In my last post, I talked about how E was recently diagnosed with Autism. I have received outpourings of support. It seems everywhere I turn, somebody knows someone, or has a relative, or has a child with ASD. The current statistics released from the CDC in 2014 are 1 in 68 have an ASD. For boys, the statistic is 1 in 42. So it is actually quite common. This explains why so many people I know have been touched by someone who has Autism. These statistics started me thinking about something else that effects a member of my family. Epilepsy. 1 in 26 people are diagnosed with Epilepsy. **1 in 26**. That is half the number of people diagnosed with Autism. Why then, is my sister the only person I know that has epilepsy?
I decided to talk to my sister about it. Her thoughts were that perhaps people are not comfortable with bringing it up. It’s something that she has struggled a lot with. People’s reactions to her and having public seizures.
When I tell people that my sister has epilepsy, I am usually met with a many questions driven by sincere interest and curiosity. It is my belief that if more people were informed on Epilpesy more people would be comfortable sharing it. It’s scary to watch someone have a seizure and so people in general become uncomfortable if they hear someone has seizures. They are afraid that they might have one around them and they won’t know what to do.
Below is a brief Q&A about epilepsy that I did with my sister. I compiled the most common questions that I get asked. If anybody has any other questions please feel free to comment and my sister will answer that as well.
Some background, Sara was diagnosed with Epilepsy at 13 years old. She is now 21. Her epilepsy is treatment resistant, which means while she is able to control the seizure’s intensity with medication, she still suffers from them regularly. She recently, 2.5 years ago, had a VNS implant surgically inserted into her neck, which is attached to her Vagus Nerve. It’s interesting stuff. Here is a link. http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns
Do you ever hide your epilepsy from those that you know?
Yes. I used to more. For years I used to hide it. I would tell certain people but I didn’t like telling them. These days, it’s not that I hide it from people, I just don’t like going around telling people, “I have epilepsy”. In the past I wouldn’t tell someone and then if I were around them a lot, I would have a seizure and I would be forced to tell them. I used to feel that I had to flat out say I have epilepsy, but now if I am with them and I am feeling weird (pre-seizure aura) I might say something, or if it comes up in conversation I might say something. I used to think I had to hide it, then I felt like I had to tell people right away, now just if it comes up, then it comes up.
How do people usually react when you tell them?
They react differently. Some people act kind of scared. You can hear the tone in their voice. Like they are nervous and they don’t really want to be there anymore talking about it. Some people I tell them, and they say, “I’m so sorry!” and they just keep apologizing. I think, “Why do you keep apologizing, it’s not like you do did anything”. Some people just say, “Oh, I didn’t know that”. So really there is a huge variety of reactions. When I was younger and I would tell my friends, they would stare at me like I was a freak and then I realized they weren’t really my friends.
Why do you think people are so afraid when you have a seizure, even if it’s a partial?
It’s something that you hear about, but aren’t really familiar with. When people hear you have seizures then they are afraid you are going to have one right then, and they won’t know what to do. People don’t like different.
Do you think it’s fear based?
What are the types of Seizures that you have had?
I’ve had three different kinds. The first one is the *Grand Mal Seizure* or also known as Tonic Clonic. These are the typical ones you see on TV. Where you fall on the ground, and you’re shaking and foam’s coming out of your mouth. When someone thinks of a seizure this is mainly what comes to mind. I had Grand Mal’s originally. Then I went on medication and I still had them. I went on a second medication, and I stopped having them, unless I missed a dose of my medication.
The second kind are *Partial Complex* seizures. This type of seizure is where it’s different for everyone. Partial Complex means movement. With mine, I would freeze in place, clench my left fist and I would twist my body and freeze in the air. I would stand there for about 15 seconds before starting to come out of it. That type of seizure happened for me for 2 years.
The third one and the only ones I now have are *Simple Partial*.
They don’t have movement. With mine, I’ll freeze. It’s almost like I’m staring off into space. I have no control over my body, but I’m aware of everything around me. Someone could say my name a billion times and sometimes I can respond, other times I can’t.
What’s it like when you have a seizure? Are you aware?
*Grand Mal* These are terrifying. They are the scariest things I have ever experienced. If I’m standing, I fall down to the ground. I’ve been lucky to have most of mine when I am already laying down. I twist to the left and I convulse. It sounds like the whole room is echoing. I hear what people are saying. Every word echoes in my mind multiple times. I feel out of body, I feel like I’m looking down on my body when I’m having one. I can feel myself shaking. I grunt involuntarily and as I come out of the seizure I can hear my body making that noise. It scares me. Quite a few times I have bit my lip to the point of it bleeding a lot. It takes about 5 minutes for me to come completely out of the seizure after the shaking. Even when your body is not shaking, you’re still in the seizure. Your body’s in the clonic stage. I’m exhausted for the entire day. I have a hard time moving on my own and I sleep for a long time after.
*Complex Partial* It feels like my stomach is jumping because it knows what is happening. I have an aura before, which feels like a sharp headache. This precedes the seizure. You see the world in a different way when you are in a seizure. You’re looking around and you have weird thoughts. I feel paranoid. I have completely irrational thoughts.
*Simple Partial* I have an aura with these too. Sometimes in these I clench my fist as well. I am more aware in a simple than a complex. My head throbs. The seizure lasts about 10 seconds. But sometimes they come in clusters, and then each individual one lasts about 5 seconds. The cluster could last much longer though. After a Simple Partial is over. it takes me about 30 seconds to be myself again.
Why do people use service dogs with epilepsy? Do you have one?
I don’t have a service dog. There are people who need them. The dogs are trained to have a sense that the seizure is coming. It then can alert the person or family that something is happening, and get the person to safety. I don’t have one because I don’t need one. Service dogs tend to be for the people who have seizures out of no where.
That’s all for the FAQ, please don’t hesitate to ask any questions you might have.
For more information, check out Sara’s blog: http://theepilepticlifeofsara.blogspot.com/
And/or her YouTube Channel: https://www.youtube.com/channel/UCO4emORyDRkS0ghS-CetGMQ