My Story

My son’s birthday.

Christmas Day.

My tenth anniversary.

The Fourth of July.

Last Wednesday.

Today.

These are some of the recent days in my life that have been interrupted by seizures.

In many ways, the story of my Epilepsy is a story of disguise.

Different people can get Epilepsy in different ways.  Soldiers can have Epilepsy as a result of a traumatic brain injury sustained on the battlefield.  Some children may inherit Epilepsy as a part of a genetic syndrome that causes seizures.  My Epilepsy was caused by a prolonged seizure associated with fever when I had a virulent case of influenza at 16 months of age.  My first seizure, which lasted over 30 minutes, left a scar deep in my brain that served as a starting point for my future seizures.  The complex partial seizures, or seizures that only involve part of my brain, that I have had since adolescence frequently sneak up and dance around the edges of my consciousness, stealing slivers of my alertness just enough to leave me tired and spent after 15 – 30 seconds of involuntary swallowing and clenching of my left hand.  And although the partial seizures are subtle enough that only those closest to me would know something was amiss, they leave me feeling as if I have been battered, bruised, and in a fog for the rest of the day.

I have learned to hide my symptoms as much as possible.  In a world where there are still many misconceptions about seizures and Epilepsy, I find others squirming uncomfortably when I confess that I continue to have uncontrolled seizures. I notice colleagues changing the subject quickly when I mention Epilepsy.  Anytime I feel the characteristic aura of a looming seizure, I search for a safe place to sit and hide in case the simple seizure generalizes into something more.

I know I am one of the lucky ones.  After my first prolonged seizure as an infant, Epilepsy disappeared from my life for over a decade.  I had twelve years where the monster within my overexcitable brain hibernated and I was able to grow, develop, and learn normally.  My brain formed new connections around the area that was damaged after the first seizure.  The hormonal surges of puberty woke the sleeping monster deep within my temporal lobe and suddenly paroxysms of pulsing heat, confusion, headache, and barely perceptible movements of my mouth and face were overwhelming me ten to twelve times a day.  Epilepsy was awake and it was present to stay.

Since my official diagnosis of temporal lobe epilepsy at age 18, I have tried over fifteen medications and medication combinations for treatment of my seizures.  In 2003, during the middle of my pediatric residency training, I had a temporal lobectomy to remove the area of my brain that had been damaged during the seizure during infancy and the surrounding areas.  I was desperate for a cure for my seizures and prayed that one day I could continue my medical training and practice unencumbered with seizures and the mind-numbing effects of medications.

The surgery was successful without complications.  Five months later, the seizures were back.

But despite the fact that others can’t see outward evidence of my Epilepsy, it is my constant companion. Frequent auras remind me that the threat of having a seizure is ever-present.  Medication-induced fatigue tugs at me like an anchor, threatening to pull me out to a somnolent sea filled with waves of persistent tiredness that I fight to overcome every afternoon with all my strength.  At times, I feel as if I am a lone surfer in a tsunami of medication side effects, riding the sickening larger waves of dizziness, confusion, poor appetite, and headaches.  To moderate the side effects of the medication, I closely monitor my sleep, activities, and time that I take my anti-epileptic medications every day.  I live in constant fear that the slightest alteration in my routine will cause me to lose grip on my fragile lifeboat and drown in the angry sea.

When I was diagnosed with Epilepsy, I made a resolution to myself that seizures would never define me.  Medications will never rule me.  And despite the pulling at my anxiousness and self-conscious, Epilepsy would never dictate my choices in life. My husband and I have been blessed with three fantastic children (and three tumultuous pregnancies with several grand mal seizures) I have a busy pediatric practice and am able to do almost everything I dreamed of despite Epilepsy.  It’s time to lift the veil and step out of the shadows.  It’s time to share my story and the story of others so we can raise awareness and give others hope.

The more we talk, the more we understand.

Please pass it on.

14 comments on “My Story

  1. Rebecca says:

    My epilepsy started after encephalitis when I was in medical school. The encephalitis was awful; I had amnesia for what had occurred in the previous 9 months of my life, including the person who is now my husband. (Who is this man who says we live together?). Of course I took the rest of the year off, and repeated a year of medical school. But then there were the seizures, and the medications with their side effects. It took a few years to find a medication that worked for the seizures.
    Fortunately, my practice has been flexible enough that I can work “part-time” (HAH!) and be out of the clinic and able to sleep if I have been on call or been up delivering babies in the previous night.
    Most embarrassing seizure? Probably the grand mal seizure in the parking lot of Hatchery Hill clinic, leaving an all providers and medical director and CEO meeting, in front of everyone. And yet why do I say “embarrassing” especially when I was surrounded by my colleagues, doctors who knew me well, many of whom knew about my epilepsy? I had 8 years without a seizure prior to that, and thought I was done with them forever.
    Now, I’m off to the hospital to do rounds on mothers with newborns. I was up all Friday night with laboring patients, and then slept a lot of Saturday.

    • Rebecca – your story brought tears to my eyes. Thank you so much for sharing! I sympathize with your constant worry about getting enough sleep. I am hopeful that the more we share our stories and spread awareness, maybe there will be increased motivation for research so that one day we all may find a cure.
      A huge electronic hug to you. . . Kristin

  2. Amanda Bryant says:

    You are a tremendous role model and a powerful voice for everyone who battles epilepsy. I hope that your courage and strength will inspire others who hide their monster of epilepsy and give them the courage to become part of the collective voice. You are breaking down many walls, both personally, professionally and someday, globally. Way to go! I truly admire you, my friend!

  3. ahappylass says:

    My cousin has had severe epilepsy since just after he was born. They put him on a ridiculous number of meds to keep him calm and then told his parents that he wouldn’t live past 12 because the meds would kill him. My aunt has since dedicated her life and career to raising money for epilepsy research. She founded and runs the Muir Maxwell Foundation in Scotland, not sure if you’ve heard of it?
    Now my cousin is 16 and while he has serious mental disabilities, he is incredibly kind and loving. We are an ocean apart and I haven’t seen him in years but boy do I miss that kid. Thanks for raising this awareness. You’ve got a follower in me 🙂

    • Thanks for your comment and for following my blog. It’s amazing how many people that are affected by epilepsy in so many different ways. Kudos to your aunt for dedicating so much time and effort for epilepsy research. It’s my dream that if we can raise awareness then more people will be motivated to conduct more research to find a cure for the millions of us living with epilepsy today.

  4. letizia says:

    Thank you for this beautifully written post. I have complex partial seizures as well and, although my journey has been a bit different, your words have touched me so much. I try to balance my family and work as well so that I don’t feel defined by it (although on some days, the post-seizure fatigue really makes it hard to ignore, doesn’t it?!).

  5. Amanda Gardner says:

    Kristen and Rebecca you are both truley inspirations to all who are afflicted with this disease. I know all to well of the effects of it as John suffers from it since childhood. For some reason his partials come on with lack of sleep and low blood sugar. So I am terrified everytime he gets woke up to go to work if the kids wake him. It is our secret and we shield the boys from it if it does deside to rear it’s ugly head. Our first Christmas was spent in ICU at St. Mary’s becuase I came home and found him on the floor in a grand mal, even with my training as a paramedic I was in a panic. The neuroligist told us it was a case of bad luck and never did look into why it showed up after 15 years. He now is under the care of a much more caring and compentent UW neurologist and luckily his partials are rare we are very blessed. Rebecca you should not be embarrassed about that day. I remember how scared I was for you and your family. I pray every day that our wonderful boys are never afflicted with it, I can handle anything diabetes throws at me. Thank you for sharing and being advocates, you are two amazing women!

    • Hi Amanda! Thanks so much for reading and posting! I never knew what your husband has epilepsy as well. I bet that you and my husband would have a lot to talk about. I watch my children with every illness, praying that they don’t have the same propensity to febrile seizures that I had. I understand how you are scared for your kids as well. I’m glad to hear that your husband is doing well and I hope that he continues to do well. Thanks again for reaching out and my thoughts are with you and your family.

  6. Vicki Jones says:

    Thank yoo so much for you said. I was diagnoised in 2002 with complex partial siezures, but have been blessed with a wonderful neurologist who refused to give up on me. In 2005 I was diagnoised with RSD which I now have in both arms, neck face and all my lower body, and of course the RSD induces more siezures. I refuse be be defined by either and try live each day fully. When the fatigue is bad I try to use it as an excuse to just sleep and dream of beaches or snow covered mountain. ( Ilive in the desert). God bless to all of you.

  7. liliput says:

    I have had very similar epileptic stages in my life. It doesn’t scare me any more after everything I have been through, but it is always great to hear similar stories and to know that you are not alone! I sometimes do feel like medications do rule me, but I try real hard to make people think that they don’t 🙂 Thank you so much for sharing your thoughts! I appreciate hearing it from others that know how you feel!

  8. Christine N. says:

    Kristin, This is a tremendous resource you’ve created! While I have not had a seizure in over 15 years, my middle-, high school, and early college years were plagued by them. Monitoring sleep, food intake, and stress levels are just second nature now, but auras are always scary reminders that there’s a sleeping electrical storm that could break at any time. Since my seizures began at adolescence, I live in fear of those years with my kids – for entirely different reasons than most parents do 🙂 When I was pregnant with Luca, and Emilia had what was characterized as a seizure (thankfully, nothing developed further for her after that), I was completely outraged that the medications and basic treatments had not developed much further than when I was being treated 20 years earlier. Resources like these – where voices can be heard and stories can be shared – are an invaluable avenue to raising awareness and hopefully much more funding for the research that’s so desperately needed. Thanks again, and hope you and yours are doing well!

  9. cindy novak says:

    After is very informative an d reassuring-therapy for anyone of any age. After 45 years of dealing with seizures in different occupations I can relate to it. I am sure it has provide not only the information but the comfort-friend many are looking for and do not have access to and no means of communication.

  10. mickcgorman says:

    I am just beginning the Epilepsy journey so i am still hopeful of a relatively normal life. You have inspired me to “go for it”
    Thank you

  11. Mari McDonnell says:

    Your read is great. I have a 3year old daughter who has suffered epilepsy from she was just 1year old after having a prolonged seizure from what they think was a febrile convulsion. Your seizures which you have spoke about which connect with your swallow are exactly what Alice has. She was diagnosed with focal seizures and her neurologist discovered structural damage on her right temporal lobe from an MRI scan which she had after another prolonged seizure she had when she was 22months this time her seizure lasted almost 2hours before they got a medicine to stop it completely. Unfortunately after a second MRI scan in December 2015 they discovered damage to her left temporal lobe too. We are in the process of assessment for surgery for Alice but with the results of her last MRI this may not happen. She is on two meds morning and night but unfortunately we can’t get seizure control and we actually don’t know if we ever will. This is the first time I’ve heard of someone to have the swallow type seizure the same as Alice. I am delighted to hear your story which I can relate too as her parent as she is too young to understand her epilepsy even though she is totally aware of her seizures happening. I’m off now to order your book from amazon.!😃

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