Lance Fogan's Blog, page 5

Blog # 138: How Long Have You Been Seizure Free? When Should You Stop Antiseizure Meds?

 

An American Academy of Neurology (AAN) Guideline Subcommittee updated a 1996 practice parameter for discontinuing antiseizure medications (ASMs) in seizure-free patients. New practice recommendations for children and for adults have come forth. (1)

 

The reviewers addressed questions about patients who have been seizure-free at least 12 months and who are still on ASMs. Does stopping ASMs: (1) increase the risk of seizure recurrence, and are there factors that increase the risk for recurrence? increase the risk of status epilepticus (continuous seizures without ceasing)? (3) reduce medication-related side effects? (4) change the risk of death? (5) change any of the above risks based on the speed of withdrawal? and (6) change quality of life?

 

The important quality of life questions starts with if you cut back medications, we can’t really predict if restarting the same medication will work again—there’s a small chance it won’t. Then other medications may or may not work as well and they may have their own side-effects. Discuss your driving issues: should you cease driving for a while as you discontinue ASMs? How long? Will your state’s DMV make the decision and/or your doctor? Consider seizure occurrence on the job, participation in recreation activities, etc. A discussion regarding recurrence in epilepsy patients who have had successful epilepsy surgery and who are now seizure-free still on ASM medications would be problematic.

 

The main conclusion is that after two years seizure-free, medication withdrawal can be considered in adults whereas in kids its’ more likely that it could be considered after 18-24 months seizure-free. In considering ASM withdrawal in adults there is no real way to predict outcomes. In kids we can use the EEG, as there are pediatric electroclinical syndromes that could be detected on an EEG and if present makes it unlikely that ASM withdrawal will be successful. Note that half of all epilepsy patients will have a normal EEG at any one time since abnormal epileptiform activity is not continuous. Judgement is the critical component for making decisions.

 

The AAN subcommittee concluded the risk for seizure recurrence among adults who were seizure-free for two years and who tapered off vs those who did not taper but who stopped suddenly was not statistically different (15% vs 7%). In pediatric cases the difference in seizure recurrence between those who taper off after 18 months of being seizure free vs after 24 months was probably not significant. Only in kids are recommendations for the rate of ASM-withdrawal specific, not in adults: it’s recommended withdrawal in children at a rate no faster than 25% every 10-14 days.

 

The recommendations serve as talking points between clinicians and their patients and their families. The relationship between ASM withdrawal and the risk of mortality and status epilepticus is not as strong. But if your seizures are frequent and you stop your ASMs there’s a greater risk of your having status epilepticus.

 

1)     AAN Guideline Subcommittee. Antiseizure Medication Withdrawal in Seizure-Free Patients: Practice Advisory Update Summary. Neurology Dec 7, 2021; Vol 97 (23) 1072-1081.

 

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 a recent Publishers Weekly, New York Times Book Review, and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

BLOG #137: Epilepsy: Preparing for the Holidays

 

The holidays are here. As many of us prepare to travel—and welcome—friends and family to share, people who have epilepsy should take some extra precautions to stay healthy and safe.

Covid Protection:Vaccinate! Vaccinate! Vaccinate! Booster when 6 months since your last vaccination has passed. We all know the guidelines: distance and mask when exposed to other people.

Get enough sleep:Excitement, stress and jet lag can disturb sleep patterns. Extreme sleep deprivation is known to cause seizures. For example, soldiers returning home from Vietnam during the 1960s and ’70s were so excited that they would be up for 36 hours straight. This extreme lack of sleep caused a convulsion in people who do not have epilepsy; it could certainly precipitate seizures in people who have epilepsy.

Alcohol: Alcohol is often served at holiday meals. People with epilepsy can probably tolerate a beer or a small glass of wine or spirit. However, excessive use/abuse of alcohol is more likely to bring on a seizure than in a person without epilepsy.

Nutrition and hydration:In my experience, people who have epilepsy do not need to follow a special diet; just follow routine recommendations for good nutrition and water intake.

Bring an adequate supply of anti-seizure medication when you travel: Be sure to bring enough anti-seizure medication with you to last the duration of your trip plus a couple extra days to be safe. Keep the medications in their original bottle/container with the prescription (dosage) and your doctor’s name on the label. (This information may be required if you must cross state or international borders.)

Stress: No matter how much you enjoy the festive season, holidays can be stressful for anyone. Emotional stress can definitely bring on a seizure in people who have epilepsy. If possible, minimize the amount of time you spend in a stressful environment. Meditation and light exercise are good ways to reduce stress.

Carry identification when you go out:People who have epilepsy can have a seizure at any time. During a seizure, a person cannot tell bystanders that he or she has epilepsy. When a seizure occurs, it’s usually not necessary to call an ambulance; the person will stop jerking and shaking after a minute or two and just sleep it off. A MedicAlert bracelet or necklace would reassure observers that the person has a known chronic condition that may not be that serious. This information is also useful if emergency personnel are called. Always carry a card in your wallet that states your condition (type of epilepsy) and up-to-date medications you take to control it. Be sure to include a contact address and phone number of one or two relatives that emergency personnel or a Good Samaritan can contact in an emergency. If you are away from home visiting friends or relatives, be sure to provide similar contact information about your hosts.

Wear a helmet:After eating sumptuous meals, a lot of people like to get out and exercise to work off the calories they have just consumed. Everyone—and especially people with epilepsy—should wear protective headgear (a helmet) if you ride a skateboard, bicycle, horses and even ski. A helmet will protect your precious brain from injury if you fall and hit your head while participating in one of these activities.

I wish you a happy and healthy holiday.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA . His emotionally hard-hitting 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 a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

 

Blog # 136: SUICIDE AND SEIZURES

 

The rate of suicide is increased in people with seizures. The relationship between seizures and suicide is complex and controversial.1 Antiseizure medications have a black-box-warning for suicide indicating their serious relationship.2

 

Several large studies demonstrate that epilepsy increases the risk of completed suicide and suicide-related-behavior independent of these medications. Are suicidal ideations promoted by changes in neural brain-circuitry-networks that make people with epilepsy more vulnerable to mood disorders?3 These are questions that inspire neuroscience students to research and learn more.

 

Social stigma and isolation, driving restrictions, substance abuse and decreased employability likely play a major role in depression leading to suicide. People with uncontrollable psychogenic nonepileptic seizures in which they suffer involuntary convulsions (PNES) face similar psychosocial challenges as people with actual epilepsy (see my Blogs # 49 August 27, 2014 “Psychogenic ‘Fake’ Non-Epileptic Seizures; Blog # 99 October 26, 2018 “Revisiting False Epileptic Events” at LanceFogan.com) “Seizures” of PNES do not have an organic cause, however, these “seizures” are just as debilitating and real to the person as actual epileptic convulsions. They are not malingering. Because of the seizures having psychological causes they are notoriously difficult to control. Children seem not to be afflicted with PNES. Education and marriage are associated with decreased risk of suicide. 4

 

I encourage all persons with epilepsy, their families, and their associates to be aware of a heightened suicide risk and to monitor for a need for professional support.

 

 

Pompili M, Girardi P, Tatarelli R. Death from suicide versus mortality from epilepsy in the epilepsies; Epilepsy Behav 2006;9:641-648.Hesdorffer DC, Kanner AM. The FDA alert on suicidality and antiepieptic drugs: fire or false alarm? Epilepsia 2009;50:978-986.Kanner AM. Mood disorder and epilepsy: a neurobiologic perspective of their relationship. Dialogues Clin  Neurosc 2008;10:39.Kyung-Sook W, SangSoo S, Sangjin S, Young-Jeon S. Marital status integration and suicide: a meta-analysis and meta-regression. Soc Sci Med 2018;197:116-126.

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. It teaches epilepsy, now available in eBook, audiobook, and soft and hard cover editions.

 

 

Blog #135: DOES YOUR POOCH SEEM TO PREDICT YOUR NEXT SEIZURE?

 

This anecdotal study reviewed below should promote keeping a closer eye on your pet dog’s behavior prior to a seizure. Perhaps you have already noted your dog’s altered behavior before your seizures, but you weren’t sure the behavior was meaningful. Read on. Learn of the compelling evidence that the behavior is meaningful but you weren’t sure of its significance.

The online epilepsy magazine, Epilepsy TodaySeptember 30, 2021, reviewed a new study from Queen’s University Belfast published in the journal MDPI (Molecular Diversity Preservation International) in July 2021. The study concluded that dogs could detect some unidentified odor that seems to be specifically associated with your seizures.1

The research was led by Dr. Neil Powell. These anecdotal accounts from 19 epilepsy patients report their pet dogs give them warnings by trying to connect with their masters before their seizures occur. The researchers evaluated the dogs’ reactions to seizure-related and non-seizure-related odors. They employed a special tool called the Remote Odor Delivery Mechanism. The odors reflected three separate phases of a seizure: before, during and after. The researchers collected sweat pads from armpits from seizure patients and from non-seizure controls. The dogs reacted to the odors from seizure-patients other than their owners, too.

All 19 dogs showed a change in behavior related to seizures. They tried to connect with their owner because of some unidentified seizure-related odors compared with the non-seizure-related ones. Dr. Powell said our findings clearly showed that all dogs reacted to the seizure-associated odor through making eye contact by staring at their owner, touching their owner by nudging or pawing, crying or barking,”

This study was on dogs who had no prior training. The researchers concluded that if dogs can be trained to communicate that a seizure will soon occur this can improve the owner’s safety and quality of life. A program of targeted training for seizure prediction is being developed.

1)     Powell NA. Ruffell A. et.al.The Untrained Response of Pet Dogs to Human Epileptic Seizures. Animals 2021, 11(8), 2267; https://doi.org/10.3390/ani11082267 21 July 2021

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. It teaches epilepsy, now available in eBook, audiobook, and soft and hard cover editions.

 

Blog #134: ADVANCES IN EPILEPSY OVER THE PAST 20 YEARS

 Neurologists are diagnosing epilepsy sooner and providing better treatments, but many patients are still not seizure free and do not receive adequate medical care. The next 20 years hopefully will shrink this number. But much is still not understood about the condition, including the specific cause in too many patients.

There has been an evolution of different terms for the various forms of epilepsy but the seizures themselves are unchanged, i.e., how they spread in the brain and their electrical activity.

A once common cause of complex partial seizures, aka temporal lobe epilepsy and psychomotor epilepsy, was mesial temporal sclerosis (depicted as inner temporal lobe atrophy on brain imaging scans). Currently this specific brain atrophy is less commonly seen. Why this is so is a mystery. A leading epileptologist, Dr. Jacqueline French, speculates that a particular type of illness that caused it is no longer prevalent. Alternatively, could it be that more anti-inflammatory medications are currently used in children that usually develop it and these effectively minimize this seizure disorder? 1

Neurologists note that nearly one-half of all comatose patients in Intensive Care Units (ICU) were having electrographic seizures on the EEG but 90% had covert seizure manifestations that were not obvious. When I personally examined motionless comatose patients I have been surprised by occasionally noting a “jumping” of the eyeballs, called nystagmus, when I would focus my ophthalmoscope on structures in the rear of the eyeballs. These movements are compatible with unsuspected seizures. In recent decades skill using ophthalmoscopes at the bedside that could detect this finding has been lost by younger clinicians; they depend on brain scans, but scans are not capable of showing epileptic activity.

Newer deep-brain stimulation can effectively detect electrical onset of seizures and then “short-circuit” the abnormality thus halting seizures as they begin. Brain surgery to remove identified abnormal seizure foci has become common and is very effective in minimizing the frequency of seizures. Surgery can even cure epilepsy. Robots can place brain electrodes or even function to remove brain tissue under neurosurgeons’ control.

The past 2 decades have seen development of newer anti-seizure drugs but none, to date, are able to eliminate seizures completely. Still, half of all the 1% of people afflicted with epilepsy will have excellent seizure control when put on the best anti-convulsant for them. Genetic studies can help to diagnose epilepsy syndromes in increasing numbers. Specific gene patterns in individuals (their genomes) are now found to be associated with epilepsy that guides the best medication choice for that person’s condition.

Formerly, Sudden Unexplained Death in Epilepsy (SUDEP) was incorrectly believed to be rare, however, it is not rare; effective anti-convulsants that prevent or minimize a person’s seizure frequency has been very effective in lowering SUDEP.

The ability to track your seizures by implanting electrodes has been a very significant advance in epileptology. It is hoped that this will enable patients to predict when a seizure will occur and gain better control over their lives.

1)    Fallik D. Then and Now:20 Years Later. Neurology Today. September 2, 2021; p.14.

      Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is a family medical drama told from a mother’s point of view. It is his first novel. It teaches epilepsy. DINGS is now available in eBook, audiobook, and soft and hard cover editions.

 

Blog #133: Reflex Epilepsy

Have you experienced seizures associated with specific experiences? These are reflex epilepsies.

Reflex epilepsies are seizures that are initiated reflexively by a stimulus to which a person is exceptionally sensitive. These specific stimuli include: flashing lights; reading various phrases or word combinations; detecting particular tastes and odors; a sudden noise, touch or motion; and, rarely, laughter. Specific musical tunes can induce seizures, and seizures may even be specific to hearing a performance by a certain artist. Bathing epilepsy and hot water epilepsy are forms of reflex epilepsy that are more common in children who are sensitive to showering and bathing. Most reflex epilepsies have genetic etiologies with genetic mutations found in the SYN1 gene. In some cases, just pouring water can initiate a seizure in these susceptible people.1

For example, a 61-year-old woman reports a seizure can be triggered if her right leg accidentally hits an object. Her right leg would start to tingle, twitch, shake and then becomes paralyzed for up to half a minute. “It’s almost as if I’m startled.” This does not occur if she purposely touches her right foot to a leg of a chair. Her seizures date back to childhood but were only recently explained after a neurological evaluation at an epilepsy monitoring unit. She’s now on anticonvulsant medications and is more careful to avoid hitting her right foot.2 This is an example of a specific sensory stimulus that in susceptible people can bring on a seizure—a REFLEX SEIZURE.

Musicogenic epilepsy is demonstrated in another instance when one woman began having seizures when she heard highly emotional hymns during church services. She would blank out and drop her hymnal. Slow, emotional songs triggered seizure activity in her temporal lobe, while faster tunes did not. When she was exposed to melancholic music in the lab she exhibited fear, rapid heartbeat, crying, confusion, and lip smacking: classical features of complex partial seizures which usually emanate from the temporal lobe. EEG electrodes applied to her scalp as she listened demonstrated the epileptiform abnormality. This suggests a relationship with how our emotional brains can be affected by music. This woman drowns out any slow, emotional music that could bring on a musicogenic-seizure in restaurants, malls, stores, etc.  by walking around with an iPod playing up-tempo songs in her ears which seems to prevent her musicogenic seizures. 

In a third example, a man had seizures induced by laughing but this occurred only while watching funny programs on TV. He would start laughing, his arms would shake, and he developed clouded consciousness. He reported no seizures at any other time. 1

1.     Accogli A, Wiegand G, Scala M. Clinical and Genetic Features in Patients with Reflex Bathing Epilepsy. Neurology. 2021;97:e577-e586. Doi:10.1212.

2.     Symphony of Reflexes reported by Susan Fitzgerald in Brain & Life: December 2019/January 2020; page 36.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA . “DINGS” is a family medical drama told from a mother’s point of view. It is his first novel. It teaches epilepsy. DINGS is now available in eBook, audiobook, and soft and hard cover editions.