Blog # 169: Balancing Reality with Hope in Epilepsy Treatment

 

 

 

Experience in our neurology clinics is that half of the epilepsy population in the United States, i.e. more than three million Americans (similar percent of the global population afflicted with epilepsy) can control their epilepsy. When the epilepsy is controlled with just the initial trial of anticonvulsant drugs (ACD) the long term prognosis for that person’s epilepsy is very good. We physicians start treatment with a commonly used ACD that from experience has shown effectiveness at the commonly used dosage. Side-effects such as drowsiness and laboratory tests of liver function, blood counts, etc. hopefully won’t be significant and the patient will adapt to the treatment quickly.

 

Edward Faught, MD, wrote on the reality and the hope in treatment.¹ As our patients are no doubt familiar, the course of epilepsy is variable. Experience shows that not achieving good control averages one-third of the epilepsy population, despite multiple different ACD treatments at various dosages. Identifying the presence or absence of brain lesions can still lead us astray as some patients do well despite significant abnormalities on scans. Younger age at onset, abnormal EEGs and very frequent seizures can adversely affect the prognosis.

 

According to the International League Against Epilepsy, drug resistant epilepsy is suggested when 2 ACDs appropriate for their type of epilepsy, as judged by your experienced neurologist, at tolerated dosages fail, then a third drug probably will also fail to control all seizures, too (10%).² However, other studies suggest hope. Schiller and Najjar noted that even after 2 to 5 ACDs had failed another drug could possibly produce seizure control. That was found in 16% of those patients deemed therapeutic failures.³

 

Keep in mind that a highly successful treatment that can cure epilepsy is brain surgery. In highly selected patients studied to rule out adverse side effects that would result from surgery, these procedures are safe. Post surgery life can be normal. Refer to my previous surgery-related blogs #155 (Successful surgery with robot assistant:  https://lancefogan.blogspot.com/2017/12/blog-89-surgical-removal-of-seizure.html), # 145 (Epilepsy patient passes driving test after brain surgery for poorly controlled epilepsy https://lancefogan.blogspot.com/2022/08/blog-145-epilepsy-patient-passes.html), #121 (…Epilepsy surgery is safe.  https://lancefogan.blogspot.com/2020/08/blog-121-if-your-seizures-arent.html).

 

In conclusion we should keep in mind that there is always hope in epilepsy therapy.          

 

1.     Faught E. Balancing reality with hope in epilepsy therapy. Neurology 2018;91: p989-990.

2.     Kwan P, Arzimanoglou A, Berg AT, et.al. Definition of Drug-Resistant Epilepsy Epilepsia 2010; 51: 1069-1077.

3.     Schiller Y, Najjar Y. Quantifying the response to antiepileptic drugs: effect of past treatment history. Neurology 2008; 70: 54-65.

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 #168: Suicidality ˗˗˗ Epilepsy

 

 

 

H. M. Clary and F. Gilliam addressed this topic in a Neurology publication.¹ People with epilepsy are prone to depression and anxiety. This is not news for our friends afflicted with seizures. People with epilepsy have a 22% higher rate of epilepsy than the general population.²

The risk of suicidality is highest shortly after the onset of epilepsy. The International League Against Epilepsy practice recommendation calls for neurologists to identify and manage depression and anxiety in their patients at every clinic visit.

 

Mood and anxiety diagnoses and suicidality among 347 adults with newly diagnosed focal epilepsy diagnoses were evaluated from the multicenter Human Epilepsy Project. An analysis revealed a high prevalence of psychiatric diagnoses that may go undetected: bipolar disorder, panic disorder, and agoraphobia stood out. There were strong associations of these diagnoses with suicidality, no different from those with established epilepsy.³  

 

What is Suicidality? The American Psychological Association defines suicidality as “the risk of suicide, usually indicated by suicidal ideation or intent, especially as evident in the presence of a well-elaborated suicidal plan.” It also to includes suicidal thoughts, plans, gestures, or attempts.

 

Bipolar disorder was more common than major depressive disorder. Sixteen percent had this diagnosis. Panic disorder was nearly as common as generalized anxiety, present in 11.5% of all participants. Nearly 39% had a mood or anxiety disorder and more than one-third of these had suicidality.

 

This overall assessment has implications for the clinical care of people with epilepsy as newly diagnosed focal epilepsy and established epilepsy may have suicide risk associated with psychiatric diagnoses not routinely screened for in epilepsy clinics. This knowledge elevates the need to better detect bipolar disorder, panic disorder and agoraphobia in our clinics.

 

Do not hesitate to consult with your physicians and caregivers if you, the patient, or the patient within your circle exhibits suicidal thoughts/actions. Do not fear that if you query the patient of possible suicidality thinking your mentioning the topic could be harmful. No, it’s almost always welcomed and helpful. As always, I recommend significant others of the patient accompany the patient to the clinic appointment. Much useful information often comes to light.

1.     Clary H.M., Gilliam F. Suicidality in Epilepsy. Neurology. 2023: Vol 100; No. 11, p 499-500.

2.     Tian N, Cui W, Zack M et.al. Suicide among people with epilepsy: a population-based analysis of data from the U.S. National Violent Death Reporting System, 17 states 2003-2011. Epilepsy Behav. 2016, 61:210-217.

3.     Kanner A., Saporta A., Kim D, et.al. Mood and Anxiety Disorders and Suicidality in Patients with Newly Diagnosed Focal Epilepsy. Neurology. 2023: vol 100; No. 11 p 508-509.

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 # 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 #166: POST-TRAUMATIC EPILEPSY IS ASSOCIATED WITH HIGHER RISK FOR DEMENTIA

 

 

 

 

As I have written in earlier monthly blogs, most people are surprised to learn that the commonest onset of epilepsy is in the older age-group and not in the pediatric population Why? We are living longer.

 

The epilepsy population is one percent of all people. In only half of these people can a cause for their epilepsy be identified. In the other half no cause can be found, in other words, these people have idiopathic epilepsy. In those for whom a cause can be identified, they have what is called symptomatic epilepsy. Usually, the cause is a structural abnormality in the brain associated with scars from trauma, scars from strokes, brain tumors, brain infections, abnormal blood vessels etc.

 

This blog highlights a summary edited by Susan Kreimer in the Neurology Today April 4, 2024, issue. It addresses the higher incidence of dementia in those with post-traumatic epilepsy¹. Post-traumatic epilepsy (PTE) is associated over a 25-year follow-up of developing dementia compared with epilepsy without a history of head trauma. A combination of epilepsy and head injury places the person at an increased risk of developing dementia.

 

Although some patients experiencing significant head injury are placed on anticonvulsant medications even before a seizure occurs, usually for short periods, as seizure prophylaxis, this has not been found to alter the risk of eventually developing PTE. Even mild traumatic brain injury can result in PTE up to a year after the head injury.

 

Researchers collected 12,558 individuals aged 45-64. The average age at baseline was 54 years. Nearly 58% were female and 28% were Black. Of this group 14.4 reported past head injury, 5.1% had seizure/epilepsy and 1.2 % had PTE. After follow-up spanning a median of 25 years, 19.9 of the participants developed dementia. Dementia risk factors may vary among population subgroups. The researchers adjusted for vascular and genetic risk factors.

 

Approximately 5-8% of the American population over 65 has dementia. Neurologists are encouraged to have a lower threshold to suspect cognitive impairment and dementia in their patients with PTE. Screen the patients themselves rather than rely on reports of caregivers to identify such patients for greater diagnostic accuracy. Have them undergo neuropsychological testing to confirm dementia if it appears.

 

We conclude that being aware of this group of PTE patients and of assessing them periodically for their higher risk of developing dementia can lead to better health outcomes.

 

 

1)     Schneider KCA, Law CA, Gottesman RF et. al.  Post-traumatic Epilepsy and dementia risk. JAMA Neurol 2024; Epub 2024 Feb 26

 

 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 # 165: COMMUNICATIONS WITH YOUR EPILEPSY DOCTOR

     

     You understand that your decisions for your epilepsy care are critical to the quality of your life. A study was published examining in-office patient-neurologist conversations that focus on identifying your type of epilepsy, sharing decisions about your care and continuing plans for your condition.

     A study of transcripts and audio recordings of conversations between patients and neurologists were analyzed focusing on epilepsy diagnosis, treatments, and prognostic considerations. The strategies for eliciting this information were assessed for strategies of information elicitation, word-level information, identification of topics discussed, quantification of questions probed, and types of questions asked.1

     Neurologist-patient interactions were analyzed in the United States, in Spain and in Germany. Neurologists tended to utilize event-based language. They referred to seizures in patient-friendly vocabulary. In the United States the term “epilepsy” tended to be avoided. This is cultura-based like Americans avoiding saying someone died. Rather, we say they “passed away.”

    In all three countries it was the neurologist who were unilaterally responsible for the treatment decision and choice of medication. A team effort is sometimes appropriate in medication decisions. When new medicines were described neurologists most often discussed potential side effects but did not review potential benefits. “Seizure control” rarely was defined. Patients were not asked what seizure control meant to them. Did I mean absolutely seizure-free or a very infrequent seizure may be acceptable to be “free” of seizures because “My last seizure was 8 months ago, or a year ago”. I would not consider this to be seizure-free.

     This paper identified opportunities related to vocabulary, decision making, and treatment goal setting. All these facets can improve communication about epilepsy.

     I recommend that you as the patient bring along your significant other to attend your meetings with your neurologist. That person should participate in all the discussions and ask pertinent questions along with you. Certainly, “two or more heads are better than one” in your doctor’s office. When I was in practice, I would often create the scenario after complex discussions I had with the patient who had come alone, “So, when you get home and your wife/ husband asks, “What did the doctor say?” I often heard the patient respond, “Nothing” or “nothing new” or something completely off the mark.

     I urge you all to bring someone along to be in the office/treatment room, if appropriate, whenever you visit a physician/clinic. You’re bound to get more for “your buck.” 

1) Stern JM, Cendes F, Gilliam F, et.al. Neurologist-Patient communication about epilepsy in the Unites States, Spain, and Germany. Neurology Clinical Practice. 2018; vol 8 (2), pg 93-101. 

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 #164: MEMORY: SUBJECTIVE COMPLAINTS VS ACTUAL OBJECTIVE DEFICITS IN EPILEPSY

 

 

Who amongst us doesn’t find fault with our own memory? But are memory concerns and complaints due to actual brain pathology or are they within the normal age-spectrum? Over half of patients with epilepsy complain of impaired memory. Are they actual memory deficits, though? We know that anticonvulsant medications commonly have deleterious effects on memory as can depression, other medications and illnesses.

Exploring memory researchers recruited patients with Temporal Lobe Epilepsy (TLE).¹ TLE diagnosis was based on abnormal EEG and clinically typical seizures. Our temporal lobes are where memory is generated and preserved. Damage there does affect memory whereas damage to other parts of the brain does not have as serious effects on memory. Generalized epilepsy, which does not focus on temporal lobes, seems to have less deleterious effects on memory as compared with TLE.

Researchers recruited 47 patients with TLE. Age and sex-matched 35 healthy controls were similarly studied. Self-evaluation memory questionnaires were used to assess the magnitude of memory complaints. All were then studied with neuropsychological examinations. A surprise recall testing 3 weeks later occurred. No significant differences on standard testing were found between the performance of patients and controls.

The two groups were then brought back three weeks later. The surprise recall tests 3 weeks later revealed significant differences between the two groups. They were assessed if they recalled simple events that occurred during that original testing 3 weeks before. For example, was there a memory of a water glass being offered? Did the examiner leave the room and change what they wore? Did the subject recall the phone ringing twice during the visit, or recall being asked to retrieve a questionnaire from a shelf, etc.? In the absence of spontaneous recall without cues, cues were then provided by the researchers followed by recognition questions such as “did the phone ring once or twice? Were you offered water etc.? Scores were generated.

The standard neuropsychological battery we have relied on to test cognition and memory has some blind spots; an adequate assessment of autobiographical memory and our “long term” memory assessments occur 10 to 30 minutes after the information is encoded. Traditionally these tests haven’t been performed. It is these blind spots that have been addressed in this study. People with subjective memory complaints that were corroborated by family members had normal performance on standard neuropsychological testing. But scores 3 weeks later were significantly lower in the epilepsy group.

This information is another reminder that we need to listen closely to our patients’ complaints, and that our gold standards need to be updated as our understanding of memory evolves.

1)     Lemesle B, Barbeau EJ, Milongo Rigal E, et al. Hidden objective memory deficits behind subjective memory complaints in patients with temporal lobe epilepsy. Neurology. 2022;98(8): E818-E828

 

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 #163 February: ALZHEIMER'S DISEASE AND EPILEPSY

Articles are ubiquitous in the media on Alzheimer's Disease (AD). It is estimated that Alzheimer's currently affects 5 million Americans. In 2050 ten percent of us will be affected according to Harvard.edu.

Increasing knowledge based on multiple studies (meta-analysis) shows a link between AD and epilepsy. People with epilepsy had a 1.8-fold increased risk of AD. Patients with AD had a 3.1- fold higher risk of epilepsy, both generalized and focal seizures with impaired awareness (complex partial epileptic seizures). Temporal lobe epilepsy and AD share some pathologic features such as both show hippocampal sclerosis in the temporal lobe tip. The study populations to confirm this information is interesting but it is inconclusive due to the relatively small populations in the studies.1 

Increased chemical amyloid compounds are found in the brains of patients with AD. Elderly people who may be intellectually normal all have some amyloid in their brains, too, but this chemical compound is more prolific in AD dementia. It appears that amyloid pathology increases the propensity to generalized seizures. There is an association between AD and focal seizures, too, with hippocampal sclerosis (scarring) in the temporal lobes.

1. Fang Y, Xiaoli S, Jial W, et. al. Alzheimer Disease and Epilepsy. Neurology;2023 101:e 399-e409. Doi:10.1212 

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