5 Things You Should Know Before Switching Epilepsy Medication

Editor's Note: Always consult your doctor before making any changes to your medication or treatment plan.

Living with epilepsy means navigating the world of medication to find what works best for you and your body. I am currently slowly weaning off of phenobarbital, which I have been on for over 20 years.

It’s a barbiturate, so getting off of it will take a process. I’m trying to find the right medication to take its place.

Recently, I made the decision to switch from Briviact to Epidiolex. However, during a 30-minute consultation before receiving the Epidiolex, the pharmacist informed me of the potential liver damage resulting in liver failure or Jaundice. I decided to explore other options, including medical marijuana, in hopes of better managing my seizures and feeling normal again.

5 essential tips you should know before changing your epilepsy medication

Here are 5 things I learned from this experience that may help you if you're considering switching epilepsy medication:

Research, research, research

Before making any decisions, it's crucial to thoroughly research the new medication you're considering. Look into its mechanism of action, potential side effects, and how it interacts with other medications you may be taking.

Consult reliable sources, such as medical journals, reputable websites, and healthcare professionals, to gather as much information as possible.

Listen to your body

I never got to the transition period of Briviact and Epidiolex. However, the reason why I want to switch from Briviact is due to the side effects. It causes me to feel tired and drained all the time.

I noticed those changes in my body that didn't feel quite right. I experienced fatigue, nausea, and a general feeling of unwellness. I know my body and I'm my best advocate.

Consider alternative options

When I learned about the potential risks associated with Epidiolex, I knew I needed to explore other options. I reached out to my healthcare provider and let her know I decided against taking the medication. We are off on another hunt for a new medication. She tried to convince me to try it, but I couldn't just try it. 

The last medication I was on months ago and I'm still feeling side effects from that and I haven't been on it in months. Again, everyone is different.

Consult with your healthcare team

Switching epilepsy medication is not a decision to be taken lightly. It took me months to decide to switch from Briviact to a new medication.

It's crucial to involve your entire healthcare team in the process. This includes your neurologist, pharmacist, primary care doctor, and any other specialists involved in your care. They can provide valuable insights and guidance to help you make an informed decision.

Be patient and persistent

Finding the right epilepsy medication can be a challenging and often frustrating process. It's essential to be patient with yourself and the process. Keep track of your symptoms, side effects, and any changes you notice.

Persistence is key in finding the right medication that works for you. Keeping a journal can be helpful. Sometimes, the side effects are worse than the seizures. I personally want a medication that helps me live a normal life.

Making an informed decision

Switching epilepsy medication is a decision that should be made carefully and with the guidance of your healthcare team. Researching, listening to your body, exploring alternative options, consulting with your healthcare team, and being patient and persistent are all essential steps to take before making the switch.

Your health and well-being are paramount, so take the time to make an informed decision that is right for you.