Stacia Kalinoski has turned the painful yet uplifting story of her epileptic seizures into a powerful documentary, Brainstorm, airing next on PBS station TPT (KTCA) in the Minneapolis/St. Paul area on Friday, April 21 at 9 pm. For more information about Brainstorm, go to https://www.brainstormdocumentary.com

Stacia Kalinoski watches a medical study video of herself, in the midst of a seizure. This was the first time Stacia had ever witnessed how her body acts out during a seizure; she has no actual recollections of the seizures.

Struggling with Seizures

A Former TV Reporter’s Battle to Beat Epilepsy

April 2017

Stacia Kalinoski watches a medical study video of herself, in the midst of a seizure. This was the first time Stacia had ever witnessed how her body acts out during a seizure; she has no actual recollections of the seizures.

BY STACIA KALINOSKI

I thought I was perfectly fine. A college student, an athlete, and studying journalism in preparation for a career in television news. Life was good.

But then, in the fall of 2005, as I was about to embark on my junior cross country running season at the University of Minnesota, it happened: my very first seizure.

I don’t remember anything about it, except that I was in my apartment. My roommate witnessed it and called 911. I vaguely remember getting out of the ambulance, and going into the emergency room.

Doctors checked me out, did a few tests, and released me.

I learned that anyone can have a seizure, at any age. Our brains are constantly sending messages to other parts of the body through the nervous system, a network of billions of neurons. They travel via an electrical current. Any number of things can disturb the brain, and suddenly neurons will start misfiring and create a seizure.

Another seizure struck a few weeks later, again in my apartment. Doctors did more tests but didn’t find anything worrisome at that time, so I figured it was just a fluke, and went on about my life.

And for me, nothing happened again, for about four years. 

 

NOT YOUR TYPICALSEIZURE

 

After college, I headed off to Nebraska for my first TV news reporting job. A couple of small seizures popped up as I was preparing to move to Oregon for my next job in 2010.

At this point, I was starting to get nervous. My seizures didn’t look like your “typical” seizure.

I had what are called focal seizures, which are focused in one part of the brain. People who fall down and convulse have generalized seizures, which affect both sides of the brain. But with focal seizures, I would stay aware of what was happening at first — and get deja vu, which is common in focal seizures. Basically, I would be in the middle of doing something, then slowly start to get a weird feeling that I had been somewhere before, like a flashback, maybe back to something that had happened in my life 15 years ago. It felt like a strange dream.

kezi truck copy

Stacia Kalinoski at work at an Oregon TV station in the late 2000s.

 

Or I would get what’s known as jamais vu, where I’d be in a familiar place, like at home or on a running trail, but have no idea where I was. All my surroundings became unfamiliar, so I would get lost running.

And then there were the times that I would just get confused, and think lights were flickering in a room. That was my main warning that a bad seizure was coming — when I thought overhead lights were fluttering or I saw quick bursts of light that weren’t really there. It was as if my brain was starting to short-circuit.

Then within seconds, it was lights out. Seizures would spread from one area (doctors later determined my right temporal lobe) to another, and I would lose all awareness of what was happening. I was essentially unconscious at this point, but my short-circuiting brain was in overdrive. Since seizures firing from my right temporal lobe often spread to my frontal lobe, my actions would reflect what those areas control — emotions, fear, and movement.

Sometimes, I would start screaming and flailing my arms during seizures, and although I looked awake, my mind was black. Other people laugh, or appear to be making bicycle pedaling motions or pelvic thrusts.

I would gradually come out of the seizure feeling groggy, again with no recollection of what happened. Since I didn’t realize how scary it was for others who were witnessing my seizures, I just kind of rode them out and tried to get enough sleep, since that seemed to be the trigger.

My co-workers and friends, however, began to get increasingly concerned about what they were seeing. I stopped driving at that point and biked to work. The TV station I worked for was very accommodating, and had someone drive me to locations where I was reporting.

But I kept all of this from my family; I simply didn’t want to worry them and figured this was a problem that would either go away or that I’d somehow grow out of—looking back I guess I was in denial. Stigma and embarrassment were all I thought about, and I wanted to keep my job.

 

RUNNING FROM THE TRUTH

 

The seizures started to occur more frequently in Oregon. They usually happened when I was running or biking. But not always. After competing in the Seattle Rock’n Roll Marathon in 2010, and after only getting a few hours of sleep the night before the race (not to mention being nervous the whole time running up and down huge hills that I would have a seizure), I was super exhausted and had seizures all weekend. During one, I was cutting vegetables and ended up slicing my arm open with a knife. That would be just one of many injuries brought on by a seizure.

SEATTLE

Stacia Kalinoski, running in a Seattle marathon in 2010.

 

But I was still determined to run another marathon, to reach my goal of finishing a race in two hours and 50 minutes, since I didn’t achieve it in Seattle. So, I signed up for the Eugene Marathon and continued training. I was running the fastest speeds of my life at that point, so I brushed the seizures aside. But then I had one that would halt marathon training to this day. It was perhaps the most emotionally draining one for me, up to that point.

This seizure caused me to lose all sense of time and place. I got lost out on the trail that day – literally a block or two from my house. I was completely disoriented. I just sat down on the tree-lined trail, in the mulch, and cried because I didn’t know where I was. A nice couple out for a stroll came up to me and helped me figure it out. But it kind of hit me then that I couldn’t keep training and having seizures. (An ankle injury coincidentally popped up, which I guess was another sign.)

A friend and co-worker finally called my mom and said, “We need to do something.”

I saw my first neurologist in Eugene and started on medication. It had upsetting side effects — it basically made me really emotional — so I just stopped taking it. I know, not the smartest idea. But I was preparing to move to Grand Rapids, Michigan for my next TV news job, and vowed to take control of the seizures there.

I moved in 2012 and sought out an epileptologist. (An epileptologist is a neurologist who specializes in the treatment of epileptic seizures.) Lucky me – I connected with one of the best in the country — Dr. Brien Smith at Spectrum Health Medical Center. He would officially diagnose me with epilepsy.

 

SEEING IS BELIEVING

 

In November 2012, Dr. Smith put me in the hospital’s Epilepsy Monitoring Unit (EMU), where they stuck a bunch of electrodes on my head and connected the wires to an electroencephalogram (EEG) machine to track my brain waves. They also video recorded me to see what the seizures looked like. For about a week, doctors deprived me of sleep and reduced my meds to trigger seizures.

Dr. Smith put me on several new medications. They did a good job controlling seizures if I got eight hours of sleep, but dipping just a little below that threshold could cause trouble. The seizures continued on and off. That was the bad news.

Dr. Smith_my seizure

Dr. Brien Smith of the Spectrum Health Medical Center in Grand Rapids, Michigan

 

The good news? As a result of my inability to satisfactorily respond to meds, Dr. Smith started to look at the possibility of brain surgery. I was hopeful I’d be a candidate, because many people don’t qualify. Those with generalized seizures, for example, can’t undergo the surgery because neurons are firing from all over their brains.

Yet while Dr. Smith was looking into surgery, I had a series of seizures at work one day. One was bad. So bad, in fact, that I was fired.

 

LIGHTS OUT IN MY BRAIN, AND AT MY JOB

 

I remember very little of that day. I started off on an assignment at a courthouse, one I don’t remember at all. Apparently I had a small seizure in court so staff there called my employer. A photographer came to pick me up, and I had another one in the courthouse elevator. I didn’t act out or scream, I was just very confused.

I came back to the television station and my bosses talked to me about it. I had another seizure (though no recollection of it) in my general manager’s office. (My termination file says when asked where I was, I said I thought we were in my news director’s house—a place I’d never been.)

My bosses told me to go home and rest. On my way out, I stopped in a colleague’s office to ask her a question. All I remember next is looking, for a split second, at an image on a video editing screen in the room; then I went completely black. What allegedly happened next is still hard for me to fathom. I lost my job over that seizure and suddenly had to figure out what to do next.

My focus, my life, had always been on TV news. But now, I really didn’t think I could ever work in television again. I returned home to Minnesota, knowing that my number one priority had to be taking care of my epilepsy.

Dr. Smith connected me with a great physician at Minnesota Epilepsy Group in St. Paul. Dr. Patricia Penovich put me back in the Epilepsy Monitoring Unit to watch my seizures. She conducted additional testing, and in February 2015 determined I was a candidate for brain surgery. (Candidacy means the surgery evaluation team thought there was a good chance seizures were firing from my right temporal lobe. It’s the most common area for focal seizures and has the highest rate of successful surgery.)

Still, being a candidate isn’t a guarantee I’d actually get the source of my seizures removed. I had to first agree to an exploratory surgery, in the hopes it would then lead to a second, more extensive surgery.

 

PROCEEDING WITH BRAIN SURGERY

 

The sun was still rising in the summer of 2015 as I practically skipped into United Hospital in St. Paul.

I was headed for the operating room to have a craniotomy. My two surgeons were preparing to cut open my skull to put a small, thin, plastic grid right on the surface of my brain. While the previous tests were helpful in tracking brain waves, this grid would give doctors the precise location from which seizures were firing. The hope was that seizures were forming in a non-critical area like my hippocampus (responsible for memory). If seizures formed too close to areas that control language, sensation or movement, surgery number two wasn’t going to happen. Too risky.

fam visit

Stacia after her brain surgery at United Hospital in St. Paul, Minnesota in 2015, with her brother Thomas, sister Sara and brother Michael.

 

So they placed the grid, stapled up my head, and watched seizures for about a week. The results were just what we wanted.

It’s been almost two years since surgery, and I’m thrilled to say I’m doing great. I had some small seizures while my brain was healing, but doctors said that’s common. No seizures since, knock on wood. I feel very fortunate saying that because surgery is only about 70 to 80 percent effective. I continue to take care of myself and focus on getting good sleep. I’m also happy to say I don’t feel “different.” Doctors conduct neuropsychiatric testing and evaluations on patients, before and after surgery. Some people do have personality changes.

Still, the worst part hasn’t been anything physical, or even the loss of my TV career. The most distressing result has been the memory loss. I remember very little of the last decade because my seizures started in the hippocampus area of the right temporal lobe, which helps transfer short-term memories to long-term. Not being able to recall my adventure trip to New Zealand, every Christmas with my family, and random nights out and conversations with friends, is really emotional for me, and for them.

 

THE POWER OF HEALING, THE POWER OF FILM

 

Making a documentary about my experiences with epileptic seizures seemed like a natural segue — a bridge — to link my TV reporting career and health issues. In addition to writing and producing the film with the guidance of two great mentors, I also shot and edited much of it myself. Brainstorm aims to reduce the fears and stigmas surrounding epilepsy, through education. The name of the film comes from the fact that seizures are essentially electrical storms in the brain.

But I’m not just sharing my story. I also chronicle the journey of a little boy with epilepsy in Atlanta, Georgia and that of former Minnesota Gophers football coach Jerry Kill. Kill dealt with ignorance and endured ridicule after suffering seizures in the public eye. He has since become a national public advocate for epilepsy awareness.

Kill_me_CampOz copy

Stacia with former Minnesota Gophers football coach Jerry Kill; his story is also featured in Stacia’s new documentary, Brainstorm. 

 

My hope is that by interweaving personal stories with epilepsy experts, viewers will gain a true understanding of how seizures work and impact everyday people.

I decided to include a hospital video of me in the film, in the midst of a seizure. I’d never watched it prior to the beginning of production on Brainstorm. The sight of my arms flailing about, and the sound of my voice screaming at the top of my lungs – was horrifying, humiliating and heartbreaking to see. My body acted in ways that would never happen in a conscious state.

Yet I know I’m not alone. One in 26 people in the United States will develop epilepsy at some point in their lifetime, it affects three million Americans, and 50,000 people die from seizures or seizure-related causes (like drowning), every single year in America.

Two years ago, I would have never even considered uttering the words, “I have epilepsy.” But now, I’m telling my story loudly in order to clear up misconceptions and educate America. It needs to be shared. And I’m hopeful it will be heard.

 

Stacia Kalinoski can be reached at staciakalinoski@gmail.com.

Discussion

6 people commented on "Struggling with Seizures"
Feel free to join the conversation and leave a comment as well.

  • Linda Spyhalski says:

    Wonderful project! Thank you for doing this. My daughter-law has epilepsy and is a patient at Mayo! She is doing very well and is seizure free on medications. Education is the key to helping to helping others to understand this condition! Thank You!

  • Paul Vavrin says:

    Thanks for the survivor that you are. Thanks to the one who wrote this. To survive is a conscious decision. May people be moved to make this decision. Also may they not try to go it alone. There are neurologists, epileptologists, friends, and supporters who will cheer one on during the journey.
    Thanks again, Stacia!

  • Angie Mayr says:

    I was 14 when my seizures started, back in 1966. Spent 2 weeks in the neurological wing of University of Wisconsin hospital. Being only 14 no one would tell me anything. One scary test after another, everyday with electrodes glued to skull. I was put on some very strong drugs, phenobarbital, Dilantin and Valium. Needless to say I kept having seizures, and lived in a fog during my high school years. Studying was very hard while I was medicated. After barely graduating I married and had a son. While I was in labor I bought all my meds to give to the ob/gyn nurses. She looked at them and told me I should be dead along with my baby! After several more years of having seizures I finally found a neurologist who explained the whole picture to me, and we finally found better medications that worked. But getting off barbiturates was very hard, didn’t realize I had become “hooked”. All along my wonderful husband, who never questioned our relationship with my seizures was with me all the way. I was so glad to hear about Jerry Kill history with epilepsy. It made it easier for me to talk about with people. Looking forward to watching your program, any information to the public will help. Thank you.

  • Patty Breitenfeldt says:

    Stacia, I knew you when you were a little girl, going to St. Bernard’s the n TRF. Your sister Sara, and my daughter Taylor, were best of friends. We moved away in 1998.
    In 2001, I also was diagnosed with epilepsy. After trying many different drugs, a vagal nerve stimulator, and finally having brain surgery, I still am having seizures, (albeit, not as many). You’re right on when you say the memory loss is the most difficult aspect of this disease. It’s very disheartening not to remember the good things in your life, like family vacations, births of grandbabies, etc. We sometimes joke about it, especially the inevitable question,”Have I ever been here?” The answer is almost always a very patient, “Yes, Dear”. I must admit, I find it frustrating when this memory loss is attributed and equated with aging.
    Stacia, I think you are very brave to tell this story and believe it will greatly help shed light on a rather taboo subject. I look forward to watching it tonight and have DVR’d it so my kids can watch it also.
    Take care of yourself, and please tell Sara and you mother “Hello”.

  • Shelley Steva says:

    Thanks for sharing your story. I hope your bravery in sharing your tale will help others in similar situations

  • Babs Larson says:

    Stacia, it is nice to know that you decided to address the problems that arise from being an Epileptic. I have been an Epileptic since I was a youngster and on medications for over 50 years. I do not drive as I do not have any warnings when a seizure is about to occur, however I refuse to let it dominate my life in a negative fashion. Embrace your Epilepsy and think of it as an opportunity to educate others and become an inspiration to other Epileptics who need to see that they can also be successful. You are a courageous young lady for telling your story! I worked for 33 years as a Librarian at the Warroad Public Library, which is a branch of the Northwest Regional Library System. Your mother, Barbara, was the Library Director during most of my time there and as a employer she was very good to me when I suffered seizures.

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