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Epilepsy, Health

Finding confidence with epilepsy in Facebook support groups

Having experienced seizures for years after turning 21 years old, I have found more confidence in myself and learned more about epilepsy after joining epilepsy awareness and support groups on Facebook.

I first began having petit mal seizures when I was 21. While brushing my teeth in the morning my arm would suddenly jut out, or my legs would momentarily give out beneath me while standing or walking. At this point in time in my life I had never experienced seizures or even knew what a seizure was. I also had never had health problems whatsoever.

While the sudden seizures were alarming to me, I did not report the abnormal physical behavior to my parents and instead convinced myself the behavior would go away. I had never been close to anyone with a physical disability and was unfamiliar with the importance of seeking help and communicating, as obvious as it may sound. I also had a difficult time accepting that I had a problem, considering I viewed myself as a perfectly healthy young independent woman.

Grand mal seizure

Soon the seizures progressed and I experienced a grand mal seizure where I collapsed and had convulsions while walking to my university on the first day of school. By this time I was 22 years old. I woke up in the emergency room at a nearby hospital and learned I had been taken there in an ambulance. The doctors gave me paperwork that explained I had a seizure and recommended that I see a neurologist. Even then, I still did not see a doctor after convincing myself the grand mal seizure may have been a one time freak accident. I also did not seek help from any health-oriented community.

Unfortunately, a year and a half later I had another grand mal seizure while walking and yet again woke up in a hospital. By this time I knew I had to see a doctor. I was diagnosed with epilepsy at 25 years old and began taking medication that, thankfully, controlled the seizures. I assumed life would go back to normal.

Despite being seizure-free, I did not give any thought to mental health and the nurses at my doctor’s office mentioned nothing about it. As time went on,  I began having a constant feeling of uneasiness and prickly sensations in my legs which I came to determine was a form of anxiety. I also had a few subtle panic attacks where I was in a sudden flight-or-fight mode in a few different stores.

My stubbornness set in again and I assumed the feelings were my personal problem. I thought I was getting over the worry of having seizures and was adapting, and that the sensations would go away. However, the anxiety persisted to the point of even developing a subtle fear of driving. Finally I decided to take a more pro-active approach to what was going on in my life. I searched for epilepsy support groups on Facebook and joined a couple. I began sharing my experience with seizures and the issues I’ve had since being seizure-free.


It was such a relief when people responded that they’ve experienced similar and know how I feel. They offered words of encouragement, which was something I had never heard before. Of course my family would encourage me to get better, but up until that point I had always been around people who had no idea what I was going through. My dad would say, “It’s very strange and scary,” and that was it, not exactly the most comforting words to hear.

The people in the group also pointed out that the mental issues I am having may be due to the medication I am taking, which had never crossed my mind before. I took a closer look at my medication’s side effects and anxiety and mood swings happened to be the first listed effects.

Before I go further, I do recommend seeing a doctor before addressing side effects, though it is helpful to learn from others what their doctors recommended. Someone in the group mentioned that Vitamin B can challenge the side effects of my medication. I thought back to my original prescription which was a combination of Keppra and Vitamin B12. I had stopped taking the B12 because I had read that it is a basic supplement for women of childbearing age and did not think it was necessary to take. I went to the pharmacy the next day and bought B12 which so far seems to be helping with anxiety, though I am planning to see a doctor soon.

I later even found a Facebook group specifically for the medication I was taking! I joined the group and found many great discussions about the medication and how people are coping with life and addressing side effects. It has been reassuring for me to connect with others in the group.

Being in Facebook epilepsy support groups has been great to help me feel less alone, connect with others and learn more about the illness. I’ve learned there are people who have had it much worse than me. There are mothers trying to care for their babies who were diagnosed with epilepsy a few weeks after birth. There are people who cannot drive and have seizures multiple times a day. Some people even posted photos of their body with bruises and cuts on their faces after having collapsed from having a seizure.

I’ve come to learn more about epilepsy in these groups than I ever had in my life. I had no idea I had such a dangerous illness and wish I would have told my parents right away when the seizures started when I was 21.

I hope people with health issues will try to connect with a community as soon as possible, whether it is online or in person. Do not convince yourself that you are perfectly fine and can miraculously overcome the health issue. Addressing the problem and learning as much about it at an early stage can prevent bigger problems from occurring later, and can potentially save your life as well as the life of others. It was years later after I started having seizures that I learned a person must be seizure-free for a period of time before driving, which is something I should have learned from the very beginning.

Finally, encourage the people around you to speak more openly about their health issues so they report symptoms early on rather than waiting until the issue becomes worse.

You are welcome to message me if you have questions or concerns. laurenelltalk [at] gmail.com.

Lauren Ell is an American blogger born and raised in Southern California and is currently based in Sweden. She discusses Epilepsy, Politics and Fun. Professionally Ell is an Online Marketing Consultant and Virtual Assistant. Connect with her on Facebook and Twitter.