This is the story of a seven-month ordeal involving a mysterious brain illness, its painful symptoms, and the struggle for diagnosis and treatment.
The Onset of Symptoms
It began around September 10th, 2021. The initial symptoms were seemingly innocuous: fatigue and malaise. These symptoms persisted and worsened over weeks, without the typical signs of a cold or flu like a runny nose or sore throat.
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Extreme fatigue.
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Intense malaise and grogginess.
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Diarrhea.
A COVID-19 test came back negative, as did a test for mononucleosis. However, stranger symptoms soon followed.
Development of Neurological and Mental Instability
More disturbing symptoms developed.
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A numb feeling behind the forehead, like an injection of lidocaine.
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Mental instability, described as feeling like one's brain was teetering back and forth.
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Perceptual shifts, where the world would suddenly become devoid of meaning for hours at a time.
The feeling of malaise intensified, creating a sensation of immense weight and grogginess. Neurological issues also emerged, including shaking hands, legs giving out while walking, and difficulty speaking, including stuttering and slurring. This culminated in a trip to his parents' home in northern Idaho.
A Turn for the Worse: Psychotic Symptoms
After taking a low-dose CBD/THC oil, the situation drastically worsened.
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A nightmarish feeling of sinking and impending doom.
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Intense panic and shaking, especially at night.
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Perceptual distortions: family members' faces appearing evil, with staticky, beady eyes.
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Olfactory Hallucination: Smell of burning metal
These terrifying symptoms led to an emergency room visit and a dose of Ativan to induce sleep.
Daily Battles with Panic and a Deteriorating Reality
The following days were characterized by constant panic attacks, a static-filled visual field, and the continued horrifying perception of faces. Auditory hallucinations also occurred. After the CBD/THC experience, life became "hell," with intense brain fog, disconnection from reality, and magnified perceptual shifts.
Seeking Diagnosis: A Frustrating Search
Neurological examinations and MRIs came back normal. Initial hope rested on a diagnosis of porphyria, due to elevated porphyrins in lab results. A restrictive diet of plain noodles and chicken was adopted, but DNA testing ultimately ruled out porphyria.
Spinal Tap and Disappointing Results
A spinal tap was performed to check for autoimmune encephalitis. While the spinal tap showed elevated pressure, which briefly brought hope, all tests for antibodies came back negative. One test revealed elevated myelin basic protein, indicating possible demyelination. However, neurologists deemed this non-specific and unhelpful for diagnosis.
Misdiagnosis and the Psych Ward
Despite the absence of a clear diagnosis, the speaker’s neurologist eventually agreed to try IVIG treatment, but insurance required a trial of steroids first. Meanwhile, a Snapchat video triggered a severe dissociative episode. This culminated in the decision to seek inpatient care.
A Bipolar Diagnosis and Inpatient Experience
Upon arrival at the hospital, the speaker’s symptoms were misinterpreted as bipolar disorder. This led to admission to the psych ward, treatment with antipsychotics (Zyprexa) and Ativan, and a sense of hopelessness. After two nights, the speaker decided to leave the psych ward, feeling misunderstood and misdiagnosed.
Finally, a Breakthrough with Steroids
After discharge, the speaker continued to struggle with symptoms. Eventually, his twin brother, Eric, advocated for a trial of steroids, which resulted in a 50% improvement. This breakthrough prompted the speaker to pursue steroid treatment as well, which finally led to some relief.
Post-Viral Non-Recurrent Encephalopathy
Despite the improvement with steroids, a definitive diagnosis remained elusive. The final diagnosis was post-viral non-recurrent encephalopathy, a somewhat vague explanation that essentially meant something went wrong with the brain after a virus, but the exact cause remained unknown. The speaker suspects a mild to moderate case of encephalitis.
Life After Hell: Lingering Effects and Recovery
While the worst is over, the speaker continues to deal with the repercussions of this ordeal. Lingering issues include perceptual problems, anxiety, brain fog, and a general feeling of not being himself. Despite the challenges, he remains thankful for the support he received and hopeful for a brighter future.
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