Incredible 1st person account of surviving AE
November 22, 2016
At this time of Thanksgiving, we are grateful to Kimberly and all of you who write to us. Whether you are looking for information, support, a doctor, or writing with appreciation we at AEA are thankful for you. Your generous donations allow us to aid people like Kimberly. Please consider showing your support for all those patients, family members, and friends who are affected by AE by making a donation.
Here’s Kimberly’s incredible story:
August 2010, as a 26 year-old, I moved to China for an exciting teaching opportunity. While settling in, I experienced an interesting turn of events. One afternoon, while on a run, a metallic taste filled my mouth and I had a flashback to my tonsillectomy. My body tingled and an overpowering smell filled my nose. This moment was just the beginning. I had had my first simple-partial seizure which soon became daily. Intensity quickly increased and began to include facial twitching, numbness, auras, hallucinations, loss of breath, and tightness in my throat. During each event, my thoughts were impaired but I pushed myself forward.
Without a clear understanding, I believed this to be culture shock. I began watching my diet, avoiding alcohol, and reducing exercise, although my health kept rapidly declining. Toward the end of October, seizures overtook my sleep; I felt vibrations spark through my head while eating; and I began losing short-term memory. I was beside myself and those around me were concerned, but I refused to give up as I continued teaching.
In addition to seizing, I became emotionally unstable that November. My uncontrollable highs and lows, including elation, depression, fear and outrage, were simultaneous. At first, I was able to maintain my lifestyle; I traveled with co-workers, tutored students, and enjoyed exploring the city. By December, difficulty sleeping heightened my feelings and, in spite of local treatment, life was very challenging. By January, I began pacing for hours and was unable to focus, as even How I Met Your Mother was confusing to watch.
After this 4-month downward spiral, I hit the bottom. On January 31st, I awoke from a nap in a hallucinatory state. I felt worms crawling inside my body. I dug my nails into my stomach, scratching and picking my skin. Where was I? Was I was dead, alive or, perhaps, in a dream? What happens now? Throughout my hysterical sobbing, a close friend helped me regain control while contacting my family. He assisted my travels back to the United States and was with me during my first hospital stay.
When I arrived home on February 1st, fear was my main emotion. I was initially treated for Generalized Anxiety Disorder; however, on February 14th, I had a convulsive seizure and was admitted to the local hospital. The results of a 4-day electroencephalogram (EEG) led to epileptic medication. As my friend returned to China, I convinced myself I’d be back to work within a month.
Even while medicated, my symptoms worsened. Over the following year, I lost my ability to read and write, noise brought on seizures, and communication became difficult. I mentally returned to my childhood. Each day consisted of coloring pictures and watching cartoons while I needed assistance eating, felt overwhelmed in public places, and often slept in my parent’s room. There were many evenings filled with hallucinations where bugs flooded through my body and strangers captured my mind. I constantly begged to be taken to the hospital but, no matter how hard I tried, I couldn’t understand my own feelings.
Despite substantial treatment for epilepsy and psychological conditions, in November 2011, I was committed to a psychiatric facility for erratic behavior and suicidal ideations. Within the facility, horrific negativity occurred and the atmosphere created seizure-based panic. My case was deemed “Dr. House-ish” and I returned to the neurological floor for additional testing. Through April, I visited various hospitals receiving MRIs, EEGs, a PET scan, spinal taps, and cocktails of medication. Positively, I met amazing patients and spoke with wonderful families and caregivers. Learning about different neurological conditions, and possible cures, gave me comfort.
During this time period, I was diagnosed with Autoimmune Limbic Encephalitis. My limbic system, controlling thoughts, feelings, emotions, and behaviors, was compromised. For this, my first treatment consisted of a weekly corticosteroid injection; however, I had also been given a medication for Bi-polar Disorder. As a result, I lived several months lacking impulse control. This ultimately led to a near fatal experience.
In May 2012, my life was about to change for the better. My parents took me to an appointment, in New York City, to meet with Dr. Souhel Najjar. I eagerly listened as he shared his expertise on Autoimmune Encephalitis and discussed treatment possibilities. It was extremely hard for me to comprehend. Confusion led to tears and frustration took over. In trying to control my behavior, my illness won the battle. I was engulfed by anger and began hyperventilating. I fell to the floor in a fit, yanked the door open, and shrieked for help. As a familiar doctor walked over, I grabbed his ankle before being lifted and taken to a separate room while my parents continued speaking with Dr. Najjar. In catching my breath, I was devastated. I thought I had lost this great opportunity, but I hadn’t. Dr. Najjar was the first person who truly understood my illness. As I was leaving, he shared his optimism for my future and ensured he would always be here to help. For the first time, I believed in survival.
I started a 2-year intravenous Immunoglobulin (IVIg) treatment that September 2012. This led to the return of mental stability although my cognition remained impaired. I was living in San Francisco, attending peer-to-peer meetings through The National Alliance on Mental Illness (“NAMI”), volunteering in the community, and taking education courses in an attempt to move forward. Unfortunately my epilepsy continued and, on October 2014, my medication, prescribed by an East Coast neurologist, caused me to lose consciousness. I fell, fracturing my skull, and was rushed to UCSF Medical Center. Dr. Jeffrey Gelfand took on my case, as a local immunologist, and Dr. Paul Garcia became my epileptologist. Regardless of medication, I continued seizing daily. This past January, with my approval, Dr. Garcia presented my case to the board of surgery. As it turned out, I had met with Dr. Najjar in December where he explained the likelihood of scar tissue triggering seizure activity and mental instability. He believed surgery would be the best option since it appeared that my condition could not be further treated with medication.
This past March, I elected to have brain surgery with Dr. Edward Chang at UCSF. I was scheduled for temporal lobe epilepsy surgery; however, another unbelievable turn of events occurred. My pre-surgical MRI indicated abnormal electrical activity in my left insula. My neurologist, Dr. Robert Knowlton, explained that my insula “lit up like a Christmas tree” for the first time on any of my MRIs. For further assessment, I was admitted for monitoring; 130 electrodes were placed inside my skull, both on the surface of my brain and within deeper structures, including the insula. In addition to intracranial EEG recording, which identified up to 30 seizures daily, the electrodes recorded nearly continuous abnormal epilepsy-related electrical activity in my left insula.
In preparing for surgery, “brain mapping” stimulated the recording electrodes with electrical currents to determine where certain brain functions were located and if specific seizure-related symptoms could be recreated. As these currents were given, I had to identify pictures and read sentences shown. Throughout testing, I experienced a variety of oral and facial numbness, an inability to speak, and memory loss. During the final stimulation, a complex hallucination was evoked. My grandmother was standing in front of me with a cup of Italian Ice. Although nervous, I felt safe since my doctors were present to observe and listen to my attempted explanation. Brain recording and mapping enabled an extensive, 8-hour surgery, on March 28, 2016. I experienced a successful removal of nearly all of my left insula1, along with the initially planned resection of my amygdala and hippocampus.
Since the surgery, my seizures are minimal and each day is full of positivity. It appears that the removal of my left insula has provided the emotional stability I’ve always wished for. This outcome has been a surprise to both my doctors and me. The lasting effect on my severe emotional swings has had an even more remarkable impact than the great improvement in my seizures. This surgery has truly saved my life.
I am beyond thankful for all that I’ve received. My friends and family, especially my parents, my brother and grandmother, have provided continuous love and the strength I’ve needed to survive. With everything I’ve been given, it is my turn to share.2 I’ve begun volunteering at the Epilepsy Foundation, along with the UCSF Benioff Children’s Hospital, to provide assistance and encouragement to others. I am so grateful for this opportunity to share my story. I am sending my wishes, support and encouragement to everyone reading. Please feel free to contact me at kimberly.bari@yahoo.com.
Footnote 1:
As Dr. Knowlton explained, “This was an extremely difficult part of the brain to access and resect because of so many blood vessels in this region. While performing the resection of the insula, recording electrodes were left in place to allow Dr. Chang to know when the continuous epilepsy-related electrical activity in this area was eliminated as much as possible.”
Footnote 2:
During my time at UCSF, with electrodes implanted in and on my brain, I participated in patient research. Dr. Chang’s lab uses the same recording electrodes (used for localizing seizures) to study how the human brain functions. They focus on detailed aspects of language processing and what networks of function occur during different states, including those associated with different moods. I genuinely hope the research I provided will help others
