Blog #115: Attitudes Toward Epilepsy

What does the public understand about epilepsy and what do they think about those people afflicted with epilepsy? A recent study in the United Kingdom (UK) explored these questions. The population studied was in the UK but my assumption is the American public would hold similar opinions. Researchers at the University of Bangor in Wales explored these attitudes.¹   Four thousand people in the UK were asked to share their views and knowledge about epilepsy, driving with epilepsy, work, family life and relationships.  

People with epilepsy report experiencing stigma, prejudice and discrimination. They often feel they are treated unfairly.  They inhibit themselves from discussing their condition and from seeking help. This can lead to withdrawing from social contacts and feeling shame or depression.

Below are the findings in this study:  

 

RISKS AND SAFETY CONCERNS

Attitudes towards driving and looking after children were explored. Half of the people would not let their child ride in a car with a driver who had epilepsy. Almost half said they would feel uncomfortable if their child rode in a car with a driver with epilepsy. Over a third said they would not employ someone with epilepsy to babysit their child.

 

PERSONAL FEAR AND SOCIAL AVOIDANCE

Stigma was low in this category. People said they would not be embarrassed if someone in their family had epilepsy. Most said they would be happy to work with or date someone with epilepsy. However, 25% of responders said they would be afraid to be alone with someone with epilepsy; just under a quarter would be nervous to be around a person with epilepsy fearful of them having a seizure.

 

WORK AND ROLE EXPECTATIONS

Most people said they believed people with epilepsy can be as successful as others at work and can lead ‘normal’ lives. Approximately 25% of responders believed people with epilepsy cannot do many work activities safely that others can.

            

NEGATIVE STEREOTYPES

People were asked if they thought people with epilepsy were less smart than others, or whether they shouldn’t marry or have children. Most responders disagreed with these statements.

 

CONCLUSIONS

This British research found the average person in the UK has a largely positive attitude towards people with epilepsy. But 10% of the four thousand persons in the study queried had a negative attitude and one percent had a very negative attitude toward people with epilepsy. These responses suggest that work needs to be done to increase tolerance toward people with disabilities and to ensure that people with epilepsy are no longer treated unfairly because of their epilepsy.

It’s understandable that driving has more negative attitudes but it highlights that more education is needed to show there are many ways to overcome the challenges of living with epilepsy. Fear and misunderstanding are forces behind discrimination and stigmatizing attitudes. This information of what the population knows and believes about epilepsy is important to inform people with epilepsy and their loved ones.

The study highlights that myths about epilepsy need to be challenged, knowledge about this condition needs to improve and that fear and prejudices need to be addressed. Training in schools and work places and first aid advice will give the general population confidence in helping people with epilepsy.

Read the full study here:  https://www.seizure-journal.com/article/s1059-1311(18)30684-8/fulltext

 

1. Holmes E., Bourke S.,Plumpton C. Attitudes towards epilepsy in the UK population: Results from a 2018 national survey.European J. of Epilepsy. February 2019 Volume 65, Pages 12–19.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

 

 

 

Blog #114: EPILEPSY SURGERY IN CHILDHOOD AND LONG-TERM EMPLOYMENT IS ENCOURAGING

   Studies and experience show that epilepsy surgery is safe and effective when the seizure focus is accessible to excision without risk of intellectual, language or significant focal weakness or numbness. When the surgery is done in childhood and adolescence, the long-term employment outcomes were similar to the employment histories of the general population.

   Investigators evaluated the Swedish National Epilepsy Surgery Register in this study.¹ They obtained data on 203 individuals with childhood-onset epilepsy who underwent epilepsy surgery between 1995 and 2012 when they were under 18 years of age (mean age 13.6 years). Participants’ pre-operative IQ (intelligence quotient) scores were 70 and above. Surgery did not appear to have any significant deleterious effect on IQ. A typical adult has an average IQ score of 105 with a standard deviation of 20; i.e. typical adults have an IQ between 85 and 125. Scores of 70-84 are below average but do not preclude success in social and family relationships and meaningful, productive employment.

   This study found that most surgery patients obtained at least a high school diploma or equivalent within 5 years after surgery. The employment rates at 5 years post-surgery were 44 percent and by the 20 year follow-up 77 percent were gainfully employed. These findings for seizure-free patients were comparable to the general population. Wages, occupational complexity and the extent of part-time employment data were not available. Non-seizure-free patients’ work histories would presumably be somewhat less than the above figures.

   Excellent long-term vocational outcomes are achievable after pediatric epilepsy-surgery. I encourage your consideration of possible epilepsy surgery with your neurologists.

1)      Reinholdson J., Olsson I, Tranberg A E; Long-term employment outcomes after epilepsy surgery in childhood. Neurology 2020; vol 94: Number 2, p 70: e205-e216. Doi:10.1212.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #113: Some Seizures Have Transient Residual Numbness/Weakness Lasting Hours or Days. “Did I Have a Stroke?”

Occasional convulsive seizures, non-convulsive seizures and the post-ictal state (the time after the visible seizure ends but the patient is still not back to normal) can have residual focal numbness or weakness that last minutes to hours or more after the event—unlike strokes these are not associated with demonstrable brain circulatory problems. This post-ictal phenomenon is referred to as a Todd’s Paralysis which can mimic strokes causing the patient to worry, “Am I having a stroke?” However, unlike most strokes, these worrisome symptoms soon dissipate. \

Transient ischemic attacks (TIAs) can cause these same symptoms. We use the term Todd’s Paralysis when the focal symptoms are due to seizures. TIAs are associated with brain circulation interruption and often predict a future stroke. These TIA symptoms can last minutes up to 24 hours and then disappear. But, if these focal symptoms occur and then disappear after a seizure we diagnose a “post-ictal phenomenon” or Todd’s Paralysis; this is not a stroke. 

How do the patient and the doctor differentiate the post-ictal focal numbness/weakness symptoms associated with an epileptic seizure from a true brain circulatory interruption causing a TIA or a stroke? The bedside medical evaluation sometimes leads to uncertainty. Often, rapidly obtaining an electroencephalogram (EEG) to diagnose seizures is not possible. Then how do we make an accurate diagnosis? We obtain a brain CT or MRI scan.

Fortunately, the CT scan is readily available and easy to do in Western countries. The radiologist performs a CT scan and then can inject a dye-like substance into a vein. The brain CT picture is again examined for perfusion or circulatory changes highlighted by the dye; it can differentiate seizure from TIA/stroke in those patients with symptoms suggestive of stroke with focal numbness and/or weakness and/or speech problems. Loss of consciousness is usually not associated with stroke or TIA.

No focal increased flow or perfusion in the brain cortex is seen if it’s a post-ictal state affecting one side of the face/body called “lateralizing signs.” This is how doctors can make this crucial diagnosis and reassure the patient no stroke happened.

The younger the patient with post-ictal lateralizing focal symptoms/signs that is not in the typical older-adult stroke population, the more reassured everyone can be that a permanent stroke is not occurring. A past history of Todd’s Paralysis, especially in younger people with epilepsy is also reassuring against stroke.

Migraine sometimes occurs without headache and it is another condition that can mimic clinical presentation of TIA / stroke. Brain scans are usually normal in migraine, abnormal in stroke. And migraine is a repetitive clinical situation which makes differentiating Todd’s Paralysis from TIAs and Stroke, easier. Recurrent migraine usually occurs at younger ages than stroke, too.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog # 112: ADD SEIZURES TO RISKS ASSOCIATED WITH E-CIGARETTES AND VAPING?

     Neurology Today ¹ reported that the United States Food and Drug Administration (FDA) is collecting reports of seizures associated with e-cigarettes and vaping. E-cigarettes, also known electronic cigarettes, are handheld battery-powered vaporizers that simulate smoking but without burning tobacco. Using an e-cigarette is known as "vaping." Instead of cigarette smoke, the user inhales an aerosol, commonly called vapor. E-cigarettes typically have a heating element that atomizes a liquid solution called e-liquid.^[5] E-cigarettes are automatically activated by taking a puff; others turn on manually by pressing a button. E-cigarettes contain propylene glycol, glycerin, nicotine, flavorings, additives, and differing amounts of contaminants.

     Development of serious lung problems, including deaths, is currently featured in the news. Research has not yet identified the cause of the lung malady.

     The FDA announced that since 2010, one-hundred twenty-seven cases of seizures have been reported in otherwise healthy eighth to twelfth graders, young people who had no past history of seizures or epilepsy. This youthful age-group who vape is also vulnerable to new-onset epilepsy. University of Michigan researchers reported that in 2019, more than one-in-four 12^th graders reported having vaped in the past month. Some had seizures following first-time use of the product, even after just a few puffs or up to just one day after first use. Data, currently still sparse, is being collected and reporting by physicians and the public to the FDA is necessary. Cause and effect of the seizures is not yet established. Fainting and tremors have been reported following vaping, but a direct relationship has not been determined.

     Physicians’ concerns are that we don’t know what individuals are actually vaping into their lungs. Arsenic, lead, manganese, chromium and nickel are among chemicals and toxins found in the vaping products including some products containing a nicotine intake equivalent to smoking one pack of cigarettes. The neurological complaints are, to date, few compared with the lung problems. 

     Add seizures to the risks associated with e-cigarettes/vaping. 

1. Neurology Today Vol: 19. Issue 20, October 17, 2019, page 1.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #111: MY EPILEPSY IS CONTROLLED. WHY DO I HAVE OCCASIONAL THINKING BLANK OUTS?

   The brains of people with epilepsy are not the same as the brains of the general population. 

   A new study by Stanford University epilepsy specialists⁽¹⁾ found electrical activity in epilepsy patients’ brains which can explain brief lapses in thinking, perceiving and remembering even in those whose epilepsy seems to be well-controlled by medication.

   High-frequency oscillations (HFO) are subtle, transient brain recording signals that erupt up to 100 times per minute in people who do not have epilepsy. However, these HFO “buzzes” are abnormal if they occur with an onset of a seizure in epileptogenic areas of the epilepsy patient’s brain. The HFO buzzes are not abnormal if they occur in parts of the epilepsy patient’s brain that are not associated with their seizures.

   In their study, the Stanford researchers tested six patients with intractable seizures who had sensors implanted in their brains for consideration for possible epilepsy surgery. Cognitive challenges were presented to the patients for them to solve during periods when a buzz of epileptic activity was interfering with their brains’ normal processes. Several HFOs per minute were seen on EEGs but clinical seizures were undetectable to observing neurologists. The researchers suggest that these HFOs could explain cognitive complaints from otherwise “normal-appearing,” epilepsy patients whose epilepsy is “controlled.” If the HFO occurred milliseconds before a seizure-prone brain area began processing information the HFO seemed to affect cognition The HFOs lowered the accuracy and speed of the patient’s thinking, i.e., the response time, even though visible seizure activity was not observed.

   The explanation for this brief deterioration is that HFOs within that period interfere with high-frequency broadband events, or HFBs. These healthy brain events occur in brain areas that are not affected by the epilepsy focus. HFBs are associated with a brain circuit beginning to do something the brain is supposed to do, as processing visual information or recalling previous experiences. HFOs can disrupt healthy brain activity for up to one second even though clinical seizure activity is not apparent.

   A computer was trained to accurately distinguish between HFOs and HFBs. In all six patients studied, if a spontaneous HFO occurred within one second before a task-elicited HFB should have arisen, it disrupted, delayed, diminished and often completely extinguished the HFB. Testing at these times showed this event slowed responses, showed poorer recall and reduced confidence in answering memory-evoking questions.

   The important conclusion from this study is that the epileptic tissue’s performance was normal outside the window of the HFOs. For the majority of the time when seizure-prone brain tissue isn’t experiencing HFOs, the brain tissue worked well in these test patients. Researchers advised that prior to surgery for its removal, physicians should weigh that much of the time the epileptic focus that is seizure-controlled can still have significant cognitive abilities. Is surgery to remove it still the best treatment considering side-effects?

   Bruce Goldman, a science writer in the Office of Communications at Stanford University, reviewed the researchers’ scientific article.

1)      Liu S,  Parvizi J. Cognitive Refractory State Caused By Spontaneous Epileptic High-Frequency Oscillations In The Human Brain. Science Translational Medicine Vol. 11, Issue 514, 16 Oct 2019.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #110: SHE HAD A CONVULSIVE SEIZURE. DOES THAT MEAN SHE HAS EPILEPSY?

After a first-observed convulsion causing loss of consciousness with falling and shaking, it is natural to wonder, will the person have another convulsion? If so, when? Why did it happen? Is this epilepsy or just a seizure? These are questions patients, families and doctors must deal with.

Epilepsy is diagnosed when more than one seizure occurs if the seizure is not a “reactive” seizure. Reactive seizure are caused by some transient medical condition that can disappear such as infections, toxins and drugs, or temporary loss of a body organ function (e.g., liver, kidney, lung, etc.) that then heal and further seizures do not occur. When a second convulsion occurs, even if the first and this second seizure are separated by years, epilepsy is diagnosed. Epilepsy means recurrent seizures.

Epilepsy can be caused by brain injuries, strokes, tumors, infections, degenerative diseases such as Alzheimer’s disease, Multiple Sclerosis, Parkinson’s Disease, inherited conditions, and other diseases. Recognition of genetic causes of epilepsy is rising as science improves to identify abnormal genes. However, epilepsy is not common in families. Causes for approximately 50% of epilepsy cases are never found. Currently, onset of epilepsy is no longer most common in children, rather, it most commonly occurs in those over age 60. This is because we are living longer and we are susceptible to more insults to our brains.

One percent of the world-wide population has epilepsy. Approximately half of all people with epilepsy have their seizures controlled; these people can remain seizure-free if they are on the “best” anti-epilepsy drug (AED) at the “best” dosage for that individual. They must continue this medication as they are not cures. Finding this medication is a trial-and-error process of the patient working with doctors and the AEDs. Another 30% of epilepsy patients will have a seizure every few weeks to months; they have “incomplete” control. The remaining 20% of patients have “uncontrolled” epilepsy; they experience seizures each day or every few days despite taking AEDs. Epilepsy brain surgery is the most effective treatment to decrease or even cure epilepsy for people in whom no AED works. If the brain focus causing the epilepsy can be identified on various tests then attempting its surgical removal is deemed promising for marked improvement in epilepsy control or even cure.

Brain scans (to search for abnormal areas) and electroencephalograms (EEG) may identify a seizure-causing focus. Spinal taps (if infection or other brain conditions are suspected) and blood and urine tests to screen for other conditions also help doctors identify epilepsy causes.

EEGs are normal in half of all people with epilepsy because the test of multiple wires on the scalp is done for just an hour or so and the EEG abnormalities do not always occur during that time. Ambulatory EEGs (the person has EEG wires pasted on the scalp connected to a small recording device on their body as they carry out daily activities over 24 hours) may pick up abnormalities. More sophisticated testing in special labs can be done where EEGs and video cameras are used to capture abnormalities as the monitored-person lies in bed.

Pseudoseizures-involuntary, psychological, causes of “seizures”-are not rare and can complicate epilepsy diagnosis and treatment. See my past blogs on this subject at LanceFogan.com: blog #10 (March 23, 2011); Blog#49 (August 27, 2014); Blog #99 (October 26, 2018).

The diagnosis of epilepsy depends on the clinical history of searching for, and characterizing,  “spells” patients complain of along with the above testing which commonly are all normal. Ultimately, clinical judgment and the experience of your physician are crucial.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.