Treating Epilepsy: Risks, Side Effects, But Still No Cure

Living with epilepsy can be unpredictable and challenging. When I've explained my medical journey to those who ask – when speaking about my medication or viewing my surgery scars – sometimes they ask if there is a cure for epilepsy.

But as all of us living with it know – there is no cure. Just treatment.

First line of treatment for epilepsy: medication

Medication is the initial treatment, but it can be confusing. There are different types of epilepsy, and the treatment path for each individual will be different, too.

There are so many different kinds of medication – different categories of meds, plus different brand names. And each has its own set of potential side effects, too.

Staying on schedule with our treatment

As someone diagnosed with epilepsy as a baby, my first anti-seizure medication was Tegretol (carbamazepine). I remember taking it as a candy-tasting syrup and a bubble gum flavored tablet. As years progressed, the amount changed, but my medication schedule didn't – I needed to take it every day to keep seizures at bay.

Epilepsy can be managed with the help of medication, but sticking to a medication schedule is essential. So while there is still no cure for epilepsy, proper management can help reduce symptoms.

Medication side effects can be no fun

Many of us living with epilepsy will also have to try multiple medications. When questionable side effects would come up – ones we can't live with – we'd have to try a new medication instead. The answer isn't always the first, second, or even third medication we try.

But there are some side effects that may arise that we may just have to live with. These might include changes in mood, memory loss, speech difficulties, or impaired vision. For me, my memory tends to be unreliable. I'll often forget something or am uncertain about it, causing me stress when I must ask for clarification.

Sometimes surgery is a treatment option

With my diagnosis at such a young age, surgery was an early (and lifesaving) option offered to me as part of my treatment plan. Gernally, doctors will consider epilepsy surgery for a patient if they've tried multiple medications and none of them are helping get rid of seizures.

I faced a challenging surgery when I was younger – the implantation of a VP shunt. A VP shunt is a small plastic tube that helps drain extra cerebrospinal fluid from the brain. While this came with new precautions I had to take, primarily as a growing teenager and woman, it ultimately provided relief. It allowed me to live 4 years free of seizures, along with my medication.

As I aged, stress became a new challenge, and unfortunately, seizures returned. However, I remain inspired by my progress and the potential for continued improvement.

The decision to get surgery if a big one

But surgery, of course, is not a decision to take lightly. Patients undergo extensive pre-surgery testing and must understand the potential for life-changing effects. We have to ask, "What's the risk? Are there side effects? Is the aftermath permanent?"

Having the support and guidance of qualified professionals, like surgeons, anesthesiologists, neurologists, technologists, neuropsychologists, and psychiatrists, is crucial.

I am so grateful for the love, care, and evolutionary understanding of children's epilepsy I received as a child. The SickKids Hospital in Canada ultimately saved my life, and will forever be close to my heart, especially the doctors who always had a plan and solution.

Epilepsy treatments have risks

Here's the reality we have to accept: that each possible treatment may work, but it will also come with distinct risks. So we have to be informed and weigh our options.

Yes, that is where we're at with epilepsy treatment. The are pieces to the puzzle we're still trying to find. But until we get to that cure – we try to be content with where we have gotten.