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Silent, subtle & unseen: Why are seizures hard to diagnose? Identifying and improving gaps in epilepsy care

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The dramatic and disabling nature of seizures is reflected in the word itself, which comes from the Greek for “seize” – as an invisible force suddenly grasping someone and controlling his body. This sense of unknown power has given rise to many superstitions and misconceptions about seizures throughout history.

Over the past century, the public’s understanding of seizures has come largely from film and television depictions, which are often as disturbing as they are inaccurate. While these dramatic images enhance the visual narrative, they often perpetuate the stigma and downplay the complexity of the seizures.

The truth is that seizures are much more varied than what you see in popular culture. Instead, they are often subtle, silent, and invisible.

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As a neurologist who specializes in the complex treatment of people suffering from convulsive seizures, I specialize in the treatment of patients with epilepsy. This includes identifying and addressing gaps in the treatment of epilepsy. Research shows that there are many.

Why do seizures occur
A seizure is triggered by sudden, uncontrolled electrical activity in a group of neurons. This hyperactivity overrides the brain’s normal tendency to suppress such abnormal activity at both the cellular and network levels.

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Not all seizures indicate epilepsy. An otherwise normal brain can experience seizures during alcohol withdrawal. Convulsive phenomena can also occur with an acute decrease in blood flow, which can cause fainting.

On the other hand, seizures associated with epilepsy are unprovoked and often very difficult to predict. A wide range of underlying anomalies can lead to the development of epileptic seizures, including brain tumors, infections, strokes, traumatic brain injury, autoimmune conditions, developmental anomalies, and genetic predisposition.

Seizures are not uncommon

Approximately 1 in 10 people will have a seizure during their lifetime. But only those at risk of recurrent unprovoked seizures are considered to have epilepsy, which is about 1 in 26 people.

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Due to the wide variety of symptoms, significant delays in diagnosis and treatment can occur. If not recognized and treated, seizures worsen over time and lead to reduced quality of life, cognitive impairment, injury, including car accidents, and sometimes death.

The irony is that most of the suffering is unnecessary. Most people with epilepsy can get rid of their seizures with an inexpensive medication.

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focal convulsions

Regardless of the cause, focal seizures are the most common type of seizure in adults. This type of seizure occurs due to hyperactivation of a limited area of ​​the brain. For example, a seizure that originates in the left motor cortex can cause the right hand to shake. A seizure that originates in the visual cortex can cause the person to see flashes of light or other strange visual phenomena.

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The most common area of ​​the brain where focal seizures occur is one of the temporal lobes, of which there are two, one on each side of the brain. These lobes serve many functions and are involved in vocal, auditory, and visual processing, as well as emotion and memory. This is why seizures occurring in these areas can lead to many unusual symptoms.

Often, focal temporal seizures are subtle, especially to bystanders. Sometimes they consist of completely unusual internal sensations, such as a sudden intense fear, a sudden feeling of déjà vu, or perhaps a strong smell. Until the seizure spreads to other areas of the brain, it may not cause loss of consciousness or seizures.

Because untreated seizures become more frequent and severe over time, epilepsy often begins with these relatively subtle focal seizures, then worsens as the seizures begin to involve more brain tissue and eventually progress to seizures.

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Delays in diagnosis
My patient has been describing strange symptoms for over a decade – symptoms that he has never discussed with me or anyone else before. He described recurring, sudden euphoric sensations that progressed to inability to speak for one to two minutes. An outside observer might think that he was just looking into space. Over the years, these feelings have intensified. Over time, they became more severe and led to loss of consciousness.

After the patient started taking anticonvulsant drugs, the sensations disappeared and he reported an improvement in both memory and cognitive functions. Luckily, he hadn’t sustained any injuries or worse before the examination. But many are not so lucky.

Recent studies have confirmed that delays in diagnosis are common among people with epilepsy. Undoubtedly, this is due to the fact that early subtle and unusual symptoms are poorly recognized by patients, families or healthcare professionals.

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Demonstrative Study
The Human Epilepsy Project is a large, multinational, prospective study that followed almost 500 people with newly treated focal epilepsy over five years. I was among the researchers who analyzed the study data, and we found a striking delay in diagnosis in many of the participants. Many of them experienced seizures for several months or even several years before being diagnosed.

From the first seizures to diagnosis, half of the participants had injuries; 5% had car accidents associated with seizures. Extrapolating these data to the general population, it can be estimated that more than 1,800 traffic accidents occur each year in the United States due to undiagnosed subtle focal seizures. With timely diagnosis, these accidents can be prevented.

However, even those who have been diagnosed with seizures do not always receive the correct diagnosis or treatment. Nearly two-thirds of Human Epilepsy Project participants went to the emergency department for their initial epilepsy evaluation. About 90% were there only after their first seizure, that is, after the seizure had spread and now involved the entire brain.

But in the run-up to this first seizure, nearly half of the participants had non-motor focal seizures that largely went unnoticed. For this reason, many people who could have been diagnosed with epilepsy and started treatment did not have it.

Currently, about 200,000 American adults visit the hospital emergency department for their first seizure each year. Often they are diagnosed with epilepsy at this time or shortly thereafter. Poor recognition of subtle seizures has serious consequences for individuals, communities and the health care system. Improving our understanding of the different ways seizures occur and their impact on life will help us close the gap and lessen the consequences.

(This PTI was syndicated through The Conversation)

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