Myths about Epilepsy

This article discusses nine myths about epilepsy and what the real answer is.

Myth 1 – You need to put a spoon or cloth to stop a fitting person from biting his/her tongue. You also need to restrain them so they cannot hurt themselves.

Do not do this – you may obstruct his/her airway and cause him/her to choke. You can cause more harm by doing so. Other than causing them to choke, you may end up injuring their gums, breaking their teeth or even their jaw! Do not restrain them. What you should do is to put a fitting person in the left lateral or recovery position. Cushion their head so that they do not injure their head on any hard surface. Remove dangerous objects like broken glasses or scissors away from them so that they could not accidentally hurt themselves while they were having a fit. If fits occurred by a busy roadside, in the water or any environment that can endanger them – you need to move him/her to a safer place.

Myth 2 – People with epilepsy are crazy, spiritually possessed, have bad blood or victims of black magic. No medication can cure them.

There is a lot of stigma associated with epilepsy and because of this misconception – many chose to suffer in silence and did not seek medical help. Epilepsy is a medical condition and not due to black magic or spiritual possession. Symptoms of seizures can be difficult to handle but can be controlled with medications. For certain patients with a type of focal epilepsy, they can even be cured with brain surgery.

Myth 3 – Epileptics or people suffering from epilepsy are stupid and disabled.

Epilepsy can occur as a single condition, or may accompany other conditions affecting the brain such as cerebral palsy, mental retardation, autism, Alzheimer’s, and traumatic brain injury. So yes – many epileptics are considered mentally and socially disabled because of their associated conditions. But not all of them are disabled. In fact, many have the same range of abilities and intelligence as the rest of us. Some may have severe seizures and because of that, they could not work. There are also others who have only occasional mild seizure or seizure-free under the control of medications, who managed to excel in their work.

Myth 4 – Epileptics cannot lead a normal life. They cannot work, cannot marry and have kids.

Epilepsy is a chronic medical problem just like diabetes and asthma. For many people, they can be successfully treated. For them, they can lead a normal seizure-free life.

Unfortunately, treatment does not work for everyone. Some still have occasional breakthrough seizures despite being on medications, while others suffered from side effects from their medications. These problems make life difficult for people living with epilepsy. They find it difficult to work and there are limitations over simple things normal people take for granted like driving, cycling or swimming.

Instead of ignoring their plight, what we can do is to support them at home, workplace and in public. Employers can help by providing jobs to people with epilepsy. Co-workers can help by learning first aid in case he/she develops seizure in his/her workplace. Family members can help them by driving them to school or work. Patients also need to be compliant, taking medications on time and avoid things that can precipitate their seizures.

Myth 5 – Seizures only occur in childhood.

Seizures brought by fever or also known as febrile seizures, are common in childhood. Many would no longer have seizures after they grow up but some ended up with seizures throughout their adulthood. The elderly and adults may develop seizures after a stroke, traumatic brain injury, brain tumour or infections to the brain. Adults can also develop alcohol or drug related seizures.

Myth 6 – Epilepsy does not harm you. It cannot kill you.

Epilepsy patients can develop into a prolonged seizure which is called status epilepticus. Status epilepticus is when a seizure lasts for more than 30 minutes or a multiple short runs of seizures lasting for 30 minutes or more, with little or no recovery of consciousness in between.

Any type of seizure can become status epilepticus. Status epilepticus is a medical emergency because the longer a seizure lasts; the more likely the brain can get damaged irreversibly. Without medical help, patient can die or suffer permanent brain injury.

Myth 7 – Epilepsy is contagious.

You cannot get ‘infected’ with seizures by living/working/playing with an epilepsy patient.

Women with epilepsy who wants to get pregnant need to be counseled by their doctors before they try to conceive. The rate of conception for an epileptic woman is 25% to 33% lesser than an average woman.

They can get pregnant provided their seizures are well controlled on the lowest possible drug dosage, preferably only on one type of anti epileptic medication. First, they need to be assessed by a neurologist and later closely monitored by both an obstetrician and neurologist from conception to birth. They must avoid certain medications like Topiramate (which could cause cleft palate in their new born child) during the first three months of pregnancy and be on the lowest possible dose of anti epileptic medication such as sodium valproate.

If you get pregnant while on anti epileptic drugs, you need to inform your doctor immediately. Do not stop your medication on your own. Get a doctor’s advice, preferably a neurologist. You would need an early detailed ultrasound scan to identify any congenital abnormality in the unborn child. If you stop your medications against the doctor’s advice – you may end up getting prolonged seizure which can harm you and your unborn child.

Myth 8 – Epilepsy is a mental illness.

Epilepsy is a physical disorder that has nothing to do with mental health or illness. However, some epilepsy patients ended up getting depression due to social stigma to epilepsy. They became socially ostracized and limit themselves at home. This is the reason we need to change the public perception of epilepsy and provide support to them and their carers.

Myth 9 – Epilepsy can be cured by alternative therapy. This therapy has no side effect and will not interfere with my medications.

There are a lot of alternative therapies believed to cure epilepsy such as herbal supplements, special diets, chelating therapy, hypnosis and many more. But the fact remains that with these therapies – their safety and efficacy are not proven yet through clinical trials. When patients ask me is it safe to take these natural remedies – I would tell them that I do not know. Without clinical studies on its efficacy and safety – it is impossible for any doctors to tell you whether these therapies are safe or do they really work. Doctors could not tell you whether taking this therapy with your anti epileptic medication is safe or not, or will it cause side effects and interact with your medication. This is because there is no large scale study done on these therapies and how will they interact with your anti epileptic medications. Always tell your doctor if you are using any alternative therapy that might interfere with your epilepsy treatment.

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Medical uses and stigma associated with botox

Botox can be used to help with migraines, cerebral palsy, and overactive bladders. However, Botox users face the stigma attached with using a cosmetic product for medical purposes.

A cosmetic procedure popular among Hollywood stars can now be used to supposedly cure chronic migraines.

Botox, which is used to reverse the signs of aging is now being used to treat the neurological disorder.

More than 42,000 Kiwis suffer from chronic migraines every year and when it strikes the sufferer can be out of action for up to 72 hours.

But Botox has been proven to successfully treat the debilitating condition as well as other medical conditions.

"We can use it for cerebral palsy children, it can help them to walk again, for people who have spastic syndromes in their neck where they have chronic pain in their neck," Dr Garsing Wong from Sapphire Migraine Clinic told ONE News.

"It can even be injected into bladders, for people who over-active bladders now."

Botulinum Toxin or Botox is one of the most poisonous substances known to man, but the small dose used for treatment are less toxic than drugs you can buy over the counter.

Injections are applied to places that hold a lot of tension and through paralysing the muscle or relaxing it the treatment is able to reduce the pain at the trigger points.

But the stigma attached to Botox remains.

"The first thing, I think, that pops into your head are all those people in LA and stuff and their foreheads are literally frozen and first of you all you think; everyone's going to judge me," said Thea Lyle, Migraine Sufferer.

Ms Lyle said when she was first going to have botox to help with her migraines she was quite apprehensive about it.

But Ms Lyle is only one of hundreds of people who have had the procedure at the Sapphire Migraine Clinic.

For those who combine it with intensive physiotherapy there is a 90% success rate.

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10 Important Things to Know About Epilepsy

This article discusses 10 important aspects of epilepsy that are important to know.

As a neurologist with specialty training in this field, I have been devoted to helping the plight of individuals with epilepsy find better treatments, advocate for better management and to illuminate some of the terrible misinformation that is spread about this condition.  In March 2012, the Institute of Medicine took up the topic of epilepsy and how it is handled in the United States (U.S.).  As a member of that panel, I was able to hear important testimony from public, private and government institutions about how epilepsy is managed in the U.S. and some of the major problems that affect its care and the people who have it.  The following are several important items that may help to clarify one’s knowledge about epilepsy and show that this is truly a common condition.

1. Epilepsy is the condition of having repeated, unprovoked seizures, whereas a seizure is anabnormal electrical discharge of the brain which then results in an individual losing consciousness or having a change in their neurological function. There are several types of seizures and not all are dramatic in their presentation, though they are often depicted in movies and television as a convulsion.  Some seizures manifest by one simply losing focus, but to a bystander, it may seem as daydreaming, wandering or a tremor.  Therefore, not all seizures are very dramatic in their presentations.

2. Epilepsy is very common.  According to the CDC, one in 26 people in the U.S. will develop epilepsy at some point in their lifetime.  If you think about it, that means two persons on every bus or two people in every subway car will have epilepsy.  There are 150,000 new cases of epilepsy diagnosed in the United States annually; 2.2 million people in the U.S. and more than65 million people worldwide have the condition.

3. Children and older adults are the fastest-growing segments of the population with new cases of epilepsy; however, the reason that they have epilepsy varies dramatically.  In children, we see an overabundance of genetic and infectious causes of seizures. For older adults, stroke and Alzheimer’s disease seem to be the common cause of epilepsy and seizures in this population.

4. There are numerous causes of seizures and epilepsy.  Stroke, head trauma and tumors are common causes of seizures in the U.S., yet the number one cause of seizures outside of the U.S. is an infection which is completely preventable by simply washing one’s hands. Neurocysticercosis– caused by the Taenia solium tapeworm– is one of the most common causes of epilepsy in the world and an increasing cause of seizures in the U.S.   Other preventable causes of epilepsy are head trauma from car accidents, violence or the consequences of military intervention.

5. Epilepsy is not a benign condition and can result in death. The number of people with epilepsy who die of sudden unexpected death in epilepsy (SUDEP) varies from one of every10,000 newly diagnosed to nine of every 1,000 candidates for epilepsy surgery.

6. For many people with epilepsy, seizures can be effectively reduced or eliminated by medication, surgery, devices and dietary or other therapies; however, referral to epilepsy centers for surgery can take 15 years or more.  In the Latino population, there is a considerable misinformation and lack of information; oftentimes that lack of access does not translate into meaningful care. There are 26 different drugs approved for treatment in the U.S. for epilepsy.  Moreover there is a pacemaker like device known as the vagus nerve stimulator, a diet- ketogenic or modified Atkins, and numerous surgeries.  These effective treatments are available for many types of epilepsies; however, access and referrals to these treatments fall short.

7. There is considerable stigma associated with epilepsy that sometimes overwhelms the condition itself. The word” epilepsy” is considered stigmatizing in its own right.  The long history of epilepsy is full of examples of discrimination and secrecy due to misinformation and lack of understanding by the general public.  This stigma can have a detrimental effect on people with epilepsy and continued and sustained efforts are needed to raise public awareness and convey what epilepsy is and what it is not, as well as the basic message that this is an exceedingly common condition.

8. There are significant quality of life issues associated with epilepsy and one of the most significant is driving.  Every state in the U.S. has a law that dictates whether someone with epilepsy can or cannot drive and the length of time they need to be seizure free for them to drive.  In six of these states, the law has mandatory reporting by the physician of all patients with epilepsy to a medical board.  Individuals need to be aware of these laws as there are, in some cases, criminal consequences for both physician and patients for their lack of awareness associated with it.

9. Epilepsy is more than just seizures as it often has other accompanying conditions associated with it.  Oftentimes, poor memory, mood issues, depression and anxiety walk hand in hand with issues associated with epilepsy and need to be managed and thought of when caring for the individual with epilepsy.

10. Sadly, many health professionals need to be better informed about epilepsy.  Only 20 percent of U.S. medical schools require training in neurology…and epilepsy and how to treat it.  Improvements in epilepsy care can only be made if the quality and quantity of education about epilepsy for health care professionals are improved dramatically at undergraduate and graduate levels of lifelong learning processes.  In addition, more educational efforts for patients with epilepsy and their families is needed.

It is only with a concerted effort to illuminate epilepsy and talk about the condition that one will hopefully empower individuals with knowledge so as to improve quality of life.

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Social Stigma of Migraine Headaches Similar to Social Stigma of Epilepsy

A study shows that the social stigma of those who suffer from migraine headaches is similar, if not worse, to the social stigma of those who suffer from epilepsy.

A groundbreaking study lead by William B. Young, MD, a neurologist at Thomas Jefferson University Hospital's Headache Center, shows that patients with migraine (a combination of severe headache, nausea, light sensitivity, and other factors) suffer social stigma from their disease similar to the stigma experienced by patients with epilepsy.

The study, to be released on January 16, 2013 in the online journal PLOS ONE, is one of the first to study the social cost of this frequently debilitating and misunderstood illness. The study was co-authored by Joanna Kempner, PhD, Assistant Professor of Sociology at Rutgers University in New Brunswick, NJ.

Social stigma occurs when society disapproves of a person because they are different in some way -- either externally, as with a birthmark, or in an unseen way, as with migraine. Stigma can hurt people's personal relationships, their work prospects, and their state of mind.

"When people treat my patients as if they are to blame because they have a severe, debilitating disease, they are contributing to the problem and making life harder for them," commented Dr. Young.

The authors conclude that the high level of stigma for chronic migraine sufferers is due to the impact of migraine on the study subjects' work lives: Chronic migraine has a bigger impact on the work of migraine patients than epilepsy has on the work of epilepsy patients. Stigma is worse because the chronic headache patients are more disabled. If you take out disability, the stigma of chronic migraine and epilepsy are about the same and the stigma of episodic migraine is less.

"I don't think people realize that it is not unusual for people with migraine to have severe headaches every day -- to be so disabled that they are unable to work," said Dr. Young. "This is what causes the stigma -- the fact that people with severe migraine may not be able to work."

Investigators surveyed 123 episodic migraine patients1, 123 chronic migraine patients, and 62 epilepsy patients using a 24-item stigma scale for chronic illness. They used epilepsy for comparison, a disease well-known for the stigma associated with it. Patients were recruited between October 2009 and July 2011 from the Jefferson Headache Center and the Jefferson Comprehensive Epilepsy Center in Philadelphia, PA.

The study showed that patients with chronic migraine had higher scores (54.0+/- 20.2) on the stigma scale than either episodic migraine (41.7 +/-14.8) or epilepsy patients (44.6 +/-16.3) (p<0.001). Adjusted scores put migraine and epilepsy scores roughly equal, with (49.3 vs. 46.5; 95% confidence interval for both). Adjusted scores for episodic migraine were lower (43.7; 95% confidence interval).

Study subjects with chronic migraine reported a greater inability to work than patients with epilepsy. Many required bed rest during the day for hours at a time, many times per month.

The study and treatment of migraine suffers from stigma itself; it is often considered a minor health problem -- "just a headache." Yet in Dr. Young's clinic alone, 25 percent of migraine patients cannot hold a job due to the disease. Many more suffer severe headaches nearly every day. Severe depression and even suicidal thoughts are common among patients with chronic migraine.

Episodic migraine was defined as 14 headaches per month or fewer. Chronic migraine is greater than 14 headaches per month, with eight of these meeting the criteria for migraine.

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