Carrie’s Story
My story is unique like anyone else’s with this disease. I suffered in silence for years with what Doctors thought were onsets to migraines. These onsets were fainting spells which a migraine would immediately follow. These onsets began at the age of 11 right up until my early 30’s. They stopped during the times I was pregnant and in between my pregnancies. The onsets returned, when our son was 3 years old. This time the onsets were different. I didn’t faint. I was awake through the entire episode. Once I had a few of them which occurred monthly, I realized that I would just roll with them when they did happen, because nothing would happen to me when they passed. They would last for about 30 seconds to a minute. I started recording the episodes in my planners and I noticed a pattern. They were happening a week from when my menstrual cycle was to start.
That was until August 8, 2021 when I had a grand mal seizure. I was taken to the hospital by ambulance where I was examined and my drivers licence was suspended for the time being until I could be examined by an Neurologist. Once I saw the specialist, we discovered that the type of Epilepsy I had was Catamenial Epilepsy. This type of Epilepsy occurs during certain times of the menstrual cycle. Basically, menstrual seizures. Because I recorded when I was having my episodes, we matched it to my cycles and that my symptoms were symptoms of partial seizures.
He ordered an EEG and a MRI to make sure that there was nothing else causing them. The results of the EEG were normal and the MRI showed that I have Mesial Temporal Sclerosis and in combination with his first diagnosis he concluded that I have my partial seizures around the fluctuations of my cycles. We are not sure why I have the sclerosis on my brain…because that is generally caused from a Febrile Seizure in infancy. Both of my parents confirmed that to their knowledge I never suffered with one of them. So, that part leaves us with questions.
I am currently on medication to help with them and I got my licence back 8 months after the grand mal. To this day, I am still suffering with the partial seizures. Some months they are not that bad and some months I feel like I ran a marathon after they pass. Thankfully I haven’t had a grand mal since. I am no longer suffering in silence. It helps that I have a great support system. I think that anyone that is dealing with this disease needs just that. A support system.
I am glad that there is awareness happening for this disease. The more, people are aware of it, the more they will be able to understand and help those who are suffering with this disease.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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