The following list compiles all the symptoms I’ve experienced during this phase of life.
Mental Status Changes
My first symptoms relating to this illness were psychological. I began to experience rapid mood swings every other day. This was first thought to be an atypical presentation of Bipolar II disorder. I experienced major depression and extremely low energy, often sleeping for twelve consecutive hours. At other times, I experienced hypomania, impulsivity, and obsessive-compulsive behavior, remaining active and energized with only three hours of sleep. I also experienced panic attacks for the first time in my life, which manifested through new levels of anxiety, paranoia, hyperventilation, and chest pressure. I found myself dissociating regularly and only responding to stimuli with difficulty. Vivid daydreams placed me in a different reality.
In the heat of this illness, I was often confused and forgetful. I was unable to multitask or tolerate much stimulus at once. I frequently made mistakes and my grammar became significantly impaired. Sometimes, the faces of people I loved looked foreign to me. During and after seizures, my mental status was particularly impaired. I would laugh, smile, and wave without reason. I felt like I was in a dream, complete with a skewed perception of time.
Seizures-like Episodes
I experienced non-epileptic seizures, sometimes referred to as psychogenic seizures. These resembled simple partial (focal) seizures where consciousness was not lost. The EEG results showed brain irritability or sharp spikes, but no epileptic activity was found, meaning the origin of the episodes were not expected to be coming from abnormal electrical activity in the brain. These usually ranged from one to four per day and precipitated from too much stimulus.
EEG reports, later released: "This is an abnormal video EEG study. Continuous EEG recordings showed slow wave activity in the temporal electrodes in both hemispheres, at times appearing more prominent on the left, consistent with focal cerebral dysfunction in the temporal regions, which may be more prominent on the left. There were rare sharply contoured slow waves seen in the left temporal electrodes, raising the possibility of potential epileptogenicity in the left temporal region." "Continuous EEG recordings showed focal slow-wave activity and epileptiform discharges independently in the temporal electrodes in both hemispheres, consistent with potential epileptogenicity and focal cerebral dysfunction in the temporal regions."
These episodes began when I became “frozen” or unresponsive. I felt cold impulses throughout my extremities and through my core. Oddly enough, my nose began to itch every time. I felt shaky inside, like I was fighting off internal tremors that wanted out. This was followed by violent arm spasms or convulsions which lasted about a minute. My recovery period, resembling a postictal state, usually lasted between one and two hours. I often felt like I was waking up from a dream and found it hard to respond to questions and commands. The related symptoms I experienced during these episodes are listed below.
Expressive Aphasia
I knew what I wanted to say but simply could not do it. My words came out in simple, broken English or slurred into incomprehensibility. My speech was slow and hesitant. The severity of my symptoms varied almost at random, ranging from not being able to form proper sentences, to speaking nonsense, to being incapable of any speech at all.
Foreign Accent Syndrome
Though I am from Kentucky, my speech began to resemble a combination of French, German, and Chinese. This started as an occasional occurrence related to seizures or exhaustion as the day progressed, but eventually became a constant.
Difficulty Walking
My walking became slow and lacked coordination. This sometimes resulted in small steps with toes curled under and ankles flexed, but at other times my steps were exaggerated, as though I was attempting to step over a hurdle. It required a lot of thought to put one foot in front of the other. Once, while having an episode while standing, I began to walk in a circle towards the right. During or after seizures, I found it hard to move at all, and depended on my boyfriend, a rolling walker, or a wheelchair to carry me from place to place.
Muscle Spasms
Involuntary muscle contractions — also known as dystonia — came with the seizures. Internal tensing of fingers, wrists, arms, toes, and ankles were often painful and resulted in rigid, wax-like movements. Facial and jaw muscle spasms contorted my face; my head would jerk back, neck hyperextended. Abdominal and chest spasms often caused irregular breathing. Outside of episodes, my arms and legs cramped randomly.
Facial Asymmetry
I often looked like a stroke victim during and after seizures. Many seizures began with my left eye shutting tightly as my left eyebrow rose involuntarily. The right corner of my mouth drew down, and my smile and yawn were asymmetrical. My tongue would go to the right when I attempted to stick it out straight. Sometimes I was unable to blow out the left side of my cheek. During an isolated event, I only felt the right side of my face and a spot over my left ear during a peppermint oil facial massage. It felt as if a line divided my face right down the middle, causing the left side to feel absolutely nothing.
Vision
During my seizures, I had difficulty controlling my eyes. My rapid eye movements resembled nystagmus and included rapid blinking and a frequent involuntary drift to the right. Sometimes they rolled back into my head or crossed. This caused blurry and double vision and gave me trouble focusing on a single point. My eyes seemed to play tricks on me as objects would elongate while shadows moved unnaturally.
Headaches
My brain felt under attack. I experienced a general tingling sensation with random, sudden stabs of pain in my temples, ears, and throughout my head. The ice pick headaches never lasted long. Ear aches were common with intermittent pounding or pulsating. I occasionally heard ringing, white noise, or blood whooshing. My ears felt weighed down or full of fluid. I experienced strange sensations, including a single point which crawled around under my scalp like a bug, only it couldn’t cross the invisible line dividing the right and left sides of my skull.
Hypersensitivity
My ears were extremely sensitive at all times. High-pitched scraping noises, like a fork hitting a plate, produced an exaggerated physical response like letting out a yell or jerking my entire body to the right. I had similar responses to being startled, which might come from something as simple as a phone ringing unexpectedly.
Delayed Response
Sometimes I responded to a command slowly and with small movements. At other times, my response was extremely delayed, sudden, and exaggerated. For instance, during an episode it might have taken me a whole minute to respond to a command to squeeze somebody's hand. When I finally did, it wasn’t a light squeeze; it was a sudden, strong grip. I needed time and focus after that to release their hand again.
Other related symptoms
Thyroid enlargement (goiter)
Psychomotor retardation
Hyperreflexia
Fatigue and acute weakness
Cold intolerance
Generalized swelling and weight gain
Abdominal pain
White nipple discharge
Positive Hoffman's sign
FOR THOSE EXPERIENCING SYMPTOMS:
Call 911 if you or your loved one has become unresponsive or is experiencing their first seizure, stroke-like symptoms, difficulty breathing, or extreme weakness.
You or your loved one may be experiencing symptoms of autoimmune encephalitis.
Your emergency service providers and primary care doctor will probably not be familiar with autoimmune encephalitis. Your initial assessment may only show a thyroid abnormality. However, without proper treatment beyond that of your thyroid, your neurological functions may decline. It is crucial that you are referred to a neuroimmunology specialist. Go to hesaonline.info or aealliance.org to find a qualified specialist near you.
Your health and safety are top priorities. It is likely that you will need someone to care for you as the disease progresses. If you do not have a family member or friend who is available to care for you full-time, ask your doctor about home health nurses and assistive devices (canes, walkers, wheelchairs, shower seats, etc.).
Advocate for yourself! Advocate for your loved one! This illness is rare, under-researched, and not easily diagnosed. This can be extremely frustrating, but do not lose hope! Once you get the right physician to listen to you, your illness can be treated and managed.
Feel free to contact me with questions :)