For people who have poor seizure control despite trying many different medications over time, there are now other treatment options available.
Surgery for Epilepsy
Epilepsy surgery can offer some a chance to be seizure free or significantly reduce the number of seizures. Only certain types of epilepsy are suitable for this treatment.
Vagus Nerve Stimulation (VNS)
VNS uses a pacemaker-like device to periodically stimulate the left vagus nerve in the neck to reduce the frequency and intensity of seizures.
A specific diet developed for uncontrolled seizures, particularly in children.
Many people are now using alternative or complementary therapies in some way - to improve their health, combat illness and even prolong their life.
Epilepsy today is largely treated with medication. However, these do not cure epilepsy they provide control of seizures only.
Antiepileptic drugs (AED’s) can successfully control up to 70-80% of epileptic seizures. They come in the form of tablets, capsules or syrup.
Most people achieve control with the first medication that is tried, however, some people may need to trial more than one medication before they obtain seizure control.
Your doctor will give you instructions on how and when to take the medication and any possible unwanted effects that may occur.
Take your medication as prescribed. Altering dosage or daily routine may provoke unexpected seizures or side effects.
Read the manufacturer's instructions and information.
When medication is prescribed ask your doctor:
- What other medicines may interfere with your medication.
- What to do if you miss a dose.
- Ensure that you maintain a continuous supply of medication especially when travelling.
- Store all tablets in original containers, clearly labelled and in a cool dry place out of reach of children.
- Avoid alcohol other than moderate social drinking.
Missing tablets may sometimes trigger a seizure. The goal is to keep a constant level of the drug in the bloodstream. If you realise that you have forgotten a dose, take advice from your doctor on what to do.
- Establish a regular routine to help avoid forgetting medication(s).
- Taking medication with meals or using a tablet dosette may help.
- Maintain supplies to avoid running out of medication(s) at the last minute, particularly if away from home.
- If a dose is missed it can generally be taken as soon as you remember.
- Do not double up on doses. It is important not to take the missed dose if it close to the next one.
- Keep a record of doses that have been missed.
All anti-epileptic medications have side effects. Initially expect a few side effects until your body becomes accustomed to it. Many people find a few weeks after starting medication, the side effects tend to lessen or disappear. If they are related to the dose being too high, they can often be resolved with a reduction in dose.
Sometimes a change of medication is necessary if the effects are an allergic reaction to that particular drug, or unacceptable for the individual.
Duration of therapy
Some people may have lifelong therapy, whilst others may be able to discontinue the treatment. This will depend on:
- the type of seizures or epilepsy syndrome,
- tolerance of the drug,
- response to the drug,
- length of time seizure-free.
Social factors such as education, driving and employment also come into consideration.
Stopping the medication
Never stop or alter the dose of a drug without medical advice.
Any withdrawal from antiepileptic medication should be done slowly and under medical supervision. Suddenly stopping these drugs can provoke a seizure or seizures, often more severe than usual.
Monitoring blood levels
If seizures are well controlled, blood tests are seldom necessary. The indications for monitoring blood levels include:
- Use of Phenytoin (Dilantin)
- Poor seizure control
- Use of more than one antiepileptic drug with unwanted side effects
- Epilepsy in the very young, elderly or disabled
- Other blood tests to check liver function and bone marrow are sometimes performed
It is important that epilepsy be managed under the guidance of a doctor. Obtain clear instructions how and when to take the medication and what unwanted effects may occur.
Younger children may have difficulty swallowing tablets. For information click here.
To report any unusual side-effects of your medication(s), click here
For more details on your particular medication, click here.
Surgery for epilepsy
Some people have poor seizure control despite trying a number of medications. There are now other treatment options available to manage epilepsy and seizures.
One of these options is surgery.
Sometimes epilepsy is caused by a small area of abnormal brain tissue. The abnormal tissue may be a result of some form of head injury, brain infection, or abnormal development - which can later turn into scar tissue and become the focus of seizures.
Many people can benefit from surgery - the goal being to stop or significantly reduce seizures without causing any neurological deficits or problems. Surgery is not usually performed unless it is likely the person will obtain a significant benefit.
Surgery may be suitable when:
• There is a focal onset of the seizures
• Seizures are of a particularly dangerous or debilitating type (such as ‘drop attacks’ or status epilepticus)
• Chronic, generalised seizures occur dozens of times a day, making normal life impossible
Epilepsy programmes for surgery are very extensive and comprehensive, involving a number of tests and prolonged monitoring. Sometimes at the end of the work-up, tests may show that surgery is not possible.
A large range of tests are performed to determine what part of the brain the seizures are originating from. The doctor or staff performing them will properly explain these tests. This is an important time to ask questions.
The tests often include:
- Videotelemetry EEG
- MRI scan
- SPECT scans
- PET scan
This assessment determines which regions of the brain are not functioning well, indicating these areas may be related to the seizure focus. Various mental functions are tested including: problem solving; planning and organisation; attention, memory and learning; language; observation and motor abilities; behaviour and personality.
A routine visit from a psychiatrist is common. The program is not easy and is a stressful time. The psychiatrist will evaluate how each individual is coping with their current situation, assess how they will cope with surgery and help move towards a positive outcome.
Once the entire investigation has been accomplished, a team decision is reached with regard to recommendation for surgery.
Depending on these results, there may be a few further tests to follow.
Making the enormous decision to have surgery can be very stressful for the person with epilepsy and others involved. The need to discuss all the issues associated with such a decision is as important as the surgical procedure itself.
We recommend speaking with your doctor about surgery as an option for you. Epilepsy Action can also be of help with information about surgical options.
Do you want to speak to someone who has had surgery? If so, please email or telephone us for details.
For more comprehensive information about surgery, click here
Vagus Nerve Stimulation (VNS)
This is a relatively new treatment with approval for use in epilepsy in 1997 in the United States. It was registered by the Therapeutic Goods Administration in Australia in April 2000.
What is it?
VNS Therapy is a mild electrical stimulation of the vagus nerve that runs through the neck and carries information to the brain. Intermittent stimulation of the vagus nerve in some people with epilepsy reduces the frequency and intensity of seizures. It is used as an additional therapy in reducing the frequency of seizures predominantly in adults and adolescents over 12 years of age with focal seizures that are unable to be controlled with antiepileptic medications.
How does it work?
A pacemaker like generator implanted in the chest and a lead is attached to the vagus nerve, which delivers electrical impulses to this nerve at regular intervals. The device is programmed to deliver a regular stimulus to the vagus nerve. If people get a warning or aura before a seizure begins, a magnet can be used to activate the stimulus, which may prevent or reduce the intensity of the seizure.
What have studies shown?
Studies have demonstrated an approximate long-term decrease in seizure frequency of 40-50%, and a short-term decrease in seizure frequency of 20-30% in people older than 12 years.
"Research has proven that it is a safe and effective way to control seizures"
Are there other benefits?
Many people have reported benefits other than changes in seizure frequency. These benefits include an improvement in alertness, memory, energy levels and mood. It has also allowed many people to reduce the medications they take.
What are the side effects?
The most common side effects include hoarseness, a prickling feeling on the skin, shortness of breath, and increased coughing. These side effects are often mild and diminish over time.
As with any surgery, there is a small risk of infection and bleeding.
For further information on VNS click here
If you would like to know more ask your specialist.
Vagus Nerve Stimulation is not for everyone and you should check with your Doctor about the suitability of this procedure for you.
What is the Ketogenic Diet?
The ketogenic diet, is a specific diet, very high in fats and low in carbohydrates. It makes the body burn fat for energy instead of glucose.
It is a very strict diet, and needs to be closely monitored by a dietician. It takes a strong commitment from the whole family. It is a serious form of treatment that, like other therapies for epilepsy, has side effects that have to be watched for.
Its exact mechanisms are unknown, but more research is being done to learn about the reasons for the diet's positive effect. Studies by a research team at Emory University School of Medicine show that the diet alters genes involved in glucose metabolism in the brain, which in turn helps stabilise the function of neurons exposed to the challenges of epileptic seizures.
How the diet affects the body
Our bodies usually run on energy which we get from glucose in food. Our body can't store large amounts of glucose, and we only have about one days supply.
Sometimes the diet is commenced by a period of fasting, so our body uses up any stored glucose. What happens then is the body begins to run on energy from our fat supplies. When our body burns fat, it creates molecules called ketones. Scientists have understood that these molecules somehow cause a change in metabolism leading to a strong anticonvulsant effect.
The ketogenic diet keeps this process going. It forces the body to burn fat 24 hours a day by making fat products the primary food that the child is getting.
The diet provides most (80 percent) of its energy from fat. The rest comes from carbohydrates and protein. Each meal has about four times as much fat as protein or carbohydrate
The food and liquid at each meal have to be carefully calculated and weighed for each person. It is a very precise method.
Who is the diet for?
The ketogenic diet is predominantly used in children with poorly controlled seizures. There is no way to predict whether it will be successful or not.
Starting the diet
The diet is started under close medical supervision in the hospital. It is started gradually and increased to the full amount over a 3 to 4 day period. During this time blood sugar and ketone levels are monitored. A fasting period is not necessary to start the diet although it is used at some hospitals. More specific information can be found at the Children's Epilepsy Programme
How soon does it to work?
It is difficult to predict. The diet may become effective immediately or can take several months. Each child is unique and has different seizure patterns and frequency. However, there is usually some improvement within the first few weeks on the ketogenic diet. Improvement in behaviour will be also seen in some children.
Will medications be stopped?
Medications will continue as normal unless changed by the neurologist. There may be a review of the medications if the diet is successful in controlling the seizures.
Are there any side-effects?
Any beliefs that the diet is “holistic” or “all-natural” are incorrect. The diet is not without side effects. Gastrointestinal complaints are most common and include constipation and worsening of reflux, diarrhoea and abdominal cramps. Weight loss or gain may also occur. Speak to the doctor about various side effects of this diet.
The diet alone is inadequate in many vitamins and minerals. Supplements will be prescribed for your child while on the ketogenic diet.
Discontinuing the diet
If the diet has led to seizure freedom for 2 years, side effects are intolerable, or the family does not feel that the diet is worth the effort, it may be recommended discontinuing the diet. Like discontinuing medications, the diet must be gradually weaned with the supervision of your doctor and dietician.
Hans Van der Wiel - has developed a CDROM of tasty and palatable recipes to use. It also has a program to help assists with the equations of measuring foods. Recommended by other parents. Email Hans for details.
Saurabh R. Sinha, MD, PhD, and Eric H. Kossoff, MD. The Ketogenic Diet. The Neurologist • Volume 11, Number 3, May 2005
Many Australians are now using complementary therapies in some way to improve their health, combat illness or even prolong their lives.
- Exploring Complementary and Alternative Therapies for Epilepsy
- Antiepileptic drugs cause nutrition deficiencies
- Nutrients depleted by antiepileptic drugs (AEDs)
- Benefits of dietary supplements
- Potential drug interactions
- Treatment of epilepsy with alternative and complementary therapies
Resources for more information
In the 1930s the management of epilepsy was revolutionised with the advent of effective antiepileptic drugs (AEDs). There have been many scientific advances in the understanding and treatment of epilepsy and a raft of antiepileptic medication have become readily available in the Western world since that time.
Today, many people with epilepsy are well-controlled on medication with minimal side effects and live full and active lives. However, about 30% of people with epilepsy continue to struggle with seizure control or experience side effects that impact their long- term health or quality of life.
It is understandable that people search for alternatives to medication whether it is within conventional medicines, such as surgery, implantation of electrical devices and use of the ketogenic diet, or in the less conventional or alternative therapeutic areas. People with epilepsy around the world have tried many alternative or complimentary therapies; however, few of these therapies have been rigorously tested against the scientific standards used to assess the effectiveness and safety of conventional medications or treatments.
Doctors Orrin Devinsky, Steven Schachter and Steven Pacia, well-respected neurologists and acedemics, have brought together experts in the various fields of alternative and complimentary therapies to discuss the treatment of epilepsy and the supporting evidence in the book Complimentary and Alternative Therapies for Epilepsy. The book explores therapies ranging from stress management, EEG Neural Feedback, traditional Indian and Chinese therapies to transcranial magnetic stimulation, osteopathic, herbal and nutritional therapies.
Conventional medicine is currently focusing on antiepileptic drug-induced nutrition deficiencies, such as vitamin B6, calcium, vitamin D and folic acid. It is well known that long-term use of antiepileptic medication affects bone mineral density and increases the risk of osteoporotic fractures. However, the short-term effects were not well-defined.
In 2008, a study published in Neurology looked specifically at the short-term risk of reduced bone mineral density associated with specific AEDs over a one year period. The researchers measured bone mineral density of the lumbar spine and hip as well as markers of bone turnover and serum calciotropic hormone levels in 93 pre-menopausal women on mono therapy (one medication).
Researchers discovered a significant decline in bone mineral density of the hip after only one year for women on phenytoin (Dilantin). However, they could see no measurable difference for women on carbamazepine, lamotrigine or valproate. Although the mechanism of phenytoin-induced bone loss is not known, lower vitamin D levels were associated with secondary hyperparathyroidism and higher bone resorption in this group. The researcher suggested supplementation of vitamin D and calcium as well as the addition of weight bearing exercises.
Jane Sala Tenna, a naturopath and qualified member of the Australian Natural Therapists Association (ANTA) based in Perth, has long recommended the monitoring of vitamin D levels and supplementation as required. People need to be more well-informed about the issue so they can get the care they need to avoid the long-term effects later in life, she says.
“Many people are on numerous combinations of AEDs. Each medication will have a different impact on different nutrients,” Jane says, explaining that each person will therefore need an individual assessment of their nutritional status. “Combining alternative and conventional treatments can be complex. It is important for people planning on trying alternative, complimentary, herbal or nutritional therapies to consult with their doctor or neurologist first.”
The depletion of vital vitamin and minerals caused by AEDs can have a short and long-term health risk for people, particularly those who are on multiple and long-term therapy, Jane explains.
“The question remains as to whether an integrated program of drug therapy and nutritional support would improve health overall and possibly even decrease severity and frequency of seizures,” she says”. “Management will require monitoring by regular blood tests, ordered by a professional who has experience in nutritional therapy.”
AEDs can deplete or decrease the absorption levels of the following nutrients. Supplementation is useful in those with a demonstrated deficiency.
Folic acid – deficiency symptoms include anaemia, diarrhoea, loss of appetite, weight loss, weakness, headaches, irritability and behavioural disorders. Women of child bearing age or planning to start a family are recommended to increase their intake of folic acid as low levels have been scientifically linked to neural tube birth defects (eg spina bifida).
Calcium – deficiency can lead to high blood pressure, muscle cramps, heart palpitations, tooth decay, back and leg pains, insomnia and nervous disorders. Calcium deficiency may also be a result of vitamin D deficiency as it is necessary for calcium absorption.
Vitamin D – deficiency can cause long-term risk of low bone mass and fracture risks, plus an increased risk of polycystic ovarian syndrome in females with epilepsy. Low vitamin D levels are also linked with breast, prostate and other types of cancers and more recently with an increased risk of heart disease.
Carnitine – a major fuel source for muscles, deficiency includes fatigue, confusion, muscle weakness cramps, heart pain and obesity.
Biotin – deficiency may include skin and hair problems, burning legs, high cholesterol, extreme fatigue and depression.
Vitamin B6 – involved in protein metabolism, red blood cell metabolism and the proper functioning of the nerves and immune system. Also involved in the formation of GABA an inhibitory neurotransmitter in the brain. Deficiency may lead to anaemia, depression, nerve inflammation, dermatitis, high blood pressure, water retention. There have been rare reports of infants experience convulsions due to severe B6 deficiency.
Selenium – deficiency can lead to free radical generation (oxidization) which is damaging to brain tissue.
Zinc – deficiency includes hair loss, skin lesions, diarrhoea, wasting of body tissues and malfunction of the organs responsible for eyesight, taste, smell and memory.
Studies indicate a role for nutritional supplementation to help reduce seizure frequency in people with intractable epilepsy. Omega-3 fatty acids and vitamin E are essential for normal brain development and a deficiency in these can contribute to neural dysfunction.
Australia has the most stringent regulations on professional complementary
medicines in the world.
In a study published in Epilepsia (2002), Simon Schlanger found that a small group of five patients exhibited a significant reduction in seizure activity after consuming a specially formulated spread which contained Omega-3, alpha-linolenic acid and vitamin E every day for six months. Another study examined the role of dietary supplementation of vitamin E in three groups of rats specially bred to model epilepsy. They found that 100% of the vitamin E deficient rats and 50% of the rats fed a ʻnormalʼ diet experienced seizures, however, none of the rats fed a vitamin E-rich diet experienced seizures.
In 1989, A. O. Ogunmekan and P. A. Hwang published their findings in Epilepsia on the use of vitamin E as an ʻadd-onʼ therapy. Over a three-month-period they found a significant reduction (60 -100%) in seizure frequency. At the end of the study the control group, who were not given the active ingredient, were commenced on the vitamin E supplementation regime and also experienced the same level of seizure reduction. Half of the participants also demonstrated an improvement in their EEG in comparison to their pre-study measurements.
Alok Tyagi and Norman Delanty discovered widespread use of herbal remedies and nutritional supplements in patients with and without epilepsy in their 2003 research. They reviewed 79 articles on the topic and published their findings in Epilepsia. They found many patients did not inform their doctor of their use of herbal remedies nor nutritional supplements unless specifically asked. Many herbs and supplements are recommended by natural therapists to treat epilepsy however, there is no uniformity in the recommendation of herbs for seizures and often the potential interactions of the herbal remedies with the AEDs were not fully appreciated.
and any other health conditions before receiving any treatment.
Jane suggests people on AEDs who wish to explore the use of herbal or nutritional supplements to consult their doctor to discuss potential drug interactions especially before consuming herbal remedies. She also recommends starting on small doses and introducing one remedy at a time with at least a two-hour period between ingestion of medications and herbal remedies. This will ensure easier identification of the cause should an interaction or side-effect occurs, Jane explains.
Tyagi and Delanty further discovered that a number of traditional Chinese and Japanese medicines have been tested against the efficacy of conventional AEDs and appear to have some antiepileptic effect when used in addition to conventional AED therapy. Other remedies have been reported to have anti-seizure properties, however, many require more rigorous testing to provide conclusive evidence of their antiepileptic mode of action.
Scutellaria lateriflora (Skullcap), Piper guineense (west African black pepper) and inhaled lavender oil vapor are considered to have anti-seizure properties. On the other hand, other commonly used herbal remedies, such as Ginkgo (ginkgo bilbola), evening primrose oil and star flower, are thought to reduce the seizure threshold leaving the person more vulnerable to seizure activity. Some herbal remedies interact with AEDs by altering drug absorption, changing drug metabolism or altering drug elimination, thus leading to a lowering or increase in blood serum levels of the AED.
For example Shankpushpi, a herbal remedy used as a tranquilizer and to lower blood pressure, interacts with phenytoin (Dilantin) lowering the serum blood. Mentat, a product made up of more than 20 herbs and advertised as a sedative and ʻoffering protection against seizuresʼ, increases the bioavailability (blood level) of Carbamazepine (tegretol), which can lead to toxicity.
check with your therapist and doctor/neurologist immediately.
Stress Management – many adults with well-controlled epilepsy report they have increased seizure frequency at times of increased or prolonged periods of stress. If stress is identified as an individual trigger for breakthrough seizures, strategies to reduce stress can be beneficial using relaxation techniques such as meditation, Tai Chi, yoga, controlled breathing, therapeutic massage and hypnosis.
EEG Neurofeedback – evolving from biofeedback which has been used to teach people how to slow their heart rates, neuro-feedback uses EEG and visual feedback to teach people to exert some control over their brainwaves enhancing sensorimotor rhythms. It is unknown how these changes reduce seizure activity, however, 18 studies on humans have demonstrated up to a 50% reduction in seizure activity. Further research is required to verify its validity as a mainstream treatment option.
Transcranial Magnetic Stimulation (TMS) – experimental evidence has shown that low frequency transcranial magnetic stimulation has an anticonvulsant effect and may have a role as an epilepsy treatment. Roberto Cantello and fellow researchers in their 2007 study published in Epilepsia found that repetitive TMS in people with intractable epilepsy significantly reduce EEG interictal epileptiform abnormalities (IEA) in a third of study participants. Eun Yeon Jooʼs study published in Clinical Neurophysiology in 2007 found that focal stimulation of longer duration tended to reduce seizure frequency as well as interictal spikes. Although in the early stages, TMS holds promise for development as a possible treatment for epilepsy.
Aromatherapy – the use of concentrated essential oils as inhalations or in massage therapy has long been used as a means of relaxation for stress reduction. Dr Tim Betts, consultant neuro-psychiatrist of the Queen Elizabeth Psychiatric Hospital in Birmingham, England, has performed clinical studies on the use of essential oils on people with epilepsy and found that Jasmine, Ylang Ylang, Lavender, Chamomile and Bergamot have a beneficial effect while essential oils to avoid include Rosemary, Hyssop, sweet fennel and sage.
Acupuncture – has been shown to have an intriguing effect upon the brain, reducing the activity of an emyme niotric oxide synthase after an acupuncture treatment. One group of researchers found acupuncture inhibited seizure activity in an experimental model of temporal lobe epilepsy. Karl Nakken conducted one of the few controlled clinical studies of any alternative and complimentary therapy. Dr Orrin Devinsky states that although it did not prove acupuncture was beneficial in the group of patients with intractable epilepsy, it should not be ruled out and is worthy of further investigation to determine which patients may benefit.
When exploring the options of natural therapies it is important to carefully research and cross-check data as there is much conflicting information. Check the source of the information, consult your doctor and visit a qualified naturopath or doctor of alternative medicine with experience in epilepsy.
For information on vitamin D depletion and anticonvulsant drugs, read article “Nutrient Depletion as a Side Effect of Anticonvulsant Therapy” by Jane Sala Tenna B. App. Sc. (Medical Technology) Dip.App.Sc (Naturopath). For a copy, please email Epilepsy360° on firstname.lastname@example.org
“Antiepileptic drugs and bone metabolism”, go to www.nutritionandmetabolism.com/content/3/1/36
Reference book: Complimentary and Alternative Therapies for Epilepsy by Orrin Devinsky et al. ISBN 1-888799-89-7
Aromatherapy go to http://www.essentialoils.co.za/epilepsy-research.htm
- Locating a qualified naturopath, contact the Australian Naturopathic Practitioners Association on (03) 9811 9990 or www.anpa.asn.au, or contact the Australian Natural Therapists Association on 1800 817 577 or www.anta.com.au