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Epilepsy - Debilitating for Some, Not for Others

Updated on April 9, 2017
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I will always be mindful of my disorder. However, it doesn't have to be debilitating. There is more hope for health than there is for family

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My experience with Epilepsy

Up until I was old enough to know that I was not normal, which was at the age of 4 years old, I was told by my father, that I started passing out. I remember my mother bringing cupcakes to my class when I turned 5, we had just finished playing and I was in line with my classmates to get a drink of water. I did not make it to the drinking fountain before I ended up on the ground. However, I was NOT officially diagnosed until I was about 15 years old.

I was babysitting at the neighbors house across the street. The two kids were asleep, as was I, on the sofa. Their parents woke me, so I could walk across the street to go home, but I passed out instead. The neighbors called my mother, and my mother walked across the street to get me. I pretty much just went home to sleep it off. I was not yet at the age where I was driving. In fact, due to my condition, I did NOT get my driver's license until I was 19.

I did, however, get my first job the month after I turned 16, which was during my sophomore year of high school. I did not live very far, so my mother dropped me off and picked me up after work. However, working 5 - 10 p.m., and going to school the next day was one of the triggers to my epileptic seizures. I could not get enough adequate sleep, from the time I went to sleep; until the time I had to get up for school the next morning. My parents would never have allowed me to quit the job due to my epileptic seizures. My mother was the oldest of 7 children, and her mom took her out of school to work to help the family. My father, who is a LEGAL immigrant in this country, from Canada on a work visa, worked in the United States since he was 17 years old. Coming from 2 parents who would have NEVER allowed my disability to prevent me from bringing in an income, even while in school. Which is probably why they waited so long for me to be diagnosed with this disability, in which I do NOT collect disability for. (Legally, you have to have 4 seizures a month to collect disability for Epilepsy. No matter the fact that you have lived with it since you were 4 years old.)

It is quite embarrassing when you are not sleeping well, and you fall out of your desk during your senior year of high school. Another student is sent to the nurse's office to get the wheelchair to bring YOU to the nurse's office. However, your mother takes you for your first CT Scan and EEG. The doctor puts you on Dilantin, which gives you blisters in your mouth, so the doctor switches you to Tegretol. (Tegretol was a good choice, up until you decide you want to try to have children.) When you return to school after all the medical tests, no one really asks you about it?

This all gives you anxiety along with your seizure disorder. What are your classmates saying about you? The anxiety continues to give you insomnia. It all builds up! Along with having to deal with homework, tests and trying to be as normal of a teenager as you can be with your seizure disorder. Your grades in high school were horrible compared to the grades you received while in college.

Imagine

Imagine having a seizure during a game of foos ball with your child and hitting your head against the wall. THIS HAS HAPPENED TO ME!!!

Imagine waking up in the morning and finding a hole in the wall because you had had an episode during the night. THIS HAS HAPPENED TO ME!! And my youngest child was the one that came into my room and asked me about the hole in the wall.

Imagine having one in a chair while at your child's eye doctor's appointment and INVOLUNTARILY pee all over yourself, with your child in the room. THIS HAS HAPPENED TO ME!!

Imagine having one, and one of your children is with you, and must walk next to you while being pushed in a wheelchair to your doctor who is across the street. THIS HAS HAPPENED TO ME!!

Imagine being unemployed for two years, FINALLY finding work, and after a month of being employed, you have a seizure with NO HEALTH INSURANCE, and you lose the job because you cannot get back on seizure medications in a timely manner to keep your employers happy. I also lost a tooth in this episode, it was put back in the Emergency Room, but I still had to have two crowns put in. Drinking protein shakes when you are hypoglycemic is NOT an easy thing to do. It was quite a shaky time for me.

Imagine finally finding that job, and after two years of being seizure free, you have a seizure in front of your client, who calls his employers managers for assistance. When you assess yourself you find that you have no choice, you INVOLUNTARILY soiled your pants, which tends to happen when a person has a epileptic episode. Therefore, I called my parents and my dad dropped off my mother, with a set of clean pair of bottoms, and then my mother drove my car home. I had to leave the client two hours earlier than planned, and go home. THIS HAS HAPPENED TO ME!!

Imagine both your parents ending up in the hospital, one finds out he has pneumonia, with a 103 fever, but because he got into the exam room first, he did not have to stay the night. However, your mother, who was diagnosed with an upper respiratory infection, had to stay for breathing treatments. I contacted my doctor, and told her what was going on with my parents and she gave me a script for antibiotics. However, I was just as sick. I felt dizzy, sat in my recliner and had a seizure. THIS HAS HAPPENED TO ME!!! Epileptics have to be conscious of how they feel. Any type of ailment can trigger an episode.

Seizures: Marriage & Children

I, eventually, got engaged to a man who had gone to Naval Boot Camp. A man who simply did not understand my anxiety. The thought that a seizure could strike at any moment never fades. Fearful of having an episode with no one around. I had a seizure at work, after having taken Antihistamines, because I had a cold. Unfortunately, I did NOT know at the time that someone with a history of seizures should NOT take Antihistamines. I do NOT remember anything that happened during this seizure. I was told by co-workers that I was cussing like a sailor. I do NOT remember the ambulance ride. I do NOT remember my father coming into the Emergency Room, because my mother was out of town with friends, and me cussing my father out. I remember waking up with a tube down my throat. (Apparently they had to pump my stomach, which is how they found out that I had taken an Antihistamine. At the time, they thought that maybe someone had drugged me at work.) I was so delighted when the tube was removed. It is not fun to have your stomach pumped.

After so many CT Scans and EEGs, I was told that my CT Scans were normal, but my EEGs were not. Perfect example of having abnormal electricity in your brain.

I was very fortunate to be one of those people that did not have seizures very often. I got off of the Tegretol medication five months before I was going to try and conceive my first child. I did get pregnant very quickly. However, the pregnancy was considered high risk. They thought my child had down syndrome, cystic fibrosis or spina bifida. Cystic Fibrosis was ruled out after blood tests between me and the father of my children. He was due January 14, 1994, a genetic counselor told me two days before he was born that he could be born premature. He was born December 18, 1993. December 22, 1993, I got the phone call that I should prepare myself for the worse. That my baby boy could very well die. December 23, 1993, I got the phone call that he turned a corner, and they asked how I would like to bring my baby boy home on December 24, 1993. He was perfectly fine. He is now 23 years old, and graduated with his Accounting degree from Appalachian State University. He has played soccer since he was 6 1/2 years old. This child was the MOST empathetic little boy EVER!! (His pre-school teacher had said she had NEVER seen such empathy in someone so young.) He would hold his little sister's hand while walking home from school. He did NOT care what his friends thought of him as he was walking home with his sister. (I know, because I was standing at the corner when they were walking towards me.) THIS LITTLE BOY WAS A MAN WAY BEFORE HE CAME INTO MANHOOD. I can guarantee that there is no other man like him. Deep down, he will always be this man. However, a part of me wonders, did this little boy's father's influence zap the empathy right out of him? Is there a reason why my seizure anxiety is now stupid, and that I was laughed at by my own family? I don't know. I do know that these children cannot rip out the foundation that I placed in front of them. All people tell me is, "they will be back. Maybe when you're dead, but they will be back."

It is very hard for an epileptic to deal with a newborn, plus, at times being the only parent around, when the other parent is on military deployments. More sleepless nights. Granted, not the child's fault. However, this article is about Epilepsy, and what things trigger the disorder.

I went on to have two other children. One in 1997 and the other in 2000. These pregnancies were normal, no high risk status like my first pregnancy. In 1999, I was diagnosed with Hypoglycemia. Which I was told is also a trigger of Epilepsy. I must constantly watch because anything can possibly trigger my seizures.

What I wish my children knew

What my children refuse to understand is that this instability due to one's epileptic disorder impacts many aspects of your life. My children prefer to follow the ignorance of their father and not educate themselves on the impact of their mother's disorder, which is heartbreaking to say the least. However, I move forward without them, despite feeling alone, embarrassed, depressed, sometimes out of control, or fearful when I will have the next seizure, which did happen, I was seizure free for 2 years on August 30, 2015. Then, had another seizure on November 13, 2015. They won't go away. They haven't for 40 years. Why would they go away now?

I felt like a burden when I had an episode, because my now ADHD ex husband made me feel that way. Always a social issue in the middle of my marriage just because he chose to remain ignorant and not educate himself in this disorder. He seemed to feel I could control them, and I couldn't, which always made me feel like a constant disappointment to my husband and, much later, my children. Not being able to find work after receiving my bachelors in social work just made things worse. Now, my ex husband, his ADHD/Bipolar mother AND his epileptic ex wife destroyed our family. Hope it was worth it to him. I know it was to his mother. Either case, one day, their father's ADHD disorder may just find him as a burden to our children as well.

After the divorce, I searched for employment for a year, after obtaining my Bachelors in Social Work, while living in a military community with no prospects. My two underage children had to live with their father and I have had no contact for almost 4 years. My son graduated college, and again, no contact from him either. They changed their cell phone numbers. (Mother's days have been difficult, considering you don't get remembered by them.) I moved in with my mom and dad. I FINALLY FOUND A JOB and AM USING MY SOCIAL WORK DEGREE. My children and ex husband all feel that I wasted my only chance on an education on social work. I disagree. Social work is a career that I can still rely on if my epileptic seizure disorder gets worse.

I had to file bankruptcy; due to divorce AND employment concerns.

Now that I am back on epileptic medication, I have lost my balance in the bathtub and ended up with a bruise on my arm the size of a tennis ball. Epileptics are CONSTANTLY worried about losing their balance. Even if I had wanted to go back to stocking shelves at Wal-Mart, I would not have been able to go back to the same position. I am not allowed to climb ladders.

http://aptiom.com/coping.html

However, in about a year, I will have another new beginning. I am ready for a change. New surroundings. It is just about time.

Diagnosis: Seizures. Things to avoid

Things that those diagnosed with epilepsy should avoid:

* Climbing, and/or unprotected heights (I knew there was always a reason why I hated amusement parks. They are just NO FUN for me! Even IF I was able to go back to working at Wal-Mart, I would not have been able to go back to my stocking position, as an epileptic, I am NOT allowed to climb ladders. )

* Heavy equipment use, or vehicle operation of any kind (The law in Missouri states you have to be seizure free over 6 months before you can drive again)

* Seizure causing activities such as alcohol, dietary issues (really sucks to be a woman, because technically, someone with epilepsy should NOT be dieting, it just does NOT work), bright or flickering lights (I recommend that IF you are epileptic and you must work on a computer you do so when it is light outside vs when it is dark, you don't know how many times I stayed up until all hours of the night working on my CreataCard project for my ShareACard recipient only to have a seizure right by the computer. I got myself up, and climbed the stairs, and put myself to bed)

Triggers of Epilepsy

* Not taking epilepsy medicine as prescribed

* Feeling tired

* Not getting enough sleep

* Stress

* Alcohol

* Flashing or flickering lights

* Menstruation (periods)

* Missing meals

There is also an episode of epilepsy that is caused by laughter. The epileptic laughs and has a seizure thereafter. THIS HAS ALSO HAPPENED TO ME!!!

www.epilepsy.org.uk

www.webmd.com/epilepsy

Seizure statistics and things you should do

In about 2/3 of those diagnosed with epilepsy, the cause is unknown

Epilepsy is not a mental illness, but it can lead to anxiety.

1 in 26 people will develop epilepsy in their lifetime.

There is no cure for epilepsy.

Imagine....having NO CONTROL OVER YOUR BODY

Things to do if someone is having a seizure:

NEVER put anything in or near their mouth

Make them comfortable

Turn them on their side

Do not restrain them

Stay with and reassure them

They say that it takes about 3 to 8 days to recover from a seizure if there are no other injuries from a fall. However, pay attention to the laws in your state. You may not be able to drive until 6 months AFTER your last seizure.

Epilepsy is no joke, it's deadly serious!

It is estimated that 50,000 people die each year as a result of seizure related causes such as prolonged seizures, accidents, and sudden unexpected death in epilepsy.

*I have a Pinterest account about Epilepsy, if anyone is interested.

Effects of Epilepsy in Adults

Did you know that people with epilepsy have a higher risk of suicide, particularly in the first 6 months after being diagnosed with the disorder? It is highest among people with an accompanying psychiatric condition, such as depression, anxiety disorder, schizophrenia, or chronic alcohol use. Mine has always been an anxiety disorder. All antiepileptic drugs can increase the risk of suicidal thoughts and behavior.

Overall health: Patients with epilepsy usually describe their overall health as "fair or poor," compared to those who do not have the disorder. People with epilepsy report more pain, depression, anxiety, and sleep problems. Their overall health state is comparable to people with other chronic diseases, such as arthritis (which my mother has in her hip), heart problems, diabetes and cancer. Treatments can cause considerable physical effects, such as osteoporosis and weight changes.

Estrogen appears to increase seizure activity, while progesterone decreases seizure activity.

10 Common Health Reasons for Fainting

There are many reasons why a person can faint, and it can often be difficult to pinpoint the cause. It can be anywhere from low blood sugar and dehydration to heart complications and seizures. Some causes aren't serious while others can be dangerous.

When people faint, they usually experience other symptoms before doing so. Some experience dizziness and nausea, while others feel like sounds are fading away and their vision will change. It is wise to notify someone that you feel like you are going to faint, and lay yourself on the floor, to prevent any other injuries.

1. Dehydration - Fainting is referred to as syncope and can be the result of dehydration. When a person feels dehydrated, they may feel dizzy or lightheaded, have a headache, and urinate less frequently. Once they become severely dehydrated, fainting can occur. Dehydration causes low blood pressure and the longer you are dehydrated, the harder it will be for your body to stabilize your blood pressure. As low blood pressure continues, the risk of fainting increases.

(I have had a history of low blood pressure.)

2. Coughing - This may not be obvious, but it is actually common. You wouldn't faint from small coughs here and there, but coughing fits that last a while. That can cause trouble breathing, pain, or the need to bend over from the stress on your body, can lead a person to faint. Coughing fits cause changes in blood pressure, which is why it's a common reason for fainting. Not only could you experience lightheadedness, dizziness, or even fainting, chronic coughing isn't normal and should be investigated.

(I have had a coughing fit that has led me into taking pain medication, due to the fact that I popped out a rib spur in my back.)

3. Cardiovascular Conditions - One of the common and very serious heart conditions that can cause fainting is an abnormal heart rhythm. (arrhythmia). This can be a warning sign for cardiac arrest.

4. Medication - Side effects to medication can cause fainting.

5. Hunger - Other symptoms that can happen before you faint: lightheadedness, tunnel vision, a slowed heartbeat, dizziness, nausea, and excessive sweating. If you faint because of hunger, you will probably feel some of these symptoms. Eat regular meals to avoid fainting from hunger.

6. Diarrhea - Viruses, certain foods, medications, stress, and underlying medical conditions can cause diarrhea. However, this can cause other problems, and serious issues to dehydration. If diarrhea is random, and you are feeling well in a couple days, it is likely not cause for concern. However if you experience it regularly, you should see your doctor. It can be issues from food sensitivities, and viruses to Crohn's Disease and Irritable Bowel Syndrome. Chronic issues should not go unchecked.

7. Panic and Anxiety attacks - During such attacks, breathing becomes disrupted. Some can hyperventilate, which raises the heart rate and drops blood pressure. This causes a person to feel faint. The person must get their breathing under control. It is important to learn how to cope during episodes of anxiousness and panic because doing so can prevent dizziness, feeling lightheaded, or in worst cases, fainting. It is detrimental that you focus on relaxing and taking deep breaths. Panicking from hyperventilating will only make it worse. Therefore, you should be prepared to warrant off attacks.

(I had an anxiety attack while I was in the ambulance June 2016 after a car accident. They aren't fun. However, the EMT's were trained to deal with such attacks.)

8. Diabetes - This causes high blood sugar levels and requires lifestyle changes and sometimes medication. Maintaining glucose levels can be difficult. People with type 1 diabetes require insulin injections for the rest of their lives and must follow a special diet to manage their disease. It is much less common than Type 2 diabetes, which can often be managed through diet, exercise, and monitoring of blood glucose levels.

Fainting can occur with both type 1 and type 2 diabetes. When a diabetic stands up too quickly or doesn't eat enough, the risk of fainting increases. Taking too much insulin causes a drop in blood sugar that can cause fainting, and high blood sugar levels can do this also. People who don't know they have diabetes could suffer from fainting spells, and this symptom could diagnosed diabetes.

(My maternal grandmother had type 1 diabetes. After it was diagnosed, she had to give herself insulin shots for the rest of her life. She passed away at 80 years old.)

9. Anemia - A condition where your body lacks necessary amounts of healthy red blood cells to carry the required oxygen to your tissues. This causes people to feel tired and weak. When anemia gets worse, so do the symptoms. Fainting is a pretty severe symptom. It can, eventually, go away, if you make the conscious effort to deal with the condition. There are many different kinds of anemia: iron deficiency, vitamin deficiency, anemia from a chronic disease, hemolytic, sickle cell, and aplastic. It is important to know if you have anemia, keep your doctor informed of the symptoms you experience because sometimes there are other conditions causing the anemia that needs to be treated.

(I have been diagnosed with iron deficiency anemia, and we are still actually searching for the underlying cause of the condition. Still hoping it is nothing serious.)

10. Seizures - This is one of the most serious reasons for fainting. The symptoms of a seizure are frightening. You might lose consciousness and not remember anything, but some may cause violent shaking and difficulty speaking. Seizures are not simple conditions. There is likely an underlying condition that goes beyond a drop in blood pressure or sugar levels. It can happen without any previous symptoms or warning signs, and often takes people by surprise.

If you or someone around you is feeling faint, sit or lie down and elevate the legs, if possible. Many people suffer worse injuries from the act of fainting itself, such as; they could hit their head, break an arm or leg, fall down a flight of stairs, and so on. Therefore, if you experience any symptoms that could be a sign you are going to faint, make sure you stop standing to avoid getting hurt.

(This has happened to me several times. I have hit my head on a wall. Put a limb through a wall. Knocked out a tooth in a fall. Once not remembered speaking during my seizure. Medication is the only real control, unless one looks for an evasive surgery.)

In Closing

Please get educated about this disorder. Don't be like my ex-husband and children and not understand what causes anxiety in any type of disorder or ailment. Understand the disorder. Understand the anxiety. Understand your loved one. Don't let your loved one live with this kind of disappointment!! Take the time. Everyone needs to feel understood. ESPECIALLY ABOUT SOMETHING THAT MAKES A PERSON FEEL ABNORMAL!!!

www.epilepsy.com

If you must, leave the people that laugh at your fears and anxiety. You will find the people that will understand. Or people who will want to understand. On November 17, 2015, I had to explain my Grand Mal seizures to someone that I knew since I was 16 years old, because she knows someone that has Petit Mal seizures. I explained the differences between Grand and Petit Mal seizures to her, and hope that this person finds the understanding that she needs to lead a fulfilling life.

I will continue to speak out on this issue, until I no longer have breath in this body. My boyfriend was diagnosed with Cerebral Palsy when he was 2 years old. Cerebral Palsy tends to also go along with a seizure disorder. However, he has been fortunate to never have had a seizure. He has gone through so much physical therapy for his own battle, that he has come across others that have had the seizure disorder as well as the Cerebral Palsy. I find that people that have had to fight such battles grow up much quicker than those who have not. Especially those children that have to battle childhood cancers. They grow up to be some beautiful adults.

**My health/genealogy DNA test from 23andme.com gave me some new results after uploading my raw data to gedmatch.com. I have a chromosome abnormality on Chromosome 20. Ring 20 causes seizures. It tends to not be inherited. It was just a fluke that happens upon conception of that individual child. There is nothing the parent did wrong to cause this to happen. It just did. I am an information guru, so I am glad to know, now, what I didn't know then. I urge you to get to know yourself by having the DNA testing done. You will learn more about yourself than you ever thought possible.

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