Let's Use Our Brains To End Epilepsy

Let's Use Our Brains To End Epilepsy

Epilepsy affects millions of people, including my loved ones.

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I'll never forget the first time I saw my sister have a grand mal seizure. We were on vacation so my sister and I were sharing a room. I was sleeping on a couch, she was in a sleeping bag on the floor, and our parents were in another room. I had recently gone through lifeguard training in order to be able to start working that summer. I was half-awake on the couch and everyone else was sleeping. My sister was asleep but I heard her make a noise. I thought she was trying to talk to me, so I looked over and said, "What?". She sat up, made another sound, and then started convulsing.

I knew immediately what was happening and got up from the couch and ran into the room my parents were sleeping in. I shook them awake and told them my sister was having a seizure. But when my parents ran into the room, my sister was back asleep, laying down peacefully. Even though I kept insisting I knew what I had seen, my parents were doubtful because they had nothing to go off of. For a period of time, that was the end of that.

A few weeks later, my sister had another seizure while using the bathroom. I was home in my bedroom and I heard my parents shouting at each other. I came out of my room and my dad confirmed she was having a seizure. "I think you were right," he told me.

Thus began the series of testing and medications being tried out. Unfortunately, during this process, I did witness her have a few seizures, including one afternoon while we were playing a game together on our PS2. I've always wondered if the graphics of the game triggered it. Eventually, she was diagnosed with epilepsy and we learned that she had had seizures all throughout her life up until that point. There are many different kinds of seizure events and the grand mal, or tonic-clonic, that most people associate with seizures is just one of them.

We discovered that prior to the onset of the grand mals, she had experienced absence (or petit-mal) seizures. These are nonconvulsive, however, a person may become unaware of his or her surroundings and may stare off in space or freeze, lasting only 5-30 seconds. When the doctor confirmed this, we felt frustrated having never noticed it before. I had seen her in the past "zone-out", where her eyes would slide out of focus for a few moments. We had always associated this with her other disabilities and never thought it was a sign of another problem.

Even though her epilepsy has proven to be quite treatable with a daily pill, there are many people who have yet to find a treatment that helps them. My sister has other issues that prevent her from being able to work or drive, but many people who live with epilepsy live in fear of experiencing an event while driving, working, or while with family. Watching someone you love have a seizure can be a heart-wrenching experience because there's often not much more you can do but watch and wait for it to end. I've seen my mom have to inject my sister during a really awful one. I don't live with her anymore, but when I visit with her I often worry if she's remembering to take her daily pill.

One in 26 people will be diagnosed with epilepsy, but it doesn't just affect humans. My dog is also epileptic. The first time I ever saw him have a seizure, I thought he had injured his leg because it happened right after he had jumped off the bed. I thought he had broken his legs by his scared, spastic movements. Again, after the episode, I didn't think much of it because he was back to his normal self after a few moments. Until it happened again. My dog is my best friend and it's really difficult to watch him experience a seizure. I am still looking for the best treatment option for him.

According to the Epilepsy Foundation, there are 3.4 million people in the U.S. living with active epilepsy - that's more than Autism Spectrum Disorders, Parkinson's, Multiple Sclerosis and Cerebral Palsy combined. Yet, Epilepsy receives one-tenth the research funding than any one of those neurological disorders. November is National Epilepsy Awareness Month so consider doing something to help the cause this month. Find out some things you can do to help on the Epilepsy Foundation's website!

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To The Person Who Feels Suicidal But Doesn't Want To Die

Suicidal thoughts are not black and white.
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Everyone assumes that if you have suicidal thoughts that means you want to die.

Suicidal thoughts are thought of in such black-and-white terms. Either you have suicidal thoughts and you want to die, or you don't have suicidal thoughts and you want to live. What most people don't understand is there are some stuck in the gray area of those two statements, I for one am one of them.

I've had suicidal thoughts since I was a kid.

My first recollection of it was when I came home after school one day and got in trouble, and while I was just sitting in the dining room I kept thinking, “I wonder what it would be like to take a knife from the kitchen and just shove it into my stomach." I didn't want to die, or even hurt myself for that matter. But those thoughts haven't stopped since.

I've thought about going into the bathroom and taking every single pill I could find and just drifting to sleep and never waking back up, I've thought about hurting myself to take the pain away, just a few days ago on my way to work I thought about driving my car straight into a tree. But I didn't. Why? Because even though that urge was so strong, I didn't want to die. I still don't, I don't want my life to end.

I don't think I've ever told anyone about these feelings. I don't want others to worry because the first thing anyone thinks when you tell them you have thoughts about hurting or killing yourself is that you're absolutely going to do it and they begin to panic. Yes, I have suicidal thoughts, but I don't want to die.

It's a confusing feeling, it's a scary feeling.

When the depression takes over you feel like you aren't in control. It's like you're drowning.

Every bad memory, every single thing that hurt you, every bad thing you've ever done comes back and grabs you by the ankle and drags you back under the water just as you're about the reach the surface. It's suffocating and not being able to do anything about it.

The hardest part is you never know when these thoughts are going to come. Some days you're just so happy and can't believe how good your life is, and the very next day you could be alone in a dark room unable to see because of the tears welling up in your eyes and thinking you'd be better off dead. You feel alone, you feel like a burden to everyone around you, you feel like the world would be better off without you. I wish it was something I could just turn off but I can't, no matter how hard I try.

These feelings come in waves.

It feels like you're swimming and the sun is shining and you're having a great time until a wave comes and sucks you under into the darkness of the water. No matter how hard you try to reach the surface again a new wave comes and hits you back under again, and again, and again.

And then it just stops.

But you never know when the next wave is going to come. You never know when you're going to be sucked back under.

I always wondered if I was the only one like this.

It didn't make any sense to me, how did I think about suicide so often but not want to die? But I was thinking about it in black and white, I thought I wasn't allowed to have those feelings since I wasn't going to act on them. But then I read articles much like this one and I realized I'm not the only one. Suicidal thoughts aren't black and white, and my feelings are valid.

To everyone who feels this way, you aren't alone.

I thought I was for the longest time, I thought I was the only one who felt this way and I didn't understand how I could feel this way. But please, I implore you to talk to someone, anyone, about the way you're feeling, whether it be a family member, significant other, a friend, a therapist.

My biggest mistake all these years was never telling anyone how I feel in fear that they would either brush me off because “who could be suicidal but not want to die?" or panic and try to commit me to a hospital or something. Writing this article has been the greatest feeling of relief I've felt in a long time, talking about it helps. I know it's scary to tell people how you're feeling, but you're not alone and you don't have to go through this alone.

Suicidal thoughts aren't black and white, your feelings are valid, and there are people here for you. You are not alone.

If you or someone you know is experiencing suicidal thoughts, call the National Suicide Prevention Hotline — 1-800-273-8255


Cover Image Credit: BengaliClicker

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A Second Person Has Achieved Long-Term Remission Of The HIV Virus

A second man has had long term remission of the HIV virus.

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Over a decade after the first man, known as the Berlin Patient, was declared HIV-free, another patient may also be cured. Though it's too early for scientists to say for sure, the London Patient has been in a long term remission for around 18 months without the help of medication. Both men were treated with a bone marrow transplant. However, these stem cells carried a rare mutation in the genes that affect the production of the CCR5 protein, which HIV viruses latch onto to enter the cell. The virus cannot latch onto the mutated version of the protein, thus blocking its entry into the cells.

With the transplant of these HIV resistant genes, the body effectively builds a new immune system free of the virus.

After the Berlin Patient went into remission, scientists tried and failed to replicate the cure and were unable to until the London Patient, whose HIV count has reduced into undetectable numbers. While this is extremely helpful, bone marrow transplants are not a viable option to cure all HIV infected people, as it is an extremely risky process and comes with many side effects. Even so, scientists are developing ways to extract bone marrow from HIV infected people, genetically modifying them to produce the same mutations on the CCR5 gene or the inability to express that gene at all, and then replacing it back into the patient so they can still build resistance without the negative effects of a bone marrow transplant. There have also been babies whose genomes have been edited to remove the CCR5 gene, allowing them to grow up resistant to HIV.

This does not eliminate the threat of the HIV virus, however.

There is another strand of the virus, called X4, that uses the CXCR4 protein to enter the cell. Even if the editing of the CCR5 allows immunity against one strand, it is possible for a person to be infected with the X4 strand of the virus. Despite this, immunization against one strand could save a countless number of lives, as well as the vaccine that is currently in the stages of development for HIV. Along with the London Patient, there are 37 other patients who have received bone marrow transplants, six of which from donors without the mutation.

Of these patients, number 19, known as the Dusseldorf Patient, has been off anti-HIV drugs for 4 months. It may not be a complete cure, but it is definitely a step in the right direction.

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