EPILEPSY - JUST HOW DO YOU TACKLE IT?: Epilepsy is surrounded by a great deal of ignorance. As recently as 1978, two priests in Switzerland were asked to perform an exorcism on a 22-year-old woman whose family thought she was possessed by the Devil. Just nine years ago, it was reported that a British child was told not to play with a classmate who suffered from epilepsy "because she was a witch."
The British charity, Epilepsy and the Young Adult (EYA), says epilepsy affects about one in 200 UK adults. According to Dr Harris L Coulter, the celebrated medical researcher and writer, the number of recorded cases of epilepsy in the US has increased three-fold since 1940 when there were 2.7 cases per 1,000 inhabitants. In 1990, this had become 10 cases per 1,000: "No-one knows whether this is due to the treatment, or the condition itself," he declares.
Anyone can have an epileptic fit, or seizure (the word "epilepsy" comes from the Greek 'epi lambano' meaning 'a taking hold of') which happens when the brain's chemical balance is upset and the nerve cells fire off signals in all directions. It's rather like an electrical storm in your brain and it can take many forms. Idiopathic epilepsy can be caused by a range of circumstances - some genetic, some congenital. Symptomatic epilepsy occurs when a specific part of the brain has been damaged by an injury, infection, or a tumour.
According to Coulter, epilepsy is very much associated with violent behaviour in the modern society: "Violent criminals tend to have a very high incidence of seizure," he says.
His 1975 study of three US jails found that five per cent of prisoners had a history of seizures or epilepsy: "That's about 10 times higher than in the population at large," says Coulter. "Again, there is no accepted theory as to why these incidences of epilepsy have been going up."
A recent study suggests that epilepsy per se may carry a small risk of death (The Lancet 1 October 1994; 344: 918-21). It was observed in 1885 that "the danger to life of patients with epilepsy is not great" (WR Gowers "Epilepsy and other chronic disorders"), an opinion widely held since (JAMA 1954; 156: 1526-7 and S Livingston "Living with epileptic seizures", 1963), although it is now accepted that patients with epilepsy have a higher death rate than the general population, possibly due to increased smoking or alcohol (J Neurol Neurosurg Psychiatry 1993; 56: 149-52) but this is still being debated.
Pneumonia has been noted as a common cause of death in patients with epilepsy since 1910 (Med Record 1910; 77: 58-62), so elderly patients may be susceptible. Suicide has also been reported to be more common with patients with epilepsy (Acta Psychiatr Scand 1987; 76: 339-45). And the well-publicised incidence of epilepsy from computer video games shouldn't be ignored either. It's thought sufferers may be sensitive to the contrast and frequency of patterns being flashed in front of their eyes (The Lancet 17 December 1994; 344: 1710-11).
However, doctors commonly prescribe drugs to control the condition and a lot of people are kept on drugs for a lifetime only because they've had a minor fit during childhood.
It appears the bottom line for most doctors is that until suppressed by drugs seizures will recur and that drug treatment can affect the course of the disease, reducing the risk that early epilepsy will develop into an intractable disorder.
According to a review paper by EH Reynolds, Consultant Neurologist at the Centre of Epilepsy, Maudsley Hospital, London (BMJ 21 January 1995; 310: 176-7), several studies show that the more seizures, the worse the prognosis (Epilepsia 1989; 30: 648), and that patients with single seizures did better, in the medium term, when they got drugs, compared to those who'd been given placebo, or had treatment delayed (Clin Neurol Neurosurg 1992; 94 [Suppl]: S61-3; and Neurology 1993; 432: 478-83).
Anti-convulsants are supposed to work by preventing epileptic fits without affecting the brain. But this is a delicate balancing act. The doctor needs to be highly conversant with the various anti-convulsant drugs, understand how different seizures affect particular patients, regularly monitor the patient to record the seizures and how the drug they've prescribed is behaving inside the patient.
And treatment varies from doctor to doctor. Some feel their patients should take anti-epileptic drugs for the rest of their lives; others feel daily doses can be slowly reduced by steps every few weeks in patients who have remained free from seizures for two years. They may even be taken off drugs altogether.
David Chadwick, Professor of Neurology at the Walton Centre for Neurology and Neurosurgery presents a strong argument against the early use of drugs in the same 21 January edition of the BMJ (177-8) and recommends that treatment should be held off. He argues that epilepsy is an umbrella term which refers to a group of disorders, and not a single, homogenous disease. In some, clear cut, cases of epilepsy, such as benign rolandic epilepsy in children (where seizures affecting the face, throat and arm occur during sleep), there is strong evidence that the seizures stop by themselves by mid-adolescence.
Furthermore, preliminary data suggesting that people are better off getting drugs after early treatment is far from definitive because untreated epileptics are difficult to find.
Studies that are performed suggest that drugs make virtually no difference, although it is recognised social implications associated with the condition shouldn't be underestimated: "This makes it all the more important that reliable data is obtained," says Peter Rubin, Professor of Therapeutics at Nottingham University (BMJ 21 January; 310: 178). "Though the widespread use of anti-convulsants prevents a comprehensive study on the natural cause of epilepsy in all its forms, the effect of treating or not treating the first seizure should be thoroughly investigated," he concludes.
None of the thousand patients participating in the Medical Research Council's anti-convulsant withdrawal study group had a fit in two years (The Lancet, 18 May 1991). The study concluded that the chances of remaining seizure free were directly related to the length of time since the last fit. Those with the poorest reaction to drug withdrawal were patients who'd been taking more than one anti-epileptic drug, or had a history of neonatal seizures.
However, one woman further maintains that the underlying cause of her seizures are anti-convulsants prescribed to control epilepsy in the first place. They also induce a number of side effects, the most common being drowsiness and confusion.
The most widely used anti-convulsants are sodium valproate (Epilim) and carbamazepine (Tegretol), both of which can control (you can't speak of cure) generalised and partial seizures.
Phenytoin (Epanutin, Dilatin) is used for generalised fits but you must have your blood checked regularly since a small increase in dose may create toxins (poisons) in the blood. It can also increase the frequency of the fits and a 1994 study shows epileptic women receiving phenytoin are inherently more likely to bear malformed children (JAMA 21 September 1994; 272: 850-1).
The Physician's Desk Reference says that all epileptic drugs can cause birth defects. Specifically, it says valpoic acid "may produce teratogenic effects in the offspring of human females receiving the drug during pregnancy...Therefore, anti-epileptic drugs should be administered to women of childbearing potential only if they are clearly shown to be essential in the management of their seizures."
The Centers for Disease Control (CDC) estimates the risk of valproic-exposed-women having children with spina bifida to be approximately one to two per cent, a risk similar to that for non-epileptic women who have had children with neural tube defects.
In the past, doctors have blamed the well-documented increase in frequency of reproductive disorders seen in epileptics on the condition itself. However, a Finnish study of 238 women aged between 18 to 45 taking anti-epilepsy drugs for an average of nine years suggests that conditions such as polycystic ovarian disease (which causes ovaria cysts) plus raised levels of testosterone (the male hormone - hyperandrogenism) and menstrual problems may be a result of the treatment, rather than the disease.
Ethosuximide controls "absences (when you look blank and stare, the eyelids twitch, flutter or blink - it's a condition that lasts just for a few seconds), but can make other kinds of epilepsy worse and so is only given in certain circumstances.
Phenobarbitone, a barbiturate, is also sometimes prescribed, but this also carries a host of serious risks which include Parkinsonian effects (involuntary movements), impaired judgement, drowsiness, allergic reactions and depressed breathing.
In recent years, two new drugs have been introduced in the UK, Vigabatrin and Lamotrigine, or Lamictal, which supposedly causes fewer side effects than carmazepine (more commonly prescribed but whose side effects include rashes and sleepiness), although this is currently being debated (The Lancet 20 May 1995; 345: 1300-2) and may result in the clash of two evils.
Wellcome Medical Division, which manufactures Lamotrigine, states in the Datasheet Compendium that: "During clinical trials in over 4,000 patients receiving multiple anti-epileptic therapy, including Lamotrigine, there have been, rarely, deaths following rapidly progressive illnesses with status epilepticus (continuous seizures without recovery of consciousness between attacks), multi-organ dysfunction and Disseminated Intravascular Coagulation or DIC. The contribution of Lamotrigine to these events remains to be established".
However, a case of Stevens-Johnson Syndrome, SJS, has been associated with Lamotrigine as well as three cases of multi-organ failure through its use in recent years (The Lancet 13 August 1994; 344: 481 and 1992; 340: 618).
Liver damage has also been linked with Epilim, particularly in children and those with mental retardation, and although this is rare, these drugs become more dangerous if used together. The 35-year-old, mentally handicapped son of one woman used to take Epilim, Tegretol and folic acid every day, but died after he'd been prescribed a daily 50mg tablet of lamictal.
Two more anti-convulsants are now licensed (Piracetam and Gabapentin). Zonizamide has been licensed in Japan and Felbamate in the the US and another five are in the advanced stages of development: Topiramate, Stiripentol, Ramicimide, Tiagabine and L059.
Current research surrounding epilepsy's various causes has also begun to focus on the link between epilepsy and vaccination.
Recent British government research shows that the DTP (Diptheria Tetanus Pertussis) and MMR (Measles Mumps Rubella) vaccines can increase the risk of seizure five-fold. Even though the American government has been busy reassuring the country that measles vaccine is perfectly safe, its Public Health Laboratory Service Statistics Unit has found that the jab increases seizure risk by five times, and DTP is responsible for a four-fold increase.
Yet the Clinton administration plans to continue vaccinating all children under the age of two, and the British government is funding a 20 million pound measles vaccination campaign.
It appears extraordinary that the British government is not rethinking its action in the light of the US evidence which shows that DTP vaccine caused convulsions in infants less than a year old, usually three days after they'd been given the dose. The Urabe strain of the MMP vaccine took longer to cause convulsions - between 15 and 35 days afterwards.
The US Centers for Disease Control and Prevention in Atlanta also identified 34 major side effects to the jabs, ranging from asthma, blood disorders, infectious diseases, diabetes and neurological disorders (including meningitis, polio and loss of hearing).
Such a revelation is serious enough, but the Centers' evidence is based on the most complete data yet compiled and monitors the progress of 500,000 children, by far the most ever observed by a single piece of research.
The seizure rate was found to be three times the norm for children receiving the DTP shot. The rate rose 2.7 times within four to seven days for children being given the MMR shot and this increased to 3.3 times within eight to 14 days.
The US government is indeed embarrassed such facts have been made public.
A few years ago, an audience of physicians gave a hostile reception to US medical writer Dr Harris L Coulter who suggested in his lecture that an increased incidence of epilepsy, dyslexia, diabetes, autism, and asthma was connected to the decline of comprehensive testing carried out on students leaving high school to go into the army or college. In the US, the number of such tests has been dropping since 1963 and these conditions have been steadily rising since then:
"No-one knows what the causes of any of them are," says Dr Coulter. "I said it seems to be connected to vaccinations through encephilitis (inflammation of the brain) and the audience started laughing, so it just goes to show just how sensitive doctors are. There was whistling, cat calls, much looking at watches, that kind of stuff."
The US medical authorities have been unwilling to contemplate the possibility that vaccinations cause epilepsy because they have a government programme promoting vaccinations with another studying the causes of epilepsy: "One is not going to try the other," continues Coulter.
"But it's as plain as your nose on your face; vaccines cause neurological disabilities. It's just that nobody wants to admit it that's all."
THE LINK BETWEEN VACCINATIONS AND SEIZURES:
Dr Harris L Coulter, a well-known writer on alternative medicine and one of conventional medicine's sternest critics, has authored a number of books, two of which analyse vaccinations. According to Coulter, annual surveys of the US population started around 1940. The incidence of various diseases, particularly epilepsy and seizure disorders, increased at around the time (1945) the US started its mass vaccination programmes: "So you have a reasonable causal factor there," says Coulter.Coulter's book - DPT, A Shot in the Dark, co-authored with Barbara Loe Fisher (first published in 1985 and reprinted several times since), features interviews with 100 families where the parents suspected vaccine damage: "We found a very high incidence of seizure disorders," he says.
Vaccination causes a slight degree of encephalitis in children. Doctors recognise this happens but insist it occurs only once in every 100,000 cases: "In my opinion, it happens about once in five," says Coulter. "When you have encaphalitis, the child may recover completely, but it may not and may suffer some long-term damage."
According to Coulter, it's extremely difficult to ascertain if a vaccine is causing a particular reaction because clinical diagnoses differ. Doctors observe a reaction over a short period, say 12 hours, and consider reactions occurring much later to be unrelated to the vaccine and therefore must be explained away by another cause, such as a genetic weakness, that was destined to happen: "So I had to establish some logical or rational connection between the vaccine on the one hand and what I thought were the consequences of vaccination on the other," says Coulter .
"It's generally recognised by doctors from both sides of the Atlantic that vaccination causes a type of encephalitis. That's a very important point," he says and cites a 1983 British study which supports Coulter's earlier research (The National Childhood Encephalopathy Study - NCES): "This is the best study that has been done on vaccination reactions and it found a connection between the pertussis (whooping cough) vaccine and acute reactions occurring within seven days".
Before this, physicians, especially those in the US, had said that whooping cough vaccine doesn't cause any type of serious acute reaction: "But the British study found that reaction," says Coulter. "It's an important landmark".
Ten years later, a follow-up report was published on the NCES - Immunisation and Acute Neurological Illnesses in Children (BMJ 1993; Vol 307, pp 1171-1176) by David Miller - which concluded that children who suffered an acute reaction from the whooping cough vaccine suffered from a permanent neurological disability later in life.
Encephalitis can be caused by a number of different things. In particular, Coulter discovered there had been an epidemic of encephalitis in the 1920s and 1930s which affected 20 to 30 million people worldwide. It accounted for a couple of million deaths, with an equivalent number of survivors suffering from serious disabilities: "I found out that the types of consequences after an epidemic of encephalitis were identical with what we call today 'minimal brain damage', 'seizure disorders', asthma, allergies, and so on," he says.
TREATMENT THE NATURAL WAY: Because doctors never tell people how to live with epilepsy, the EYA has written a "Guide to Living with Epilepsy" outlining the things you can do to help control the condition and, just as importantly, educate those around you about its effects.
A homeopath will help you plan a healthy diet and lifestyle, as well as prescribing medication, essentially very low dose drugs which will increase the amount of antibodies in your blood and so strengthen the body's natural defences. The aim is to help you to accept your condition, so you'll become calmer and the fits become rarer.
Relaxation techniques could be helpful - a warm bath, controlled and gentle, deep breathing, or relaxing each part of the body in turn can help. Where possible, take a short nap. Some people find aromatherapy - or even the memory of a pleasant smell and the feeling of relaxation, will help make the threat of a fit disappear. But aromatherapists recommend you avoid sweet fennel, camphor, hyssop and sage.
It's hard to prove that certain foods induce fits, but if you find some foods upset you, then it is sensible to avoid them. There is some evidence to show that taking increased amounts of magnesium (found in Epsom Salts) and Vitamin B6 may, in some cases, reduce the frequency of attacks (Ann NY Acad Sc 1969; 166: 7-15, Am J Clin Nutr 1991; 53: 1266-74 and Int Clin Nutr Rev 1988; 8[3]), but concentrate on having normal, well-balanced meals at regular intervals. Children especially should be given large meals as these may make them more vulnerable to seizures (Davidson and Passmore: Human Nutrition and Dietetics; 1986: 471).
A deficiency of copper may also cause seizures (Arch Dis Child 1982; 57[9]: 716-18.
If you must drink, try not to have more than one standard unit of drink in 24 hours - a single whisky, glass of wine, or half pint of beer.
Also try and avoid caffeine which is a stimulant (methylxanthine) and preconvulsant (Psychophar [Berlin] 1981; 72[3]: 269-73)
The commonly-used anti-convulsants - such as Carbamezepine and Phenytoin (but not Valproate) - speed up the absorption of the Pill into the blood-stream and so make it less effective. So you should change to a pill that contains higher amounts of oestrogen, or use other methods of contraception.
Valproate and Phenytoin are also responsible for weight gain, but you musn't stop taking anti-convulsants because you think they're making you fat. Make sure you eat regularly but stick to a calorie-controlled, low fat, low sugar, high fibre diet and take plenty of regular exercise.
Tell your dentist you've got epilepsy, what type of seizures you have and what medication you're on. Some drugs cause gum disorders and resulting infections, so be extra careful about dental hygiene.