Friday, January 31, 2014

Epilepsy


When I was 16 I took a summer job babysitting. It was a family of 5 children. They lived in a trailer park on a lake. Their trailer was a very large nice home.

They had four boys and one daughter. I would sleep in the same room as the daughter because I would stay there all week. On weekends I would go home.

Both parents worked so they needed someone who could take care of the children, do light housework, and cook at least two meals each day. No problem. Remember I have six younger brothers and sisters.

The children also had an aunt and uncle only a few trailers away. The aunt was only a few years older than I. I was asked to never leave the children alone with her because she had epilepsy. She had been in a car accident and there was a bruise on her brain that caused seizures.

She was a very nice person and we got along very well. She would come down a couple of times a week just to visit while her husband was at work.

One day she had a seizure. She was just sitting and quietly watching television when she began to act strangely. She yelped a couple of times and slapped her leg repeatedly. It took me a few beats to realize what was happening but I had no idea what to do for her.

I had promised the children I would make Johnny cake for breakfast one day. What I call Johnny cake is just hot cornbread with sugar and milk poured over it. It is delicious if you want to try it. So one Monday morning I got up early to start baking.

I did not know that the parents had broiled steaks the evening before. They decided to leave the oily aluminum foil on the broiler and clean it after work Monday.

I lit the oven and started making cornbread batter. The oldest son of the family came in rubbing his eyes and trying to wake up. As we were talking we saw the flames flare up from the broiler.

I am good in a crisis so I was going to go out and turn off the fuel tank. When I got to the door I suddenly felt myself turning to the left and spinning uncontrollably.

Then I was waking up on the couch with the mother of the family hovering over me and the children looking so frightened. She wanted to know if I was okay. I felt fine. Maybe just a little sleepy.

The oldest son had the good sense to run outside and turn off the fuel. Then he ran down and had his aunt come up. She called the mother who came right home. It was about a 45 minute drive.

The mother decided to take some time off work so I could go home. My parents had me rest and stay calm even though I felt fine. After one week I went back to take care of the children again.

I was there for about a week and a half. I was up before the children once again. As i moved through the living room toward their rooms to wake them up I turned and saw myself walking slightly behind and to the left of myself!

Once more I woke up to see the mother there as I was lying on the couch. This time my mother was with her. I was still so scared from what I had seen. The mother of the children of course needed someone who was not passing out all the time. She had made arrangements for a friend of mine to finish out the summer. That was fine with me. I wanted my mommy.

Mom took me home and we were relaxing again. That same day I passed the television as I was walking to a chair. Mom was in her bedroom folding clothes.

There was some sort of art program on television. The program was flashing from one painting to another and the lights changed with each painting.

I felt dizzy and was able to sit down. Then I felt myself reach up and tear the whole left side of my face, jawbone, teeth, and all, completely off. Then I felt that same hand reach down and tear the muscle from the top of my left leg. Of course that did not happen. I passed out.

Mom said she heard a funny noise and came into the living room to see me sitting in a chair with everything on my body trying to fold into itself. I am not a limber person. She said my hands were sort of palm up with my fingers almost touching my wrists.

I went immediately to the doctor. I do not remember much about the doctor visit. He admitted me to the hospital.

I had never been in the hospital before. I thought it was kind of cool to be served my food in bed. I did not like the testing they did as most of it involved drawing blood.

The second or third day I was there (I do not remember how long my stay was) I was lying there and I began to think about epilepsy. I remembered hearing my grandmother talk about two sisters in town who had "fits". That and the aunt of the children I had taken care of was the limit of what I knew on the subject.

My parents came in that morning and stood at the foot of my bed. They told me that the doctor thought I might have epilepsy. I said, "I thought that might be what it was."

When I got the chance I asked the doctor what this would mean for me having children. He said not to worry about it. But I did worry about it. So he assured me that the chances of my children having seizures was not even 1 in a million.

I was put on the medications that they used to treat seizures at that time. Now I am not a medicine taker. Two aspirin will knock me out. The medicine that I was taking made me so sleepy all the time. I do not know how I got through my senior year of high school that year. And with my A average to boot.

I have grand mal seizures. Those are convulsive seizures. They are extremely painful. Each one a person has is a bit worse than the one before until they can be so bad that a person can die from a seizure. In fact I have almost died three times. I feel very fortunate to be here.

I am also very fortunate that I am very well controlled with medication. It has been so many years since I had a seizure that I cannot remember when the last one was.

I am still taking the original medications that the original doctor prescribed. One of them is a controlled substance. After fifty years I am physically addicted to it. That means without it I will go into withdrawal and the classic symptoms that accompany withdrawal. It does not mean I am constantly craving more. I just need it to live.

A dear friend of mine was on the city council of the city we lived in. She was on President Carter's epilepsy commission. She asked me to go through the information she had and give her a synopsis. No problem. Until I saw the research. It was five books. Each one was about four inches thick except the last one. It was about three inches.

What I read was a real eye-opener for me. While epilepsy, like many other maladies, is not inherited the predisposition is inherited. That means that my children might have a weakness that they inherited from me that would make them more disposed to having seizures.

Also they used an example of a parent with four children (I have four children). If one child has seizures the likelihood of another having seizures multiplies (not adds up, multiplies). If three children have seizures the fourth will have seizures.

I learned that an uncle of mine had epilepsy. He died before my father was born. He was in a home for juvenile delinquents. My father always thought his brother was "bad" because that was better than being "defective".

My mother suffered terribly from migraine headaches. They are a first cousin to epilepsy. Many of the workings of the brain are the same in both.

Two of my sons had migraines when they were about 8 years old. Testing showed some brain activity but I would not allow them to be put on medication until there could be a definite diagnosis. Neither has had any further problems. My daughter is fine. I recently discovered that my other son has been having petit mal seizures for about three years. He did not want to worry me so he kept it to himself.

Two of my grandchildren have migraine headaches. So does their mother, my daughter-in-law. Two of my grandchildren have had seizures. One was placed on medication for a year. The seizures stopped and the medication was also stopped. He has been fine for several years now.

If any one needs to know anything about seizures feel free to ask. I am almost an expert. And if I am not certain I have the right answer I can probably guide you to the place to find it. In the meantime I am going to tell you what steps to take if you are with someone having a seizure.

1. If they are upright, lower them safely to a prone position. That will help keep them from injuring themselves in a fall.

2. NEVER, EVER, EVER, try to force anything into their mouth. Fingers have been bitten off. Tableware and wooden sticks are either broken or cause damage to teeth.

3. The human tongue is a muscle. It sits in a particular spot in the body. It is physically impossible to swallow your tongue. However the tongue like any muscle can fall to the back of the mouth and block the air passages. Gently position the person on their side. That way the tongue falls to the side instead of the back of the mouth.

4. If the seizure lasts for more than three minutes call for medical help immediately.

5. When the seizure is over often the person will lose consciousness or maybe just be confused. When they awaken the body and brain are busy trying to re-establish connections. They have no time to answer questions like "Do you know me?" Leave that for professionals. Simply say, "hi, (insert name, it is important). I am (insert name, it is important). You just had a seizure. You are safe and I am right here. Everyone is taken care of. You need to rest so go to sleep. I will be here when you wake up." If an ambulance is on the way or the doctor is on the way let them know that too. That way they can let their body heal itself without wondering what is going on.

In the beginning  I was up and full of energy within a couple of hours. As time went on it took me at least two full days to be able to even get out of bed and stand on firm feet. Each person is different.

Epilepsy is nothing to be ashamed of. No more than diabetes, heart disease, or asthma. If you were ever to see the list of famous people and world leaders throughout history who had seizures you would be amazed.

But it must be treated. By a doctor who knows what he is doing. Not many do. Most of the "maladies" are only mentioned in medical school in passing. I hope I have enlightened you a bit. I hope you never need the information. But if you are confronted with a situation you now know what you can do.

9 comments:

  1. Well. What a straightforward honest piece of writing about epilepsy. I wonder if you shouldn't send this into some kind of epilepsy website to help folks understand it better. I now know that I do. Thanks.

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    1. Thank you for your compliments. There are a few websites explaining epilepsy. Some are even geared toward children so they can understand what is happening to them. Too often adults especially doctors forget that children are frightened by the things that happen and if it is explained to them they can deal with it better. Knowledge is power.

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  2. A very informative post, Emma! As I read, I recounted the care and tact we exercised in raising an epileptic son, trying always to keep him aware and cautious about auras and triggers that presaged seizures while also minimizing the idea that he was handicapped. Fortunately, he grew out of the problem --sometimes happens in adolescence. Drugs back then were phenobarbital, dilantin, tegretol. The 1st, a barbituate, made him sleepy but there were risks with all three. Glad you found something that works reliably for you. My compliments and admiration.

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    1. Thank you for adding to my experiences. I still take dilantin and phenobarbital. It works very well for me but I am addicted to the phenobarbital. I discovered as much when a doctor decided to "wean" me off the medication because I was so well controlled. After going through classical withdrawal symptoms I began seizing. My husband rushed me to the hospital where I had several more seizures. After one of them the nurse told me they did not think they were going to be able to resuscitate me. So now I carefully take my medication and do not complain too much. I am so happy to hear that your son is no longer having seizures. Please tell him that although it may not happen, some people find a return of seizures when they get older. It sometimes helps to be aware.

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  3. My comments echo that of the previous ones, Emma, that this was an informative and enlightening post based on your firsthand knowledge and experiences. While epilepsy can be frightening, awareness is helpful in overcoming any shame or discomfort.

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    1. Believe it or not many people who suffer from a seizure disorder feel special because of it. Julius Caesar told his subjects when he had seizures that he left his body to go confer with the gods. That is why epilepsy is called the Divine Malady. Thank goodness most people no longer think of those who have medical conditions as being defective. I am fond of saying that we all have something wrong with us. It is only a matter of how visible it is.

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  4. The first time I saw my cousin get fits was very scary. She was just about two years old and every one thought that she might not make it to her teens even. Today she is thirty two years of age and is teaching children with handicaps and in spite of her own problems is a very productive girl. You are right about getting education and taking out the stigma..

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    1. I must tell you that my seizures are very painful. But it is even more painful to watch when someone else is having a seizure. The things you can do for them seem so limited. I am so happy and proud to learn that your cousin is leading a productive life and helping others in the process. Thank you for sharing it with us.

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