Blog #59: I Have Epilepsy. Whom Should I Tell? When?

            Whom should I tell? This question is on everyone’s mind that has epilepsy. One can be stressed filling out job and military applications, insurance and driving-license forms. Dating, too, and other relationships, can be complicated by these questions. Fibbing and not disclosing your epilepsy could lead to everyday torture when you are afraid that a seizure could expose your condition. Patients often discussed these critical matters with me in my neurology office and asked for my guidance.

            The Epilepsy Foundation’s website goes into these considerations as noted here: According to the Equal Employment Opportunity Commission (EEOC) and the Americans with Disabilities Act (ADA), when you apply for a job by law a prospective employer may not ask you if you have a medical condition, including epilepsy. However, the employer is allowed to ask about your qualifications to perform the job, such as whether you possess a driver’s license or if you are capable of operating heavy machinery, etc. If you disclose your epilepsy diagnosis, the potential employer may inquire whether you would need any special accommodations (within reason). Be aware that not all accommodations must be granted and an employer is allowed to ask for more information about your health when performance problems related to your medical condition appear. In this situation, the employer is required to keep this information confidential from co-workers and other managers even if they observe a seizure in the workplace.

            What about dating and revealing your epilepsy to potential life-partners, relatives and friends? How much do you reveal? When, especially if your epilepsy is not evident at the time? You probably have adapted to taking pills, driving restrictions, and swimming and bathing precautions, but these things may not be easy for others to accept. Abandonment by friends and lovers may occur. You probably are very experienced with dropped relationships. You handled them, or may still be trying to get over them.

            Should you reveal your epilepsy immediately, on a first date? I recommend that you consider waiting until your second meeting in order to gauge your new relationship. Beware that when you disclose this information your prospective partner’s character will be “revealed.” You may already be very experienced with dropped friendships. Be honest; secrets will undermine relationships. After all, 70 percent of epilepsy is well or completely controlled and inherited epilepsy is uncommon; it may even be you who is doing the rejecting as much as the other person. Consider that you may be surprised by their reactions upon learning of your condition: they may be unfazed by it. Yes, that happens. When you find someone accepting your condition—and I encourage you to believe that most likely you will―you may be on your way to a solid relationship. It can work out. They could even care and worry about you more than you do; they will be most supportive.

            I refer you to an excellent article by Gina Shaw titled, “The Dating Game” in Neurology Now; June/July 2015. All of my epilepsy blog followers should subscribe to Neurology Now; it is a free official publication of the American Academy of Neurology that deals with neurological conditions geared to the lay reader.

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 #58: Questions in the Treatment of a First Seizure

            Fear and uncertainty plague patients and those who are close to them after a first seizure. Will it happen again? What is to be done? It is here that the art of medicine connects with the science of medicine in dealing with this unknown.

            The first thing I did when I evaluated a patient was to determine whether the clinical history suggested prior unrecognized seizure phenomena. Clues would be “fainting” spells or “panic” spells or losing concentration and loss of mental contact with the environment or hallucinating bad smells and tastes in their past. These symptoms can accompany complex partial seizure or other forms of epilepsy. If the neurological examination and various screening laboratory tests, EEG and brain scans revealed no risk factors for further seizures, I explained that the possibility of another seizure cannot be precisely predicted. But, the risk of experiencing more seizures is greatest during the next two years (21%-45%).¹ The decision by the physician in collaboration with the patient to initiate an antiepileptic drug (AED) is influenced by many variables: occupation, driving, social considerations, endangering infants in the patient’s care, whether serious harm or injury was caused by this first seizure, potential side effects of the AED, etc. Additionally, AEDs are not always as effective as we desire. They fully control seizures in only 50% of people with epilepsy—there is no guarantee: it’s a matter of trial and error. If these above tests suggested abnormalities that increase epilepsy risk and that another seizure was likely (i.e., abnormal EEG and/or brain scan and prior incidents suspicious for seizure/blank outs), I would urge initiating an AED after a first seizure, especially the convulsive type, rather than “wait and see.”

            Once an AED is started, it is recommended to take it for two years. If no identifiable seizure occurs during that time―and the patient is anxious to stop the AED—I would order another EEG to screen for epileptiform abnormalities. If normal, then taper off the medicine over a few weeks. However, it is very common in people with epilepsy for EEGs to be normal―epileptiform abnormalities are not always present. So, the question becomes if the patient was seizure-free during those two years was it because the AED was effective or because another seizure would not have occurred anyway?

            Studies have shown that immediate treatment will reduce seizure risk during those two years but treatment will not necessarily improve the long-term prognosis for seizure remission.² If it’s decided to wait and see if a second seizure occurs before AEDs are prescribed, starting them after a recurrent seizure will not adversely affect long-term seizure control prognosis.

            With the above considerations in mind, I conclude that watchful-waiting or initiating an AED immediately after the first seizure are both reasonable choices.

1.      Krumholz A, Wiebe S, Gronseth GS, et al. Evidence-based guideline: Management of an unprovoked first seizure in adults. Neurology 2015; 84:1705-1712.

2.      First Seizure Trial Group. Randomized clinical trial on the efficacy of antiepileptic drugs in reducing the risk of relapse after a first unprovoked tonic-clonic seizure. Neurology 1993; 43: 478-483.

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 #57: Sleeping on Your Stomach Increases Risk of SUDEP

My website’s Blog # 13 of November 14, 2011 discussed Sudden Unexplained Death in Epilepsy (SUDEP). We still do not know how to prevent this phenomenon or why it occurs. SUDEP is reported in fewer than one in one thousand epilepsy patients and it tends to occur among patients whose tonic-clonic seizures are poorly controlled. SUDEP affects adults more than young children. The most beneficial medical advice to prevent SUDEP is to closely follow medical recommendations and treatment guidelines to control seizures.

SUDEP is diagnosed when an autopsy reveals no other known cause of death such as drug intoxication, heart attack, uncontrolled continuous seizures (status epilepticus) or other identifiable diseases/abnormalities. Common scenarios involve epilepsy patients who go to sleep and then are found dead in bed. Most of these cases are thought to occur after a seizure, although this cannot always be proven. It is believed that seizure activity affects the brain’s regulating centers for breathing and heartbeat which can result in pulmonary edema, a common finding at autopsy in these patients. Pulmonary edema is a congestion of the lungs that can be lethal by impairing breathing.

New information found a significant association between SUDEP and sleeping on one’s stomach, i.e., the prone position. ⁽¹⁾ The researchers conducted a literature review and documented 253 SUDEP cases. They found that 73% of the deaths occurred in individuals discovered dead and on their stomachs in bed. There was no evidence that a convulsion had occurred, i.e., no incontinence nor tongue/lip biting. Twenty-seven percent were found dead in other sleep positions. People younger than 40 were four times more likely to be found dead in bed on their stomachs than older individuals. It is not known why SUDEP is associated with this sleeping position nor why it is less likely to occur in people over 40 years of age.

I suggest patients sew a ball or similar object on the front of their bed clothes that would make sleeping on their stomachs very uncomfortable. This could be considered to further minimize this rare risk of death in epilepsy.

 

1.      Liebenthal JA, Wu S, et al. Association of prone position with sudden unexpected death in epilepsy. Neurology 2015;84:703-709.

 

 

 

 

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 as an eBook, an audiobook and a soft cover.

 

 

Blog #56: Is It PTSD or Is It Non-Convulsive Epilepsy?

            When one is exposed to danger or highly stressful events the body naturally defends itself with a “fight or flight” mechanism to avoid harm. Post-traumatic stress disorder (PTSD) occurs when the fright and stress occur when the danger is no longer present. Combat is not the only precipitating factor. Other physical and emotional traumas can cause this form of mental stress: car and other accidents, child abuse, rape, muggings, etc.

            PTSD symptoms include re-experiencing the stress-inducing situation in bad dreams, flashbacks and frightening thoughts. Angry outbursts, being easily startled, feeling tense and stressed without any obvious, immediate trigger, feeling guilty, depressed, worried, emotionally numb, avoiding places, events or objects that remind the person of the experience and not recalling the triggering dangerous event are all common symptoms of PTSD. But, there should not be a lapse in thinking; there should not be blanking out. These are not PTSD symptoms. These symptoms suggest non-convulsive epileptic seizures.

 

            Veterans returning home after various types of head trauma associated with combat and nearby explosions commonly return with symptoms suggesting stress. But, are these symptoms of PTSD or symptoms of epilepsy? Both are common after concussions and severe head traumas? Differentiating non-convulsive seizures from PTSD can be difficult, especially if doctors are not looking for them.

            Sudden brief loss of thinking and train of thought, sudden inappropriate stares and inattention, sudden emotional outbursts, sudden hallucinating metallic tastes and offensive smells―as burning rubber—are all symptoms of non-convulsive epileptic seizures; these can easily be misdiagnosed. This mis-diagnosis by primary-care physicians as symptoms of stress, especially in combat veterans, usually leads to psychiatry referrals. If the psychiatrists and other physicians aren’t looking for post-head trauma epilepsy the patient can be incorrectly labeled with PTSD and inappropriately started on medications that commonly makes epilepsy worse.

            Patients and their families should now be aware of how PTSD can be misdiagnosed because PTSD symptoms seemingly overlap to be confused with non-convulsive epileptic seizures.

 

 

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.

 

 

 

 

 

Blog #56: Is It PTSD or Is It Non-Convulsive Epilepsy?

      When one is exposed to danger or highly stressful events the body naturally defends itself with a “fight or flight” mechanism to avoid harm. Post-traumatic stress disorder (PTSD) occurs when the fright and stress occur when the danger is no longer present. Combat is not the only precipitating factor. Other physical and emotional traumas can cause this form of mental stress: car and other accidents, child abuse, rape, muggings, etc. 

     PTSD symptoms include re-experiencing the stress-inducing situation in bad dreams, flashbacks and frightening thoughts. Angry outbursts, being easily startled, feeling tense and stressed without any obvious, immediate trigger, feeling guilty, depressed, worried, emotionally numb, avoiding places, events or objects that remind the person of the experience and not recalling the triggering dangerous event are all common symptoms of PTSD. But, there should not be a lapse in thinking; there should not be blanking out. These are not PTSD symptoms. These symptoms suggest non-convulsive epileptic seizures.

     Veterans returning home after various types of head trauma associated with combat and nearby explosions commonly return with symptoms suggesting stress. But, are these symptoms of PTSD or symptoms of epilepsy? Both are common after concussions and severe head traumas? Differentiating non-convulsive seizures from PTSD can be difficult, especially if doctors are not looking for them.

     Sudden brief loss of thinking and train of thought, sudden inappropriate stares and inattention, sudden emotional outbursts, sudden hallucinating metallic tastes and offensive smells―as burning rubber—are all symptoms of non-convulsive epileptic seizures; these can easily be misdiagnosed. This mis-diagnosis by primary-care physicians as symptoms of stress, especially in combat veterans, usually leads to psychiatry referrals. If the psychiatrists and other physicians aren’t looking for post-head trauma epilepsy the patient can be incorrectly labeled with PTSD and inappropriately started on medications that commonly makes epilepsy worse.

     Patients and their families should now be aware of how PTSD can be misdiagnosed because PTSD symptoms seemingly overlap to be confused with non-convulsive epileptic seizures.

 

 

 

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.

 

 

 

 

 

Blog #55: Too Few Neurologists Know it! Brain Surgery Really Can Cure Some Uncontrolled Epilepsy

 

Fifty percent of all people with epilepsy are free of seizures so long as they and their doctors have found the best antiseizure drug regimen for them. The remaining patients are refractory: that is, they continue to have seizures even with medical treatment. Sadly, almost half of this group cannot lead fulfilling lives because their epilepsy interferes with ordinary daily activities. Furthermore, they are at risk for greater cognitive decline and death.

Fewer than 5% of epilepsy patients who have scars or other abnormalities identified on MRI brain scans as epilepsy-inducing and in whom two antiseizure drugs fail to control their seizures ever gain total seizure control. Epilepsy surgery is an important treatment option for those with poorly controlled epilepsy who are “fortunate” to have A) an identifiable brain area causing their seizures, and B) this abnormality is in a so-called “silent” or, as neurologists say, “non-exquisite” area of the brain. I say these people are “fortunate” because these areas—the very front of the frontal lobe and of the temporal lobe―can be surgically removed without causing any significant deficits showing up in thinking, intelligence, or in speech, memory, movement, or sensation.

 Surgery can be their answer for marked improvement in quality of life and even for total control of their epilepsy. Epilepsy surgery is superior to medical management in temporal lobe epilepsy. ¹ The earlier the surgery following diagnosis, the greater its benefit. Successful epilepsy surgery is now routine; delaying it can lessen the chance for successful seizure control. ² 

 However, a Canadian study found a gap in neurologists’ awareness of the newest treatment data and indications for epilepsy-surgery referral. ³ Roberts et. al. found that only 43% of those neurologists who participated in a questionnaire survey correctly responded that any of their patients who had ongoing seizures should be referred and the earlier, the better chance for a successful outcome. Only 51% of the respondents correctly identified that “drug-resistant” patients are those who fail two antiseizure drugs. These patients should be referred for surgical evaluation once they are recognized to be drug-resistant.

 To date too few patients are currently being referred to epilepsy-surgical centers by their treating physicians—usually neurologists―for potentially curative epilepsy surgery and its life-changing benefits. It is recommended that patients introduce the possibility of surgical treatment even if their neurologist has not suggested it. Epilepsy-surgery centers are very common throughout the United States and Canada and the surgery definitely can improve quality of life.

 

1.      Engel J Jr, McDemott MP, et al. Early surgical therapy for drug-resistant temporal lobe epilepsy: a randomized trial. JAMA 2012; 307: 922-930.

2.       Berg AT, Mathern GW, et al. Frequency, prognosis and surgical treatment of structural abnormalities seen with magnetic resonance imaging in childhood epilepsy. Brain 2009; 132: 2785–2797.

3.      Roberts J I, Hrazdil C, et al. Neurologists’ knowledge of and attitudes toward epilepsy surgery. Neurology 2015; 84: 159-165.

 

 

 

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.

 

Blog #54: What Happens to Children with Epilepsy Later in Life?

 

            The complexities of living with epilepsy and questioning what the future holds are explored in the December 4, 2014 issue of Neurology Today. Jamie Talan, a journalist at the publication, reports a study presented by Dr. Anne T. Berg of Northwestern University at the American Epilepsy Society annual meeting in December, 2014. This same question—what does the future hold in epilepsy?―is juggled by the newly diagnosed third-grader Conner Golden and his family in my epilepsy novel, DINGS (ISBN 9781626463042).

            The experience of neurologists is that children who rapidly become free of seizures once an anti-convulsive medication regimen is begun usually remain seizure-free while they are on the medications. However, predictions of continued seizure cessation are less reliable once medications are stopped.

            The study reported by Dr. Berg included six hundred thirteen children aged from under one to fifteen years who had any form of epilepsy. It was carried out by researchers at Yale and Northwestern University beginning in 1993. Among the six hundred thirteen, five hundred sixteen of these children were followed at least 10 years; on average they were monitored for approximately seventeen years. A large percentage did well over the long term. About one-third of the six hundred thirteen was free of seizures within 2 years of the diagnosis and they were eventually able to stop their medications. Just one-quarter of that group which stopped medications were seizure-free for 5 years when the study ended. Twenty-five percent of the participants had seizure control, too, but only when they continued anti-convulsants. A further sixteen percent of the group continued to have seizures despite anti-convulsants but this group tended to have other neurological conditions complicating their epilepsy.

            Among the participants who were followed at least 10 years and who had been seizure-free for at least a one year period, fifty-two percent experienced a relapse. The researchers concluded that short-term remission of seizures did not guarantee long-term remission. Many reasons accounted for relapsing-remitting seizure control, including stopping anti-convulsant medications.

            Dr. Jacqueline A. French, a leader in epilepsy research, is quoted in the above Neurology Today article: “Neurologists have believed that they could stop medication if a patient was seizure-free for two years and that they would be fine for the rest of their lives […] but this is not the case. Two years may be too short [a time period] to determine whether a child will have problems with epilepsy again. We still don’t have a way to know which children will relapse.” Dr. Patrick Kwan, chair of neurology at the University of Melbourne and head of epilepsy at the Royal Melbourne Hospital in Australia commented on childhood epilepsy in the publication: “The data suggests that relapsing-remitting pattern of epilepsy control is not uncommon in children. This should be conveyed to patients when counseling them on prognosis. We need more studies […].”

            In conclusion, remission of seizures during the first two years of treatment is a favorable predictor of epilepsy-control but long-term future seizure-free life without anti-convulsants cannot be accurately foretold.

 

 

 

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.