An Epileptic Identity-My Journey to Diagnosis

Conducive editor Sarah Edith Jones writes about her determination to get an accurate medical diagnosis after more than a decade of doctor visits and medical misdiagnosis. For years her epilepsy was seen as panic attacks, menstrual issues, migraines, stress, low-glucose, anxiety, and depression, and treated with medications such as birth control pills and anti-depressants. In a medical system where womens’ physical problems are often seen as psychological, doctors do not speak to one another, and the prescription pad is preferenced over genuine dialogue between doctor and patient, learn how Jones fights against the medical opinion that it was “all in her head.”

An Epileptic Identity-My Journey to Diagnosis

By Sarah Edith Jones

FEBRUARY/MARCH 2010 CONDUCIVE

The first signs that something was wrong appeared in 1994, during my sophomore year in college. I was attending a large state university in a progressive Midwestern city. I loved the school and the community, but winters were tough. It wasn’t uncommon for the temperature to dip below 0°. Daily treks to class meant bundling up to such a degree that, while icicles formed on your eyelashes and inside your nose, you were a sweaty mess by the time you got to class. While I was making my daily journey over the hill to one of my language courses, a strange sensation came over me. At first I thought I was overheating from my winter garb. Then I had that same view in my eyes that you get when you are accosted by a bright camera flash. Everything was bright and had a slightly blue tinge. I was sweating like crazy, my head was spinning, and I couldn’t breathe. I quickly sat on the cold wet ground in the middle of library mall to collect myself. After about five minutes I stood up, feeling okay, but slightly tired. I am not sure anyone even noticed. To the students, I appeared no less crazy than other eccentrics who frequented that corridor of campus. I wrote this episode off as “my time of the month”. I vowed that I would set up an appointment at the Women’s Health Center, and made my way to class.

My doctor at the health center used a line that I would continue to hear throughout my medical journey, “Well you are young and look healthy” (I was 5’2” and 110 lbs, and an active member of the diving team), and then also guessed that my menstrual cycled caused the symptoms I experienced on my way to class. It sounded logical to me, so when she suggested birth control pills to reduce the side effects associated with my period, I quickly agreed. For the time being, the pill seemed to do the trick. I no longer had cramps, dizziness, or hot flashes. But by the time I graduated from college, the symptoms reappeared. I would feel dizzy, see stars, feel a tingly sensation in my arms and a weight on my chest, and on occasion everything around me had the appearance of being under water.

Back in my hometown my mom took me to our family doctor. They ran lots of tests, drawing blood, listening to my heart and even testing for STDs. This time the doctors came to the conclusion that all of my symptoms indicated that I was having panic attacks. Hmmm, panic attacks? It seemed a little unusual to me given that I was enjoying my life, and about to move to Spain to be with my boyfriend and friends and to compete in snowboarding. I had my whole future pretty well lined up and didn’t feel particularly concerned. The doctors and my mother reassured me that any life change can cause a panic attack even if you aren’t worried. After all, I was a “healthy young woman.” My panic attack diagnosis happened before the prescription of antidepressants came into vogue.  So when the doctor told me it was just a panic attack and that all I needed to do was remain calm and take a breath, that was exactly what I did…for years.

Spain was fantastic. I snowboarded, hung out with friends, and even managed to talk my way into some art classes while I was temporarily living in Granada.  (Art was always a passion of mine. I was just a few credits shy of an art major.) While I didn’t have a care in the world, my panic attacks continued. But I told myself that it was “just a panic attack,” and learned how to live with the symptoms. When I felt dizzy while exercising, I knew to slow down or stop to take a breath. Or when we all went out, I couldn’t really drink; it would just set off one of my spells and make me sick (thank god for the straight edge movement of the 1990’s. I didn’t even need an excuse not to drink). I was confident that once I returned home things would normalize.

I finally returned to the U.S. and enrolled in a PhD program in sociology out in California. The first year went by in a flash. Like most others in the program, I was living, eating, and breathing social theory. But on weekends, I escaped to the mountains to snowboard. In fact, that first year I won the Southern California Collegiate Ski Circuit in Giant Slalom Snowboarding. (I was even beating the boys.) I told people my competition secret was not eating breakfast…I was so hungry that while at the top of the course I would race to the bottom as quick as I could to eat. Not a particularly healthy strategy, but I guess that is how the mind of a 22-year-old works. During my races, my hands would tingle and about half way through, sometimes my arms felt like dead weights. I chalked this up to not eating before the race or a mild version of my panic attacks.

By my second year of graduate school, I put on a little weight. It wasn’t a huge amount; I went from 112 lbs to 120. Luckily, with my second year came a little more freedom in my schedule. So, I constructed and followed a rigorous workout plan with a friend of mine. The weight fell off. Before I knew it, I was down to 103lbs. At 5’2”, I wasn’t unhealthy, just extremely fit. But the workouts took a toll. I started to get my so-called panic attacks during my workouts. And a couple times I had to get off the elliptical machine or treadmill to sit down on the floor with my head between my knees before I passed out. Around the same time I broke up with a boyfriend. It was not a smooth breakup and I dipped into a bit of depression. Upon the suggestion of a friend, I saw a psychiatrist at our university’s health center. My friend had recently been diagnosed with anxiety and depression and successfully treated with an SSRI medication. I followed his advice, and after a brief meeting with the psychiatrist, was diagnosed with anxiety and depression and prescribed an antidepressant.

Being diagnosed as depressed was simultaneously liberating and terrifying. On the one hand, it gave me the chance to be treated with medication for something that impacted my life for a long time. But I hated the idea that I was depressed. (Alcoholism and depression runs in our family, and I couldn’t accept that I could fit into one of those categories.) With some hesitation I took the medication. It helped, at least for a little while. But by my last two years of graduate school it was like the flood-gates had opened. I gained weight like crazy, despite three hours a day at the gym training for a cycling fundraiser. I was  having excruciating migraines, and the dizzy spells continued. It got so bad I landed in the hospital a few times from passing out. But everyone I spoke to was convinced it was just stress from finishing a dissertation, planning my new life, and the fact that I had turned 30. (As if this is a legitimate reason that one’s body should start falling apart, “Well, you ARE 30.”)

Again, doctors, including a neurologist, cardiologist, nutritionist, and urologists ran all sorts of tests: EKGs, MRIs, Cat Scans, blood tests, urinalysis…you name it, I probably was tested for it. My heart, liver, kidneys, and hormone levels were fine, but I was diagnosed with migraines and put on medication for that, and my antidepressants were increased. Still at the end of the day, I still wasn’t feeling great. I didn’t feel like myself. But I learned how to live with it. Maybe this was the new me? I had turned 30 after all. So, I moved to Washington DC where I had accepted a research position, and had made peace with the idea that this is who I was…someone with migraines, dizzy spells, and about 20 pounds over weight.

That all changed last year while I was temporarily living in New Jersey for a new research job. I got out of bed one morning to get ready for work, and I fell to the floor. I could feel my arms and legs moving, but I couldn’t control them. I couldn’t seem to pull myself together. My body was acting of its own accord and I had no way to control it. My dog Digby was barking like crazy. Then when I came to I was shaking on the floor. I didn’t know how much time had passed and I was exhausted. I spoke to my General Practioner who recommended I go to the hospital and said something I hadn’t heard after over a decade of health problems, “Something is definitely not right. I think you might have had a seizure. ” Based on years of being written off and being told nothing was REALLY wrong with me, her concern shocked me. I headed to the hospital fully expecting to be released without concern and without a diagnosis.

I checked into the ER and told the nurse I thought I had a seizure. In an accusatory tone she said, “Well how do you know?” I explained what happened. She said it was doubtful, but gave me an ID band and sent me to wait in the waiting room. Shortly thereafter, a triage nurse came in, and in the waiting room asked me what happened. “I think I had a seizure.” She responded (again in an accusatory tone), “Well, did anyone see it?” I responded, “Yes, my dog, would you like me to bring him in to testify?” She then asked, “Well, did you wet yourself?” “No.” “Well, then it probably wasn’t a seizure.” The nurse was rude and violated the Family Educational Rights and Privacy Act (FERPA) regulations by questioning me in the waiting room, but at this point I was used to being written off. I didn’t expect anything different. In the eyes of the doctors I was a young and fit woman (despite the weight gain, I still exercised regularly, and I was a very young 34); how could anything possibly be wrong with me?

I was finally brought back to the back where a doctor with a thick German accent, a cool haircut, and fun eyeglass frames examined me. He didn’t spend much time with me, so I expected he would tell me it was just a dizzy spell, and discharge me. But after a six hour wait, he finally returned to tell me that he had spoken to my GP and they were concerned that there could be something going on with my heart, and that they did think I had a seizure. I couldn’t believe my ears…someone believed that there was something wrong with me and that I wasn’t making this all up. I was relieved, but scared as none of my family and friends lived in New Jersey. I was wheeled to the the cardio-pulmonary unit where they monitored me closely. I was hooked up to a heart monitor and was visited by a nurse every three hours to check my vitals.

The doctor didn’t tell me I looked “young and healthy,” rather, he listened while I told him that I haven’t been feeling myself for years and I was getting worse.

At around 11:00 pm, my first night in the hospital, I was visited by a doctor who would change my life. The nurses warned me before I met him, “Now we just want you to know, Dr. G. is a bit eccentric.” I responded, “Listen, I am an academic, eccentrics are my people.” The doctor looked Einstein-esque, if Einstein wore glasses and dressed casually. No stethoscope, no white coat; if he hadn’t introduced himself as my primary doctor, I would have guessed he was one of the many people there to visit the woman with whom I was sharing a room. The doctor told me to tell him everything, and through his gaze I could tell he was genuinely listening.  I explained what happened. He asked, “Have you ever had dizzy spells in the past?” “Yes.” “What about tingling in your hands and feet?” “Yes.” Have you ever passed out?” “Yes.” “Has anyone ever seen you have a seizure?” “No. I have never experienced the convulsion thing before.” “Well, I am not sure that it was a seizure, but I do think something is going on. I don’t want you to worry. We are going to figure it out. Just in case, I am going to order an EEG for tomorrow, as well as a few other tests. Don’t worry; we will take good care of you.”

The doctor didn’t tell me I looked “young and healthy,” rather, he listened while I told him that I haven’t been feeling myself for years and I was getting worse. The next morning I woke up and a battery of tests were waiting for me, including the EEG. I lay on a gurney while a technician used sticky goo to attach electrodes to my scalp. She was friendly and put me at ease. She said that for most of the test (which would last 30-40 minutes), I would lay still with my eyes closed while she monitored the electrical activity in my brain and videotaped me. During the last ten minutes, she created situations to induce a seizure. She started with a strobe light. This was irritating, but not unbearable. Basically it made me feel that I was looking through a kaleidoscope with little sense of space. But overall, it didn’t elicit the feelings of panic with which I had become familiar. Next I spent three minutes intentionally hyperventilating. There is no other way to describe this than HORRENDOUS. It was extremely uncomfortable, and I thought I would pass out. I was dizzy and felt like I had no control of my body. I cried and asked if I had to continue. She told me I was doing great, and went on. Finally the three minutes were up and I could relax. I wasn’t sure what would come out of intentionally hyperventilating, but I was glad it was over.

What has this experience taught me? Search for a doctor who looks you in the eye, and who listens, and who is willing to work with other doctors to search for an answer.

The next day, a doctor with salt and pepper hair and a serious look came into my room. He was the neurologist on call, and as I would come to find out, the chief epileptologist. He pulled up a chair next to my bed and asked me the same questions Dr. G. had asked the night before, then added a few others, “Do you ever experience Déjà vu? Or hallucinations?” “Sure, I experience Déjà vu, doesn’t everyone?” “What about hallucinations? Either visual, auditory, or smelling things that aren’t there?” “Oh, I get the smell one. And occasionally I have my own personal laser light show, and feel as though I am moving through water” “And do you see stars?” “Yes, that happens when I have my dizzy spells.” He asked me about every mysterious symptom I had ever had over the years, the tingly limbs, the migraines, the panic like sensation, all of it. Finally, he said, “We have the results of your EEG. When I read your file, I have to tell you, my initial thoughts were, ‘This is a young and healthy woman, I am doubtful that she had a seizure.’ But then I got your EEG results. It is definitive, you have irregular electrical activity in your brain.” I couldn’t grasp what he was saying. “Is or isn’t definitive?” I was sure it wasn’t definitive….nothing had ever been definitive, it had always been a best guess.”Is,” he repeated. Wow, could I be hearing this right? The doctor proceeded to tell me that all the symptoms I had described can be indicative of seizure activity in the temporal lobe. And that I likely suffered from something called partial complex seizures. “During the hyperventilation portion of your test, in a span of 3 minutes, there were eight times when you suffered from irregular electrical activity in your brain.”

I wasn’t depressed, or suffering from panic attacks. I was epileptic.

I could feel the grin cross my face. The first thing I felt was joy and relief. It wasn’t all in my head. I wasn’t depressed, or suffering from panic attacks. I was epileptic. Of course I had questions. “How would this change my life?”  I came to find out that once we found the right medications to control my seizures I would be 100% healthy. The neurologist prescribed my first anticonvulsant and kept me in the hospital to see if I had any physiological side effects. Not to mention, some anticonvulsants can actually cause severe depression, so he wanted to watch that too. The medication gave me some nausea, but no depression. So, I was discharged from the hospital with the name of an illness that had been plaguing me for years, Temporal Lobe Epilepsy (TLE). I will not lie; the next few months were a battle. The medication that I was on made me very nauseous and caused me to rapidly lose weight (every girl’s dream, right? Wrong! There is nothing worse than throwing up every morning and living in a permanent state of morning sickness). After three months on the medication, ample time to let my body adapt, and after regular check-ups, my neurologist switched me to a life changing medication. I never felt more normal in my life. I had a ton of energy, my weight normalized, I didn’t feel dizzy, and exercise gave me the extra zip it was supposed to, rather than draining me.  All those times I had felt depressed or not quite right, I wasn’t crazy after all. It wasn’t “all in my head.” There was something wrong with my brain.

Once the doctor felt secure in his diagnosis, he decided to try to locate the scar that was causing the irregular electrical activity. We knew from the EEG that it was in the temporal lobe, but he used a cat scan and MRI with contrast to see if it was visible. The purpose in locating the scar was for a last resort treatment. If medications didn’t work, the doctor could perform what he referred to as “minor brain surgery”. (Umm, this is brain surgery, is there such a thing as MINOR brain surgery? My brain is my livelihood.) According to the literature, Temporal Lobe Epilepsy is a fairly common form of epilepsy because the temporal lobe of the brain can easily suffer from damage from all sorts of things; including everything from the use of forceps at birth, low birth weight, a high fever, to drug and alcohol use and abuse. But this also meant that there was less of a chance that the doctor would be able to locate a scar; and he wasn’t.

During the first few months of my diagnosis I read everything on epilepsy I could get my hands on. This didn’t take long, because truthfully, there isn’t much out there. As I continued to read, I was shocked to learn just how common epilepsy is in the United States. Just last spring, April 2009, Newsweek featured a series of articles on epilepsy. In the cover story, “A Storm in the Brain,” journalist Jon Meacham shares that, “Epilepsy in America is as common as breast cancer, and takes as many lives….There are 200,000 new cases each year and a total of more than 3 million Americans are affected by it-more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.” These numbers were staggering. Yet I spent the vast majority of my adult life without a diagnosis. Why? Because I am “young and look healthy?” My guess (which is confirmed by Elizabeth A. Klonoff and Hope Landrine in their extraordinarily helpful book Preventing Misdiagnosis of Women: A Guide to Physical Disorders that have Psychiatric Symptoms) is that many women’s physiological ailments are written off as psychological. What is more shocking is that a number of neurologists believe that there is a personality and psychiatric symptoms that are associated with TLE. These include emotionality, mania, hypergraphia, religosity, and a sense of personal destiny, and are demonstrated in a book written by Eve LePlante called Seized. Some of these personality traits are ones that I have, albeit a mild version. But to so many doctors, personality is indicative of our psychology not our physiology, so I guess I should not be surprised that these traits did not help lead doctors in the right direction.

I asked him if he would consider talking to my doctor in New Jersey. He said no. I just don’t understand. This doctor could find out valuable information through a simple exchanging of words.

So, my doctor had figured out my mystery illness; one that is not uncommon yet frequently undiagnosed or misdiagnosed as a psychiatric condition. I was not depressed, I didn’t have low blood sugar, I wasn’t having panic attacks and it couldn’t all be written off because I had turned 30. I have temporal lobe epilepsy. Since my diagnosis, I have made peace with this identity I had been given. In fact, I embraced my new nickname, “epilsexy”, and my life as a one-person party. (Let’s face it,  someone who has their own personal laser light show is definitely a one person party.) However, my story does not end here. I have returned to DC and am back on the doubt train….doctor-doubt that is.

I have a new neurologist, who is suspicious that the strange electrical activity that is happening in my brain is not symptomatic of epileptic seizures. Meeting with him I began to hear the phrases I’ve heard so many times before and had already dismissed, “It could be low-glucose.” “Or maybe it is panic attacks.” (As if past doctors hadn’t thought of these explanations before.) The level of frustration I felt sitting in his office as he explained these possibilities to his resident is indescribable. Once again, I am being dismissed. What’s more, I am having break-through episodes (this is what we call seizure activity occurring while you are on your medication). I know my neurologist in New Jersey was planning to up the dose of my anticonvulsant, as I am on a very low does, but my new doctor seemed reluctant to do so. Instead he wants to order a round of new tests. When I explained the break-throughs he said, “Well, c’est la vie.” Unable to contain myself any longer, I said “No, no! Not c’est la vie.’ This is my LIFE.” I am genuinely tired of being written off. I asked him if he would consider talking to my doctor in New Jersey. He said no. I just don’t understand. This doctor could find out valuable information through a simple exchanging of words. But instead I am now signed-up to be admitted to the hospital for a four-day EEG, during which I will have fifty-five electrodes pasted to my scalp, a pulse-ox monitor put on my finger and a heart rate monitor glued to my chest. I will have to sleep with the lights on and have my vitals checked every four hours as they wean my body from the medications I am currently taking. Their goal? To induce a seizure. All because this doctor thinks he knows better than the doctor in New Jersey? Or because we don’t have a convenient system with which to share medical records electronically?

I embraced my new nickname, “epilsexy”, and my life as a one-person party. Let’s face it. Someone who has their own personal laser light show is definitely a one-person party.

Young and healthy? Yes. I am, aside from the fact that something a little whacky seems to be happening in my brain (I do think they are seizures…it is the only thing that has 100% made sense). I am outgoing, love to have fun, and I am full of adventure. What has this experience taught me, that I can now teach you? Search for a doctor who looks you in the eye, and who listens, and who is willing to work with other doctors to search for an answer. Keep a copy of your medical records, no matter how trivial the problem seems to be. It could all be related. In the meantime, keep your fingers crossed that congress comes to some consensus about health care reform, and that that whatever they come up with will encourage doctors to collaborate rather than compete. At the end of the day, our health should come ahead of ego, our quality of life depends on it.

CONDUCIVEMAG.COM

Sarah Edith Jones has a doctorate in sociology from the University of California, Santa Barbara. Currently, Dr. Jones works as a survey researcher at Mathematica Policy Research in Washington, DC, specializing in qualitative research design. Her current projects include a study of teacher cultural competency in a midwestern city, the dissementation of knowledge for low income women through community based health organizations, and adequate health care coverage for children. Aside from her research persuits, Dr. Jones is on the editorial board of Conducive, paints, does printmaking, and spends as much time outdoors as possible, snowboarding, white water kayaking, and hiking.

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