Did You Know?
Influenza Vaccination Recommended for People with Epilepsy
(posted 10/20/10)
In contrast to the 2009-2010 flu season, the new influenza vaccination recommendations are straightforward. The current recommendation is that everyone 6 months and older should get a flu vaccine each year starting with the 2010-2011 influenza season (which has already started). Furthermore, the 2010-2011 seasonal flu vaccine protects against H1N1 and the two other most common influenza viruses expected this season. It particularly important for people who are at high risk for flu-related complications to get vaccinated. This includes people with epilepsy and those who live with them, in addition to a number of other groups (e.g. pregnant women, young children, older adults, people with intellectual or developmental disabilities, people with asthma or chronic lung disease, people with heart disease, etc.).

To learn more about the vaccine and how to get it, visit the CDC’s Influenza page. For other tips on how to stay healthy, please come to Epilepsy Foundation of Michigan’s Wellness & Epilepsy Regional Conference.
Vagus Nerve Stimulation May Have Particular Value for People with Epilepsy and Developmental Disability
(posted 12/8/08)
Several studies and anecdotal reports suggest that Vagus Nerve Stimulation (VNS) may be particularly helpful for patients with epilepsy and developmental disability. One study (Huf et al., 2005) showed that among low-IQ patients with epilepsy living in long-term care facilities, 28% experienced at least a 50% reduction in seizures. Perhaps more importantly, though, overall quality of life improved for the majority of subjects, and significant long-term improvements in attention span, word usage, and clarity of speech were noted. Furthermore, subjects went from an average of 3.3. antiepileptic drugs to 2.3 over the two years of the study. A study of children with Lennox Gastaut-like syndromes (Majoie et al., 2005) showed similar reductions in seizures and moderate improvement in function, behavior, mood, and mental age. Other studies have shown improved word recognition, mood, alertness, and decision times, although there have also been some contradictory findings.

The reasons for cognitive improvements in people with developmental disabilities who have the VNS are unclear. It’s possible, however, that the VNS reduces interictal epileptiform discharges, the abnormal spikes of electrical activity in the brain that don’t become seizures but can disrupt cognitive functions. It’s also possible that the additional seizure control provided by the VNS allows some patients to reduce the dosage or number of antiepileptic medications they’re on, thereby reducing cognitive side effects. Hopefully, additional studies will shed more light on which types of patients are most likely to benefit from VNS, what specific cognitive and behavioral improvements can be attributed to the VNS, and what accounts for these improvements.

Status Epilepticus: Different Types, Different Risks
(posted 7/24/08)
Status epilepticus (SE) is a medical emergency and is defined as seizure activity lasting for more than 30 minutes. This activity may be either continuous or a series of seizures without recovery between them. Many patients with epilepsy are understandably concerned about the potential consequences of experiencing an episode of SE.
Generalized convulsive status epilepticus (GCSE) is the most common and generally the most dangerous form of SE. Most studies on SE have focused on this type. Cognitive impairment, increased seizure frequency, and death are among the potential consequences of SE. Overall, less than 2% of people experiencing an episode of GCSE die as a direct result of the SE; however, death resulting from the underlying cause or complications of the SE may occur in up to 30% of adult cases and up to 10% of childhood cases. It’s important to realize, however, that many cases of status epilepticus occur in people without epilepsy. Nearly half of adults and two thirds of children who experience SE have no history of seizures. If these individuals weren’t included, the mortality rate would likely be much lower.
There is much debate about to extent to which SE itself (i.e. the electrochemical changes in brain tissue caused by prolonged abnormal firing of neurons) causes cognitive deterioration. Animal studies have clearly shown that prolonged and intense SE damages the brain; however, these animal models may not accurately reflect typical SE in humans. Likewise, studies in humans have shown radiologic and pathologic evidence of tissue damage, but such damage has not been linked to actual changes in cognitive function.
Nonetheless, a number of factors have been identified that are associated with an unfavorable prognosis after SE, including the following:
  • long duration of the SE (SE lasting over an hour has 10 times the mortality of shorter episodes of SE)
  • older age
  • presence of more than one medical complication (e.g. cardiac arrhythmias, kidney/liver failure, hypotension, respiratory failure, hypoxia, etc.)
  • refractory SE (SE that doesn’t respond to one or two anticonvulsants)
  • presence of certain underlying conditions (stroke, anoxia, CNS infection, severe metabolic imbalance, brain tumor, etc.)
A reasonable conclusion, until additional research demonstrates otherwise, is that an episode of GCSE in a person with epilepsy that lasts under an hour, is not caused by an acute catastrophic condition (e.g. trauma, stroke, CNS infection, etc.), and is not accompanied by serious medical complications is unlikely to cause death or clinically-significant, long-term cognitive impairment.
In addition to understanding the risks associated with status epilepticus, it’s important to be aware of the different types of status epilepticus. The following is a summary of the most common types other than GCSE:
Absence SE – very frequent or continuous absence seizure activity that may last for days or weeks; person may be able to function but seems confused and clumsy; very treatable, but may recur; probably most benign form of SE in terms of long-term neurological consequences

Complex Partial SE – continuous or consecutive complex partial seizures resulting in confused or unresponsive state that can last weeks or even months; difficult to distinguish from absence SE; often confused for dementia or psychiatric illness; typically responds well to treatment but often recurs; some evidence suggests long-term cognitive impairment may result, but more studies needed to confirm this
Simple Partial SE – the most common form is epilepsia partialis continua or partial motor SE; typically involves continuous jerking of the hand or face on one side; may last for hours to months; often unresponsive to medication, but usually stops on its own; outcomes depend on the cause; sensory, psychic, and autonomic simple partial SE also occurs, but only rarely
Myoclonic SE– consists of repetitive myoclonic seizures that may last for days; may occur in connection with anoxia, juvenile myoclonic epilepsy (JME), progressive myoclonic epilepsies, encephalopathies, and a number of other causes; outcomes vary from excellent (e.g. JME) to poor (e.g. anoxia)
Future Epilepsy Treatments May Focus on the Condition, Not the Symptoms
(posted 5/15/08)
The term “antiepileptic drug” is somewhat of a misnomer. The medications currently used by people with epilepsy are designed not to prevent or alter the course of epilepsy, but instead to prevent seizures, the primary symptom of epilepsy. A newer field of epilepsy research aims to better understand the neurochemical and structural changes that lead to epilepsy while developing ways to prevent or lessen the impact of these changes.

In epilepsy there is typically an initial injury to the brain or a genetic cue that starts a cascade of short-term, intermediate, and long-term neurological changes eventually resulting in a tendency to have spontaneous seizures (i.e. epilepsy). The progression from this initial cause to the first epileptic seizure and beyond is called epileptogenesis. Some researchers are focusing on the nature of this process and how it varies by cause (e.g. stroke, trauma, genetic causes, etc.) and at different points in time (e.g. immediately after an injury, early in childhood, after epilepsy has been diagnosed, etc.). Others are already testing medications that have the potential to halt or slow epileptogenesis through numerous mechanisms of action.

Through animal and human studies on epileptogenesis and potential antiepileptogenic agents, we may eventually be able to prevent epilepsy in people who have experienced a stroke or traumatic brain injury or in children with a genetic predisposition to seizures. We may also be able to stop the progression of epilepsy in newly diagnosed patients, thus preventing it from becoming intractable.
Recent Study Shows Similarities Between Epileptic Seizures and Earthquakes
(posted 4/17/08)
Epilepsy researchers and seismologists are both interested in finding ways to predict seemingly unpredictable events: seizures and earthquakes, respectively. A recent study by neurologist Ivan Osorio and his colleagues at the University of Kansas showed that these two types of scientists may be able to learn from each other. The study suggests that epileptic seizures and earthquakes follow similar patterns and share a number of other similarities that eventually may lead to methods for predicting them.
In both cases, small, barely-detectable events typically precede major events. Minor tremors precede earthquakes and brief spikes in neuronal activity precede seizures. Additionally, both seizures and earthquakes can be thought of as “relaxation events,” which are characterized by the sudden release of accumulated energy. Also, for both seizures and earthquakes, the longer it’s been since the last event, the longer its likely to be until another event. The scientists even found that epileptic seizures obey two seismological laws that relate the size of the initial event to the number and frequency of subsequent events.
Although the scientists have not been able to use their method to predict seizures, and practical applications of their findings may be years away, their study is an important addition to the growing body of research on the physics and mathematics of epilepsy. The ability to predict seizures and earthquakes would provide much needed warning to those affected, which could minimize subsequent harm. Unlike earthquakes, however, predicting a seizure might also allow for an intervention that could prevent the seizure from occurring, and the impact of that would be tremendous.
Epilepsy Phenome/Genome Project receives NIH Grant to Study Genetics of Epilepsy
(posted 12/20/07)
For a long time, genetic factors have been recognized as a potential cause of epilepsy. In some rare types of epilepsy, a single genetic mutation has been identified as the cause. In cases of symptomatic epilepsy, a specific non-genetic cause (e.g. stroke, brain tumor, traumatic brain injury) is the culprit. For many types of epilepsy, however, the specific cause remains unclear, although genetics is thought to play a role.
The Epilepsy Phenome/Genome Project (EPGP), through a grant from the National Institute of Neurological Disorders and Stroke, will examine the complex genetic factors behind these common types of epilepsy. The study will involve over 50 researchers and clinicians from 15 epilepsy centers across the nation and will enroll 3,750 patients and 3,000 controls. The size of this study will allow researchers to search for potential links between genetic sequences and specific characteristics of epilepsy in the study population that would likely go undetected in a smaller sample. With a better understanding of the specific genetic factors involved in common forms of epilepsy, it will be possible to develop new treatments that address root causes, as well as preventive measures for those at risk.
Learn more about this study
Herbal Therapies and Epilepsy: "Natural" Does Not Equal Safe
(posted 9/27/07)
Herbal therapies are commonly used to treat a number of symptoms and chronic conditions, including epilepsy. While there is some evidence of the anticonvulsant properties of certain herbs, several can actually provoke seizures, either directly or by interfering with the metabolism of antiepileptic drugs (AEDs).

Some herbs that have been shown to interact with AED metabolism include St. John's wort, garlic, echinacea, pycnogel, milk thistle, American hellebore, mugwort, and pipsissewa. Herbs that can directly provoke seizures include ginkgo, evening primrose, ephedra, mistletoe, American hellebore, and scullcap.

If you are currently taking or considering taking any of these or other herbs to treat epilepsy or other conditions, it's important that you let your doctor know. This is true for other complementary and alternative therapies as well.

Psychogenic Nonepileptic Seizures
(posted 8/16/07)
Psychogenic nonepileptic seizures can mimic almost any type of epileptic seizure; however, they are psychological in nature and, therefore, don't respond to standard epilepsy therapies. Between 5 and 35% of patients with psychogenic seizures also have epilepsy. Because of the many similarities, psychogenic seizures are often misdiagnosed as epilepsy and vice versa.

About 75% of people with psychogenic seizures are women, and most are young adults (between the ages of 20 and 40). A psychogenic seizure is an unconscious response to psychological stress or trauma. It is not a "fake" seizure or an intentional act.

A negative EEG alone is not a sufficient basis for making a diagnosis of psychogenic seizures. Diagnosis should be based on EEG monitoring along with the presence of risk factors (e.g. female gender, significant stress, past physical or sexual abuse, failure of AED therapy, etc.). Some features that can help to distinguish psychogenic seizures from epileptic seizures include gradual onset, variation from one seizure to the next, memory of what happened during the seizure, clenched teeth during the tonic phase of a convulsive seizure, asynchronous jerking (during a convulsive seizure), side-to-side head movement (during a convulsive seizure), pelvic thrusting (during a convulsive seizure), lack of post-ictal confusion and fatigue, and closed eyes.

If you suspect that you or a loved one may be experiencing psychogenic seizures, or if you feel that you've been misdiagnosed as having them, please contact Epilepsy Foundation of Michigan.

SUDEP: Assessing and Managing Your Risk
(posted 7/18/07)
SUDEP (sudden unexplained death in epilepsy) is a rare phenomenon in which people with epilepsy die without a clear cause. In most cases, it occurs while sleeping with the individual lying on his or her stomach, and it is often but not always associated with a seizure.

As the name suggests, researchers are not sure of the exact mechanisms behind SUDEP; however, possible mechanisms may include cardiac arrhythmias, impaired breathing, and fluid in the lungs. It is important to realize that SUDEP is rare, occuring in only 1 in 3,000 people with epilepsy per year. In those with intractable epilepsy, frequent seizures, and high doses of multiple antiepileptic drugs, however, the risk may be as high as 1 in 300 per year. SUDEP is most common in adults between the ages of 15 and 44.

Maximizing your seizure control through medication compliance and healthy behaviors can help to reduce the risk of SUDEP. Sleeping in the same room as another family member or using some sort of monitoring system while sleeping may also help. Lastly, talk to your doctor about your risk for SUDEP and ask if any changes to your treatment regimen can reduce this risk. For more information,contact Epilespy Foundation of Michigan or click here.

Epilepsy Increases Risks for Other Health Problems
(posted 5/16/07)
According to the Michigan Behavioral Risk Factor Survey, people with epilepsy experience worse physical health, worse mental health, more activity limitation, less life satisfaction, less physical activity, and more falls than the general population. Furthermore, 2002 National Health Interview data shows that people with epilepsy are more likely to have cancer, arthritis, heart disease, stroke, asthma, depression, anxiety, severe headaches, lower back pain, and neck pain than the general population.

Given these findings, people with epilepsy must pay special attention to their general health. Healthy behaviors including stress management, proper sleep habits, good nutrition, excercise, avoiding tobacco, and active partnership with your healthcare team can go a long way toward reducing the health risks associated with epilepsy. They also have the added benefit of possibly improving seizure control.
To find out more about managing your health risks, please contact Epilepsy Foundation of Michigan.

Stem Cell Research May Lead to New Treatments for Epilepsy
(posted 10/19/06)
Cell-based therapies have been used for years to treat disease. A prime example is the use of bone marrow transplants to treat certain forms of cancer. Research into the possible use of stem cells to treat diseases such as Parkinson's Disease, diabetes, Alzheimer's disease, and epilepsy has been growing in recent years. A search of PubMed (a national database of biomedical journals) for "epilepsy" and "stem cells" yielded 113 research articles.

Much of the research is preliminary, but stem cell transplantion, manipulation of neural stem cells already in the brain, cell-based drug delivery systems, and therapeutic cloning all have the potential to be used in the treatment of epilepsy. To find out more about stem cells and their possible uses in the treatment of disease, visit the University of Michigan's online tutorial on the subject.

For Many Patients with Epilepsy, Surgery is No Longer a Last Resort
(posted 9/14/06)
Brain surgery for epilepsy used to be considered only when all other treatment options had failed. For patients with certain types of epilepsy, however, failure to control seizures after two or three medication trials should now prompt an evaluation by an epilepsy specialist, which may include surgical evaluation.

With better diagnostic technology and candidate selection, surgical outcomes have improved significantly. This is particularly true for people with temporal lobe epilepsy. Approximately 80% of patients with unilateral mesial temporal sclerosis become seizure-free following surgical treatment (Cascino, 2004). Simlar success rates are reported for other specific conditions, such as low-grade glial neoplasms and cavernous hemangiomas. Lower success rates have been reported for other types of temporal lobe epilepsy and for extratemporal epilepsy, but they still tend to be better than the chances for success offered by trying yet another medication.

Despite the potential benefits of surgery, there are risks that need to be carefully considered before choosing this treatment option. Research findings on the long-term impact of surgery on seizure control and quality of life, while promising, are still limited. If you decide to pursue surgery as a treatment option, be sure that your evaluation and surgery is done at a center that has a proven track record of success. Don't be afraid to ask for information on surgical outcomes for your specific doctor or center.

For more information on surgery for epilepsy, please contact Epilepsy Foundation of Michigan. We encourage you to view one or both of our conference presentations on epilepsy surgery (available on DVD and VHS).

Hormone-Sensitive Seizures are Real and Treatable
(posted 8/10/06)
The reproductive hormones estrogen and progesterone have clearly established effects on neuronal excitability, with estrogen generally having an excitatory effect and progesterone having an inhibitory effect. As a result of these effects, many women experience changes in seizure activity during times of hormonal fluctuation (i.e. puberty, menopause, and certain points during the menstrual cycle). Unfortunately, many doctors are still unaware of the relationship between hormones and seizures and may not be willing or able to respond appropriately when a patient reports hormone-related seizure activity. If this is the case, consider seeing a neurologist at a comprehensive epilepsy center.

Treatment for such seizures may include the following: natural progesterone therapy during the second half of each cycle with gradual tapering and discontinuation by the end of the cycle, adjusting doses of your antiepileptic drug (AED) during periods of decreased blood levels, using adjunctive AEDs at certain points of the menstrual cycle, and using acetazolamide (Diamox) a few days premenstrually. To assist your doctor in developing a treatment strategy, it is helpful to keep a detailed record of seizures and menstrual cycles. Neuroendocrine or endocrine evaluations and additional AED blood level monitoring may also be helpful.

Ordering Larger Pills and Cutting Them in Half Can Reduce Medication Costs for Some
(posted 7/20/06)
Many pharmaceutical companies price their medication by the pill, regardless of the dosage. When this is the case, your doctor may be able to prescribe larger pills that can be split or cut in half to make the correct dose. This works best with medications that are scored down the middle. It may also work with some medications that are not scored. In some cases, however, splitting the pills reduces their effectiveness or cannot be done accurately enough to ensure the correct dosage. As such, it is important to discuss this with your doctor before any attempt to cut your pills.
If your doctor approves of this cost-saving measure, your local pharmacy can help. First, ask if your pharmacist would be willing to cut the pills for you. If he or she won't do this, ask for advice on the best method for splitting your pills. The pharmacist might suggest breaking them by hand, using a pill cutter that can be purchased at the pharmacy, or some other method. In any case, be sure to consult with your doctor if you aren't able to get clean, even cuts.

More information on...
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New Options on Horizon for Treatment of Prolonged or Acute Repetetive Seizures
(posted 6/23/06)
In the United States, Diastat (rectal diazepam) is the only FDA-approved and commercially available treatment for prolonged or acute repetetive seizures that can be administered by caregivers and non-medical personnel. While Diastat has been proven to be safe and effective, many users have expressed concerns about privacy, invasiveness, speed of action, absorption (in cases of constipation or bowel movements), recovery time, respiratory depression, and ease of administration, particularly with children in wheelchairs.

Two new options for treatment of prolonged or acute repetetive seizures in the community are currently in clinical trials. Intranasal midazolam (INM) is currently in a phase II clinical trial. Initial studies suggest that it is as safe and effective as Diastat and may be faster acting with a shorter recovery time; however, these results need confirmation in larger controlled clinical trials. Furthermore, there are some potential drawbacks to INM, including nasal irritation associated with its acidity, variable absorption rates (due to small surface area of the nostrils, swallowing, and nasal secretions), and the potential need for multiple doses (due to its short half life). Buccal (directed at the cheek) midazolam may avoid some of these issues and is used in Europe, but it is not currently in any U.S. clinical trials. Another option is an autoinjection delivery system for diazepam. Much like the EpiPen, this system delivers medication intramuscularly in the outer thigh region. The device is currently in a phase III clinical trial.

Chances of Seizure Control Decrease with Each Additional Medication Regimen.
(posted 5/25/06)
In one study (Brodie et. al, 2002), 470 newly diagnosed and previously untreated patients with epilepsy were treated and followed for a median of five years. 47% were seizure-free on their first antiepileptic drug, 13% were seizure-free on the second, and only 1% were seizure free on the third monotherapy drug.

These results and clinical practice guidelines suggest that patients should be evaluated for surgery or other treatment options if two well-tolerated and appropriate treatment regimens have failed to control their seizures. If, however, an epilepsy specialist determines that the medication regimens attempted were not appropriate for the patient's type of epilepsy, one or more medication trials may be attempted. In any case, it is important to get seizures under control as soon as possible to reduce the risk of the seizures becoming intractable. If two or more medication regimens have failed to control your seizures, consider seeing a neurologist at a comprehensive epilepsy center.

Many People Have Learned Techniques to Self-Control Seizures
(posted 5/4/06)
Have you ever been able to fight off a seizure, talk yourself out of having one, or hold back a seizure long enough to get to a safe place? Self-control of seizure activity is actually fairly common. In one study (Spector et al., 2000), 47 out of 100 respondents with epilepsy said they could sometimes stop their seizures from happening. Techniques used to stop an impending seizure included relaxation techniques, mental activity (e.g. reading, concentrating, praying, etc.), sitting or laying down, talking to oneself or another person, tensing up, and physical activity (e.g. running, jumping, etc.). Others who have a smell as an aura have been able to halt the progression of the seizure by smelling an unrelated strong odor.

Identifying techniques for self-control of seizure activity is a very individualized process, and it doesn't work for everybody. Also, there has not been enough research to validate claims that such techniques are actually preventing seizures. Nonetheless, it's certainly worth talking to your doctor about developing a behavioral strategy to improve your seizure control. The first step is to identify possible seizure triggers. This can be done by keeping a detailed seizure diary and noting enviromental, emotional, physical, and cognitive conditions prior to each seizure. Once you've identified triggers, you can take steps to avoid these triggers and experiment with different techniques to prevent seizures when trigger avoidance is not possible. It's important, however, that these efforts be used as supplement to your doctor-prescribed treatment and not a replacement. For more information, visit the Andrews-Reiter Epilepsy Research Program website.

Do You Know What Epileptic Syndrome You Have?
(posted 4/19/06)
Seizures are only a symptom of epilepsy, so its not only important to know what type of seizure(s) you have, it's also important to know what type of epilepsy (epileptic syndrome) you have. In Epilepsy Foundation of Michigan's 2005 Epilepsy Survey, 71% of respondents did not know what type of epilepsy they had. Knowing your epilepsy type or syndrome can provide you and your doctor with valuable information on the following:
  • the cause of your epilepsy
  • what is likely to happen in the future (e.g. chances of remission, disease progression, etc.)
  • what other symptoms or conditions you are likely to experience
  • what treatments will be most effective
In addition, knowing your epileptic syndrome can help you communicate more effectively when discussing your condition with others, and it allows you to do more focused research on your specific disorder. If you don't already know what type of epilepsy you have, ask your doctor. If your doctor won't or can't tell you, consider meeting with a physician who specializes in epilepsy, such as a neurologist at a comprehensive epilepsy center.

Children with Epilepsy at Increased Risk for Depression
(posted 4/5/06)
About 25% of children and adolescents with epilepsy experience depression as compared to 5% in the general child population. A number of factors unique to epilepsy contribute to this increased risk. Depression is a serious medical condition that can result in increased seizure activity, lowered school performance, decreased quality of life, risky behaviors, and even suicide. Fortunately there are a number of treatments, including medications and psychotherapy, that are effective and do not interfere with seizure control. For more information, contact Epilepsy Foundation of Michigan.

Second Injury Fund Provides Extended Workers' Compensation Benefits for People with Epilepsy
(posted 3/15/06)
If you have epilepsy and are seeking employment, certification under the Vocationally Handicapped Provision of the Second Injury Fund can serve as an added incentive for potential employers to hire you. This provision provides extended workers' compensation benefits for people with epilepsy or certain other health conditions. Specifically, the Second Injury Fund pays any workers' compensation benefits beyond 52 weeks after the date of the initial injury of a certified worker. To become certified for this benefit, contact your local Michigan Rehabilitation Services (MRS) office. The employer that hires you must then report your hiring to MRS within 60 days of the hire. To learn more, visit the Workers' Compensation Agency website, and click on Funds Administration.

Calcium and Vitamin D Supplementation Recommended for Those Taking Antiepileptic Drugs
(posted 2/15/06)
Many antiepileptic drugs (AEDs) can decrease the amount of calcium in bones, which can lead to osteoperosis. This effect is most common with phenobarbital, phenytoin, primidone, carbamazepine, and valproate. Osteoperosis and lesser forms of bone loss increase the risk of painful fractures. To prevent bone loss, current guidelines recommend that people who have taken an AED for more than 6 months should receive calcium supplementation of 1000 - 1500 mg/day and vitamin D supplementation of 400 IU/day. For those who have been on prolonged AED therapy, polytherapy (more than one AED at a time), or who have additional risk factors for osteoperosis, further preventive measures should be taken.