Epilepsy: Complementary and Alternative Treatments

Sally Baxendale

• Publisher: SPCK
• Year: 2012
• ISBN:
  9781847092304
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Epilepsy, or seizure disorder, is widespread, affecting more than 350, 000 in the UK, and an estimated three million approximately in the US. While anti-epileptic drugs have a major role preventing seizure activity, they may not be totally effective in achieving control, and there is a strong burgeoning interest in lifestyle measures and complementary therapies which may help. This book is intended to be a trusted source to help people with epilepsy make sense of the treatment choices, given that epilepsy is not a single condition and some treatments may work for some but not other forms of the condition. Each chapter includes information about the treatment, evidence, whether it will work for your type of epilepsy, and practical considerations.

1

Introduction

What is epilepsy?

Everything we do, from walking down the road to completing the most complex puzzle, requires our brain cells to communicate effectively with each other. When we are born, many of the connections between these cells have yet to be made. As babies learn to coordinate their bodies, they gain control over their actions. The changes in the brain that happen to allow this control are immense, with billions of brain cells establishing rapid connections with each other. These connections do not just enable us to physically control our bodies, they are essential for learning and remembering things too. Our brain cells need to communicate with each other in a rapid, effective and ordered way, to enable us to carry out even the simplest task. With over 100 billion brain cells involved, the human brain is one of the most complex systems on the planet.

Given this complexity, it is not surprising that sometimes the system breaks down. When the cells in parts of the brain begin to communicate with each other in a disordered way, a seizure can occur. The nature of the seizure will depend on which parts and how much of the brain is involved. This is why seizures can look and feel so dissimilar for different people. If only small parts of the brain begin to communicate with each other in a disordered way, the person may simply experience an odd smell or a sensation of tummy butterflies. What you feel depends entirely on which part of the brain is not working correctly. A feeling of déjà vu (intense familiarity, like it has all happened before) is common for people if parts of the memory system within the brain are involved in the disturbance. Others may experience intense feelings of anxiety or even terror that appear out of the blue, if the ‘fear’ centres within the brain are affected. Disordered communications between brain cells can also cause physical effects, ranging from an uncontrollable urge to giggle, to nausea, sometimes even vomiting. These small seizures have been given various labels over the years, including auras and simple partial seizures. The current terminology recommended by the International League Against Epilepsy (ILAE) for these attacks is ‘focal seizures without impairment of consciousness or awareness’.

If larger areas of the brain are involved in a seizure, a person may lose awareness. Losing awareness is different to losing consciousness. A person who is unconscious is inert and immobile. People who lose awareness during a seizure may still walk around, gesture and even talk; nevertheless, they are not completely aware of their surroundings. They may respond automatically to some of the things or people they encounter during the seizure. These behaviours might include pouring water from a jug (with no cup present) or picking up a telephone when it has not rung. Fiddling with clothes and even completely undressing can occur during these kinds of seizures. These types of seizures can be some of the most dangerous as some people cannot perceive danger or respond to pain while the brain is behaving in this way.

All epilepsy doctors have encountered people who have sustained very severe, often life-threatening injuries during these seizures.

Karen

Karen, a young mother, was cooking chips at teatime for her young children when she experienced a focal seizure. She placed her right hand into the chip pan full of boiling oil during the seizure and left it there for over a minute. Most of the flesh had burnt off by the time the seizure ended.

John

John, who has had poorly controlled epilepsy since childhood, has been hit by a bus, not once – but twice! On both occasions, on his way to hospital appointments, he walked out into traffic, oblivious to the oncoming vehicles.

These injuries serve as sobering reminders of the dangers associated with epilepsy. Even something as simple as making a cup of tea can result in severe injuries, if an individual experiences one of these seizures during the task. As with simple partial seizures and auras these seizures have been classified under different names in the past including ‘petit mal’ or ‘complex partial seizures’. In this book we will call these seizures ‘focal seizures with impaired awareness’, following the most recent recommendations of the ILAE.

If very large areas of the brain are involved in a seizure it is classified as a ‘generalized seizure’. In these attacks, the person experiencing the seizure will drop to the floor. In a ‘drop attack’, recovery is almost immediate. In a generalized ‘tonic-clonic seizure’, the muscles of the body contract rhythmically, leading to a shaking appearance. This is not just evident in the arms and legs, but in the facial muscles too. People can often be incontinent during these seizures. Although ‘foaming at the mouth’ is frequently associated with these types of attack in the public imagination, this is in fact incorrect. People may produce excessive saliva during the attack, but the ‘foaming’ seen in artistic representations of seizures firmly belongs in the realm of the supernatural.

Fortunately, in the vast majority of seizures, the brain recognizes that regular communications have been disrupted and it strives to re-establish normality. As a result most seizures are self-limiting, that is they run their own course without any outside intervention. It is very rare that seizures of any kind last more than five minutes. Sometimes, people can experience a run of seizures, one after another with very little recovery time in between, and these can look to the observer like one very long seizure. More rarely, the brain’s own seizure shut-down mechanism can malfunction and a seizure can continue without stopping. This is called ‘status epilepticus’ and is the most serious kind of seizure. Someone in status epilepticus requires prompt medical attention and if left untreated it can result in brain damage or even death.

Many different reasons

There are many different reasons why people have seizures. For some, seizures are the result of brain damage that occurs following an accidental head injury. Brain infections such as meningitis and encephalitis can also lead to seizures. Tumours which grow in the brain can also disrupt the communication pathways within the brain and result in epilepsy. For others, something may have happened very early on when they were developing in the womb to cause their brains to develop in an abnormal way. For most of these people, magnetic resonance imaging (MRI) scans can reveal the areas of damage or abnormal development that may be responsible for setting off seizure activity within the brain. Metabolic disorders and some genetic conditions can also be associated with epilepsy. However, for a dwindling percentage of people, the doctors can find no obvious reason why the brain malfunctions in this way. Since 2010, these people are classified by the ILAE as having ‘epilepsy of unknown cause’. These conditions used to be called ‘idiopathic’ or ‘cryptogenic’ epilepsies (cryptogenic means hidden). All that these terms really mean is that medical science cannot yet explain why these people have seizures. People who would have been given a diagnosis of cryptogenic epilepsy ten years ago may have areas of damage or abnormality within their brains that can now be seen clearly on the latest scans. New genetic conditions associated with epilepsy are also being discovered every year. Hidden brain abnormalities in people who are given a diagnosis of epilepsy of unknown cause today may become apparent in the near future as medical scans and technologies advance.

Seizure thresholds are based on the idea of a dam with water building up behind it. When the water gets too high behind the dam, it is breeched and the water flows over the top. This breech represents a seizure. Just as there are many factors that can contribute to the high water levels behind a dam, there are also many factors that can lead to a theoretical ‘breech’ in brain function leading to a seizure. Everyone has a seizure threshold. However, most people are never in the situation where their threshold is exceeded and so they never have a seizure. But for people with recurrent seizures, their natural threshold seems to be set at a lower level than other people. A combination of factors appears to lead to regular breechings of this threshold, resulting in seizures.

Because there are many different reasons why people have seizures, epilepsy can affect people of all ages. As a general rule of thumb, epilepsy is more common in children than in adults. The prevalence of the condition rises again in the elderly population, where seizures may be the result of other illnesses that affect brain function, including strokes and cerebral vascular disease.

Conventional medical treatments

Anti-epileptic drugs are an effective way of controlling seizures for the majority of people with epilepsy. Some people find that a low dose of a single drug works well for them. Their seizures stop and they are able to return to a full life. For instance, this recovery may include a return to car driving a year after their last seizure. For others, it may take a combination of drugs and they may need to take four or five different medications in the morning and again in the evening to completely control their seizures. Unfortunately, the right combination of drugs can have side effects. These can include rashes, weight gain, unwanted facial hair, drowsiness and difficulties in concentration. Living with these side effects can, occasionally, be more problematic than the actual seizures for some people. Getting the balance right between good seizure control and minimal side effects can sometimes take the doctor and person with epilepsy many years of trial and error to achieve. Unfortunately, for approximately 30 per cent of people with epilepsy, no combination of drugs is completely effective and they continue to experience seizures despite taking the maximum dose of many anti-epileptic drugs, morning, noon and night.

Why consider complementary treatments?

People may consider complementary and alternative treatments for epilepsy for many reasons. Some may have reached the end of the road in the medical options available to them. If the drugs do not work, surgery may be possible for a small minority of people, but surgery is not an option for most people with epilepsy. Other people may have a sensitivity to the drugs offered, meaning they cannot tolerate the doses needed to get the best seizure control. Others may instinctively dislike the idea of a lifelong dependence on medication and may wish to get the maximum possible benefit from treatments they perceive to be more gentle, working with natural rhythms of their body. Whatever the motivation, it is clear that increasing numbers of people with epilepsy are now looking beyond just taking pills to help them live with their condition.

The aim of this book

For anyone looking for information on complementary treatments for epilepsy, nowadays the internet is often the first point of call. Unfortunately, much of the information on the web is written by people who have a vested interest in selling their product or approach to you. The glowing testimonials of ‘miracle cures’ on many websites are, at best, anecdotal and, at worst, simply fictitious. It is difficult to know who to trust on the internet. The purpose of this book is to present the objective scientific evidence for and against some of the most popular complementary treatments for epilepsy available today. Hopefully, it will give you some ideas as to what might work for you, and will save you time and money in ruling out the approaches that are unlikely to help.

How to use this book

Chapter 2 presents the criteria against which the complementary treatments presented in this book have been judged and gives some guidance as to how you can evaluate whether a new treatment is really working for you. Some treatments may be effective for some kinds of seizures but not others. Occasionally, some complementary treatments may actually make certain kinds of seizures worse. It is important that you know what kind of seizure you (or the person on whose behalf you are reading this book) experience. We have used the current terminology recommended by the ILAE to describe different seizure types throughout this book, i.e. ‘seizures without impaired awareness’, ‘focal seizures with impaired awareness’, ‘generalized seizures’, and ‘status epilepticus’. However, people with epilepsy often have their own descriptions for their particular seizures, names which are clear and concise and which clearly delineate them from other events and which may date from the era in which they were first diagnosed.

Why you must continue to take your drugs

At the outset, it is important to stress that all of the treatments discussed in this book have been evaluated as ‘add-on’ therapies. That is, they have been used in addition to anti-epileptic drugs. If you are taking anti-epileptic drugs, it is extremely important that you continue to take them. Sudden discontinuation of these medications can have a devastating effect on seizure control and can, on occasion, lead to status epilepticus or even death. Any reduction in anti-epileptic medications should be made very gradually, under close medical supervision. This holds true, even if you think you have discovered a possible ‘miracle cure’.

2

The importance of evidence

Nowadays, new drug treatments have to undergo rigorous tests before they can be offered to people. Doctors not only have to be sure that the treatments they offer will not harm their patient before they can proceed, they also have to have very good reasons to think the treatments they offer will help the person. Once a treatment has been proven to be safe and effective, there are strict controls in place to ensure that the drugs manufactured meet rigorous quality standards. In real life, finding the best treatment for every individual can be a hit-and-miss affair but, nevertheless, these principles guide every treatment offered.

With regards to harm, all medications undergo extensive safety tests before they are allowed to be prescribed. Often they have been taken by healthy people before they are tested in people with the illness they are designed to treat. It is the results of these tests, called clinical trials, that give doctors the reason to think that a new treatment may help their patients. These trials have to be conducted very carefully to ensure that the evidence upon which the doctor is going to base the decision to treat his or her patient is sound.

A fair test

‘Before and after’ measurements are an integral part of a fair test to see if a treatment has worked. However, a truly fair test is a far more complicated affair. A double-blind, randomized, placebo-controlled trial is currently one of the best tests available to see whether a new treatment works. This sounds like complicated medical jargon, but each part of the phrase actually describes a key part of the fair test. A ‘placebo-controlled’ trial means that not everyone in the study gets the new treatment. Usually, half of the participants get the treatment and the other half get a placebo, something that resembles the real treatment but has the important part missing. In trials of new medications, the participants in the placebo half of the study may get a pill that looks like the new medication, but actually just contains starch or sugar. In studies of other kinds of treatment it is ofte...