My 5-Point Strategy to Winning the Epilepsy War

"All we have to fear is fear itself," spoken by Franklin Delano Roosevelt, America's commander-in-chief during World War II. Wise words to follow when neurologists diagnose someone with epilepsy. Their diagnoses are declarations of war, either by epilepsy for its intrusion into our lives, or our proclamation to resist it. Either way, it means war.

Epilepsy is not just 1 battle... It's a war

Practically no one pays attention to epilepsy until they're attacked for the first time. Therefore, their reactions are as stunned as Americans were when the Japanese bombed Pearl Harbor, or Osama bin Laden's 9/11 attack on the World Trade Center. "How did this every happen?" "No one I know has epilepsy so my friends will reject me!" "How long do I have to live?" "I'm frightened!"

Stop a moment. People first need to calm down, then try to relax while learning that not only are other people living fulfilling lives despite epilepsy, there are many worse things that could have afflicted us: cancer, flesh-eating disease, etc. We might have even died! After that fear can be calmed, and doing a little bit of observation, we won't have to look too far until finding someone around us who's situation is worse than our own.

1. Keeping things in perspective

One chat I saw on a Facebook epilepsy page surprised me. A person posted 3 rows of crying emojis before finally saying that 3 months after her daughter had her first focal seizure, she had her fourth. I responded that she needed to learn more about epilepsy, because there are far more wretched variants of epilepsy than focal seizures and that some people in my support group would be delighted if their seizures were coming every 4 weeks instead of the 4 or 5 tonic clonics they had every day!

People with that attitude are going to be incredibly unhappy, ashamed, irate, and stressed, which will trigger more seizures in the meantime. The tests necessary to determine where the epicenter is for someone's seizures (if it can be located at all) might be timely, and then more time's needed to decide what medications are most appropriate. Had the Greatest Generation, America's fighters of World War II, shown her attitude, the Axis Powers would have defeated us.

2. Epilepsy requires our patience

Next, General Sun Tzu wrote centuries ago, "Patience is what turns defeat into victory." America's become crippled with the instantaneous gratification credit cards provide – getting whatever we want, when we want. Another Facebook poster alleged his neurologist to be a "quack" because in the single month that he'd seen the doctor after his first seizure, the seizures were still coming!

I responded that I've been on over 20 medications, juggling dosages and combinations for over half a century, and it wasn't until 2021 that I exceeded 6 weeks without a seizure! 56 years. (I'm now praying for my first seizure-free year this spring!)

I'm in love with that medication, Xcopri, but a half-year was needed to rid my system of the former medication before cautiously building this one up to a level that might show improvements. Many people need years to recover from brain surgeries so that they function without people realizing they have epilepsy. And that man was outraged about 1 month!

3. Educating ourselves about our epilepsy

Third, "Know your enemy," were Sun Tzu's words. Military intelligence. Educate yourself about epilepsy.

Readers might find this absurd for me to say, but I think there is "too much" information available online when patients are just getting started. People will be suffocated – and frightened – by the deluge of reports, studies, and other information if they haven't yet gotten a clear recognition of their personal condition.

There are over 30 variations of epilepsy seizures.¹

No 2 people's cases are identical either because their epilepsy started for different reasons, at different ages, their metabolisms are different, there are additional ailments they're taking medication for, and a mountain of individual triggers. Medications that work for one can be useless to another, or need to be given in different dosages.

Identifying seizure triggers as the enemy

While growing up in the 1960s, stress was the only trigger my neurologist suggested. Over the years, I've learned of a number of things to avoid. (I actually met a person whose tonic-clonic seizures can be triggered by her own singing!)

Only after people start learning the specifics of their variation and identifying their triggers can they make a systematic search for valuable information that's available online without being overwhelmed and futilely spinning their wheels.

Asking the doctor questions

Don't rely on your doctor to make decisions for you. People complain that their doctors just breeze into their rooms, sit on a stool to review their latest notes, then whip out a prescription pad with another medication and race out the door. They are customers, and customers ask questions.

Ask the doctor what tests he plans to make and explain why. Why is she prescribing a new medication, and what are its strengths – and weaknesses? Can it be teamed with another medication if the prescription doesn't work as expected? People have to be their own intelligence agents, or spies.

4. Battling epilepsy with medications and surgeries

Fourth, battles are fought with different kinds of weapons with different purposes at the same time. Likewise, medications are tried in different amounts and combinations. Surgery might not be a solitary weapon for controlling a person's seizures and medication is still required.

Quite possibly, medication might be the primary cannon used in the attack on epilepsy to cut the number of seizures, but the attack's in conjunction with a Vagus nerve stimulator (VNS) or responsive neurostimulation (RNS) implants that act like infantry troops to lessen the severity of the seizures.

5. The real battle happens in everyday life

Finally, military experts are unanimous that wars are not won by the generals strategizing the battles, but by the sergeants — "grunts" — fighting in the dirt and cold, with bullets and bombs whizzing past them.

Likewise, epileptologists don't fight our wars for us, they only design strategies. It is up to us "grunts" to go through the daily grind of taking our medicines on time, responsibly avoiding known triggers, continuously being on alert for new triggers, and establishing the best relaxing and supportive lifestyles possible.

Leading yourself to victory

If you believe an epileptologist has not lived up to your expectations within a reasonable amount of time, "fire" them. Try another. Abraham Lincoln did that when he thought Gen. McClellan wasn't aggressive enough, and Harry Truman fired Gen. MacArthur when his orders were being ignored.

Follow my strategy in the "Epilepsy war," and you'll bask in the words French Prime Minister Georges Clemenceau said after World War I: "War is a series of catastrophes that result in victory."