Epilepsy: "Stop looking down on us just because you don't know!"

Hello Teresa74, that you for agreeing to share your story with us here on Carenity. Can you tell us a bit more about yourself?

My name is Teresa, I am now 46 years old, and I started having partial seizures with loss of consciousness at the age of 7, because the attending doctor when I was born refused to listen to my mother, who wanted a caesarean section because I was big, and removed me from her womb forcibly with forceps.

You were diagnosed with epilepsy when you were very young, how did it manifest itself? 

The first time I had a seizure, I was at home with my family and suddenly, my mother was asking me "Are you OK?". I couldn't understand anything or why she was asking me. My parents took me to the ER where they did a test and a doctor told them that I had epilepsy.

The next day they took me to school and my parents explained to the headmistress what was wrong with me so they could tell my teachers.

A few weeks went by and I noticed that my classmates' parents were separating them from me, but I didn't understand why. So little by little I was left without friends, without birthday parties for my classmates, I was alone. A few weeks after I had my first seizure, my parents gave me a gold chain with a badge with my name, surname, my parents' telephone number and "Partial epileptic seizures" on the front. This is the first thing you should give to a child or adult in case it happens in the street.

I started taking sodium valproate which only made me put on weight, even though I didn't eat junik food and all the kids at school picked on me. Even though it was a good school and the teachers tried to make peace with me, not having friends and picking on me just made me cry every night. I would go to the beach in front of my house and ask myself: "Why, what have I done to not have any friends and to be picked on?"

This meant that at the age of 10, while I was looking at the sea, I was on the verge of committing suicide, but at the last second the image of my mother came to me and I thought "My mother is already hurting for me, but she will suffer even more if I am not there". 

My parents took me to many private neurologists, one stole from them because he was no good, another one almost killed me when I was 14 years old because he gave me too many pills and they had to pump my stomach. My parents were going to take me to Germany, but a Spanish doctor who studied there came to my city. He was a good neurologist who did everything he could to cure me, and I improved a lot, but he eventually sent me to Barcelona because there were good doctors with better equipment.

When I was 18 I wanted to study and I started a one-year course in office administration, I liked it and I wanted to study more. I started vocational training at the age of 20, my parents thought that I wouldn't get anywhere because of all the doctors, but here's what I said to them: "I want to and I'm of age, so I've already enrolled at the institute". I got my administrative degree and my accounting degree in the same year, and I tied for top of the class among the accounting students with a "healthy" boy. If you feel like studying, do it and you will prove to yourself how much you are worth, at least in relation to the subject you are studying. My parents are proud of me.

I started working at a real estate agency where, for a year, an abusive coworker kept calling me "Crazy". If it were to happen now, I would have replied: "Either you stop shouting at me and calling me crazy, because I'm not, or I'll have to report you". Don't hesitate to pick up your phone and record if you are mistreated, and if talking doesn't calm things down, then report it. Then I worked for 17 years in a Gestoría (a private agency in Spain specializing in legal and administrative work) as an administrator and accountant. I advised companies and was the boss's right-hand man. But just before COVID started he retired and I became unemployed.

At 32 I went through severe depression because I wanted to get pregnant, which my doctors said was dangerous. Because of the medication I was on, the child could be born with developmental problems and I could miscarry along the way. We decided not to have children. Many other epileptics have not hesitated and have had children, and they are fine, but it takes a lot of planning to get pregnant with epilepsy: a year before, you have to inform your doctor in case they have to take off or lower your medication, and have everything explained to you. For men, if the disease is not degenerative, there are usually no problems.

After years of having focal aware seizures, could you tell us what they were like for you? What advice would you give to members on how to manage them and cope with them as best as possible?

When I was 8 years old, my parents explained to me about my medical care, the disease and what happened to me when a seizure started: I would suddenly stand still, my eyes would go blank, my hands would shake and then I would be fine as if nothing had happened. 

I've always tried to explain that my auras (focal aware seizures) give me a feeling of déjà-vu, like a feeling of warning or that I've seen things before. The advice I could give is: "If you're having this feeling of déjà vu, then you've probably just had an aura, but don't focus too much on the feeling. Just concentrate on the person you love the most and what makes you laugh. It's hard to concentrate at first, but little by little you will. Tell someone close to you; if you are at home, turn down the volume of the TV or radio; sit down if you tend to fall down during your seizures; if you have relaxing music that sounds like the sea or whatever you like, play it. And make sure that others around you don't bother you or say anything to you until you are 100% better". If they all come at you at once and ask you too many question, it can provoke a second seizure from the stress. It's like when you are sleeping and little by little you wake up".

About 11 years ago, you underwent surgery that eliminated about 90% of your seizures, what surgery was it? What was the experience like, and the recovery?

I think that at the time I tried all the medicines available in Spain. When I was not cured with medication, I was advised to undergo surgery, because I had about 50 seizures a month. Normally, when they see that you are not cured and they know exactly where your seizure focus is and can be operated on, that is when they suggest it. 

My mother, my husband and I went to see the neurosurgeon and he explained to me that my seizure focus was in my face and that because of the use of forceps during my birth, I had a wart. They also informed me that nothing would happen to me during the operation, because they would pass their instruments through a hole that we all have in our heads. They would not cut my hair or anything else and they guaranteed that they would eliminate 50% of my epilepsy. Before making a decision, I asked my mother and my husband for their opinion, and they both said: "It's up to you, it's your body". My decision was already made, I looked at the surgeon and said: "Let's do it".

It took about 7 months to operate on me because I had to undergo several tests. On the day of the surgery, they took me down to the OR telling jokes, and they put me to sleep laughing. I woke up in a room full of doctors and in the background the surgeon, who is about six and a half feet tall, said to me: "Do you know who I am?", my answer: "Of course I know you, I've seen you on TV!". I woke up in a very good mood.

The operation took at least 5 hours. When my family came to see me they noticed that there was something wrong with the way I spoke. Before the operation I spoke slowly. I was in hospital for 10 days and felt no pain.

As for surgery marks or scars, nothing was visible, my hair covered them up. Other people who have undergone the same operation also say that it does not hurt, although your head may hurt a little if they touch the part of the brain during the operation, but this is not permanent, it goes away. 

How have you been feeling since the surgery? Have you had any seizures since? How has your life improved?

They eliminated 90% of my epilepsy and thanks to this, now I only have an average of 5 seizures a month, although some months I don't have any at all.

According to neurologists, studying Mindfulness can help to avoid seizures, and this has been true for me.

You talk about feeling contempt from others, their ignorance of epilepsy and lack of information, and you fight every day to make this condition understood. What actions are you taking to raise awareness about epilepsy?

I am trying to go to schools to educate about epilepsy like you see with other conditions such as autism, because you can find people with epilepsy in all fields of work and people don't know what to do in case of a seizure. On three separate occasions I have helped patients because they have had a seizure in public. One of them happened in a grocery store and it was the first time the person had had a seizure. I've also studied first aid, which is also good for friends and family of someone with epilepsy.

When the whole COVID situation dies down, I'll be going to a school to teach what to do if this happens to a student. Normally I explain that if they fall, you shouldn't put anything in their mouth, or leave them alone, among other things. I'll also be working with a group of therapists as a coach, to teach everything on a voluntary basis. 

Three months ago you created your Facebook group "La epilepsia en Tarragona" ("Epilepsy in Tarragona"). What was your goal in creating the group?

I created my group, "Epilepsy in Tarragona", three months ago for my city, Tarragona, but it is for all Spaniards who want to connect. I also participate in other online groups or associations.

My aim is to help by giving advice, responding to doubts, providing information. I try to keep it updated with all the latest news and information that comes out, such as the seizure monitors or watches for children or seizure alert dogs.

So don't hesitate to reach out, if you need me you know where to find me.

Is there anything you'd like to say or advice you'd like to share with other people living with epilepsy?

This illness can come at any age or it can be from birth. I know a woman who had her first seizure after her retirement. It can be a stroke, a tumor, the heart or something else. 

Try not to think about the "Why?" with epilepsy. Make sure to avoid tobacco, alcohol, drugs, and be careful driving, many have been hurt with these things. On the first day of work or of a course, make sure to tell your colleagues or teachers about your condition and what they should do in case you have a seizure. Avoid the lift, even if it's only the first floor, avoid the sun because it can be triggering for your seizures... I would tell you more things, but it really depends on the person. The things I mentioned are triggers for me.

The support groups I'm in say that I'm a great help, they're delighted! According to them, I should go on TV to explain epilepsy.

And last but not least: "Stop looking down on us just because you 'don't know'"! Anyway, where I'm not wanted, I don't go. I am a fighter, who could have told me when I was a child what I would become and all the different roles I have taken on to help people? 

Any last words?

When I was younger, I invented a phrase that I used to respond to people who looked down on me because of my illness. I've met a few of these people many years later because they themselves or their children have had to go through worse experiences than us epileptics. I have never refused to help.

Here is the phrase:

"Never look down on anyone, because you don't know what can happen to you or to the person you love or will love the most."

Many thanks again to Teresa74 for agreeing to tell us her story.

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