Monthly Archives: November 2015

Epilepsy Awareness: Emergency Lights

The new emergency lights are terrible. They are worse at night. The new lights are LED lights that flash instead of normal lights that rotate. EEG lights are LED lights that flash, just in a different color.

Cop cars have three kinds of lights that it rotates. When pulled over it is protocol for the officer to turn off the forward flashing light if informed there is an epileptic in the car. This is the light most likely to cause a seizure because of how fast it flashes. It is also protocol for an officer to call for an ambulance if lights trigger a seizure. These lights have been known to trigger a seizure in someone who has never had one before and persons who have not had one for years. I have trouble with some TV/movie/news scenes.

 

We found out that emergency lights were not that well planned when we got stuck in a traffic jam due to an accident shortly after my first seizure. Lots of police cars and ambulances, maybe a fire truck.

Lesson of the day: the worse place to have a seizure is in the car. Less bruises but lots of kinks and sore muscles. Good luck getting into the rescue position.

I was in the car with my Dad, middle of the night. The cop car lights and my Dad putting his hand over my eyes woke me up. When the officer came up my Dad already had his window down all the way down, although it was below zero. The officer started to ask the “Do you know..” Dad cut him off. “My kid had seizures, could ya turn off your flashing lights.” Officer says, “I can turn off my forward lights.” Dad says”That’s prefect if its the ones the doc says flash.” I think the officer ran to his car, the flashers seemed to go off rather quickly. I remember my Dad being very thankful.

Lesson of the day: Officers are pretty awesome.
My Dad is awesome, but we already knew that.

One fun night, I was on the way back to the dorms from a doctors appointment and errands just after dark. My friend got pulled over for speeding. He politely asked the officer to turn off the forward lights because of my epilepsy as soon as the officer got to the car window. The officer refused. I am light sensitive and went into a seizure. The officer insisted that I was faking. We were trying to get out of the ticket. Chided my friend for not giving him his full attention, for taking off my seat belt, reclining my seat, and keeping my sister calm. So the officer broke protocol again when he didn’t call for an ambulance, seizures are considered a medical emergency.

Lesson of that day: getting a cop in trouble sucks.
I believe that there are few officers that take seizures so lightly. Every other time in the past ten years that I have been with anyone that got pulled over the officer turned off their forward lights as soon as they heard the word epileptic or seizures.

 

 

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Epilepsy Awareness: I am not Possessed!

There are people who still believe that epilepsy is a sign of demon possession or being cursed by God. These Christians are idiots and ignore medical science. God gives us the tools we need to deal with crap we go through. Science and medicine are a blessing and tools we utilize.

During witch hunts and further back in history possession as an explanation made sense. It was the only way people could explain what they were seeing. Coming to this conclusion is understandable under those circumstances. It is not when you ignore evidence that logically explains it otherwise, these Christians are idiots who are hurting people-literally. I have been told that I am possessed. A person who is possessed acts very weird and harms themselves and others. Epileptics are not possessed. They have a brain disorder.

I have been accused of being punished or cursed by God. First, Jesus eradicated sins of the father, you are not responsible for the sins of your ancestors. That means if you are born with a hereditary disease it is not because of a sin an ancestor committed. Think, what sins have you committed that you could need punished for. Repent, whole heartily. Are you still convulsing? Yes, it is a brain disorder. God does curse people in the bible, completely turns his back from them. To be cursed means that you have committed the greatest sin, speaking profanely about God. Have you? No? It is a brain disorder. I have had to explain this to nurses.

I have been accused of not praying about it because their children or child or so and so prayed about it and no longer convulses. Child epilepsy is different than adult epilepsy. Most children grow out of it after their brains fully develop. Science and a blessing. When contracted as an adult it usually does not go away. The frequency decreases, right medicine it might seem like it has gone away. It probably has not. In the last stage of development something happened or there was head trauma. It’s a disorder. I pray about it. I do not pray that it will go away, it is a disorder. I pray that I can get to that anniversary. It is a brain disorder.

I don’t know why Christians don’t understand. They can be idiots. When they misbehave they hurt people and it is inexcusable. They need to repent and ask the epileptic’s for forgiveness so they can stop being idiots.

The same reasoning goes for the idiot Christians who say similar things about migraines and head pain. It is a brain thing.

I am a Christian. I believe that while studding the bible you should be taking into consideration the scripture, reason, and tradition in order to understand the text. Christians who read without understanding tend to make me angry.

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Epilepsy Awareness: Musical expressions

I could not find my favorite, maybe on a good day I will be remember the name. I can feel my seizure meds working today, Woot!  So I am trembling, barley getting these keys right, hence today will be songs written about seizures, like the first three,  and songs that embower epileptics like the last two.

And my two theme songs:

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Epilepsy Awareness: Anniversaries

January 12.2014 is a very important date. It is the day after my last seizure. I have been seizure free for exactly one year and eleven months today (November 12, 2015).

I see a lot of pictures of people holding signs on the big day “#years Seizure Free” or even “#months Seizure Free,” Both are amazing celebrations. I remember celebrating by the week. Then two weeks. The first time I hit the two month was amazing. If you would have told me then that I would be 23 months free I would have laughed at you. But here I am with my hopes set high and putting trust the Lord that I will be giving Uni an awesome early birthday present…2 years, oh yea baby. But first lets get through Thanksgiving, then Christmas.

Celebrating victories, big and small, is important because it reminds us of how bad it was, how hard we worked to get where we are, and gives us hope to look forward to more victories. With epilepsy we are celebrating a safer life. A life where we have not scared the wits out of anyone in a period of time. A period of time where the people around us has seen us as human, not someone who has to be constantly watched like we are going to jump out and eat them, whahaha. The period of time that no one has come to ask if we are contagious or confirm that we do in fact have a doctor.  We are all like Woot!

I don’t know what anniversaries are like for migraines or pain free. I haven’t experienced it. The blogs I follow are informational and do not post many personal story articles.

It takes a long time to find the right balance of medicine and life style. In this respect it is very much like treating migraines. The daily preventive pain medicine is also the same as epilepsy medicine. That is weird. But they are both neurological disorders with similar causes so it makes sense at the same time. The brain is a mysterious place my friend.

To celebrate today, I did not fall down. Big victory when vertigo comes to play and flames of Hell scorch your brain. I watched a favorite movie with double vision (two Mr. Darcys wasn’t so bad–bbc version), and played with Karma (the silly-mannered dog). Mom made my favorite pork. It was a nice day.

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Epilepsy Awareness: Would you like a cup of tea? Wink, Wink.

A topic I have not seen very much talked about anywhere is sex and epilepsy. I will continue with the analogy of a cup of tea, because I like it. This is what I have gathered.

Most drugs decreases the sex drive or can make it just not as fun. It’s nothing personal, its just the medicine. This can create strife in a relationship. My opinion, if your partner can’t understand and is confused by the word no, dump that jerky ass.

It takes longer to recover from a seizure then from a migraine. If the seizure gives a person warning, from then to about three days latter the person’s body feels like it has been hit by a truck. A seizure is the equivalent to a full work out, but what should take at least an hour takes 30 secs to 2 minutes.

A person during an aura is like asking a drunk person would you like a cup of tea? During a seizure, even one that the person may look okay but is behaving a little odd, deferentially no to a cup of tea. If a person had a seizure earlier that day, just don’t ask/try. An epileptic probably does not want a cup of tea for many days. A nice snuggle maybe, but no tea for me.

It saddens me that this causes problems. That we have to have discussions about consent at all. If the person truly cares I think they will understand and not push the issue at all.

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Epilepsy Awareness: Worst First Day Ever.

I was very excited. I hadn’t had a seizure in months, so I applied to a full time position as a housekeeper at n nursing home. I got the job on the spot and started the next Monday. The day started with about four hours of training movies. I hadn’t watched that much tv without a break in years. It was also an old TV so every once in a while it would flicker. I didn’t feel so good when the training lady came to get me for lunch, which I had forgot to pack.
After lunch they had me take the residents that smoke out for their smoke. Then I felt horrible. Then the”real” training started. The person in charge of me took me to the next room on her list and sent me into the bathroom and so I remember kneeling by the toilet. The next thing I remember was siting in my managers office. She was telling me to stop answering all her questions with ok. Do you have someone you can call or not? She was not happy with me.

Rewind.  These were nurses and nurse’s aids.

I was cleaning the bathroom. I come out of the bathroom and told my coworker that I felt like I had a seizure. I then started to through up and then started to try to clean it up. All the while saying ok to every question. A nurse’s aid came and took my vitals and they decided that I had not had a seizure and I must be fine and had no idea what to do. The training person came and took me to take a urine sample. Training person came to the conclusion that I was not okay because I said I was ok no matter what the question was and that I needed to go home or something and informed my manager. My manager was not happy. I called Whitney. I was starting to come around. I had no idea where I was and was very scared. The head nurse came and chided me because I said it was a seizure but no one saw me fall down and convulse. I was very confused and had no idea what was going on. The head nurse left angry with me because I had no answers for her other then “where am I” She thought I was out for attention. My manager insisted I call someone. I called Uni. Which was very helpful because we learned that I was under the impression that I lived in the dorms, which was only five years prior to this story. Whitney says to call my Mom and if she didn’t answer or was also very far away she would come and get me. I call my Mom. The first thing I asked her was “where am I because not even Uni knows;” Mom said she would be there shortly.

On the way home in the car I had a short shiver and then when we got home I dropped in the yard and had a good shake for a few minutes. Really the only thing I remember of that whole day is the first few hours of work, waking in the managers office, and waking in my bed the next morning.

Best first impression ever. It took me about three months to get an account of what happened that day because everyone was convinced I was faking. They thought I didn’t deserve to be told what happened to me.

Epilepsy awareness is important because epileptics cannot even relay on all medical personal to be able to help them during a seizure. The stigma, misinformed,  and uninformed makes the epileptics’ life more difficult and scary.

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Epilepsy Awareness: I Passed!

I do not know if there are any differences between going to the doctor for migraine and epilepsy, so I do not know if migraine patients are given this test or a similar one. The test my doctor gives me tests my senses, reflexes, and motor skills.

The first two years I failed the brain test every time, without fail.

My first visit he asked me to sit on the table and takes out a tuning fork. Do you feel the vibrations, the cold? Then he started checking my reflexes, even the ones I didn’t know I had. Shoulder, elbows, wrists, ankles, knee. Left knee. Left knee. Left knee. He gave me a reassuring smile. Left knee, and he found the spot, and I kicked him. I apologized. Now he asks me to follow his finger. Now I am trying to touch my nose, I miss. Twice. Now my eyes hurt. He shines bright light in my eyes, I was already seeing spots, they got bigger. Squeeze my fingers.  It was time for the sobriety test. Stand up at attention. Don’t fall down as I check your balance. Okay now walk heal toe away from me. Now walk towards me. Now the doctor catches me as I start to plummet to the floor. He asked if I was alright and directed me back to the chair. The doctor said, “Okay, Thank you.”

I remembered the first time I passed.

He said “Good, why don’t you take your seat there.”

He said GOOD!

It probably helped that it was a good pain day, I had never been so excited over that word before. Good.

I walked out into the waiting room where my Mom waited for me. Before she could ask for her usual report I told her “I passed. He said Good.” She had no idea what I was on about. “The brain test, I passed.” Mom smiled and was excited for me. She might have not understood, but I think a few others in the waiting room understood, I remember seeing a few smiling faces as Mom coxed me to the front desk. After we got to the elevator she asked why we were so excited.

We went for ice cream.

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Epilepsy Awareness: First Aid

What to do if someone has a seizure isn’t talked about. Seizures in general aren’t talked about, I hadn’t heard the word “epilepsy” until the doctor said it. What is bad about this is that if you do something wrong you or the person seizing can get hurt. If you stick your finger in their mouth it could get bit off and the person could choke on it. There is a thing called a seizure spoon, very bad. If you try to hold their hand it could be like holding the hand of a pregnant lady going into labor.

This poster is the perfect example of what to do. To do all of this in the typical 30 second seizure is impossible. Seizures can last up to 2 minutes, those you do have time.

First, stay calm. The last thing this situation needs is panic.

The most important thing is that you get the person into the rescue position and help them stay that way. Vomiting while seizing happens, but if the person is on their side they won’t drown. The rescue position also hurts less and helps result in less injury. Never restrain or hold down, that hurts a lot. Put one hand near the knees and the other near shoulder one side of the body. Pull and push little bit to help the person stay off their tummy and back. A sister sits by my tummy and puts her hand on the back of my knees and back of my shoulder.

Second most important thing to do is to move everything that the person could hurt themselves on. Clutter, school bags, furniture. Loosen tight clothing, like a tie or scarf. Putting something under the head is important, especially if you notice that they are banging their head on the floor repeatedly. Time the seizure. If the seizure last more the five minutes, or past your comfort level, call 911. One of the first things they will ask is how long is the seizure. Looking for a medical tag can wait. If you call 911 they will need it. Chances are they might not have one.

When the person wakes up give them quiz them. 1. Name 2. President 3. Where are you 4. add two plus three. If they can get these right and their is no injury they are probably ok unless they have never had a seizure before. So if you don’t know ask. If not call 911. Then ask if their is someone you can call or if there is anything you can do. If you didn’t call 911 get them a ride or offer a ride home.

When to call 911: When you are scared or freeze. If you can’t handle the situation. Think about everyone’s safety and the best way for everyone to remain calm. Help is on it’s way is a phrase that can calm and reassure people. If the person seriously injures themselves during the fall and the attack make the call asap and focus on helping the person not hurting themselves again. If a person is convulsing for over five minutes there is something seriously wrong. If the recovery is taking longer then you think it should or the person has stopped shaking but didn’t wake up it is time to make the call. If they have more then one seizure it is not good. If you make the call and the person does not want to go they don’t have to. They can sign a form. Do not worry about whether or not you think the person would want you to call or not once it gets to one of these points.

If you have an epileptic friend have a talk about their needs and presences. I do not need to go the ER unless I don’t start breathing again or one of those biggies. If it is normal wonder about for a while and then fall into and convulse for under two to three minutes and can pass the quiz, I am golden and ready for a long nap.

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Epilespy Awareness: Hello Mr. Floor.

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I formed a strong bond with the floor, it would have been nice if we met under different circumstances. We have shared my most vulnerable moments. Mr Floor is very understanding about how sensitive I am about those times. It does not matter it I hurt the floor, throw up, or pee all over it. It matters not that I take pleasure in avoiding him. He takes no offence. He is the friend that knows he is being walked all over and being taken advantage of. He takes no offence. He knows his purpose and is happy to fulfill it. All he asks for in return is that you tend to his hygienic needs. I think everyone prefers a clean friend anyway, it is not an unreasonable request. Thank you Mr Floor. Thank you for being there for the scariest moments of my life and not judge me for it. Thank you for being a trusted friend, I know that you will always be there for me I should fall.

This meme is the only place I have seen the floor painted in a positive light. The scariest moment is that moment you wake up and you know nothing, temporary amnesia, it last just a few minutes. For a few minutes the only thing you know is what kind of floor you are on and what kind of decor is on the walls. Not your name or who the others around you are. You are surrounded by strangers. Then you realize that however long you were out you have to trust that these strangers did what was best for you. That they took care of you. That did not do anything shady or plan out criminal to you. You have no idea. Slowly things come back. You know your name, where you are, those people… You still have no idea what happened between now and the last thing you remember. You have to trust that when they fill in the pieces they are being truthful. Sometimes people refuse to tell you, they refuse to tell you because they think you are lying, that you do know what happened. Sometimes they think it best you don’t know.

I am told by the doctor, family, other epileptics, bloggers that the scariest part is that you could be seriously injured or die. Not for me. It is the amnesia. It is why I do not going places without someone I trust. It is why the floor is a good friend, it doesn’t lie and it answers a few questions without fail: did I throw up, did I pee myself, how hard was the surface.

There are two ways to fall. The awe that smarted and the crap that hurt way. That kind of hurt is a committed loose fall. A dizzy person can do this. Commit to the fall. Relax you muscles, start with your feet and work your way up. You will fall more vertically, gracefully. We tend to fall the crap that hurt, it is the only way you can fall in a seizure. If you put it in slow motion it would be about like this. The middle tenses first, then your neck, then you legs. Lastly the feet. The person falls horizontally, almost looks like a straight line. Sometimes you can hear the impact. This is called a drop seizure. The drop can be different serviettes, it depends on how hard you convulse. This is why you will see people wear helmets all day. Out of control sever convulsions are dangerous. A seizure helmet looks like a football helmet and is worn all of the time to protect their head from the fall.

Something epileptics and migrainers share is a relationship with the floor. I choose to appreciate the floor. I appreciate carpeted and padded floors the most. It causes me pain and bruises me. But it does not mock or discriminate and  it opens a truthful line of communication.

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Epelispy Awareness: Triggers

Seizure triggers are pretty much the same as migraine triggers. Seizure triggers have a few weird ones, like toothpaste. Some more common ones can include flashing lights, TV, lighting, drastic tempter changes, music frequencies, loud sounds, certain foods, patterns like stripes, florescent lights, low blood sugar, perfume, emersion in hot/cols. I
d water, and the list goes on. A lot of people cannot identify their triggers.

My biggest triggers are migraines, cigarettes, cigars, pain levels above an 8, flashing lights, florescent light, emergency car lights, sm
oke alarm lights, and sudden change in temperature (like walking into an air conditioned building when it is 80 degrees outside), being cold, drinking ice cold beverage, allergic reactions, being sick. My biggest trigger for migraines is sunlight, does that make it a seizure trigger too? I think the only things that do not overlap are being cold, drinking cold beverages, and being in cold water. Well, does having a migraine count as an overlap?

This is why I have a cave. I have migraine triggers that don’t trigger seizures. It’s a pretty nice cave…

It took me a long time to identify my triggers. It was not until I stopped having migraines every day that I could compare, was there anything that happened before my migraine that didn’t or did before a seizure. It is all very confusing. It is not until recently that even read articles that stated that migraines can cause or trigger seizure found that it goes both ways for me.

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