I take the Anti-Epileptic Drug Topiramate for my Temporal Lobe Epilepsy. I was prescribed it after trying two other epilepsy medications when I was 17. Within two weeks of being on Topiramate, I went from having multiple seizures a day to having occasional seizures. After a few months and dose adjustments, my epilepsy was considered controlled with me only having a seizure once every couple of months.
Side Effects:
Topiramate has been life changing for me, but, as with any medication, it does come with side effects., which can often be treated by talking with your doctor to adjust the medication or get put on a new medication.
However, it is important to remember that taking your medication regularly, on time and as prescribed by your doctor is essential in controlling seizures. You should never stop your medication without talking to your doctor beforehand as this could lead to a more severe seizure.
According to the Mayo Clinic, some of the side effects of Topiramate may include:
- Blurred vision
- Burning, prickling, or tingling sensations
- Clumsiness or unsteadiness
- Confusion
- Continuous, uncontrolled back-and-forth or rolling eye movements
- Dizziness
- Double vision
- Drowsiness
- Eye redness or pain
- Generalized slowing of mental and physical activity
- Increased eye pressure
- Memory problems
- Menstrual changes or pain
- Nervousness
- Speech or language problems
- Trouble in concentrating or paying attention
- Unusual tiredness or weakness
The Mayo Clinic mentions that if side effects occur, they may need medical attention and they advise people taking Topiramate to check with their doctor immediately should any of the above side effects occur.
But what does this look like in real life?
For me, the biggest thing I experienced with Topiramate is something I call ‘foggy brain’. I have noticed this since I started taking Topiramate that I have a harder time recalling facts and staying focused. It’s almost like there is a filter on everything that makes it harder to focus on things.
I take my medication twice a day, once in the morning and once right before bed. For my morning dose I have to eat something beforehand, otherwise I get very nauseous, and my body gets an odd tingling sensation, almost like my entire body has ‘pins and needles’. I am going to follow up with my doctor about the pins and needles that I feel.
One of the most common side effects of Topiramate is weight loss. Personally, this was never something I experienced. However, I find that this something that is widely discussed in epilepsy Facebook groups. Please note that while Topiramate may cause weight loss for some, it should not be used as a reason to want to take this particular epilepsy medication.
Life on medication:
My life changed when I found Topiramate. Epilepsy is unique from many other illnesses in the fact that there are many forms of epilepsy and just as many medication options. About 70% of people with Epilepsy can achieve control through medication, and I’m relieved to be one of those people, but taking medication every day can be exhausting.
If you are feeling conflicted or overwhelmed by a daily medication routine, just know that you are not alone!
What are your experiences with epilepsy medication? I’d love to know! Send me an email at [email protected].
Christine Jamieson is Miss Canada 2019, Miss British Columbia 2018/2019, and a person living with epilepsy who works for the BC Epilepsy Society as an Impact Speaker. Christine believes in impacting the world for the better and is a strong advocate for epilepsy and mental health.