A. EPILEPSY QUESTIONS AND ANSWERS
1. What is epilepsy
Epilepsy has been defined by Lord Russel Brain as “a disorder of the function of the brain which starts suddenly, ceases spontaneously and has a tendency to reocccur”. This disorder of function is called a seizure. In former days, and in more simple terms, epilepsy has also been referred to as a “falling disease”, however this condition is not only characterized by falling. There are several types of seizures. During the best known seizure, a person with epilepsy (PWE) looses consciousness and gets rhythmic movements of the limbs. In some cases the person may briefly behave abnormally or gets into a state of confusion after recovering from a seizure.
To understand epilepsy one would need to use an example of a torch. Our body has “electricity” which carries messages from the brain to other parts of the body. The electricity is generated from the brain and is carried by the nerves to our organs like muscles, glands and so on. Due to the circumstances that we shall see shortly below, the flow of this electricity in the brain may be disturbed or interrupted. This causes a temporally short circuit. This temporary short circuit causes a seizure in a person with epilepsy.
All of us will have used a torch, which may suddenly switch itself off only to light again after a short while. It is also very common for electricity to flicker but then continue to burn steadily in a short while. Such are the examples one uses to explain how epilepsy affects a person. Later, it will be explained how certain scenarios or circumstances may trigger off a seizure in a person with epilepsy. Such circumstances can be extreme shock or sudden high fever like in malaria, rarely flashing lights. These are circumstances that a person with epilepsy needs to avoid in order to guard against getting a fit/seizure.
2. What are the main causes of epilepsy?
Epilepsy can be passed on from the parents to the children (hereditary) or can be caused by;
• Repeated or recurrent convulsions due to high body temperature (fever) especially in the case of children. Untreated childhood convulsions may lead to epilepsy.
• Injury to the head arising from fights, accidents etc. Head injury during childbirth may also cause epilepsy.
• Infections like syphilis, HIV/AIDS, tapeworms, measles, meningitis, onchocerciasis. (filariasis), which may affect the brain.
• Substance and chemical intoxication for example alcoholism, bhangi smoking etc.
• Brain tumours.
• Blood-clots in the brain
3. Which part of the body is affected in a PWE
When a person gets sick, one can show to the physician where the pain lies or originates. When one has epilepsy or seizures, it is difficult for the patient to identify the affected part because persons with epilepsy become unconscious during a seizure. Their brain is temporarily switched off and they don’t experience the seizure. Depending on the part of the brain that is affected, different people will experience different types of seizures. For example a seizure may start with twitching of fingers or shaking of a hand or foot on one side of the body, or a feeling of pins and needles sticking in a body part. However sometimes the whole brain is immediately involved and consciousness is immediately lost. It is a big dilemma for PWE that they cannot recognize where their ailment starts (apart from those who suffer from partial epilepsy, starting with simple partial seizures where consciousness is not yet lost). Some people with epilepsy actually never know what affects them. They only find themselves with bruises and wounds. In a country like Uganda where literacy is very low and belief in ancestral spirits is still very high, some guardians/relatives attribute epilepsy to being bewitched or cursed. This is not true. It is a well-known fact that witchcraft or curses don’t cause epilepsy. This false belief seems to come about because the person with epilepsy looses consciousness during a seizure.
This is explained from the fact that the brain is the part of the body that is affected. It is the brain that controls all consciousness, awareness, thoughts and judgment. So, when there is temporally interruption or abnormal electrical activities in a large part of the brain, the PWE looses sense and awareness for a while. PWE themselves need to understand this so as to avoid further damage to their brains. This short circuit of the electricity in the brain can cause damage to the brain cells just like a short circuit may blow out a burning bulb, so it is important to try and stop getting seizures, even if one is not bothered too much by a mild epilepsy, with seizures weeks or months apart. Unfortunately, brain cells may never be re-built or repaired. This explains why children who grow up with epilepsy may become mentally retarded if the epilepsy is untreated. Part of the problem is that seizures that cause falls may also cause the head to hit a stone or other inflexible item and so damage the brain further. Treatment of epilepsy reduces or completely stops fits thereby stopping future damage to the irreplaceable brain cells.
4. You mentioned alcohol as one of the likely causes of epilepsy, how come that some people are heavy drinkers yet they never get epilepsy.
Yes our bodies have different capacities to cope with certain situations. Some people can get drunk if they drink one litre of beer while others will drink half a litre of whisky or waragi before getting drunk. Some people even become so dependent on alcohol that they cannot function well before drinking. It is true that some people behave like PWE when they get drunk. They for example loose consciousness, behave abnormally, get froth in their mouth and eventually sleep. Some may also loose continence. Alcohol does a lot of damage to the brain (think of those drunkards who get very forgetful) furthermore drunkards often pick a fight and may be hit on the head, and also the liver often gets damaged causing malnutrition and less resistance to diseases, so it is also a contributing factor to epilepsy.
5. What advice would you give to a PWE who drinks and smokes moderately?
It is advisable for people to quit smoking and drinking. PWE need to remain sober to remember to take their medication and to get strength to do their work. Drinking and smoking also waste a lot of money, which a person with epilepsy needs for their medication.
B. MEDICAL ASPECTS AND MEDICATION
6. Does epilepsy cause mental retardation?
Depending on the frequency of the attacks, and the damage by banging one’s head, untreated epilepsy is likely to lead to mental retardation and other damage. I have mentioned in question 3, that frequent seizures damage brain cells and that the brain cells cannot be repaired. If this damage to the brain cells by abnormal electro-currents lightening the brain is not stopped, then the PWE will get slowed mental functioning.
7. Which are the common drugs used in the treatment of epilepsy in Uganda.
Although there is a wide range of effective drugs on the market, the choice for Ugandans is limited by the cost of the drugs. The commonest drugs in most public health units is phenobarbitone, this is readily available and cheap. Some practitioners are however discouraging its use due to its side effects, which is mainly drowsiness, which can be avoided by careful use of the medication. All drugs, not only those against epilepsy, can have side-effects. Phenytoin is also readily available. Carbamazepine is available on market but so expensive that most PWE who actually need it cannot access it. There are other drugs like Epillim (valproate), and others which are newer and effective but expensive. It should be mentioned here that there are other therapies used in the treatment of epilepsy, which are not readily available on the Uganda market. These include brain surgery and the Ketogenic diet (meals with a lot of fats, that are difficult to make and even more difficult to keep eating).
8. Is it possible for some one with epilepsy to get a warning sign or tell that he/she is about to get a seizure?
For some types of epilepsy, a PWE may get a warning sign. This is very common in partial epilepsy. This person may get a churning sensation in the abdomen, which spreads to the chest or neck. Others get visual hallucinations (seeing particular terrifying things that are actually not there) auditory hallucinations (hears voices or sounds) or olfactory hallucinations (gets a bad smell). Or the person may get feelings of pins and needles in a body part or the onset of muscle twitching in a body part that may involve more and more muscles until there is a full-blown seizure.
In all such cases, what a person with epilepsy experiences will always happen in the same way before he looses conscious and he may even call for help due to the fear created by such situations. Shortly after experiencing such, the PWE will loose consciousness and get a complete attack. For some people the space between such warnings and the actual attack can allow them to move away from the public or danger and experience ‘their’ seizure in privacy or away from the public.
9. I have heard that Chinese herbal treatment cures epilepsy.
The use of herbs in Uganda is very common. Of late Chinese herbal treatment is sold in certain pharmacies. I have no concrete evidence that this is an effective treatment for epilepsy. I also know that many Ugandan herbalists provide certain concoctions as treatment for epilepsy. The advice I always give to people who ask me about this is that, it is a matter of personal decision. It is a well established scientific fact that most medicine is derived from herbs and roots. It is advisable for a person with epilepsy in Uganda to continue taking their prescribed drugs from the hospital. None can however stop the other from taking herbal medicine. But it is advisable PWE continue with their drugs that they get from the hospital, even when they want to experiment with herbal or other rituals. The problem associated with herbal medicine is that they have no clear dosage and some herbalists actually discourage PWE from taking their hospital drugs. This frequently leads to relapses or increase in the number of seizures in the event that the herbs are not effective. The drugs from the hospital suppress the seizures, but just like a spring which has been compressed, suddenly releasing it may make it jump. Seizures that have been suppressed by drugs, may return much stronger and in rapid repetition, which creates a hazardous, life-threatening situation. Never stop the hospital drugs suddenly!
10. Why do people with epilepsy gain a lot of weight while on treatment?
There is a tendency for parents to discourage their children from doing manual work in the home for the fear that they may get attacks. This leads to relaxation and subsequent weight gain. In other cases, I would imagine that the gain in weight might be a side effect of the drugs. Some of the drugs people take may require a lot of fluid consumption and also stimulate appetite. This has however not been proved scientifically and some of our colleagues in the medical field can help to explain it.
11. What are the main types of epilepsy? Is there a type where people do not fall down?
There are several kinds of epilepsy, but more important to know are the types of seizures that can occur when someone has epilepsy.
The commonest type of seizures are generalized tonic clonic seizures, formerly called Grand mal (French for “the big disease”) and may be recognized by;
o A sudden attack where the individual falls heavily on the ground.
o The person’s body becomes stiff for a few seconds and then goes into violent rhythmic shaking, which lasts two or three minutes.
o During this time the jaws become stiff and the person may bite his or her tongue or pass urine and faeces.
o The person may then go into deep sleep for a few minutes or hours.
o After all these or some of the above has happened to the person, he/she doesn’t remember anything that happened during the seizure.
The second type are Absence seizures (which the French called petit mal or small disease). This is mostly in children and is characterized by repeated blank stares into space. The person stops what he/she was doing and drops what he/she had in the hands. Then, he/she resumes the activity previously being done but doesn’t fall. During the episode the child is both blind and deaf. Many children who usually get absent minded in class or break utensils at home may have this type of epilepsy but may pass unnoticed by family members and teachers. It is advisable that children, who loose their attention frequently, should be reviewed by a psychiatric nurse or clinician.
The third type are Simple Partial seizures or Jacksonian fits. These may be motor, sensory or both. In the motor type, the movement starts in the toes of the limb and spreads to the rest of one side of the body. The person then begins to shake the arm and leg on one side, of the body, the person is conscious but cannot control this movement. When the movement extends to the other side of the body, the person looses consciousness and falls.
In the sensory type, a sensation also begins from an extreme end of the limb and spreads to cover one side of the body. The person is still conscious but when the other side gets involved, the person looses consciousness and fall down.
The fourth type are Complex Partial seizures (already mentioned in question 8). The person will get a warning sign by feeling a sensation rising upwards from the stomach, seeing particular things, which are in reality not there. Alternatively the person will hear sounds or voices, which are also not there. This in fact is the onset as a simple partial seizure, but then the seizure becomes complex, all the word complex here means is that consciousness is lost. However the seizure has not (yet) become a generalized tonic clonic seizure. In a complex partial seizure a person will always get the same visual or auditory experience before getting the seizure. This will take place in a clear consciousness and the person will recall that experience. After the warning sign, a person with complex partial seizures will behave strangely, walk about, fumble with his clothes, and if restraint by a well-meaning bystander may become violent and aggressive, excited, shouts and run around in the abnormal way. Others may fall down after the warning sign and the complex partial seizure. When they fall the complex partial seizure has become a generalized tonic clonic seizure. The person doesn’t remember what follows the warning sign.
As shown in above, there are some types of seizures, which do not lead to a fall. Some parents and guardians of children with epilepsy usually find it difficult to accept that their child has epilepsy if the child does not fall (as in a Grand mal fit). Absence seizures are common in children and if not treated sometimes lead to epilepsy with generalized tonic clonic seizures (Grand Mal) where the person falls.
12. You have said that epilepsy is a chronic condition. For how long does a PWE have to take drugs?
Epilepsy just like high blood pressure, Asthma, and Ulcers, is a condition that does not go away completely after treatment. On average it lasts 13 years, however, especially epilepsy in children may last only a few years, that means that for other people with epilepsy, the condition lasts longer, for some even a life-time. In the West it has been found that 70% of PWE will be controlled by medication and will have no more seizures, when using their medication as long as their epilepsy lasts. Of those whose seizures can not be controlled by medication a portion can be helped by an operation. To find out whether the Epilepsy is over, the medication has to be prudently removed. Health workers recommend that from the time one starts getting drugs, they need to keep on taking the drugs and receiving medical reviews for the next two years. Thereafter the doctor will decide to reduce the medication if the person has not had a single attack for two consecutive years. The dosage will be reduced to a low level and if the person continues to be controlled during the third year, medication will be completely stopped. It is important to continue visiting your health worker throughout this period. If the person has not had any attack for three years in a row then one may be allowed to discontinue the use of drugs. Such a person needs to remain aware of necessity to visit his or her physician in case of abnormal feelings or sensations. But otherwise such a person will be declared free of epilepsy.
During a discussion about epilepsy in my work I have found out that many people, who have been on treatment and have been free from attacks for more than three years, still prefer to take a low dose of their medication. This is purely a free choice and it is understandable. Some have mentioned to me that such a low dose is harmless while others say that they cannot imagine themselves off drugs. That is not an addition to anti –convulsant drugs but a sort of precaution, that they should never have seizures again.
13. I have been taking anti-convulsant drugs for some time now. Do these drugs have any side effects on my life?
Like most drugs anti- convulsants have side effects on certain individuals consuming them. Usually the doctor or clinician should be able to explain some of these side effects. Some of the side effects associated with some of these drugs used in the treatment of epilepsy include; a feeling of drowsiness, general weakness, feeling sleepy etc. the person with epilepsy is always advised to report to the health worker any bodily signs or symptoms that have started after beginning treatment or changing the amount of the prescribed drug as these may be side effects arising out of treatment. A drug like phenytoin is known to cause a swollen gum in some users. Most of these side effects are not dangerous and can always be handled. It is known that a dosage consumed by a PWE needs to be adjusted regularly in order to avoid such side effects.
14. Is epilepsy a disease that is preventable? Are there some things parents can do in order to prevent their children getting epilepsy?
Where as I would not wish to imply that some people have epilepsy due to carelessness of their parents or of themselves, I think some of the causes of epilepsy can easily be avoided or prevented. These causes include; infections like HIV/Aids, alcoholism, injury and trauma arising out of accidents and childbirth. One must also keep in mind that, epilepsy may be caused by a combination of factors. Some causes of epilepsy are however beyond human capacity to avoid. These include hereditary factors and brain tumors. It is for example clear that the percentage of people in developed countries who have epilepsy is less than those in developing countries. This can be explained by the fact that there is better healthcare in such countries. The level of literacy in developed countries also makes it possible for people to avoid infections and practice safer childcare methods.
15. If I forgot to take my daily dose of drugs, should I add on that dose to the next day’s dose?
It is absolutely natural to forget, it is even expected if one has to take drugs for a long time. Many PWE will have a tendency to take a lot of drugs after they experience a seizure. This is not necessary. Of course it is advisable to always remember to take the drugs as prescribed. This can be easier by soliciting the support of family members who can always remind you to take your doze. It is not advisable to combine doses. This is an over dose. Wherever you forget to take your dose just once, continue with the next dose and just forget about the missed dose. If you have missed one dose and you have a difficult epilepsy with frequent seizures, while you can not consult with the person who prescribed the medication, take the missed dose half-way between your normal schedule, say you take your phenobarbitone everyday before going to sleep, take the missed dose at breakfast or noon. If several doses are missed you have to consult your health worker.
16. If a PWE suffers from another disease like malaria, should she suspend taking her anti epileptic treatment while on treatment?
As we have seen before, treatment for epilepsy takes long. In between, PWE are likely to get other ailments like malaria. Each sickness requires it’s own treatment. Just like epilepsy, malaria (which is a common ailment) requires quick and adequate treatment. PWE who get malaria should therefore go for immediate treatment. In the meantime it is advisable to also continue taking the anti epileptic dose. However, in my opinion, it would be good to inform the health worker or clinician going to prescribe any medicine for you that you live with epilepsy. This will enable the clinician to measure the appropriate dose and also take care of any side effects that may arise or give the necessary medical advise.
Drugs (and food) may influence each others action. For example someone who is using anticonvulsants and wishes to use contraceptive drugs will need a higher dose of the contraceptive drug as the body has become more efficient in eliminating the contraceptive.
17. Is it advisable to take local herbs while also taking ant epileptic drugs?
Many Ugandans use local herbs to treat various ailments. Modern health workers also acknowledge the potency of herbs in medical practice. The only problem that arises out of the use of herbs is that as of now, herbalists have not yet established standard doses. We all acknowledge that most medicines come from herbs. The only problem we experience with the use of herbs in treating epilepsy is that most herbalists tend to despise modern drugs. They go ahead to advise their clients not to take drugs. Since the dosage and side effects of herbs is not yet standardized, most clients end up getting confused. This results in such PWE getting seizures again.
My advise to PWE who have started medication using modern drugs is that they should continue taking their dosage as prescribed by the clinician. However, should they feel that they would wish to use herbs; they are free to go ahead. Normally PWE can be able to see or gauge the improvement they have achieved with drugs. Such improvement may sometimes require a lot of patience. Whereas some PWE achieve control within a few months, others will have to take a longer time, say six months. PWE or their guardians are encouraged to give the drugs a chance before resorting again to herbs. This enables the clinician to make the right choice of drugs or combination of drugs and the right dosage appropriate for the individual. If, as advised, the modern drugs are continued but in addition herbs are being used, side-effects may start to occur. It is then necessary to consult your clinician.
18. Some times when I visit the hospital I am given drugs that cannot take me up to the next appointment, what do you advise me to do?
It is very common for many government health units not to have enough drugs for all the clients visiting the unit say in a month. The health workers therefore, try to ration the available stock in such a way that every client who comes will at least get some drugs. It is advisable in such a case that the individual PWE or the guardian, purchase additional drugs from the pharmacy. We must remember that a PWE will never be off drugs unless the clinician has recommended that. Being off drugs may precipitate another attack. PWE therefore need to have enough supply of drugs even when they are not experiencing any more seizures until such a time that their doctor allows them to stop taking drugs.
19. What is the immediate First Aid a PWE requires when he/she gets a seizure?
It is very vital to give the required first aid to a person who has just had an attack of epilepsy in order to avoid injury to the person. It must be remembered that during an attack of epilepsy, the person is unconscious and can easily injure oneself or fall in a fire or in a dangerous place like a road where oncoming traffic may kill such a person. The following has been suggested as the necessary first aid.
- Remove the objects that can hurt a person or remove the person away from such objects or danger.
- Protect the head with your hands or any cushion with in easy reach.
- Loosen tight clothes like necktie or belts.
- Do not give any thing by mouth.
- Do not put any thing between the teeth because in the process, you may injure the teeth and the gum, and broken pieces may even enter into the lungs!
- Turn the person and make him or her lie on the side (in a recovery position) so that he/she dose not choke in case the saliva and the mucus blocks the air passage.
- Stay with the person until he/she gains full consciousness.
- Orientate the person and explain what happened.
- Encourage the person to seek medical attention and refer him/her to the next health unit where they may get medical attention.
20. What is the relationship between epilepsy and mental illness? Can one lead to the other?
We have mentioned that there are different types of epilepsy and we saw that epilepsy is a brain disorder causing the dysfunction of the electro-currents in the brain. Actually epilepsy is a neurvous disorder. This means that this has to do with the nerves and the nervous system.
Mental illness is a brain disorder that affects the way one feels about himself and others, how one responds to the day-to-day demands of life, how one thinks feels and acts and how one handles stress, relates to others and makes choices and decisions. Mental illness is therefore the abnormal behavior; feelings and thinking that interfere significantly with a person’s ability to work, to get along with other people or to enjoy life.
Both epilepsy and mental illness arise out of abnormal functioning of the brain. But epilepsy affects those parts of the brain that control nerve functioning, and it does so briefly, although repeatedly. Such dysfunction of the brain in a person with epilepsy leads to different types of seizures that have been discussed in question 11. In the case of mental illness, the malfunction of the brain is related to the parts that affect thinking, perception of oneself and others and decision making. In mental illness, there is a more pronounced trait of abnormal behavior occurring continuously for a longer period of time. In epilepsy, abnormal behavior is only seen during a seizure or shortly after. The individual will be able to function normally in between episodes. Even before treatment.
We have previously seen a type of seizure called Complex Partial Seizure, which manifest with some psychiatric symptoms. These are normally limited to the time during a seizure and the person has no immediate memory of such occurrences. In mental illness, the level of conscious will normally be altered but not completely lost. However, just like other diseases like malaria, gout or whatever, can occur in a PWE also mental disorders can be combined with epilepsy in one and the same person
This is very common especially in individuals who have an suppressed immunity syndrome or HIV/Aids It has previously been mentioned that uncontrolled seizures continue to damage brain cells. Since such cells cannot be repaired or replaced. Frequent and uncontrolled epilepsy may lead to brain damage, which may lead in turn to mental retardation or mental illness. Untreated epilepsy is therefore likely to lead (in some cases especially in children) to mental dysfunction and illness
It is therefore true that the two conditions may co-exist independently in one individual.
21. How can one recognize an epileptic attack?
Some people may get a warning sign before an attack while others don’t. However epilepsy can be recognized by the following signs;
- A sudden attack where the individual falls heavily on the ground.
- The person becomes stiff shortly after; there are violent rhythmic jerks of the limbs.
- During such an attack the person may bite the tongue or lips. Others may pass urine or feaces.
- The person may then go into deep sleep that may last a few minutes or some hours.
- The person will wake up with body pains bruises and headaches.
- All the symptoms will take place when the person has complete loss of memory of events of the attack.
- The person will usually get a similar attack when it happens again.
- The absence seizure is characterized by repeated blank stares into space, then dropping objects or discontinuing activity previously being done.
- Complex Partial Seizures present with abnormal movements, behavior or abnormal mental activity. There is usually a warning sign of a strange feeling rising up from the stomach, or of an unpleasant smell, noises or sound, visions of people or animals, a sensation of crawling insects on the skin, strong taste or abnormal mental activity.
From the above it is very evident that there are many types of epilepsy with many types of seizures and that individual persons with epilepsy may present with symptoms that vary from those of others. If the frequency of the seizures is spread over a long time like six months or a year, the individual and other family members may get confused and worried because it will be hard to determine what affects this person.
Most parents and guardians I have met only associate epilepsy with falling, passing of urine and faeces. If a child has another type of epilepsy with for example absence seizures (petit mal), parents usually find it difficult to accept treatment for epilepsy. They may even conclude that the diagnosis given by the health workers is not accurate. In the meantime they move from one hospital to another and from one healer to another paying for expensive tests like x-rays and brain scans that may not be conclusive. In the meantime, valuable time is lost and the child’s condition is worsening and a lot of danger has been done to the child’s brains. It is therefore important for parents / guardians to cooperate with health workers in such situations. Health workers also need to exhaustively discuss these symptoms with parents so as to provide a clear understanding of epilepsy affecting the child. If parents really want to be sure their child has absence seizures, and can afford it, they will have to pay for investigation with a machine that can measure the brain electricity (an electroencephalogram). However, clinicians can make reasonable accurate diagnosis of absence seizures when they are there when the child gets one.
22. Can epilepsy be treated effectively by drugs?
Most people ask whether epilepsy can be cured. This is a very difficult question because in most Ugandan local dialects the word ‘cure’ is translated the same as to “be well”. However, it is known that out of the 10 people suffering from epilepsy, 7 will be controlled 2 will have the seizures reduced in frequency and severity, while 1 will be difficult to control, Dekker in her book, Epilepsy, “A manual for medical and clinical officers in Kenya” 1998 attests that a study carried out in 20,000 clients “complete control was found out in 6 0 %, seizures were reduced in frequency and severity in 25 %” page 73. All these people were leading essentially, a normal life.
Among people who are members of the Epilepsy Support Association, a good number of them who are willing to share their experiences, can tell how they have been controlled on drugs for periods ranging from one year to twelve years. The effectiveness of drugs in controlling seizures however varies from individual to another and from drug to another. Such oral testimonies have been witnessed in all our branches. Members of the association have also appreciated the fact that although some of their relatives may still experience some seizures, the control achieved when they started drug therapy, allowed family members and the individual to engage in productive activities like agriculture, petty trade and education.
23. How can one differentiate fainting and epilepsy?
This is a very common question that comes up especially when carrying out sensitization and awareness arising among youth and students. Fainting normally happens when there is reduced flow of blood to the brain. This may be brought about by a physical exercise or a physical situation that may precipitate emotion, or a sudden sharp pain. Fainting occurs gradually, the person normally doesn’t loose continence, rapidly regains consciousness (slumping from an upright to a prone position, allowing the blood to flow to the brain again) and is able to recount eventshappening during the seizures, like buzzing in the ears or seeing a star-studded haze before his eyes,.
This clearly differentiates fainting from epilepsy because epilepsy has a sudden onset, often affects consciousness and affects a person who may not have any physical precipitating factor like exhaustion.
24. What is the difference between epilepsy and childhood convulsions?
Child hood convulsions also referred to as febrile convulsions occur to children below 5 years. In Uganda, many parents associate this condition to epilepsy. And indeed the seizure itself can not be distinguished from an epileptic seizure. However, febrile convulsions are associated with fever, if there is no quickly rising fever, there will be no seizure, .. Fever may also lead to epilepsy if the fever is so intense that it damages the brain. Febrile convulsions last longer than an epileptic attack and on touch, the child has a raised temperature.
The explanation is that high temperature affects the brain and creates the conditions that lead to seizures. Febrile convulsions can therefore be easily controlled by reducing body temperature of the child by tepid-sponging as a first aid measure. This should be done before rushing the child to the hospital. Febrile convulsions will normally stop when the child recovers from the fever. To help control the temperature a dose of paracetamol can be given to the child.
25. Is epilepsy contagious/infectious?
The gravest stigma suffered by people with epilepsy is caused by the fact that most people think that epilepsy is contagious. Relatives of children with epilepsy therefore tell other children not to play and interact with PWE so as to avoid contracting this disease. Very many people will not give First Aid to PWE because they fear to get this condition when they touch the urine or faeces of the PWE. Two examples can however help to explain that epilepsy is not contagious.
i. A mother whose child has epilepsy will never run away to desert her child in the event of a seizure, she will breast feed the child, sleep with the child and clean the child when ever it gets a seizure. Nevertheless the mother will not get epilepsy from her child.
ii. Another example is of a couple that may have lived together for a long time. Although one of them may have epilepsy the other doesn’t develop it despite the fact that they continue to share many utensils, beddings etc.
It is only when people have understood that epilepsy is not contagious that they can be willing to offer First Aid and help to PWE. Children in school and within the family also need to know this so as to grow up interacting and playing with their colleagues who have epilepsy.
Where does the idea that epilepsy is contagious come from? It is likely that this is the confusion between the cause for epilepsy, which may be an infectious disease, like tuberculosis, HIV/Aids and so on.
In an earlier explanation, it was mentioned that the part of the body that is affected in a person with epilepsy is the brain. If enough sensitization has been made, people can therefore clearly see that one person’s brain cannot be connected to another so as to cause an infection.
26. What can you say has been the greatest achievements of the Epilepsy Support Association since Its Inception?
Epilepsy Support Association of Uganda started with a small group of PWE who met regularly in Mbarara University Teaching Hospital. These were about 40 in 1998. The association has registered the following successes ever since.
a. We have registered more than 2000 fully paid up members of the association as of September 2002.
b. We have established a drug bank through which more than four thousand people with epilepsy access regular cheap medication every month at our different branches.
c. The association has run a vigorous media campaign to educate the population about epilepsy.
d. From the original small group of epilepsy patients, the association has spread to 10 districts of Uganda.
e. Through advocacy and networking, the association has established a fully equipped secretariat in Kampala and it is currently working closely with other NGOs in the disability movement.
f. After a rigorous and sometimes frustrating exercise the association was registered and recognized as an NGO by the ministry of internal affairs, NGO registration board
g. In order to improve the economic conditions of it’s members, the association trained members from Bushenyi and Mbarara Branches in project management and thereafter supported these branches with a revolving loan scheme worth two million shillings.
h. The association has participated in three international epilepsy conferences and has established links with sister associations in Kenya, Zimbabwe and South Africa. Due to such participation and the active role the coordinator has played, the association has nominated him as one of the five members of the first African commission on epilepsy of the International Bureau for Epilepsy.
i. The Epilepsy Support association Of Uganda has affiliated to the international Bureau for Epilepsy. (IBE)
27. How can the association help very poor people who may not be able to pay for their medication through the drug bank initiative?
The issue of drugs is very crucial to us, as an association. People with epilepsy need regular and cheap drugs and they must be able to afford these drugs. The arrangement of a ‘drug bank’ is an emergency measure. Our members are encouraged to visit the public health units where they can get free drugs. The availability of such drugs at public health facilities is however very erratic. It has been a major pre-occupation of the association to lobby health, unit managers to always include epilepsy drugs in their requisitions.
Through the Ministry Of Health, Mental Health Division, requests have been made to the District Directors of Health services, to increase the supply of ant-convulsants in public health units. This has been successful in some districts and less successful in others. It is hoped that such drugs are available at public health units, and then very poor PWE can be able to access them.
The association has also been engaged in sensitizing PWE to improve their income through economic activities that are not interfered with even if the PWE still has seizures. PWE are encouraged to make crafts, keep poultry, grow fruits, rare goats in addition to other projects out of which they can get money. To buy drugs from private pharmacies when public health units do not have such drugs for those who may be unable to work by themselves (the very ill) the association works with their guardians and the relatives to see that they can be able to get drugs.
28. Is there any possibility of a newborn baby to get epilepsy from the mother at birth if the mother was to get a seizure during birth?
This is a very difficult question. The event of a mother getting a seizure during the process of labor could be dangerous to the un-born baby and the gynaecologist would be in a better situation to explain this. However, the reason why the child who is being born is likely to get epilepsy is if the birth process causes damage to the child’s brain. The conditions during childbirth itself are such that it is unlikely that the mother will get a seizure during delivery. However, it may occur immediately after and in that case attention may be diverted from the newborn who can suffer from that. The mere interaction of the child and the body fluids of the mother, be it blood, mucus, cannot cause epilepsy in the child. This would be like saying that the body fluids of the mother will infect the child. This is not likely to happen.
29. Since it is not advisable to put anything between the teeth of the person having a seizure, what should one do to stop such a person from biting his/her tongue?
It is true that it is not advisable to put anything between the teeth of a person having an attack of epilepsy. The main reason is to avoid hurting his /her gum or breaking a tooth. There is also a possibility that as one struggles to open the teeth, a person having a seizure could injure the Fast Aider. On the other hand the bitten lip or tongue of the PWE is apt to heal without much ado.
One parent who was faced with such a dilemma recounted his experience to participants attending a volunteer’s workshop in Mbarara district in August 2002. This participant showed the other participants his deformed finger, which had been bitten by his daughter during the process of opening her teeth during a seizure. Some people have lost their fingers during such invents.
30. What are the effects of epilepsy on pregnancy?
Very many ladies living with epilepsy have a lot of fear to get pregnant and rightly so. Due to hormonal changes in the body, there may arise a need to increase the dosage of medication an individual takes. This is no problem when the exact amount of the drug in the blood can be measured, but the method to do so is expensive and not everywhere available. This makes prescription of the right dose more difficult.Also there is always a risk that a child is not born perfect but has some malformations. In general this is the case with 2 to 3 of each hundred children born. However, of hundred mothers who are taking medication like anticonvulsants there may be 6 to 9 of their children who are affected.
Some times clinicians find themselves at cross roads. Where as increased dosage may hurt the unborn child, advising the pregnant woman to be off drugs completely may result into seizures. This is very dangerous to both the mother and her unborn baby.
It is however advisable that mothers wishing to conceive must share such information with their doctors. Whereas it is a natural right to bear children, care must be taken to avoid complicating one’s life with epilepsy. It is also important that pregnant mothers tell their gynaenacologists that they live with epilepsy.
Sometimes pregnancy may cause high blood pressure and seizures. These seizures are not caused by epilepsy but are a side-effect of pregnancy. The condition is called Eclampsia and the seizure is stopped with magnesium sulfate
31. Is there any relationship between HIV and epilepsy?
Yes. The human immuno-deficiency virus (HIV) is known to reduce all immunity to diseases. Among the infections that a persons with HIV may get are several that can damage the brain and thus first cause seizures and later (if the person survives long enough) also epilepsy. Therefore, some persons living with HIV/AIDS are known to develop epilepsy and in other cases mental illness. Such people should be taken for medical attention and their seizures will be managed as they get treatment for HIV/AIDS.
32. What is the likelihood that a seizure during pregnancy may result in the unborn child developing epilepsy?
It is highly unlikely that an unborn child will get epilepsy because it’s mother got a seizure during her pregnancy. This however doesn’t rule out the likelihood that the mother may pass on epilepsy to her off springs due to heredity. It is very likely that frequent seizures during pregnancy may result in stillbirths, and abortion.
33. What is the difference between epilepsy and schizophrenia?
Epilepsy has been previously defined as a condition that affects a person, briefly altering body functions or his/her consciousness this may recur spontaneously with intervals that may vary from months to weeks, days or exceptionally hours. During the interval there is nothing wrong with the PWE. Schizophrenia on the other hand is a mental disorder that affects a person’s reasoning and interpretation of events occurring around. Schizophrenia develops slowly and manifests itself among youth and older people.
Schizophrenia leads to progressive deterioration of the personality, withdrawal from reality. A person suffering from Schizophrenia will normally have contradicting and confusing behavior and attitudes. They may initially appear very argumentative or in some cases they may even be very withdrawn and refusing to interact or talk with other people.
C. HEREDITY
34. What is the likelihood that a person with epilepsy will pass it on to his off springs?
Although epilepsy has a heredity component, it has been found to be hereditary in the sense that a parent with epilepsy will get a child with epilepsy in only a very few cases. Therefore the risk of having a child with epilepsy is low. If both parents have epilepsy out of a hundred of their children at most 8 may also have epilepsy. There is usually no medical reason why people with epilepsy should not marry and get children.
Due to the social stigma attached to the condition, very many people with epilepsy will experience difficulties in finding partners for marriage. There is a tendency for two people living with epilepsy who have interacted with each other to get married. This question has persistently come up during training for persons with epilepsy.
It is, however, not medically advisable for people living with epilepsy to marry each other, this would reinforce the genes in their off springs Heredity of epilepsy should not be confused with hereditary diseases that may cause epilepsy. For example in certain families there is a tendency to get small tumors in the brain as a result of which epilepsy may develop.
35. Although you mentioned that epilepsy is not infectious, I have known a family where four children have epilepsy. Is there a possibility that they could have infected each other?
This is a very pathetic situation, which is also difficult to explain. There are many cases where more than one member of a family has epilepsy.. Rarely this is due to the family having a strong hereditary factor. More likely is the presence of an infectious disease that has affected several members of the family and in the long run is the cause that they got epilepsy. In the western district of Masindi, where there is a prevalence of Onchociarsis (river blindness), many such cases have been found. A study being carried out by the ministry of health has not yet produced conclusive results but their seems to be a likelihood of river blindness causing epilepsy. In countries where tape-worms are prevalent these will often be responsible for epilepsy. Also tuberculosis may invade the brain and leave the patient with epilepsy, sometimes when the tuberculosis itself has been cured but its scars have changed the conditions of the brain to allow the occurrence of epilepsy.
D. COMMON FALSE BELIEFS ABOUT EPILEPSY
36. That epilepsy can only be treated by herbalists and traditional healers.
It is true that most medicines are extracted from herbs. However, there is no known herbal concoction known in Uganda that is known to control epilepsy. Some few herbalists may succeed to stop seizures for a few months but will not control it for long. This can only be explained by the fact that herbalists have no standardized dosage.
Testimonies from persons living with epilepsy that have been shared in the support groups show that healers and herbalists normally subject their clients to such tortuous ordeals that many of them never want to go back. Their charges are so high and even they may demand their payments in kind i.e. by asking for animals, crops and a lot of cash.
Experience has shown that no herbalist can be able to identify a client whom he has treated effectively. Many herbalists have also been found to discourage their clients from taking modern drugs. Such practices only help to worsen the situation of the patient.
Whereas it is difficult to stop Ugandans to visit herbalists and healers, efforts should be made to encourage these people to continue taking their medication. The unfortunate part about it all is that people will normally waste their useful resources at the herbalists and not improve and by the time they come to the hospital, they are so poor as not to be able to afford any prescribed drugs
37. That epilepsy is infectious and that one should not touch a person having a seizure or even be near that person.
This is the widely spread false belief about epilepsy. Behind this false belief lies the social stigma that dehumanizes persons with epilepsy. The truth about epilepsy is that it is not contagious. In many societies people with epilepsy suffer a lot from seizures because those around them do the wrong things due to lack of information. Whereas there is little one can do to stop a seizure once it has started, people with epilepsy need a lot of protection to stop them from further damage.
What one needs to do is to protect the head to prevent it from hitting hard surfaces. It is not advisable to restrain the limbs and a person experiencing a seizure should not be given anything to drink.
If epilepsy was infectious, then health workers who interact with PWE on daily basis, would have got epilepsy themselves. Parents of children with epilepsy would also get it. Epilepsy affects one’s brain, which is not connected to another person’s brain.
Some of the common false beliefs include;
i) That when you touch a person during a seizure you get epilepsy.
ii) That you should not share utensils and beddings with a person with epilepsy.
iii) That when you touch a person’s urine or jump over it or smell the bad air the person passes, then you get epilepsy.
All these are false. It is vital to help persons with epilepsy immediately they get an attack. Delay to offer assistance to PWE may lead to injury resulting in physical disability. Some people have lost their lives when they fell in fire or on the road and received no help.
38. It is said that when you slap a person with epilepsy who is having an attack, the seizure will stop and the person will gain consciousness.
It is true that people loose consciousness when they get a generalized tonic-clonic seizure (Grand mal fit) or a complex partial seizure. The loss of consciousness is brought about by the fact that the flow of electricity within the body is temporarily disturbed in the brain. It is therefore not advisable to slap a person with epilepsy during a fit. This may create more injury. After all the loss of consciousness lasts just a short while. There may be a fear that the loss of consciousness may lead to death. But guardians need to avoid mistreating persons with epilepsy [refer to question on First aid].
If someone tells you “I know a person with epilepsy and when I slap her/him he/she comes around” this person probably is not suffering from epilepsy but a look-alike emotional condition (formerly called hysteria, nowadays psychogenic pseudo-epileptic seizures)
39. Is epilepsy a condition suffered by the poor and uneducated?
This is not correct. There are so many learned persons who have epilepsy. Rich people also suffer from epilepsy. If you refer back to the causes of epilepsy, you will realize that any person can get an accident for example and later get epilepsy. True is that poor people often cannot afford good perinatal care or other facilities, like protection from parasites or other infectious diseases that may harm the brain.
However, the question should probably be changed the other way round. That epilepsy may lead to poverty and loss of education opportunities. It leads to poverty due to heavy expenditure on drugs and treatment. Very many people with epilepsy are limited in the pursuit of their education simply because their parents get discouraged and put them out of school. Or the school sends them away misbelieving epilepsy to be contagious. On the other hand, however while a person with epilepsy may be performing well at school, there may raise a fear for one to pursue a particular career due to the strain it may put on his life. Some careers involve working under conditions where speed is more important than accuracy or where day- and nightshifts, or traveling are part of the job, which may not favor PWE.
40. Is it true that any person who has got burns resulting from an epileptic seizure cannot be treated and controlled?
A clear distinction to be made between getting a seizure and being burnt. There are some persons with epilepsy who get seizures while cooking or happening to be near a fire and get burnt. This is an accident just like any other person can get an accident and get burnt. In the case of persons with epilepsy, the burns or sores are on the surface of the body and are not connected to the nervous system. These burns are often more serious than needed because bystanders mistakenly may believe that a person who has a seizure may be contagious and therefore they are afraid to touch the person and pull him out of the fire.
So it is not true that persons who have developed scars resulting from a fire cannot be treated and controlled. This is just another of the stigma’s attached to epilepsy which must be fought. All people with epilepsy, of whatever age and race, should seek medical attention from the nearest health units. The success of the treatment that they are taking will depend on many factors like the gravity of their problems, compliance of their medication, type of medicine they are taking and other more complicated issues that are not related to our discussions here.
E. SCHOOLING AND EDUCATION
41. My child’s seizures have been controlled. Will he cope with other children if I send him to an open school?
We have already seen that epilepsy can be easily controlled especially if treatment is started early enough. It is also well known that children have a higher possibility of recovering from epilepsy. When detected and managed early epilepsy doesn’t affect the mental capacity of an individual. So children whose epilepsy is controlled should be able to perform well as other children in an open school. However, if the family or the school have old-fashioned ideas about epilepsy, believing that the child will not be able to perform satisfactory, this may discourage the child. The idea that the child cannot cope becomes a self-fulfilling prophecy as the reaction of the child will be: “Why should I put and effort into learning when everyone says I shall fail!”
It is very advisable to educate children with epilepsy to prepare them for their own future. In Uganda, just like any other countries in the developing word, education is only licensed to better future. Therefore children with epilepsy and those with other physical and mental disabilities should be sent to school. Even when the seizures are not controlled, parents must encourage such children to stay at school and support them as much as possible.
42. How can teachers help pupils/students with epilepsy?
In Uganda, teachers play a very important role in the communities they live. They are ‘natural’ community leaders. If teachers have enough knowledge about epilepsy and adopt a positive altitude towards pupils with epilepsy, they will encourage such pupils to stay in school. In the communities, parents will normally consult a lot with teachers on issues related to the upbringing of the children. Teachers can therefore work as community counselors to help parents and pupils who have epilepsy.
Through out the year, teachers spend more time with their student than parents. They become second parents. It is a common practice to find that senior students always tease junior ones. Teachers can be very helpful to enable all their students to understand what epilepsy is and to encourage students to help and not pester a fellow-student when she or he gets attacks.
In some cases school administrators have been reported to refuse to have students with epilepsy in their schools because these teachers don’t have enough information on epilepsy. it is now government policy in Uganda to integrate students with disability into mainstream schools. This enables them to adjust to the challenge of daily living while other pupils also appreciate what it means to live as a disabled person. It has been found too expensive to provide separate schools for disabled children and some people have criticized a separate school system as discriminating against people with disabilities.
43. How can the community where a person with epilepsy lives help him to feel more secure and live with out shame?
Our disabled friends here in Uganda have flamed a new term, “ Temporarily able bodied” (TAB) to refer to people who call themselves normal this alone can show us that any of us can become disabled. What we need to make people understand is that people with epilepsy never made a choice to have that condition. The community needs to be given enough information about epilepsy so as to dispel all untrue fears attached to the condition.
The community provides the most secure environment where a person shares housing, company and protection, among his relatives, parents, neighbors and friends. In Uganda, a person may reach the age of 14 without ever leaving his or her community. A person will normally feel secure if people around him or her understand what affects his life and when they are always willing to come in with the needed help.
Community members therefore need to know what First Aid they can give a person who is having a seizure. And they should know that they need to show love, care and protect such people from abuse and neglect. The most basic community is the family homestead. If family members treat their kin with love and respect, other community members are likely to follow suite. Such people will feel more at home if community members always involve them in social functions with in the community i.e. church functions, meetings etc.
F. WORK/ EMPLOYMENT
44. I am an industrialist and my company runs heavy machines and vehicles. One of my employers has been diagnosed with epilepsy will he cope with the nature of work or should I terminate his employment?
Employment is a very important element of our lives because we all need to work in order to live. If an employee has developed seizures, it is not advisable for such a person to run heavy machinery or drive vehicle until he has been free of seizures for over a year and it is guaranteed that he can continue getting medicine as long as needed. In an industry or factory an employee who still has seizures should be offered work in a section away from dangerous machines. (Some machines are constructed in such a way that a person cannot get hurt when he has seizures while at work. Another factor is that the interruption caused by a seizure should not put a whole production line at a stand still.) People who still have seizures can do clerical or administrative work. It is also important to ensure that such an individual is on medication and that close workmates of this person know about this condition, so that they can be able to help him when need arises.
45. On the other hand, should people with epilepsy reveal to their prospective employers that they have epilepsy?
This is a very difficult question and in most cases, it could be up to the individual to decide. For some jobs you would immediately loose your job if it is found out that you live with epilepsy, yet on the other hand you would not be hired if you told your prospective employer that you live with epilepsy. However, a PWE could also be assigned duties that he would easily avoid if his employer knew about this condition and thus his employment would be much more satisfactory for the employer and for himself.
46. Should PWE pay Graduated tax?
This question comes up very frequently in our meetings.. Many PWE even request doctors to write medical letters addressed to local authorities and administrators. If persons with epilepsy were to be exempted from paying local government taxes, also other people would find reasons for exemption and then each of us would care for oneself and we would not have roads, hospitals and schools.
The community will normally not respect us if we continuously become dependant on it. It is true that some people may have very bad seizures so that they cannot do a lot of productive work. I would still encourage PWE to contribute to Local government revenue but only request to pay low rates because they are handicapped by epilepsy. Normally chiefs and assessors will appreciate such a situation when people are willing to contribute. Remember your graduated tax ticket acts as an identity card in a situation where people are not gainfully employed in the formal sector. By not having this document, an individual will be limited in his movements fearing to be suspected or arrested. This in turn may limit the opportunity for such an individual to earn a living outside one’s household.
G. SPORTS
47. Which sport would be dangerous to a child with epilepsy?
We have previously seen that children with epilepsy should interact with age-mates both at schools and in the community. They should be encouraged to participate in sports and games but care should be taken to avoid very exhausting exercises like running, weightlifting. Children with epilepsy should always be advised not to play for long periods, which may lead them to sweat, a lot thereby loosing a lot of salt from the body. Also when the sugar level in the body falls greatly, either due to exhaustion or hunger, people with epilepsy are more likely to get an attack.
People with epilepsy who in the past year still had seizures should also avoid swimming alone because there is a likelihood that they may get a seizure while in the pool. As for cycling, such people also need to ride in company of others so that in the event of an attack, they can be helped. It is not advisable for people with epilepsy to drive if their epilepsy has not been fully controlled for at least three years. Children with epilepsy should also be discouraged from climbing trees to avoid a danger where a child can get a seizure while up in the tree. Other wise children should be allowed relative liberty for example it is all right to participate in football.
48. What are some of the trigger factors that may lead to a seizure?
In question 8, we looked at some warning signs for an attack of epilepsy but now let us focus on how a PWE can be able to avoid placing himself in a situation that may precipitate a seizure attack. It has been shown that watching flickering from a television, or walking by the riverside or pond of water when the sun is shinning provokes seizures in one out of twenty PWE. Some PWE when, receiving very exiting news or staying in an environment that can make one very nervous, may get a seizure when their epilepsy is not sufficiently controled.
Such situations should therefore be avoided once the relationship between the situation that can provoke a seizure in a particular PWE has become clear.
H. MARRIAGE / FAMILY LIFE
49. I have been married for a decade and I developed epilepsy after my third pregnancy. I have since received treatment and my epilepsy is controlled. However, my husband is threatening me with a divorce. What would you advise me to do?
Living with epilepsy is a big burden but living with a PWE also requires a lot of understanding and patience. It is true that very many people who live with epilepsy have failed to get married or lost their marriages. This is also because of the stigma attached to the condition. For people to accept epilepsy, they need to have enough information about the condition.
The best alternative available is to request your husband to accompany you to a clinic where you receive your medication so that you could receive counseling from a medical officer. Such officer would be able to address some of your husband’s fears especially if he believes epilepsy is contagious or has other ill-founded ideas. Of course also the PWE may misjudge the situation and put unrealistic demands on the spouse, so both should be open to counseling. Only when you are both well-informed you can judge what the future holds for both of you
If the visit to professional counselors is not sufficient, then you probably need to consult a pastor or elder in the family. What needs to be put clearly to your husband is the fact that he could get a similar condition that you have. He should therefore need to put himself in your shoes. If he became seriously ill or got involved in an accident that handicapped him, how would he feel if you decided to leave him? All these and other issues need to be discussed and a way forward planned. There is a very big possibility that your husband could be having a fear that he dares not tell you and that needs to be addressed through counseling.
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