Guest Post: Seven Myths About Epilepsy

Here's a guest post from Casey Roberts, a student who writes for Radiology Assistant, which helps students find the right radiology degree.

Seven Myths About Epilepsy

As many of you know, epilepsy is a common topic of this blog.  We thought now would be a good time to discuss more information about it.  To that end, we have gathered seven myths commonly associated with epilepsy.

1: Flashing lights – Contrary to what “The Simpsons” and other shows will tell you, epileptic seizures are rarely brought on by flashing lights such as those found in Japanese cartoons.  This type of epilepsy is called photosensitive epilepsy and only five percent of those who are epileptic have it.

2: Hold me down – One of the common myths when someone is suffering from a seizure is to hold them down.  However, this can cause more problems than it solves.  If the person is in a relatively safe place, such as in an area where they can't fall, they should generally not be held down.  Instead, move objects that can be collided with away from the person having a seizure.

3: Tongue swallowing – We've all heard the old wives' tale of someone swallowing their tongue during a seizure, but how many times have you actually heard of that happening?  It is because this is almost unheard of.  In fact, placing an object in the mouth during a seizure can cause more damage than it prevents.

4: It's not rabies – Another myth surrounding seizures is that people can foam at the mouth like a rabid dog.  While some saliva may leak during a seizure, there is no foaming of the mouth during them as in someone who could be rabid.

5: On cue – In 2009, a British dancer attempted to bring on an epileptic seizure as a form of art. However, most people with epilepsy cannot bring on seizures at will.  In fact, their unpredictability makes the seizures one of the worst parts of epilepsy.

6: You have to be born with it – Unlike other disorders, such as autism, epilepsy is not something someone is born with.  It is often a side effect of traumatic brain injury, but anyone can develop it over the course of their life.  It is more often to first appear in children.

7: People with epilepsy can't do anything – Because epilepsy is such a wide ranging disease, so too are the people who have it.  They can do everything from hold down a normal job to drive a car.  It is those with severe seizures who have to rearrange their lives.

Casey Roberts is a student and also writes for http://radiologyassistant.org Radiology Assistant, which helps students find the right radiology degree.

The Longest Day

I was watching a show the other day about the training of special forces for various branches of the military. One episode featured a final exam called The Longest Day. It began with paddling a rubber raft through crashing waves, carrying it through the trees, completing a mission and walking the miles back through tear gas without masks. Somehow that sounds worse to me than brain surgery, but maybe it's because I know I can make it through it.

This day last year was my Longest Day. It was the scariest, most painful day of my life and I know I'll never forget it as long as I live. Right about now, I was finishing up my "stim test", where each electrode on my brain was reverse stimulated in turn to see what would happen. The doctors would press a button and my hand would jerk, or my eyes would move or my tongue would stick to the roof of my mouth and I couldn't breathe. Each time I heard one call a set of numbers to the other, I would wait for the shock and pray to God that nothing would happen. They were looking for my motor strip and I wanted so badly for it not to be under my seizure origin point, what they had come to call "the birthmark". I sat in my hospital bed, clutching the small, stuffed dog that my parents had gotten me in the Mayo Clinic gift shop. I was so scared. I focused on the sign my sister had made me that hung in my hospital room: We Love Our Erica. I traced the patterns with my eyes, drank in the colors and tried to stay calm.

In an hour and a half, my surgeon would come in and tell me that the birthmark was not on my motor strip, but right up against it. I was a candidate. I exhaled with my whole body, my whole spirit. I was a candidate. He told me that I could have the surgery, but there was a chance I would lose a good amount of sensation in my hand - I would have a hard time knowing how much pressure was needed to hold a fork, being able to recognize the shape of my wallet in my purse by touch. There was a chance I would lose some speech, some short term memory, though it wasn't very likely. "Do you still want to do it?" I paused for only a moment, because what stood firmly in my mind was that nothing had gone wrong yet, so there was no way it would start now. I lifted my right hand, covered in white tape to hold the IV in place, to the plastic table over my lap and signed the consent form.

Not until about 4pm was I finally brought down to the operating room. I remember a cleaning woman in the elevator as I was rolled in by a nurse. I said, "Hi, how are you?" as cheerily as I could. She looked startled but then smiled. I tried to be brave in the pre-op room among dozens of other patients in blue and white polkadotted smocks, lying in rough, white sheets on a plastic bed. It was easier the first time, when I didn't know what would happen, when I had no idea what I was getting myself into. Somehow, this time it was terrifying. A couple nice doctors, nurses and techs stopped by to explain a few last details, but I didn't care about the information, I just wanted their smiles and calming voices. A few layed hands on my shoulder or foot, and just a simple touch like that brought a sliver of peace.

The OR was brighter, more sterile, more ominous and more lonely than I'd remembered. Cindy wasn't there this time; she'd placed electrodes on my scalp for my monitoring the day after Thanksgiving and the grid on my brain during my first surgery, but since they were removing it, a much less delicate process, she was somewhere else. I didn't know anyone there. It was like the first day of kindergarten: terrifying and, as yet, the biggest day of my life. One man in blue scrubs came closer and smiled through his mask; he said Cindy had told him to take good care of me. I relaxed a little as he held my left hand and someone else took my right while a clear mask was lowered over my face.

I try to forget what happened when I woke up in post-op recovery. I try to block out the pain that was so terrible I screamed; the way I writhed on the bed, the bright light that stared me down when the doctors made me open my eyes, their hushed voices when I sobbed that my pain was a twelve and begged them to help me. That scene is burned into me. It felt like an eternity as the hysterical crying I realized was my own melted to a pleading whimper. This hadn't happened after my first surgery. Couldn't anyone help me? What went wrong?

Last night it came to me like it sometimes does. A wave of remembered trauma, pain, relief and gratitude smashed over me, its full force against my mind. Wet tears slid down my face and as my rock held me in his arms, they turned to sobs that wracked my body and tore sounds from my throat despite my efforts to stifle them. I could see the wet collecting on the collar of John's blue shirt, turning it dark and shiny. I began to calm down at the insistence of my nose that it needed a tissue. I went through three before I could breathe steadily again. I clutched John's back and laid my head on his chest. "It's okay, baby, it's gonna be okay. You've been through a lot." I have.

Thank you to everyone; all of you who have been here for me, with me. Thank you, God, for the blessings you've given me. Thank you, John, for listening, understanding and supporting me every day. Thank you, mom and dad, for holding my hands; sitting quietly when every little noise hurt; making up stories when I was scared; spoon-feeding me; forcing me to sit up, stand and walk despite my dirty looks and petulance; fixing oatmeal and fruit every morning; re-teaching me how to knit so I could regain the function of my hand; making me take naps even when I didn't want to; taking me on slow walks around the block in freezing cold January weather; but most of all, teaching me how to live the kind of life that makes me happy and fulfilled.

John asked me what I want to do tonight to commemorate my anniversary. I haven't decided yet whether I want to go out and celebrate or stay in and remember. Either way, I'll remain, as always, eternally grateful.

A Warm Day in January

The park is quiet yet active at 1pm on a Thursday. Who is here but the unemployed, the retired and the stay at home parents with small children in strollers, on the jungle gym or waddling around like small penguins carrying juice boxes? Two college-aged boys tire of their game of hackey sack and stroll away, laughing in long shorts and brightly colored t-shirts. A woman stretches after a run; a man does push-ups, an ipod strapped to one of his spread out arms; two people play frisbee on the other end of the park, a small dog running between them, hoping one will drop it so he can come to the rescue. The breeze picks up as a patch of clouds pass between me and the sun, chilling my bare arms, and I move to the next bench down, unobstructed by the winding, leafless trees - the only reminder that it is, in fact, January.

I'm taking the day off of job hunting, spending it instead on writing, a long walk and coffee with a friend. The high today is 61 degrees and, as usual, it's sunny and gorgeous. The purple sweater I'd worn has been relegated to my backpack and the cuffs of my jeans are rolled up, showing off my white calves and the black and hot pink running shoes I got from my sister; they don't match my grey tank top with the lace down the front, but they're comfortable on my feet when I roam the streets and sidewalks of Denver.

As March comes closer, I've started to become nostalgic. I think of the friends I'll miss, the groups I'll need to recreate, the restaurants I realize I've already visited for the last time. Will I go back to the mountains before we leave? I don't know. Will I ever make it to Grand Lake or the Hanging Lakes? Probably not. Will I bother to come back for my five year college reunion in October? I'm not sure. I'm beginning to see that there are many more things I'll miss than I'd thought: happy hour on the outdoor stairway of my apartment building, carrying my blue folding chair with the built-in backpack full of crackers, dips, cherries, a book and a water bottle of white wine to Cheesman Park, where I read and unwound until the sun went down and mosquitoes bit my feet. They have parks in Minnesota, but it's not the same. I did a lot of healing here. When I moved to Colorado on July seventh, 2009, I was an empty shell, conditioned to be unamused and perpetually skeptical. I came knowing one thing: I needed emotional healing. I needed to reconnect with the happiness, strength and confidence I'd lost. Colorado has been witness to my transformation and because of that, it will always be in my heart.

But now, the universe has a new plan for me.

Comparing Chairs

The chairs in the radiology waiting room at Rose Medical Center in Denver are brown. Stripes alternate: dark brown curly designs that harken back to a more Victorian era and thin lines stringing together light brown circles - round baubles hanging like decorations on the Christmas trees taken down only a couple weeks ago.

The waiting room is half-filled with other patients - an older couple murmuring quietly in the corner, a Hispanic woman with three toddlers that play with a new baby as she speaks to the receptionist, a woman a couple years older than me reading a magazine, her tan purse on her lap. The brown chairs snake their way along the walls behind them all, dipping in the middle to create a make-shift division in between. I think of Mayo, with its mauve floral prints that will forever be etched in my mind.

At my one-year follow up with my neurologist at Mayo, we talked about the headaches I still get - a couple a week, most responsive to Advil, but about one a month that leaves me incapacitated, teathered to my couch or bed, trying for hours to sleep off the pain, even when it wakes me between dreams of headaches. He looked at me with concern, though his concerned face reminds me of a disappointed face that makes me think that I've done something wrong. Twenty six years of being a people-pleaser, I suppose. He told me that's not normal; I shouldn't be having them still. A few months ago, I made a similar complaint and was ordered an MRI. Apparently, it had shown a build up of fluid in my brain hole, but the doctors figured it would drain itself. Maybe it hasn't. He ordered a CT scan to see what's going on.

"Hi, my name is Erica Egge. I'm calling to schedule a CT," pause, "E-G-G-E".

"Hi, my name is Erica Egge. I'm calling to check on an order for a CT scan," pause, "Yes, I have my patient number," I read it off again, almost by memory. "Has the order been sent to Rose Medical in Denver yet? Does it have a note to call my insurance?" No, of course not. I give the number for MedSolutions and my insurance member ID. "It has to be noted on the order for the hospital to call them," I request, trying to hide the exasperation from my voice."

"Hi, I'm Erica Egge. I called yesterday. Has the order for my CT scan come in yet? No?"

It progressed thusly day after day. It took over a week for pre-authorization, but finally this morning I left my little third floor apartment for the hospital.

"Erica?" a middle-aged woman in scrubs called from a door to my right.

"I'm Erica," I stood upand walked to her, putting the purple cell phone that doubles as my safty-blanket back into my purse. She may have said her name as she led me down a linolium-floored hallway, but I don't remember it.

"Is it a subdermal hemotoma we're scanning today?"

I don't know what that means. "I had brain surgery about a year ago." Her eyes widened in the surprise I've come to recognize, even expect. "I'm doing fine, still seizure-free, but having headaches."

She opened the blond-stained wooden door to a testing room and walked in behind me. A slab of plastic covered in a white sheet with a small pillow for my head formed a make-shift bed sticking out of a large, white doughnut. I took out my earrings and held them in my hand as the bed began to move, jerking to a stop when the doughnut was positioned over my head. It was much quieter than an MRI, which somehow made it feel more ominous. A red light flashed through my closed eyelids. I began to pray. God, please watch over me. Please let me be okay. Please, I begged. The bed jerked back and forth as the machine emitted shots of radiation over my face to the brain behind it.

The ten minutes felt short and long at the same time when I heard a small motor propel my bed back out into the world, freeing me from my racing mind.

"That wasn't bad at all," I said to the tech, cheery with my brave face. Now it's just a matter of waiting. What happens if they find more fluid in my head? It depends. My favorite answer.