Part 1
Disclaimer
The following content is based on true and recent events. It is written with purpose of self-awareness and gratification. None of the content listed is fictional or biased to stigmatize people living with neurological disorders neither to pursue any negligence as medical ethics are concerned.
The Mysterious Disorder of Epilepsy
Living with undiagnosed medical symptoms can be a perplexing and unsettling experience. In this article, I will share the journey of how I was wrongly diagnosed with epilepsy at 32 years, detailing the initial symptoms that led me to seek medical help, the challenges encountered during the diagnostic process, and the profound impact of the misdiagnosis on my daily life. By sharing my story, I hope to shed light on the importance of self-awareness, the emotional toll of a misdiagnosis, and the eventual revelation of the true underlying condition.
How it all started
Saturday was a hard day with my weekend workouts. My hamstrings, gastrocs and trunk muscles were paining from the previous day strain. Checking my out-stocked drug cabinet, I borrowed a pain tab from my next-door friend. Oh! Only Tramadol-paracetamol combo tablet was then available, I could not forfeit pain relieve for the awful effects of tramadol.
My Sunday morning started with a strange seizure episode that seemed to come out of nowhere. At first, I would feel a sudden sense of unease, followed by a tingling sensation that would spread throughout my body. These episodes lasted only a few minutes, but they left me feeling exhausted and confused. Things got scary when I lost my conscious and fell on way to the washroom, gratitude to family members who were with me during the episodes. With evidence of the incidence, my wife and sister got concerned and worried what had just happened.
Seeking medical help
Concerned about these unexplained experiences, I decided to seek medical help. I made an emergency appointment with my primary care physician and described my symptoms in detail. Despite my best attempts to explain what was happening, the doctor seemed unsure and referred me to a specialist. This meant getting an in-patient booking thus admission for specialist review, neurological monitoring and further evaluations. At this stage I would feel anxiety swelling up my little sparkling brain.
Medical Evaluation: The process of seeking a diagnosis
Initial medical examinations
Upon visiting the specialist, I underwent a series of initial medical examinations. They checked my reflexes, conducted neurological tests, reviewed my medical history, did several audiological tests that included CT scans and even toxicology tests to rule out poisoning of drug use. Despite all the tests, no definitive answers were found. In view of previous seizure history, I was booked for neural HDU monitoring for at least 48 hours.
HDU care: Review with specialists
During the HDU stay days, the intensivist, perplexed by my symptoms, referred me to a team of experts, including neurologists and epileptologists. This consultation involved numerous discussions and additional examinations to unravel the mystery behind my episodes.
Diagnostic tests and procedures
To further investigate, I underwent various diagnostic tests, including an electroencephalogram (EEG) and a magnetic resonance imaging (MRI) scan. These tests aimed to rule out any underlying organic or inorganic neurological conditions and provide more insights into my mysterious episodes.
Mysterious Diagnosis of Epilepsy at 32 years
Receiving the mysterious diagnosis
After 48 hours of anticipation, I finally received a diagnosis – epilepsy. To say I was shocked would be an understatement. The news was overwhelming, and I couldn't help but question its accuracy. It felt like my world had been turned upside down, with a lifetime of uncertainties ahead. My grief and denial would not be masked anymore, it was the beginning of real emotional breakdown. Despite the support by the clinical team and close family, I would not get at peace. Next step was to discuss on the treatment and management plans.
Impact of treatment and medication for the mysterious diagnosis
With the epilepsy diagnosis in hand, I was prescribed Levetiracetam(Keppra 500mg) an anti-seizure medication. Unfortunately, these medications came with their own set of side effects, leaving me feeling even more out of sorts. Despite faithfully following the treatment plan, my episodes persisted, creating further doubts about the accuracy of the diagnosis. Apparently, these episodes happened sporadic during the night when the HCPs were off bedside; my cunning self-lead me not to report with fear of confirmation of the mysterious diagnosis. This was the point that I started the request for discharge from the facility.
Discharge with health education on the mysterious diagnosis
It was the discharge doctor’s round that a team of physicians and Nurses came to give a health education. They stated that; living with an epilepsy diagnosis meant making significant lifestyle adjustments. I had to be cautious about certain activities, avoid driving for a period of at least 3 years, avoid closed rooms-including bathrooms and toilets, no more swimming pools, no leisure drinks, and to disclose my condition to employers and loved ones.
These changes, prompted by a potentially incorrect diagnosis, added to the stress and uncertainty I already felt. With the impression of noncompliance and overwhelmed emotions the concerned team even proposed a psychologist follow up that I openly declined. The team even changed the medication from Levetiracetam 500mg to Carbamazepine200mg (Tegretol) that deemed to be more body friendly as far as the side effects were concerned.
Impact on Daily Life: The effects of the misdiagnosis
Side effects of unnecessary medication
Despite the medication adjustments, the unnecessary medication I was prescribed to treat the misdiagnosed epilepsy had its consequences. With few days of use, experienced drowsiness, loss of coordination, blurred vision, loss of recent memory, agitation, lack of concentration, and even mood swings. It felt like I was battling two conditions – the mysterious episodes themselves and the side effects of the medication. This was way too much to handle.
Emotional and psychological impact
The rollercoaster of emotions that accompanied the misdiagnosis and its aftermath took a toll on my mental well-being. The constant uncertainty, frustration, and confusion affected my mood and overall outlook on life. It was challenging to remain optimistic when faced with such a puzzling situation.
Interference with personal and professional life
The misdiagnosis not only impacted my personal life but also interfered with my professional endeavors. Anticipated frequent medical appointments, medication adjustments, and the need to disclose my condition to employers created additional stress and strain. It would be a constant juggling act to balance my health concerns with my responsibilities.
In the end, the misdiagnosis of epilepsy turned my life upside down, leading me down a confusing and frustrating path. But as I would soon discover, the journey towards finding the correct diagnosis had just begun.
Stay tuned for the next chapter in my medical odyssey – the search for the truth.
