Epilepsy Blog Relay: Lily on living with Temporal Lobe Epilepsy

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Lily’s Story

I am a 52 year old Mexican American woman living with epilepsy. I was diagnosed with epilepsy in 2014. My story is similar to others but we are all unique. I have temporal lobe epilepsy and suffer from absence and partial seizures.

For 22 years, my career included work as a pre-school teacher, a nanny, an elementary public school teacher and later a university and college student advisor. My career was booming. I loved traveling, and driving long distance.

Epilepsy diagnosis

One day in October 2014, I was working with a student in the computer lab. As she sat next me, she asked me questions about what classes she could register for the Spring semester at San Antonio College. I went silent. I could hear her ask me if I was okay, but my mind was “floating”. There is not much recollection about that day. After being in the emergency room at Metropolitan Methodist Hospital in San Antonio for several hours, and the many tests given, I was admitted. I had several seizures during my five days at the hospital. Dr. Silva, a hospital neurologist, diagnosed the epilepsy. There were many unsure answers to the questions he asked.

According my mother, I had several hospital stays as an infant for high fever, that resulted in febrile seizures. In my early child hood years, I was a slow learner, unable to make high grades, no A honor rolls. I recall several times in my life when I felt “out of my body” experiences.


Related article: Survival tips for adults without a driver’s license


VNS to manage seizures

I took several anti epileptic medications, but the still made ER visits on a monthly basis. On January 23, 2018, I had surgery. I had a VNS implant, which has helped me cope with my seizures. I know I still have them, but at least now I know what to do before, during and after seizure activity. I have taught my best friend and my family what to do when I have an episode.


NEXT UP: Be sure to check out the next post by Chanda at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

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Epilepsy Blog Relay: Leila on PAME and SUDEP

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Leila on PAME

Over the summer, I was fortunate to attend the Partners Against Mortality in Epilepsy conference with Living Well With Epilepsy founder Jessica Smith. It was an interesting and meaningful way to come together with others in the epilepsy world to discuss and address SUDEP, with the ultimate goal of reducing and eliminating Sudden Unexplained Death in Epilepsy.
I attended plenary sessions where all attendees gathered to hear a group of speakers, and small breakout sessions on a variety of topics related to SUDEP and epilepsy. Those who attended included those from the medical field, pharmaceutical industry, social services, therapists, researchers, and loved ones whose family members have passed from SUDEP. Every story I heard was moving–hearing stories in person was so moving. I’m always sad to hear these stories but was all the more inspired by the strength of those who are telling them.

A bit of hope

It filled me with hope to hear from the professionals doing research on SUDEP and the progress that is being made each day. We are learning more about SUDEP, the specific markers they look for in the brain when identifying SUDEP, and how seizure detection is advancing. It is safe to say that the epilepsy community at large is growing and we are using that growth to support each other in so many ways. I can’t imagine how much more we will know when the next Partners Against Mortality in Epilepsy conference is held.

Leila’s take on Living with Epilepsy

I know I cannot go back in time and change events. I know that epilepsy has also had a positive impact on my life. And I know that no matter how I look at it, my epilepsy is not going away.  So, this is when I rely on my loved ones, to help me through the days I struggle.

I rely on the epilepsy community, to remind me that life is not all bad with epilepsy. And I rely on myself to ultimately pick myself up, put one foot in front of the other, and move forward with my life. At the end of the day, epilepsy has impacted life in good and bad days. The only way to get through the bad days is to focus on the good.

Special thanks to the Danny Did Foundation who provided gratis registration to the PAME Conference, which made our attendance possible.


NEXT UP: Be sure to check out the next post by Lily at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

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Epilepsy Blog Relay: Fran encourages others to seize adventure

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Francesca Turauskis is founder and editor of Seize Your Adventure. She is also an inspirational speaker. Fran has taken a moment out of her busy schedule to share her epilepsy story during the Epilepsy Blog Relay.

Fran’s Story

My first seizure happened more than 7 years ago, when I was 22 and in my last year of university, but it is only recently that I have discovered and become part of ‘the epilepsy community’. That first seizure was so confusing (not least because of the 30 minutes of post-ictal blankness). I had no history of epilepsy in the family but I did have episodes of syncope (fainting) in my teens, so the neurologist decided that this was a faint. But I remember the aching muscles after the episode, and the rush of noise in my ears. The diagnosis of fainting didn’t feel right.

A year later was the second ‘one-off’. This time, I gave my boyfriend the “most effective wake-up call, ever” when I had a seizure in my sleep. I had gone to sleep without a top on and woken up with some wires attached to my naked chest (and they say epilepsy isn’t sexy…) and a mask was over my face. If I was more of a morning person, this would probably be the point I freaked out, but instead I let my boyfriend maneuver me into clothes and into the ambulance.

This neurologist agreed it was a seizure – but so far away from the first one, a seizure not worthy of the name epilepsy, yet.

An epilepsy diagnosis

It was around this time that I was working with children with special needs, some of whom had epilepsy. I underwent epilepsy training, was witness to many tonic-clonics and absences, and was able to get an idea from the other side. Despite this training, I didn’t recognize when I started getting auras and partial seizures a few months later.

Looking back, I know that I was ignoring something I shouldn’t. I was starting to hear voices – which should have told me there was wrong with my head. External sounds would be muted, and I strained to make sense as lots of disembodied talking whispered to me at once. I would pause, and it would pass. This happened a couple of times, until one day at work I heard these whispers, and then I lost time. I was in the staff room, and then I was on the other end of the building. I felt sick. My head hurt. I could barely focus and barely made it home on the bus. Later that evening, I found a plate from the staff kitchen in my bag – apparently my seizing brain thought that was where it belonged!

I think it was that evening my boyfriend saw me have another one. To be honest, they begin to blur. But at least the cluster of them meant the neurologists could confirm it: I have epilepsy. Tests ensued – the electrodes glued to my scalp, the CT scan, the light sensitivity, the sleep deprivation. All to give me the really useful diagnosis of ‘low seizure threshold’ with no noticeable trigger.

Tengo Epilepsia

Ironically, it was from the moment they told me I could say “I have epilepsy” that I began to feel more disconnected from the phrase. I started taking a medication, which controls my seizures and allows me to live a mostly-independent life. So when I was hitting a rut in my work life, there didn’t seem to be anything stopping me from going on an adventure. I decided to walk 500 miles of the Camino de Santiago in Spain, by myself. It was hard at times, and I ached all over! But it was no worse than it feels after a seizure – we all know one can drain you for days.

But epilepsy meant that I could not be as complacent and off-grid as I would have liked. I had the extra worry of getting enough medication to last the full length of my trip. Even without the seizures, the price of travel insurance was increased. I have to inform flight attendants whenever I get on a plane by myself and I had a little tag on my bag shouting “I have epilepsy” (the Spanish is tengo epilepsia) to anyone who is observant enough.

An Advocate for Awareness – and Adventure

As I walked, I talked to as many people as I could about my epilepsy  – people from Spain, Portugal, US, UK, Germany, Peru, Argentina – most of whom knew little about the condition. Everyone had questions, the most common one being, “what do I do if you have a seizure?!“. Fear for me (of me?) was the expression I saw in most people and I saw that lack of awareness was a universal problem. When I returned home to no job,  I wrote about my story and I found myself contacted by people with and without epilepsy. Some had taken on similar challenges, and some had never considered that adventure could be possible for someone like them. Through my adventure, I suddenly found that I was connecting with the epilepsy community and becoming an advocate for awareness at the same time.


Related article: Clair and Riley share tips on epilepsy first aid


In Spring 2018, I launched Seize Your Adventure,  a unique platform that showcases positive stories of people with epilepsy defying expectations. The website has three aims: to share adventure stories from people who don’t let epilepsy map their lives; to encourage others to explore their own limits; and to spread awareness for epilepsy in all its guises. I’m enjoying collating the mixture of creative non-fiction, interviews and articles, photography and videos, and connecting the epilepsy and adventure communities. The path to my diagnosis was very hard. But my path going forward is making itself clearer, with crowdfunding imminent and collaborations to look forward to.

If you have epilepsy and are into adventures, please get in touch to tell me about it!


NEXT UP: Be sure to check out the next post by Leila at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

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Epilepsy Blog Relay: What’s the deal with alcohol and epilepsy?

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Epilepsy in Everyday life: Interactions of Alcohol and Epilepsy Medication

The theme of this week during the Epilepsy Blog Relay is, “Epilepsy in Everyday Life”. When this category was given to me I played with a few different ideas. I even started asking around my group of friends and family what was something regarding epilepsy that no one really told you when you were first put on AED’s (anti epilepsy drugs) or something you were curious about. The common theme that kept coming up was, can you drink while you are on AED’s?

I think this is a topic that many people with and without seizure disorders ask about a lot. It is also one that some of us are fearful to ask our doctors. There is that nagging gut instinct of what the answer will be.

According to epilepsy.com, “Seizure medicines can lower your tolerance for alcohol, so the immediate effects of alcohol consumption are greater. In other words, people get drunk faster. Rapid intoxication is a big problem because many of the side effects of these medicines are similar to the acute effects of alcohol itself. If you are sensitive to alcohol or seizure medicines, you may find the combination even worse.” In other words, those on seizure medications can feel more intoxicated after having a smaller number of drinks than others around them.

I also found a few tips for those pondering the question of whether or not to drink:

Reasons not to drink:

  • According to the Epilepsy Society, “Alcohol disrupts your sleep. Seizures can be triggered by tiredness for many people, so poor sleep makes seizures more likely to happen.”
  • Driving while on AED’s and alcohol can be extremely dangerous. Both AED’s and alcohol can affect your awareness, reflexes, coordination, and ability to drive safely
  • Large amounts of alcohol in a short time frame is not encouraged for people on anti-seizure medications.

Moderation is key

  • According to the Epilepsy Foundation, if you must, then definitely drink in moderation.
  • According to the Mayo Clinic, “The biggest risk is with people who binge drink or use alcohol excessively. This can lower seizure thresholds.”

This is a topic that many people with epilepsy avoid (me being one of them). Personally, for most of my life I have not wanted many people to know that I have Epilepsy nor did I want to be treated differently than anyone else. It is a very difficult task. I know this sounds “cliché” or silly, but do not be afraid to say no when you feel uncomfortable in situations regarding drinking. Also, if you are in social situations make sure that someone around you knows that you have epilepsy and are on medications in case something happens.


Related article: Epilepsy isn’t my only story


How to handle a social situation if you decide not to drink

If you are at a bar or a cocktail party, ask the bartender for a glass of tonic water and lime or ginger ale and lime. You don’t even have to drink it. Simply by carrying it around you will fend off those pesky, “How come you are not drinking?” questions. The glass looks like a gin and tonic and people won’t bat an eye.

If you are at a party at someone’s home fill up a red cup with water. People are unlikely to peer over the rim of your glass to see what you have in there.

And always turn the question back on whoever is asking. If someone asks, “What are you drinking?” just ask them “What are YOU drinking?”. It could help you to avoid an awkward encounter, but there is always the chance that you might have to buy them a refill.

Now your turn: How do you handle epilepsy and alcohol?

Comment below!


NEXT UP: Be sure to check out the next post by Fran at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor
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