PURPLE DAY MARCH 26TH 2012: all about epilepsy

This article focuses on individuals and organizations working to combat neurological disorders and enhance brain health in Nigeria. It is being published to coincide with WORLD EPILEPSY DAY (March 26^th 2012), which will be celebrated in collaboration with the International League Against Epilepsy (Nigerian Chapter).

Dr Biodun Ogungbo and the International League Against Epilepsy

Biodun Ogungbo is the Consultant Neurosurgeon at Cedarcrest Hospitals, Abuja. He completed his medical education at the College of Medicine, Lagos and has a higher degree in Neurosurgery. He combines his surgical practice with a strong clinical research and audit base. He has a significant number of publications in peer reviewed journals. Dr Ogungbo is committed to creating awareness about medical issues in Nigeria especially as related to the practice of Neurosurgery.

International League Against Epilepsy (Nigerian Chapter)

The International League Against Epilepsy (ILAE) is the world's preeminent association of physicians and other health professionals working towards a world where no persons' life is limited by Epilepsy. ILAE's mission is to ensure that health professionals, patients and their care providers, governments, and the public world-wide have the educational and research resources that are essential in understanding, diagnosing and treating persons with epilepsy. We have a chapter in Nigeria which is based in Enugu.

What is epilepsy?

Epilepsy is a recurring outward manifestation of a problem with the brain. The medical definition of epilepsy is ‘repeated seizures or convulsions (or fits) due to a brain problem’. 

How does epilepsy occur?
The brain is made up of billions of nerve cells and connections which work together in a delicate pattern to move body muscles and understand whatever the body is experiencing. The normal brain is constantly producing electrical rhythms in an orderly way. However, a short circuiting of the wiring can lead to overloading of the brain causing it to stop functioning correctly and everything can become jumbled up. This misfiring can last a few seconds or be prolonged and is called a seizure or fit. Many fits is called epilepsy and someone who is having repeated fits can be epileptic.

What causes epilepsy?

Anything which can cause scarring in the brain and therefore a break in the connection of nerve cells to each other can cause epilepsy. Epilepsy can be congenital (a baby is born with it) or acquired (a person develops it after birth). It can have an obvious direct cause such as a brain tumour, head injury, stroke, and brain infection; or have no clear cause. In fact for up to 50% of patients with epilepsy there is no obvious cause. It is important to know that an isolated, single seizure does not mean a person has epilepsy. Epilepsy by definition is a chronic condition with recurring seizures. Many people can have a one-time seizure because they were very dehydrated, or had abnormal levels of substances in the blood (e.g. glucose, magnesium, calcium).

What does a seizure (epileptic fit) look like?

It all depends on the type of epilepsy, but there are 3 common manifestations. There is the simple partial type in which a part of the brain is occasionally disrupted, manifesting in the form of repeated movements of a part of the body, but the person does not lose consciousness and is fully aware of what is going on. Then there is the complex partial type, in which a part of the brain is occasionally disrupted, manifesting in the form of decreased awareness with or without repeated movements of a part of the body. Finally, there is the generalized type, in which the entire brain is disrupted at once and these patients lose consciousness frequently accompanied by jerking around, foaming at the mouth, and involuntarily urinating on themselves. A seizure can start off as complex partial and then become generalized. About 90% of seizures are self-limiting lasting seconds to no more than 5 minutes. After a complex or generalized seizure has ended, patients can be disoriented or sleepy for several minutes thereafter. If a seizure lasts for more than 10 minutes, that is unusual and is a reason to take the patient to the hospital as quickly as possible. Self-limiting seizures do not cause brain damage, but prolonged seizures certainly can, and so it is important for the patient to get to the hospital where drugs can be administered to arrest the seizure promptly.

What are the myths and misconceptions about epilepsy?

• Epilepsy is due to a spiritual attack and that the demon must be cast out of the patient. This is incorrect. Unfortunately because demons have been thought responsible, they are often ‘beaten’ out of sufferers in many churches and herbalist homes, needlessly subjecting several patients to grievous bodily harm and even death.
• Epilepsy is not contagious. It has never been and it will never be. You cannot contract epilepsy by touching the sufferer or coming in contact with their saliva. It is not an infection and is not caused by a virus or germ.
• Epilepsy is not a mental illness. Seizures are mainly a symptom that there is a physical problem, like a scar, on the brain. Some people with epilepsy are extremely clever, others are of average intelligence and some have learning difficulties. Just like normal people in the population, really.
• Epilepsy is not a bar to success in life. Many people with epilepsy enjoy highly successful lives.
• Epilepsy is not generally an inherited condition. Although, there can be a genetic predisposition, more often than not, there is no family history of epilepsy.

What are the treatment options available to patients?

Epilepsy can be treated, controlled and rarely, cured. Epilepsy can be well controlled by medications. These drugs can reduce the frequency and severity of the seizures by keeping the nerve cells quiet and making it difficult for them to short circuit. Sometimes, a patient may need to be on more than one seizure medication to control epilepsy. In fact, epilepsy is not necessarily a lifelong condition. Many people who have been seizure free for three or four years have their medications carefully withdrawn under close medical supervision and remain free for the rest of their lives. Surgery can also be successful in eliminating certain types of seizures.

Are the drugs within reach and what are the cost implications?

Many of the drugs are available in Nigeria and there are many reputable local manufacturers. The main drugs mentioned above are available and may cost up to N300 per day for effective treatment. More expensive drugs may be necessary if control is not adequate. Many of the very expensive drugs are not available in Nigeria. Other ways to treat epilepsy include surgery. Treating the cause by removing the abnormality (e.g. scar or brain tumour) may lead to cure. Surgery can be expensive. Financial cost for surgery could be as low as N100, 000 to as high as N1m or more. 

How should people treat someone having a seizure?

The best management for the patient at the time of a fit is to make sure they do not come to harm or injure themselves during the period of loss of consciousness (See figure below). Move objects that can harm the person, out of the way. If possible, place a pillow under the person’s head so that the head doesn’t bang against the floor causing injury. Keep calm and try not to panic. Let the seizure run its course and do not hold them down. If possible move them to a comfortable place and let them sleep or at least have a good rest once the seizure is over. If the seizure does not stop, or it stops then keeps recurring without the person waking up in between episodes, please get medical help immediately. Take the person to the nearest hospital where they can be helped. We have heard of some communities where burning the feet of the sufferer is supposed to be helpful! Please do not do this. Also, the practice of putting a stick or spoon in their mouth is not necessary and can be damaging. Finally, in some communities, various concoctions (urine, drugs and alcohol) are poured down the throat of the sufferer. This can lead to choking, aspiration, pneumonia and death. 

How can we position our health system to better respond to epilepsy?
Anyone can be affected by epilepsy. We need to create more awareness about nature of epilepsy and its capacity to be treated (See figure below). Policy makers at all levels of government should ensure that the drugs are more widely available and cheaper. Many patients stop taking their medications because of the poor access to and high cost of drugs, thereby leading to seizure recurrence. Finally, given the paucity of neurologists and neurosurgeons in Nigeria, efforts must be made to train more specialists and position them in all the six geopolitical zones for wider care coverage.

How can you and the Epilepsy Association be reached?

Dr Biodun Ogungbo, MBBS, FRCS, FRCS (SN), MSc

Consultant Neurosurgeon, Cedarcrest Hospital, Abuja
Telephone: 07082350074
Information Hotline: 08122221616
Email: ogungbo@btinternet.com
Web: www.linkedin.com/in/ogungbo

International League Against Epilepsy (Nigerian Chapter)

Secretariat: Neurology Unit, Dept. of Medicine, University of Nigeria Teaching Hospital (UNTH) Enugu. P.M.B. 01129, Enugu.

Secretary's number: 08056435102

Email: adikaibeb@yahoo.com.

Creating awareness about epilepsy: PURPLE DAY 26TH MARCH

Yesterday was a dramatic day at the hospital. I had met two incredible gentlemen called Toba and Femi. Both are actors and Femi graduated in dramatic arts. The plan was to brief both on convulsions and how people having a seizure behave. This was so they could dramatize this for PURPLE DAY on March 26th 2012.

We sat in my office and I gave a brief on what happens to the patient. The first information was that  patients having a typical grand mal seizure suddenly go blank and lose contact with their surroundings. They can then become still, stiffen up and may fall down as they lose consciousness. Then comes the jerking of all the limbs and foaming from the mouth. This lasts seconds or a few minutes before they relax and fall into a deep sleep. Some may wake up confused and aching all over from the excessive muscular activity.

So, Toba and Femi got the idea. They wondered though about how to simulate foaming from the mouth. We decided to get some antacids (Andrew's Liver SALT). This came in a sachet and was a powdered formulation. But, once mixed with a little water or saliva, it turned to a copious amount of foam and was very realistic.

The boys practiced a seizure in my office and I was suitably impressed.

We then decided to try it out on my staff and patients in the reception of the hospital. What drama?

Femi and Toba went into the reception looking as any normal visitor or patient and initiated a mundane conversation between each other. Soon, Femi started having a seizure and there was immediate pandemonium as both staff and patients ran away. The receptionist and some patients started shouting for a doctor and notably, no one went near him to help.

The fit soon terminated, Femi picked up his bags and started laughing. The action had finished dramatically.

I came then and told the people it was all amateur drama simulating a seizure to see the reaction of people even in an hospital setting. I then followed with information and advice on what to do when you witness a person having an attack of convulsion.

So we are geared up to demonstrate this on purple day in Abuja and I think the impact will be great. I am hoping it will be the talk of the town for  a long time and hopefully will IMPACT greatly on the lives of sufferers.

The following information is important to pass on: