a compassionate, honest approach to navigating life's toughest challenges. Living with epilepsy or other unpredictable illnesses, the teachings in these books encourage embracing uncertainty, letting go of control, and finding peace in the middle of chaos. I learned how to stay grounded in difficult moments and to accept the impermanence of life, which has been incredibly empowering for me, and perhaps it can help you too.
