I don’t remember when I had my first seizure- but I do remember the first one that truly altered my life. I was walking home from school early into my grade 10 year and all the sudden I couldn’t see. I couldn’t breathe, there was pain running up and down my entire body and everything seemed so loud. This was also the moment that my depression first grabbed onto me- though for the longest time I didn’t know the connection between it and my Temporal Lobe Epilepsy.

I didn’t tell anyone what had happened that day but over the next year, my downward spiral was obvious. I would have blacked out moments daily (absent seizures) that were accompanied by pain and an overwhelming fear. After this I would slump into an overwhelming depression. My anxiety held me hostage in my bedroom and my eating habits became disordered as a source of control.

Then there were the visions, hallucinations, dreams, and voices. I constantly heard voices that sounded like someone was standing just behind me. I would see things that didn’t exist but manifested in weird wonderland type incidents. I would see trees walking, pots and pans dance across the room, I woke up one night and was convinced my bed had been moved outside. I had always seen the world differently but had never known why. Teachers always had labeled me as a day dreamer- little did they know the cause behind it.

In grade 12 I dropped out of high school. Well… sort of. My parents helped me homeschool myself to graduation- but I couldn’t attend many classes. I was admitted to a treatment center for mental illness after a suicide attempt. I spent months in and out of there, and I am both thankful and sad about it. I am thankful to the center for keeping me safe, I am sad because I now have seen how broken our system is with things it doesn’t understand.

Highschool Graduation. Just at the start of recovery.

One of the major problems facing people with TLE and their families comes from doctors and specialists who don’t listen to the patient but forge ahead with the easiest and quickest diagnosis. You must be schizophrenic if you hear voices. You must have migraines if you have head pain and auras. You must be bipolar if you have trouble concentrating or have hallucinations or have wild mood swings.

So, the doctor prescribes what may be the wrong medication or treatment, which not only fails to address the condition, but also may cause additional physical, emotional, and psychological troubles for the patient and for the people around the patient.

I am very thankful to my family for being so patient with me and searching for an answer. They laid with me endless nights, drove me to hundreds of appointments, and argued with dozens of doctors till I was properly diagnosed.

My two sister, my mom, and myself in New York the summer after grade 12- during the end of my recovery phase.

Once I received a correct diagnosis I was put on a medication to calm the seizures down. I occasionally still have seizures, usually triggered by stress, lack of sleep, or specific sights and smells. However, I’ve learned how to deal with them and taught those close to me about them.

From a High School drop out to having Multiple Degrees.

 

In the past few years of my life, I accomplished things I never dreamed of during the darkest days. My disordered eating is under control, my depression mostly stays at bay, and my anxiety becomes easier to deal with. I occasionally still hear voices but they are not nearly as prevalent as before. I’ve graduated from both Capilano University and Simon Fraser University, been president of my sorority, became Miss. Coastal Vancouver, run my own non-profit, gotten into the corporate world, and become an entrepreneur. I’ve learned anything can be accomplished with the support of the team around you.

Although epilepsy is often a source of frustration, anxiety, and near-despair, epilepsy in some ways has been my great asset.  I have learned to accept the unknown, relish in
my small successes, and step out of my comfort zone to reach my goals. TLE allows me to see life in a unique way that I wouldn’t trade for the world.

Happy and Healthy in 2017

14 comments on “Living with Temporal Lobe Epilepsy: the connection between it all”

  1. Hey Kristine…I had no idea! Kudos to you for pushing through and to your family for being your voice when you couldn’t! I wish more families did this for their young people. I see you accomplishing big things. Just keep going! 🙂

  2. I too was misdiagnosed for many years and it is true it can cause so much more chaos in our lives. I’m so glad you had the support of your family to help fight your corner.

    This is a wonderful and inspiring story of determination and courage – thank you for sharing 🙂

  3. Your story is so inspiring, from one anxious Greek-life lady to another: congrats on all your successes and I wish you the best of the luck in the future! Much love xxx

  4. Such a remarkable story. I too suffer from Temporal Lobe Epilepsy, mine is on my left side & so very close to my brain. I was diagnosed at the age of 15, but had it a year or two beforehand. I too go through mild absences & what I call ( sick moments). I’ve had several major seizures where I’ve ended up in hospital, but they’ve been few & far between. Many of my absences are caused by watching tv, flickering lights & the main cause, stress. I was offered to have brain surgery a year ago to get it fixed, but my neurologist said there would’ve been a chance I would’ve come out worse off than I am now due to the position of where it’s situated. I calm my mind by writing my own poetry & about four years ago, I wrote my own book & had it published over in the United States.

  5. Your story is amazing but you were yr 10…aged 14ish….I suffer with epilepsy and mine started at 15….it’s my thyroid that caused all of the problems….My thyroid is stable and has been since having my daughter 13 years ago. Obviously I’m on medication for both. Fingers crossed I’ll stay that way…have a look at you monthly cycle etc…

  6. I read this and just said Wow! You are very courageous and strong! I too suffer from TLE (and a few other types) and fought with Dr’s about what was happening. They told me panic attacks and anxiety. They said sounds were my imagination. Going to Mayo was the best thing for me. I was correctly diagnosed and trying different treatments. I was given articles and blogs to read but yours is the first that really described what I see, hear, smell. Thank you for writing this and letting everyone know. Epilepsy needs more awareness!

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