Blog #98: Highlights from the Epilepsy Symposium: University of Southern California. September 15, 2018

Ten percent of the American population will have at least one seizure in their lifetime and one in 26 Americans will develop epilepsy; epilepsy is diagnosed when more than one seizure occurs. Americans with epilepsy number 3.4 million, 65 million people world-wide have epilepsy. There are 48 newly diagnosed cases/100,000 population each year.

• The Communicable Disease Center (CDC) found the death rate for all Americans in 2017 was 844.0 deaths per 100,000 population or 0.84 percent.¹  This statistic is not that dissimilar to the 500 to 1000 deaths per 100,000 people with epilepsy that die each year. However, life-expectancy for people with epilepsy averages 19 years fewer than the general population. In 2014, SUDEP (sudden unexplained death in epilepsy) was listed as cause of death for only 2650 people. Death certificates don’t always list accurate causes of death, but SUDEP is thought to occur in one out of 75-150 Americans, or 30,000, of all ages with epilepsy annually (SUDEP is discussed in my blogs #13, #57 and #68), especially in those whose epilepsy is poorly controlled. Fifty percent of the epilepsy population have more than one seizure/year, i.e., their epilepsy is active and not in remission.
• One-third of the epilepsy population is NOT under the care of a neurologist, the physician-specialty that is more expert in caring for epilepsy patients.
• The greatest number of newly diagnosed patients with epilepsy currently is over 60 years of age, not the pediatric population (see LanceFogan.com blog #15).
• Pregnant women, and those who are considering getting pregnant, should take 400 micrograms of Folic Acid vitamin daily. Folic Acid can lower the incidence of nervous system and other malformations in the fetus. Verbal abilities in children of mothers on antiepileptic drugs (AEDs) who started daily Folic Acid at least four weeks before conception exceed verbal abilities the children of mothers with epilepsy not taking Folic Acid.²

GENETICS IN EPILEPSY:

• Genes that connect with actions of certain anticonvulsants (AED) are now being identified. If these genes are present in the patient a more effective AED can be chosen. Some of these effective medications are not even AEDs but medicines used for other diseases. To date, these genetic laboratories are rare. When two AEDs have been unsuccessful in controlling one’s epilepsy, genetic testing should be done. Genetic testing is expensive, but its use is growing and should benefit many uncontrolled patients. As of 2018, seventy percent of people with epilepsy have no identifiable cause. Genetic screening will probably result in many more identifiable causes.

SURGICAL EPILEPSY TREATMENT:

• Epilepsy is now considered a surgical disease. Epilepsy centers evaluate patients with sophisticated equipment. If an abnormal brain area can be located as the origin of seizures, 60-70 percent are cured of their epilepsy or markedly improved. As scary as brain surgery sounds side effects, as significant thinking, memory, motor or sensory problems, are uncommon. Nonetheless, surgical treatment is underutilized, probably because of fear and expense.

OTHER DEVICES AND TREATMENTS IN EPILEPSY:

• Vagus Nerve Stimulation: in use since 1997. Its effectiveness in decreasing seizures increases over time with its use independent of AEDs. Side effects include cough, hoarseness and shortness of breath because the vagus nerve stimulates these functions of the vocal cords and the respiratory functions. Usually an out-patient procedure.

·         Responsive Neurostimulator: a portion of the external skull surface bone is scooped out for a battery-powered computer (batteries need replacement every 3-5 years) to fit in this bone-bed, then covered with scalp tissue. Thin stimulators are placed into the area of the brain where the seizure originates via two small drill-holes through the skull. Whenever the apparatus detects the beginnings of a seizure the stimulator probes “fire.” This “short-circuits” and halts the seizure. Researchers believe cognition increases over time, probably because fewer seizures occur that interfere with thought. Over one-half of the patients decrease their seizure frequency by 60 percent.

Ketogenic Diet:

            Mostly reserved for intractable epilepsy. Not ideal for good surgical candidates. Effective across the age spectrum. In use since Mayo Clinic doctors in 1924 found this diet efficacious. It consists of 90% of calories from fat and only 10% from carbohydrates (sugars) and protein. The diet is safe and can be effective in children and adults. Ten percent of patients become seizure-free & 40 percent achieve more than 50 percent decrease in seizure frequency at one year. Forty percent remained on the diet at one year due to their successful control. Of 53 percent of the people who discontinued the diet, half was due to poor tolerance and half due to poor seizure control. Response to the diet may take a month to occur.

• Excellent response in most genetic and primary epilepsies (Juvenile Myoclonic, brain malformations and trauma, Dravet, West and Lennox-Gastaut syndromes, infantile spasms, tuberous sclerosis, and others). The ketogenic diet should not be used when certain other conditions exist, usually metabolic diseases.

1)   https://www.cdc.gov/nchs/fastats/deaths.htm 

2)     Husebye ESN, Gilhus NE, Riedel B, et.al. Verbal Abilities in Children of Mothers with Epilepsy. Neurology 2018: 91:e811-e821.

3)     A. Bergqvist in Epilepsy and the Ketogenic Diet; edited  by Stafstrom & Rho, 2004

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 #97: A REMINDER: SLEEP LOSS AND EPILEPSY

Epileptic seizures and sleep cycles is a complex realm of neuroscience that will not be addressed here. 

Epileptic seizures are often precipitated by a combination of various clinical factors, but, we find that sleep loss stands out as an independent seizure-trigger in neurology clinics. This variable can be controlled by our epilepsy patients. 

Below is a representative study. It supports obtaining adequate sleep of eight hours per night. In a prospective, observational cross-over study, 179 consecutive hospital admissions for epileptic seizures were included.¹ The sleep duration prior to the seizure, as well as alcohol, caffeine and drug use, were recorded.

Complete data for analysis were retrieved in 144 patients. The sleep-time during the 24 hours prior to the seizure was lower (7.3 hours) compared to follow-up (8.3 hours) longer seizure-free periods. Caffeine consumption and use of relevant non-antiepileptic drugs (AED) were not different.

I emphasize that sleep-rest is critical in helping control epilepsy. Be sure to get an adequate night’s sleep, preferably at least eight hours to support your anti-convulsant medications.

1)      Samsonsen C, Sand T, Bråthen G, et.al. The impact of sleep loss on the facilitation of seizures: A prospective case-crossover study. Epilepsy Research November 2016, Volume 127, Pages 260-266.

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 #96: Neurologists May Be Missing the Higher Risk of Suicide/Drug Overdose in Epilepsy Patients

            A troubling picture is emerging: the deadly side of epilepsy. Epilepsy patients have a higher risk of unnatural death compared with the non-epilepsy population. SUDEP (Sudden Unexplained Death in Epilepsy) is not common, but suicide and drug overdose and other unnatural causes are.

            In the general population the actual risk of unnatural death is 0.3 to 0.5 percent of total deaths. People with epilepsy are five times more likely to die because of accidental poisoning from medication and three times more likely to die from an intentional overdose of medication compared to people who don’t have epilepsy. Although the researchers were already aware that people with epilepsy are at a higher risk of death, “…we didn’t know much about the risks of different types of death.”¹

            This population-based cohort study included more than 50 000 people with epilepsy and 1 million matched individuals without epilepsy who had identified in two data sets drawn from the general populations of England and Wales. Researchers reported people with epilepsy had a 3-fold increased risk of any unnatural mortality and a 5-fold increased risk of unintentional medication poisoning. Psychotropic and opioid drugs were most commonly used in poisoning, but not antiepileptic drugs. 

            Since people with epilepsy are at increased risk of unnatural death, they and their families should be advised about unintentional injury prevention and monitored for suicidal ideation, thoughts, and behaviors. The suitability and toxicity of concomitant medication should be considered when prescribing for comorbid conditions.

            Elizabeth Donner, MD,² director of the Comprehensive Epilepsy Program at the Hospital for Sick Children in Toronto, said, “Having good seizure control doesn’t mean the person with epilepsy is otherwise trouble-free or experiencing a good quality of life.” She added that death certificates may not list epilepsy as a contributing cause in suicide or drug overdose cases.

                Psychological counseling should be recommended for our patients who are at risk. A low threshold must be entertained for preventive education and intervention. Clinicians should query patients and their families about depression and addictive/and or dangerous behaviors to attempt to avoid tragedy.              

                

1.      Gorton CH, PhD; Webb RT, PhD; Carr MJ. PhD; et al. Risk of Unnatural Mortality in People With Epilepsy. JAMA Neurol. Published online April 9, 2018.

2.      Neurology Today. Volume 18/issue 10: May 17, 2018

 

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.