Cristina & uncontrolled epilepsy

  • March 6, 2024
  • 4
In this article

Meet Cristina, who comes from Miami, Florida! She is a mother who lives with uncontrolled epilepsy. Read Cristina’s epilepsy story and learn about her experiences.

Cristina’s life

I was born and raised in Miami. Both of my parents are from Guatemala, and they met in Miami during the late 1970’s. I also have a younger brother who now lives in New York. In 2007, I met my best friend, and he's now my husband. We currently have one son, Sebastian, who was born on September 11, 2016, and we purchased our first home in 2022.

Find out more: Understanding epilepsy in the Latino community

Tell us about your epilepsy story

My life with epilepsy began when I was around 14 years old. Up till then I was “healthy”, and I still am healthy to this day. During my first seizure, people thought it was an asthma attack and quickly put me on medication. 

The second episode happened when my mom and I were home. She grabbed the inhaler and kept telling me to inhale repeatedly because at the time my “asthma attack” wasn’t going away. I inhaled too much, became very dizzy and passed out. The doctors began to run more tests and witnessed some of my episodes which is when I was diagnosed with epilepsy.

Seizures during pregnancy

My worst seizure ever happened in June 2016 when I was six months pregnant. My husband and I were living with my in-laws at the time. One day, I went to take a nap while my husband was at work. My father-in-law was at home and came to check on me and found I was having a seizure. I remember going to take a nap then waking up in a bed at Jackson Memorial hospital in Miami. I was in a coma and woke up, but then fell back into a second coma for about two weeks. 

Due to my being six months pregnant, the treatment team decided the next step was to pump steroids into my son’s lungs in case they had to perform an emergency C Section. I woke up from the coma and three days later I gave birth to my miracle baby! 

My family was told that it was going to take about a year to recover with speech therapy, occupational therapy, physical therapy and more. 

Get ready: How to prepare for pregnancy with epilepsy

The post-coma recovery

When I woke up from my second coma, my throat was on fire, I could only speak slowly, and my words were slurred together. I was released from hospital a couple of days before my birthday dinner. I was not able to communicate in the evening, but I remember the positivity from people talking about our amazing memories together. I regained my speech after two weeks and, fortunately, did not need any other kind of therapy. Soon enough, I was walking and talking as if I hadn't even experienced two comas. 

Once Sebastian was born, I did not want to leave his side. I felt so lucky to see his face and to have the chance to be his mom. Every day that I wake up I am thankful for another chance to be his mom and a wife to the best man I have ever met. I became a stay-at-home mom and took care of the household, which was probably prolonged because of COVID.

What seizures do you experience? 

I have all kinds of seizures which makes it more difficult to find a medication that will help control them. I feel like through my early teens to now in my late thirties my seizures have changed. 

I used to have some seizures where I would bite my tongue. I remember the pain I would feel on the inside of my cheek with blisters and my sore tongue, and all I could taste was blood. Thankfully, I haven’t had those kinds of seizures for about 20 years. Four years ago I had a seizure that made me wet myself. I had about five of those episodes, my husband and I had to get rid of that mattress, which I found very embarrassing. 

But the worst type are the ones that stop me from breathing. It feels like I am being choked - I’m gasping for air and drooling. When the episodes end, my lungs and chest feel sore and I feel like a deflated balloon. It’s hard to get my breathing back to “normal”, and this seizure type is the worst for me.

Finding a neurologist

I have never found a neurologist that I have connected with. I’ve met all kinds of neurologists in Miami and even in Guatemala. I had one neurologist who told me not to get pregnant. Obviously I didn’t listen - especially as I wanted five kids, maybe even more.

Learn more: How to find doctors who specialize in epilepsy

After every test, I could never get an answer. I have lost count of how many MRI’s, EEG, CT-Scans, or overnight stays I’ve had. Blood tests always come out as normal and that I am healthy, which I am grateful for, but I want to know why. 

As of now, I have never been able to get an answer about the underlying cause of my epilepsy, and I have learned to accept it. Since I started to see my new neurologist three years ago I’ve begun to live a somewhat “normal life” . I am more confident with myself now. 

Finding support in the community

I did my first walk for epilepsy last year and since then I have met so many powerful human beings that motivate me, give me strength, and hope for the future. I connected with a lot of people on Instagram, and I am meeting a lot of people in the community with epilepsy that understand me. This community gives you hope, support, respect, and love. I began to share stories from my life to bring awareness to others.

Find out more: How to find epilepsy support groups

Message to others

I would tell someone recently diagnosed that you are not alone - it took me 22 years to understand that. This community is full of knowledge, faith, hope, support and respect, which is what we [the people with epilepsy] need.

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