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Epilepsy Real Stories

Epilepsy: Real Stories


Real stories are personal stories shared by members of the DIYHealth community. These are stories of hope and triumph over a medical condition, inspiring us to stay the course.

Top Real Stories

1. My school days

I had a violent seizure five years back at school. It was a terrible state to be in, and I was too scared to tell my friends and classmates about my epilepsy. However, after a lot of counseling I went ahead and shared my disorder with the class and also gave them tips on how to tackle the situation if I had a seizure at school. Everyone was supportive, and this made me overcome my fear. You are not a different person because you have epilepsy. It is important to try to lead a normal life and keep an open communication with doctors, parents and peers. I take my medication daily apart from a lot of rest and healthy food. It is tough to juggle school and epilepsy, but I graduated successfully and never let epilepsy take control of my life!ย 

2. Learning the hard way

I have recently been diagnosed with juvenile absence epilepsy. It all started a year back when I was surfing, suddenly I blanked out only to open my eyes to a circle of paramedics around me who told me that I just had a seizure! It was devastating, but I treated it as a sign of battling the problem, because I managed to come out alive from the waters despite having a seizure. A few months later, I had a seizure again during the school camp which caused me to fall down violently leading to a dislocated shoulder. Another episode of a seizure led to my other shoulder getting dislocated, which turned my world upside down. I could not do anything on my own which was a great setback. I managed to tide through those rough times and after a few months I was diagnosed with beat epilepsy and I am on a medication which has done away with seizures altogether. I take my life quite positively and try to do as much as I can to savor these precious moments.

3. Love leading our way

For us epilepsy is a family disorder – as both of us married each other knowing that we had similar types of epilepsy. Sometimes, we end up having as many as ten seizures in a day – however, with each others support, it becomes easier to go through the ordeal. We both lead normal lives despite our disorders. At the workplace, there are work mates that look after us during a seizure, and it has become quite normal for us to get back at the desk after having one! Neither of us gets any warning signs of having a seizure, but surprisingly we understand when the other is about to have a fit. Both of us make sure that we make the other partner comfortable with minimum risk of injury. We’ve gone through medication, but it has not worked much. There are times when we feel depressed, but we derive the strength to deal with the problem with each others support. We are a special couple and in our own way we try to create awareness of this disorder to other people having it. You should not hide it, but should let people know because it is nothing to be ashamed of at all!ย 

4. My winning smile

Seizures have been a way of life for me, and everything just boils down to counting and frequency. I keep counting the time each seizure lasts, the days between the seizures, the number of treatments that I have taken so far, the surgeries, the medication and the list is endless. The counting always keeps me alert and I know when the next seizure is due to strike. The best part is when the gap between the seizures is long – which gives you a little hope. I’ve been having them for the past fifteen years and counting. I was diagnosed with Benign Myoclonic Epilepsy when I was only four month old. I would end up having uncountable myoclonic seizures on a daily basis with a great frequency. Gradually, after two years the diagnosis changed to Startle-induced Myoclonic Epilepsy in which I would get a seizure even if someone passed right beside me. When I turned seven, the intensity and duration of the seizures increased and would sometimes last an hour! It was terrible, I would turn blue and my heart beat would almost stop. My life has been filled with doctors, hospitals, medications, tests and therapies – and none have managed to free me from that electric force that keeps striking lightning inside my brain. Just last week, my seizure lasted 30 hours, and I am in the ICU of a hospital trying to recover. My parents are hopeful and that gives me strength to smile and say “I am good” after a seizure is over!

5. Braving the tides

I am 24 years old and I have been living with epilepsy since the age of 5. However, I have always tried to rise over this disorder and not let it prevent me from doing the things I enjoy. There are certain activities that I do which might be risky for an epileptic patient like me, but I make sure I do it with the correct precautions. I am a very competitive swimmer and have also qualified at the state level – which I managed despite my condition. I have always been open about my epilepsy and have done that in a positive manner. Swimming with epilepsy is not easy, but that did bring awareness about the problem to many people. I was always supported by my teammates and coaches, who also helped me when I had seizures while swimming. I have lately had a VNS surgery to help control or stop the seizures that I was having. I take medication on a daily basis which does make me feel drowsy to the extent that reading becomes very difficult. However, I am determined to carry on and someday get a great job!ย 

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