Ask the Advocates: Your Epilepsy Treatment Journey
Last updated: September 2022
Treating epilepsy is not an exact science. For each individual patient, what works and what doesn't work will vary. An anti-seizure drug that works for one person may not work for another. And navigating the side effects of these medicines can become a complicated journey all its own – 1 of weighing options and making difficult decisions.
The goal? Seizure freedom. For some, this may be harder to reach than others. And even when it is, it can be gone at a moment's notice.
For someone with epilepsy, the questions and challenges faced in a treatment journey can be long, hard, and confusing. So we asked our EpilepsyDisease.com advocates: "What has your epilepsy treatment journey been like? Has your treatment changed over time? What has impacted it?"
Tell us about your epilepsy treatment journey
"My treatment definitely changed over time. When I first started having seizures it was a lot of trial and error. I was put on medications with horrible side effects as a child. Even as a child, I was vocal about how it made me feel, so my doctor would have to find another combination. Then when I was in my teens to early 20s my doctor found the right combination. But I still had breakthrough seizures from time to time. I realize stress, anxiety, and sugar (I love sugar) can really trigger my body negatively. I definitely pay attention to my body and how I feel at all times." –Derra
"My treatment journey over the 6 years between diagnosis and surgery was a little rocky, like I'm sure most patients can say. I started with a temporal lobe epilepsy (TLE) diagnosis and medication that made me moody. That transitioned to a different dose and another medication that calmed my mood, but video EEG put the TLE diagnosis in doubt and suggested seizures were coming from the frontal lobe. After 1 awful seizure, I moved home to Minnesota and met a new doctor who put me on a new med and started an evaluation for surgery. Brain mapping showed the seizures were indeed starting in my temporal lobe and quickly spreading to my frontal lobe. Surgery was successful and now I take a high dose of medication to (hopefully) keep the seizures from forming again." –Stacia
"I am of the one-third of patients who do not respond to medication. No one knows where my specific epilepsy comes from. The journey has been very hard, but it’s been aided by seeing specialists who are more willing to believe my story. Learning to practice self-care (knowing your limits, eating quality food on time, getting good sleep, not missing medication) makes a world of difference. If medication works for you, that's wonderful, but respecting your body is more than half the battle. You have to do your very best to set yourself up for success" –Miles
"I hated my epilepsy treatment journey. It was a disaster. The amount of medication tested on me was countless. There was 1 medication that caused me to urinate in my sleep. I was unable to go to the toilet because I couldn't sense it. Then we changed to another medicine, which caused 3 episodes of seizures. So I was admitted to the hospital again to change my medicine. Another time, I kept falling while I was walking, and I got really badly injured after falling from a staircase. After many times of changing my medicine, finally, something suits my body. At first, I had to take it 3 times a day which made me so sleepy. As time went by my doctor was able to reduce it from 2 times a day then to 1 time a day. I have also learned to reduce my stress and be calm in any situation." –Nisshaa
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Do you have epilepsy? Or are you caring for someone with epilepsy?
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