The Twelve Hour Cycle

It's 7:00 a.m., and my medication alarm goes off. I get up and walk over to my locked medicine cabinet, taking my lamotrigine and vitamins. Then I go about my day.

Twelve hours later, my 7:00 p.m. alarm goes off. I walk back to my medicine cabinet, unlock it, and take my evening lamotrigine. Then I go about my evening. Twelve hours later, I repeat this cycle.

Navigating the seizure management cycle

Some days, as I look at my alarm, I'm grateful to be seizure-free. Other days, as I'm about to take my medication, I think about how this is the unending cycle of my life. My medication can be dispersed in 90 doses, but there's no expectation of stopping it.

If I think about this for too long, I feel a sense of powerlessness. It's not quite hopeless, but it's a defeated feeling.

While many medical advances have been made toward curing other diseases and disorders, the progress with seizure disorders is symptomatic. Medications help prevent seizures but do not cure them. Some outgrow seizures, but replicating this into a mass cure remains elusive.

Certain medical implantations and surgeries can stop seizures for some. However, individuals like me find themselves setting medication alarms and dutifully taking their medication to remain seizure-free.

The reality of ongoing treatment

We undergo tests like MRIs, CTs, EEGs, or whatever our provider prescribes to adjust or maintain our treatment plans. However, nowhere in my treatment plan have I ever been told to expect a cure.

When will there be a change? Will I be on the 12-hour schedule for the rest of my life? Does this tunnel have a light at the end of it?

When I spiral into this place of despair, I focus on all the benefits this medication has given me. My life has changed for the better because I am on a medication with limited side effects, affordability, accessibility, and safety. This allows me to live a life without the fear of having a breakthrough seizure.

Holding on to hope

There are many things to be grateful for when it comes to the power of modern medicine and the positive changes it has brought to my life and many others. Still, I wish and pray that one day, a researcher will have a "eureka moment," providing an opportunity for a cure or at least a way to prevent sudden death.

I've previously written about how the unknown cause of sudden death in some with epilepsy can be debilitating knowledge. I know I'm not the only one. I pray for a day when this weight will no longer burden my and others' shoulders, understanding why it happens and preventing such horrors from occurring to anyone suffering from a seizure disorder.

I pray for the existence of a light at the end of the tunnel, and I hope it arrives soon so that more people can not only have their symptoms stopped but the reasons for their seizures cured. Until that day, I will continue to wait for my alarm to go off, walk over and unlock my medicine cabinet, and take my lamotrigine.

Always remember, you are not alone.