Monday, October 20, 2008

Pseudoseizures: My story
Welcoming the birth of my new baby girl brought many changes to my life, changes that, if left uncured, would have devastating effects on not only myself, but my family. This bumpy journey through uncharted territory has been a difficult one for me, and my hope is that by shedding light on my personal experience, others suffering from pseudoseizures or mind conversion disorders may get the treatment necessary to move on with hope for a brighter future, and most importantly receive answers necessary to CURE this illness.
Devastating physiological changes occurred inside me a week after giving birth. To those looking in from the outside, everything seemed "normal." Great delivery, beautiful healthy baby, and me, sitting up eating McDonalds in my bed hours after my strenuous exhaustion was over. No one saw the dark cloud brooding over head, especially not me.
It was 3:00 a.m. in my one bedroom apartment. I laid on my side in the fetal position. Eyes bloodshot from lack of sleep, looking at the glowing red lights from my alarm clock. My sleepy eyelids would close, and I would drift into momentary unconsciousness until I felt a burning sensation in my chest. I opened my eyes finding the number on the alarm reading 3:02 a.m. I rolled over on my back, starring at the ceiling, sure that I must be crazy. Before my Oaklee was born, I slept 10-12 hours a night! The burning was creeping back. I couldn't turn off my brain which was controlling my heavy heart. I was sure someone had just laid a 10 lbs brick on my chest.. Before Oaklee I thought... Before Oaklee I was rushing to graduate. Too embarrassed by my growing belly and hidden mistakes to be in public. Even a trip to the grocery store was excruciating. The chance of running into someone unexpectedly gnawed at me every where I went. That meant school was out of the question. Too ashamed, I dropped out. There I was, senior year, sitting in my p.j.s doing mail-in homework from the glow dim of my lamp. This is not how I had pictured my last year of High School to be: Clicking "done with course" on my computer desk from home, receiving my diploma by mail, while everyone my age was celebrating their graduation with dinners and trips all around the world. I pushed that memory aside. Too painful. Snap back to reality. 6:00 a.m slowly rolled around like an hourglass. Each piece of sand dropping through the glass in slow motion. Did I just hear Oaklee? She was up 2 hours ago, I'm so exhausted, and I can't do this today. No choice. I prayed for 8 0 clock to come. I could get relief from this anxiety monster at 8. My chest still seemingly burning a hole through my skin. 8 o-clock on the dot. I placed Oaklee in her car seat. I stood gazing down at her beautiful little face, I can't believe this is real.
My Mom's was my safe haven, a place where when it got to consuming. I could breathe again, and try to be normal. I was going on a third day with no sleep. At my Mom's, Oaklee was safely in the arms of family, I would try and tell my running brain, so please just close your eyes and get some sleep. Heart stop pounding in my ear, just one hour that all I'm asking for. No such luck... I kept flashing back to Junior year, carefree and full of adventure, not knowing where my journey was going and liking the feeling of freedom. My hand in his felt amazing, fingers interlocking with warmth. Our lips touching lit a spark inside me: he was a part of me. Sitting on the bathroom floor in a ball of tears, staring at the little pink plus sign in disbelief through watery eyes. His smile, so strong and warm, reassuring. I was plagued and consumed with guilt as I read my families expressions; all the same, disappointment, worry, and confusion as we confessed the little secret growing inside me. Hopelessness enveloped me like diving into a cold pool head first.
Flash back: A warm breeze in the air. Pink and yellow Gerber daises and white tents with decorations. A wedding cake trimmed with brightly colored flowers. Walking down the aisle, feeling the nudge and bump of little hands and feet inside me. Staring into the eyes of my love, tears forming in my own. Letting go of the past and moving on with the future. One problem: I couldn't let go.. It gripped and strangled me like a weed to a flower. Sucking the life and energy and beauty away with one squeeze of it's heavy grip.
The clock reads 5 pm. I have laid here for 3 hours in this hell hole of my own mind. A smell of lasagna coming from the kitchen makes my stomach turn. Usually I would indulge, but as I stared down at the gooey cheesy layered noodles, I couldn't eat. I wasn't hungry. I put on a good show for everyone, choking down one of my favorite foods. Something must be wrong here, I could feel it.. But no one else seems to notice. I must be crazy. Looking in the mirror at the reflection staring back at me was like looking right at a walking zombie: Deep violet circles under my eyes. Lips cracked and bleeding from a bad habit of picking them raw with nervousness. Eyes glazed and red. A white sheet standing in front of me, expressionless and flat.
My heart leaped and thudded nervously as the clock showed 6:00 p.m. I can't go to that little house tonight, I can't be alone with Oaklee, I can't sleep.. Please just let this be over. I sat on the couch in a daze. Looking through a glass at everyone cooing at the little miracle wrapped in pink. Pure joy radiating from their faces Why am I not happy? What the hell is the matter with me? I have this beautiful healthy baby and I don't even want to hold her. So much guilt, so much....
"Stacie, Stacie, you've got to talk to me. Open your eyes Stacie!" I was being shaken violently by the shoulders. I looked up through teary eyes, realizing what just happened. Did I almost just fall off the couch in a slump? My left side felt numb and cold. My face drooping and slurring the words I was trying to say. "I don't feel ri.." Had I just fainted?
"She's okay, she's okay. We've got to get her to the hospi-Stacie, oh my gosh she's doing it again, Russ call an ambulance!" Doing what? Then I felt my body shake, I could feel it happening. My arms, my legs, my head. Jolting and shaking. I could hear muffled cries of panick in the background, but I couldn't answer. Tears rolled down my jolting face. I was being scooped up by someone strong and tense. I opened my eyes.. "Colt.. wha--t is happene-ing to me." My teeth were chattering together violently. Tears flowing into my mouth, arms limp, legs lifeless. I was rushed to the emergency room, rolled in in a wheelchair. I felt like I was in a blurry dream, I couldn't hold onto reality. A tight squeezing on my arm. Pumping up and down, air was being compressed on my arm making it feel like it had its own heartbeat. It read normal. No fever, regular breathing, regular heartbeat. The nurse getting impatient with all the frantic family demadning answers. A lifeless body in a wheelchair A stole a glance at Colt. A single glistening tear rolled down his tough weathered cheek. "It was like she had a--a-- a seizure" with that small word, seizure, my life turned upside down. I was immediately referred to a neurologist. Terms were spoken freely.. Bells palsy, nerve damage from the epidural, or seizures.
Testing reveiled nothing. Brain scanes came back, no prominent signs of a tumor or irregular lobes, sensitive testing material produced no signs of anything at all. No nerve damage, no bells palsy, nothing. What a relief, or was it? Nothing came back? Nothing at all. No answers to why my body was convulsing and shaking repeadetly for minutes at a time. No reason for waking up feeling like I had just ran a marathon.
"Shallow breath and burning muscles. No reasoning as to why I could hear hysteria in the background while I was shaking, but not repsonding. No reason for not sleeping, eating, or being like the old me. "Postpartum" My family doctor said, it's "So normal" and here are some little pink pills to make it all better. "It will be about a month before you see results." Too long, I may not be here in a month. With the diagnosis of seizures, I was not to be left alone, drive, or left with Oaklee to long. I was given pills to sleep, and told to get lots of it. It was humiliating having my Mom or Sister take Oaklee out of my arms after I fed her. "We can't risk something happening to her Stacie." I had to be crazy. Simply driving past the hospital where Oaklee was born would set off a trigger in my mind. Flash backs of breast pumps and binki's would cloud my thoughts. Overwhelming anxiety and destructive guilt would poison my mind. I could feel them coming on again.I would convulse randomly. Even after sleeping, and being sent to neurologist after stupid all knowing neurologist. "Seuizures is what's happening here. They can be controlled with medicine." Great more pills to swallow. Pills that clouded my ability to think. I hated them. No answers.. No hope.
It was some 3 months later that I finally was introduced to the word "pseudoseizure" I had been shaking violently and choking on salavia and sobs. The "seizures" were 30 seconds apart, lasting 7 mintues each episode. Strapped to a gurny I was rushed to the E.R. yet again. " Epeleptic Seizures don't last 7 minutes" said the E.R. doctor. As he was shining a bright light in my eyes. His expression thoughtful. "Pseudoseizures." The Hopelessness feeling that I was never going to be normal again and live a sad and tainted life, was some how lifted off my shoulders with that word. It opened up a door, right into Dr. Kirk Thornes office. A counselor. Great I really was crazy, I was sitting in a shrinks office. But this "shrink" was different. His gentle expression and contagious laughter we're so comforting and welcoming to my hurting spirit. He had a gift for reading me. "Anxious, and a worrier" He would say between huge laughs. "Go ahead, seizure on my couch, I would love to see it." I was surprised, but I laughed too. I laughed, I hadn't laughed in months. He explained what a "Conversion disorder", or "Pseudoseizure" were in terms that a human could understand. He said that my subconscious mind was protecting me. That when things got to stressful or overwhelming, or the guilt was about to take over, my subconcious mind would take over for me, and make my body seizure to deal with the stress. Pseudoseizure literally means fake seizure. "So I was fake seizuring?" I asked confused "Yes that is exactly what you were doing." Things got to hard, and your mind took over for you." It was a lot to take in, but it made perfect sense. I left Kirks office literally skipping. Finally feeling the sun on my face, and the happy tears in my eyes. I have an answer! I have peace and I have pseudoseizures, but I can handle this! I can handle this "I don't need you anymore subconscious but thanks for playing!" With the help of anti depressants and Kirks mounds of advice and counsel, I finally feel good again. I'm happy, I love my daughter and sweet husband unconditionally, and I'm rolling with the punches of life with a good attitude, not plagued by my weakness. Sure the days are still stressful and some nights are still long and hard, but I have learned how to deal with life's stress in a healthy way. I can sense the triggers, and avoid the mind trick.
To anyone out their, struggling with this condition, or feeling like there is no way to turn, please contact me. This blog's soul purpose is to share my personal experience hoping to reach out to other's struggling and lend a warm helping hand. Please feel free to contact me by email or share your personal story or insight here.
Pseudoseizures are real, but there is an answer.