Blog # 167: WHAT ABOUT NON-EPILEPTIC SEIZURES, THE PSYCHOGENIC, CONVERSION AND SOMATIC SYMPTOM DISORDERS?

 

Neurologists have long been aware of fake seizures. People would fall and shake and even lose control of urine. Called pseudoseizures or psychogenic nonepileptic seizures, they can be involuntary due to psychological disturbances. Frightening to witness as family and observers can attest. Yet the patient can still bite and lacerate lips and tongue and be incontinent of urine and bowel despite the EEG brain waves remaining normal.  Pseudoseizure can also be voluntary-malingered faked seizures of which the patient is very aware. These can serve some practical purpose in the person’s life e.g. avoiding stressful situations. These pseudoseizures occur in up to a third of patients evaluated in epilepsy clinics. One-third of patients who suffer from true epilepsy have additional pseudoseizures typically occurring during Their psychogenic nonepileptic seizures tend to occur when other people are present and during times of heightened emotional stress when secondary gain is available. Patients exhibiting feigned, or pseudoseizures, tend to have significant emotional problems. Schizophrenia, hysteria and hypochondriasis are common diagnoses.

 

Veterans with psychogenic nonepileptic seizures tend to have higher rates of anxiety, post-traumatic stress disorder and chronic pain, as compared with veterans with true epileptic seizures. Civilians with psychogenic nonepileptic seizures usually attribute their seizures to a past head injury, usually mild ones.

 

Selim Benbadis, MD reviewed this topic in Neurology 2019;92: 311-312.¹ Psychogenic nonepileptic seizures (PNES) are so very common in epilepsy centers in the U.S. that they account for 30-40 percent of referrals.²

 

Treatment results of pseudoseizures are not encouraging. Adherence to psychotherapy and cognitive behavioral therapy was poor. Minorities and victims of abuse tend not to adhere to these therapies, but a better outcome is seen if they do adhere over time.

 

Anticonvulsant medications are usually disappointing. Convincing psychiatrists/psychologists that their patients are suffering pseudoseizures and not true epilepsy by neurologists can be difficult. Combined psychological and organic neurological on-going cooperative care can lead to success.

 

 

1)    Benbadis SR. Psychogenic noonepileptic seizures, conversion, and somaic symptom disorders. Neurology 2019;92: 311-312.

2)    Benbadis SR. The Problem of psychogenic symptoms in the psychiatric community in denial? Epilepsy Behav 2005;6:9-14.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.

 

 

Blog # 156: Fatigue and Epilepsy

 

BJ Mac, Medical and Health Writer, and neurologist,  Amit M. Shelat, D.O., reviewed this subject in 2021 and their observations will help explain common symptoms with your epilepsy.¹

Added to your epilepsy, you feel exhausted, tired, or weak. Fatigue is a much more common symptom in people living with epilepsy than in the general population. Feelings of exhaustion and weakness can affect daily quality of life. Understanding this, there are some ways to help manage epilepsy-related fatigue.

What Does Fatigue with Epilepsy Feel Like?

The fatigue felt by people living with epilepsy is characterized by mental and physical experiences of persistent and extreme weakness, tiredness, and exhaustion.

One patient described being more emotional because of fatigue: “Does anyone feel so tired that they feel sad? This often happens to me. I am on a lot of medication, and my seizures are not under control, so I guess I have many reasons to be tired.”

Another patient reported that fatigue causes daytime sleepiness: One patient described the impact of seizure-related fatigue on her quality of life, writing, “For several years, I wake up after a seizure, and I am tired for up to seven days and in bed pretty much all day every day. That is the primary reason I lost my job.”

What Causes Fatigue in Epilepsy?

Several factors can cause a person with epilepsy to experience fatigue.

Depression

Depression is a known comorbidity (co-occurring condition) of epilepsy, with symptoms that vary from person to person. A study² using measures called the Fatigue Severity Scale and Fatigue Impact Scale revealed a high prevalence of depression-related fatigue among people living with epilepsy.

This fatigue may sometimes trigger epileptic seizures. A cycle can start to develop: Depression causes fatigue, which contributes to seizures. These seizures then cause more fatigue, which contributes to depression, and so on. Talk to your doctor about how to treat depression to break this cycle.

Many patients agree that dealing with depression is a common aspect of living with epilepsy: “I never thought I would ever have to deal with depression. With epilepsy, depression is a daily battle.”

Nocturnal Seizures

Another important risk factor of developing fatigue when living with epilepsy is poor sleep or sleep impairment. Nocturnal seizures (seizures that occur while a person is sleeping) can affect a person’s sleep quality.

A person is considered to have nocturnal seizures if more than 90 percent of their seizures occur when sleeping, which is the case in up to 45 percent of people living with epilepsy.

Both generalized and focal seizure types can occur as nocturnal seizures. Nocturnal seizures tend to occur during the first, lighter stages of sleep or upon waking.

One patient described nighttime seizures as a source of fatigue: “I recently had several nocturnal seizures, and I am now very exhausted. It will take three days for my body to get back to normal. It takes so much out of you.”

Another person described how nocturnal seizures interrupt her sleep rhythm and cause fatigue the next day: “Does anyone else ever have a seizure in their sleep and find it hard to fall back asleep? Then during the day, it can completely take your energy away.”

Postictal Fatigue

There are several stages to a seizure:

• Prodromal phase — When symptoms begin.
• Aural phase — When altered perception or sensations occur.
• Ictal phase — The actual seizure.
• Postictal phase — Recovery time after a seizure.
• Interictal phase — The time in between seizures.

Postictal phases have been found to have higher chronic fatigue scores and fatigue impact scores than ictal phases, with people reporting more fatigue and lower energy during the postictal phase. In other words, the recovery period after a seizure is a time of intense fatigue.

Many people reported needing to sleep due to intense fatigue during this phase. “I always go to sleep after a seizure,” wrote one patient. “It’s often compared to running a marathon. Your muscles are weak, everything hurts, and you are plain tired.”

Antiseizure Medications

Antiepileptic drugs commonly cause fatigue. A change of medication or time to adjust to your treatment plan may be needed to reduce this fatigue.

One patient said about medication-related fatigue: “When I took that medication, I experienced fatigue, anxiety, fear, anger, and mood swings.” Offering some great advice: “When side effects become unmanageable, it’s time to talk to your neurologist and ask for a drug that has fewer side effects.”

Managing Epilepsy-Related Fatigue

Managing fatigue with epilepsy can be challenging because its different causes can be interrelated. Tracking symptoms of fatigue and discussing causes and treatments with your health care team is the best place to start.

1)     BJ Mac, Medical and Health Writer, Medically reviewed by
Amit M. Shelat, D.O. 2021

2)     Fatigue in epilepsy: A systematic review and meta-analysis Oh-Young Kwona , Hyeong Sik Ahnb , Hyun Jung Kimb, * a Department of Neurology and Institute of Health Science, Gyeongsang National University School of Medicine, Jinju, Republic of Korea b Institute for Evidence-Based Medicine, Korea University College of Medicine, Seoul, Republic of Korea

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.

 

 

Blog #120: IS YOUR EPILEPSY CURRENTLY WORSENING? YOU’RE NOT ALONE.

 

The United Kingdom’s (UK) charity for young people with epilepsy, YOUNG EPILEPSY, evaluated the difficulties under lockdown for the 112,000 young people with epilepsy. I would extrapolate these difficulties to the general epilepsy population in the United States. You are not alone.

Key findings from the study of nearly 300 young people with epilepsy and their parents and carers probably parallel your experiences in the U.S. under COVID-19. These are:

• 30% of respondents reported an increase in seizures during lockdown - this may be related to a change in routine and lack of the usual support mechanisms.
• The majority of young people with epilepsy report deteriorations in sleep (72%) and mood (63%) in lockdown - young people with epilepsy are four times more likely than their peers to suffer from mental health issues. Their parents and carers themselves also reported increased stress and anxiety.
• Nearly a quarter (23%) also say that they've had clinical procedures or investigations cancelled during lockdown - in addition, 61% are more reluctant to go to hospital, with both issues likely to increase stress if it means a young person’s epilepsy going unmanaged.
• Nearly a quarter (23%) say that they have had trouble getting medication during lockdown - respondents mentioned pharmacies not stocking their regular medication, having to drive further to get the medication or switch between brands or types of medication, while others were frustrated that existing difficulties in obtaining medicines had been exacerbated.
• Most respondents (82%) say they worry that catching coronavirus would impact negatively on the frequency and severity of seizures - fever is a known trigger of seizures in some epilepsies, and one respondent said they had their first seizure in five years while suffering from Covid-19.

People with epilepsy already feel isolated; they face significant challenges even before the Covid-19 pandemic, including a higher likelihood of unemployment and mental health issues compared with the general population.

Comments covered by Medical Sciences News by Mark Devlin, CEO of the UK’s Young Epilepsy organization, report lockdown has exacerbated the many challenges which children and young people with epilepsy already face. Just 34% of working-age people with epilepsy in the UK are employed, and many have co-existing conditions such as autism which create further barriers to work, meaning that the recession offers bleak prospects for young people.

Young Epilepsy hopes that in the lifting of lockdown and recovery from the pandemic, the UK’s National Health Service and wider society will learn lessons in how to provide the support to help people with epilepsy lead the life they want to live. Wider access to remote health appointments is one specific measure, as is the urgent rescheduling of any treatment or appointment postponed due to Covid-19 pressures.”

One of Young Epilepsy’s representatives said: “Throughout this time I've had to postpone several appointments, and missed blood tests that I'm supposed to get every three months to make sure my main antiepileptic drug levels don't get too high and potentially put me in a coma. My meds, which were finally being ordered automatically by my pharmacy at the right time each month after a year of dose changes which confused everyone but me, are now messed up again with them giving me two months of some and not others.

“It's these small uncertainties and frustrations that add up and amount to the kind of stress that can cause a sudden peak in seizures. My seizure control has already dropped in the last month and the fear that it could continue to get worse with this ongoing stress is concerning —nobody wants to end up in emergency departments during a pandemic.”

In the UK in April Young Epilepsy launched its ground-breaking digital platform, The Channel. This platform, co-produced with young people, was launched because the charity recognized that young people with epilepsy have complex and often poorly met needs - even outside of lockdown - and that there was an appetite for reliable, specialist information provided remotely. Content on The Channel, which has already been accessed by thousands of users, includes advice and guidance on a range of topics from health and wellbeing to the personal and social lives of young people with epilepsy - including staying healthy in lockdown, and issues around Covid-19.

The Epilepsy Foundation of America provides similar digital support.

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 #117: TIPS: YOUR EPILEPSY IN OUR NEW COVID-19 WORLD

Now that we’re secluded in our homes do we live alone or with others?

Safety in dealing with the Corona Virus-19 starts with minimizing/avoiding close contact with other people as much as possible; wearing a face mask over both your nose and mouth to try to avoid spread of nasal/oral droplets and avoid contact with other people to minimize spreading the virus. Even if you are asymptomatic these actions should be done when around others and even more so if you believe you have mild cough, fever, aches and headaches. During this spring-time season, allergies usually cause running nose, itchy eyes but do not cause fevers. One tell-tale symptom of Covid-19 can be altered or loss of smell and taste; this is uncommon in other types of infections.

 

Fevers and viral infection syndromes commonly lower resistance to epileptic seizures. Spending more time in front of your computer screen exposed to flashing/flickering lights and geometric patterns such as checks or stripes in computer games can provoke seizures in up to 5% of those people who have epilepsy of the photosensitive epilepsy-type. Flickering overhead lights, sunlight through blinds and fast-moving figures on television screens may also trigger seizures in these people, too.

Tiredness and getting insufficient sleep are known triggers of seizures in people with epilepsy so be sure to get enough rest and take your anti-seizure medications as directed. Avoid drinking alcohol; alcohol can bring on seizures in epilepsy. Your doctor should be available for telephone consultations when desired if face-to-face meetings are not necessary during the Covid-19 pandemic.

As always, take precautions in your home. Be sure not to bathe/shower unless someone else is home with you whenever possible and keep the bathroom door open. I know of 17 patients who drowned in the bathtub (over a century ago Mark Twain’s adult daughter, Jean, had epilepsy and was found drowned in the bathtub) including 5 who fell face-down in the shower blocking the drain; they drowned in just 2 inches of water. Younger children bathing when mother can’t stay close should have the child sing. If singing stops mom should rush to check the child. When you cook, use only the rear burners to avoid falling on to hot coils, flames, and on to hot pots should you have a seizure at the stove.

You stay safe! The above suggestions can help you do that.

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.