secondary brain cancer?

What is secondary brain cancer?

Secondary brain cancer is cancer that starts somewhere else in the body and spreads to the brain. It may also be called brain metastases or secondary brain tumour. It is a type of advanced cancer.

Some types of primary cancer are more likely to spread to the brain. The primary cancer is where the cancer first started. These include:

Sometimes, secondary brain cancer is found before the primary cancer has been diagnosed. For a small number of people it is not possible to find the primary cancer. This is called secondary brain cancer from an unknown primary.

We also have other information about primary brain tumours.

Symptoms of secondary brain cancer

Secondary brain cancer can cause similar symptoms to primary brain tumours.

As a tumour grows, it can press on or grow into nearby areas of the brain. This can cause symptoms because it stops that part of the brain from working normally.

The first symptoms may be due to the tumour causing a build-up of pressure inside the skull. This is called raised intracranial pressure.

Symptoms depend on where the tumour is in the brain. They can include:

  • headaches
  • feeling or being sick
  • seizures (fits)
  • changes in personality or being confused
  • numbness or weakness on one side of the body
  • problems with speech.

Some people might not have any symptoms. Instead, the tumour may be found during tests to find out more about the primary cancer.

Diagnosis of secondary brain cancer

A doctor may suspect secondary brain cancer if you have symptoms, and:

  • you have had cancer before, even a long time ago
  • a secondary cancer has been found in other places, such as the liver or bones
  • there is more than one tumour in the brain – this is because primary brain tumours usually only affect one area of the brain.

Your doctors will need to do some tests to diagnose secondary brain cancer. You will have one of the following:

  • Brain CT scan
  • Brain MRI scan

Your doctor may also:

Rarely, if scans have found any tumours, you may have a biopsy. Your doctor or nurse will explain more about this.

Waiting for test results can be a difficult time. We have more information that can help.

Getting support

Finding out you have secondary brain cancer can be very difficult. You may feel shocked and find it hard to understand or accept. Talking about how you feel to close family and friends may help. Your doctor and specialist nurse can also give you support. 

Macmillan is also here to support you. If you would like to talk, you can:

You may also want to get support from a brain tumour charity, such as:

Driving and secondary brain cancer

If you are diagnosed with a secondary brain tumour, you must stop driving straight away.

You may not be allowed to drive for a time after diagnosis. Your doctor, surgeon or specialist nurse will tell you if this applies to you. This change can be upsetting and frustrating. But you must follow the advice they give you.

If you have a driving licence, you must tell the licencing agency you have been diagnosed with secondary brain cancer. If you live in England, Scotland or Wales, contact the Drivers and Vehicle Licensing Agency (DVLA) on 0300 790 6806. If you live in Northern Ireland, contact the Driver and Vehicle Agency (DVA) on 0300 200 7861.

You could be fined if you do not tell them. You could also be prosecuted if you have an accident.

If you have to stop driving, the DVLA or DVA will tell you when you are allowed to start driving again. This depends on:

  • how many tumours there are and where they are in the brain
  • whether you have had any seizures
  • your treatment
  • the type of driving license you have.

Seizures & Nightmares

I don’t normally suffer from either of these during the night. last night I suffered 2-3 of them.

Normally when I have a nightmare I can usually remember it in the morning but I couldn’t remember what happened (if it was a nightmare) except for a brief moment of being awake in each case then falling asleep again.

If it were a siezure I only suffer from Focal Partial and Simple Partial which would normally occur during the day.

Finally I have to admit I have been under a bit of stress forr various and personal reasons

So were they Seizures or nightmares I took last night?

Please drop a comment in the box below

Ohtahara syndrome

This is a very rare epilepsy syndrome. Seizures start before 3 months of age. Many babies have an underlying structural brain abnormality or a metabolic (biochemical) disorder. This may be genetic in origin (passed on through the genes), or happen because of brain damage before or around the time of birth. A number of gene abnormalities, called mutations, may also cause Ohtahara syndrome. These include STXBP1, ARX, CDKL5 and PNKP. Other mutations will almost certainly be found in the future. However, no cause will be found in some infants. 

It is one of the group of severe epilepsy syndromes that start in the first year of life and are called the ‘Developmental and epileptic encephalopathies’.

This syndrome is quite similar to another developmental and epileptic encephalopathy called ‘Early myoclonic encephalopathy’.

Other names for Ohtahara syndrome

• Early infantile epileptic encephalopathy (EIEE) with burst-suppression

Symptoms

Seizures usually start in the first 7 to 10 days of life. Sometimes the mother may realise her baby was having seizures during the last couple of months of her pregnancy, when she sees her baby having seizures after birth.

Different types of seizures happen in this syndrome. The most common type is a tonic spasm where the baby suddenly has stiffening of the limbs, which last between 2 and 6 or more seconds. These tonic spasms may be quite subtle or quite severe. They are not the same as the epileptic spasms (infantile spasms) that occur in West syndrome. Children with Ohtahara syndrome also have focal (partial) motor seizures and myoclonic seizures with jerking of one limb, or one side of the body. These may last a few seconds to several minutes. Generalised seizures may happen later. After between 2 and 7 months, the seizure type may change to infantile spasms and the child may then develop West syndrome.

Diagnosis

A full account and description of what happens during the seizures is important for the doctors to make the diagnosis. It is always helpful if you can record a video of some of the seizures and show these to the hospital doctor.

The EEG test, which records the electrical activity in the brain, is always abnormal, showing evidence of abnormal discharges, or spikes and waves (the ‘burst’) alternating with periods of looking flat and featureless (‘suppression’). This type of record is referred to as ‘burst-suppression’ pattern. 

Epilepsy Action has more information on diagnosis.

Treatment

The seizures are often resistant to epilepsy medicines. The choice of medicine is difficult, but often some of the older medicines, such as phenobarbital, are tried first. Other medicines that may be effective include levetiracetam (Keppra), clobazam (Frisium), clonazepam (Rivotril), vigabatrin (Sabril) and zonisamide (zonegran). Other medicines such as pyridoxine and pyridoxal phosphate and a course of steroids called prednisolone may also be effective in a small number of children. Some babies with a focal (in one area only) structural brain abnormality seen on a magnetic resonance imaging (MRI) scan may be able to have epilepsy surgery to remove the abnormal area of brain. It may be possible to reduce the numbers of seizures if the baby is found to have a treatable metabolic (biochemical) disorder.

If your child has this syndrome it is very likely they will have prolonged or repeated seizures that continue over many minutes or even hours. Your child’s doctor will discuss a ‘rescue’ or emergency care plan with you to treat any prolonged or repeated seizures.

There may be research studies open that are relevant to this epilepsy syndrome. Your child’s doctor will be able to discuss this with you.

Information about treatments for children can be found on the Medicines for Children website.

Outlook

Affected babies do not behave normally. They are very floppy and excessively sleepy (described as an encephalopathy) and often have difficulty with feeding. With time they may develop stiffness (spasticity) in the limbs. They also make very little developmental progress and remain totally dependent. They often feed poorly. Sadly, they often die within the first two years of life, because of complications, including repeated chest infections. Those who do survive are usually severely disabled and will continue to have seizures despite treatment. Many babies go on to develop West syndrome, usually between 3 and 9 months of age.

Support

Contact
Charity for families of disabled children.
Freephone helpline: 0808 808 3555
Website: contact.org.uk
Email: helpline@contact.org.uk

Together for Short Lives
Helpline: 0808 8088 100
Website: togetherforshortlives.org.uk

What is a syndrome?

A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they have physical or learning disabilities, or both. The results of an electroencephalogram (EEG) are also used to help identify epilepsy syndromes.

If you would like to know more about an epilepsy syndrome, please speak to your doctor. If you would like to know more about epilepsy in general, please contact the Epilepsy Action Helpline.

Epilepsy & Bullying

Stigma and bullying

Stigma and bullying is common in epilepsy, often due to widespread misunderstanding about the condition. It can lead to the young person having low self-esteem and a reduction in motivation to engage with school learning and activities. The attitudes of their school, family and friends play an important role in the young person’s overall school experience and their wellbeing.

Many young people with epilepsy say they have encountered nastiness because of their condition. This can have a devastating impact on childhood, with many young people avoiding going to places where they might be the victim of ill-treatment.

Raising awareness of the basic facts about epilepsy will help to improve confidence, tolerance and inclusion as well as dispel unhelpful myths. Awareness raising should involve both pupils and school staff and can be done in a variety of ways, including:

  • Holding assemblies and lessons
  • Being alert to bullying
  • Developing ‘epilepsy-aware’ peer group
  • Arranging staff training

Schools need to ensure that awareness raising is handled sensitively and with the young person’s (and their parents’) support. Parents, charities and other outside agencies could contribute to the awareness raising activities.

Bullying is an additional stress to young people with epilepsy and stress is a common trigger for seizures. While many schools work hard to eliminate bullying, young people with epilepsy need to be recognised as particularly vulnerable.

Ketogenic Diet for Epilepsy

The ketogenic diet for epilepsy (KDE) is a special diet that has helped many children and some adults achieve better (or even full) control of their seizures. It’s a first-line treatment for a few specific epilepsy syndromes, such as epilepsy due to mutations in GLUT-1 or pyruvate dehydrogenase deficiency.1

Background

The ketogenic diet for epilepsy was developed in the 1920s by a Michigan doctor named Hugh Conklin. However, once effective medications were developed, the diet was used less and less frequently.2

It has regained recognition and has become a standard backup plan for children whose epilepsy symptoms are difficult to control with medication.1 With more than 470,000 children living with seizure disorders in the United States (according to Centers for Disease Control and Prevention statistics), it’s an important addition to the arsenal of treatments for epilepsy.

Researchers are also beginning to see how it might help adults with epilepsy and people with a variety of neurologic disorders.

The Ketogenic Diet and Epilepsy

What It Entails

The ketogenic diet for epilepsy is a very high-fat diet with just enough protein for body maintenance and growth, and very low amounts of carbohydrate.

When fats are broken down for energy, the body goes into what’s called a ketogenic state, in which the body generates molecules called ketones. The goal of the KDE is for the brain to use ketones for energy rather than glucose (sugar) as much as possible.

Ketones are (largely) water-soluble, so they are easily transported to the brain. The brain cannot use fatty acids for energy, but it can use ketones for a large portion of its energy requirements.1

The KDE is usually begun in a hospital setting and often begins with a one- to two-day fasting period, though there may be a trend away from both of these requirements.3

After determining the proper amount of protein (depending on age, etc.), the diet is structured as a ratio of fat grams to protein grams, plus carb grams. It usually begins with a 4 to 1 ratio and can be fine-tuned from there. The diet is often calorie and fluid-limited.4 Additionally, no packaged low-carb foods (shakes, bars, etc.) are allowed for at least the first month.

Because a gram of fat has more than twice the calories of a gram of protein or carbohydrate, this equation means that at least 75% of the calories in the diet come from fat. This is a very strict diet, and it takes time to learn how to put together meals that fit the formula. All food must be weighed and recorded.

Weaning off the diet is often attempted after two years, though some children are kept on it for longer.1

ketogenic diet calorie distribution
Verywell / Emily Roberts

Why It Works

Researchers are beginning to understand why the ketogenic diet works to lower seizure frequency. According to a 2017 review of studies, it appears that several mechanisms may be at work, including the following.

  • The diet appears to alter ketone metabolism in the brain in a way that enhances the brain’s ability to produce the neurotransmitter GABA, which has a calming effect on the brain.1
  • The diet has significant anti-inflammatory and anti-oxidative impacts, which appear to alter the way some genes involved in epilepsy are expressed.
  • Certain fatty acids featured in the diet have anticonvulsant effects and have even been shown to boost the effects of valproic acid—a common anti-seizure medication.
  • Polyunsaturated fatty acids in the diet may prevent brain cells from becoming overexcited.
  • Decanoic acid, which is part of the diet as well, appears to have a direct inhibitory reaction on the AMPA receptors in the brain. These receptors are believed to play a role in epilepsy and are the target of some epilepsy medications.
  • Effects on a key sensor of cellular energy appear to help prevent excessive firing of brain cells.
  • The diet may impact circadian activities and the expression of a growth factor in the brain in a beneficial way.5

Effectiveness

Studies generally show that about a third of children with epilepsy who follow the ketogenic diet will have at least a 90% reduction in seizures, and another third will experience a reduction of between 50% and 90%.46

This is remarkable, considering that these patients are generally those whose seizures are not well-controlled with medications.

In Adults

A growing number of studies have been done on the KDE and modified Atkins Diet in adults with seizure disorders, and the results are similar to studies with children.

One 2014 study reported that 45% of adolescent and adult participants saw a reduction of seizure frequency of 50% or greater. Tolerability appeared better in those with symptomatic generalized epilepsy.

Interestingly, it was more difficult to keep adults on the diet, since they obviously have more control over what they eat. Research is still limited in this area and more trials are needed.7

In Pregnancy

A 2017 report on use of these diets during pregnancy suggests they may be an effective way to control seizures and could possibly allow pregnant women to use lower doses of epilepsy medication. However, the safety of this still needs to be examined.8

Work With Your Medical Team

It is vital that anyone using this diet for a seizure disorder do it under the supervision of an experienced physician and dietitian. Many individual variations can influence the exact diet recommendations for each person, and coordinating this eating plan with medications can be tricky. It’s not something you should ever attempt on your own.

A Typical Day’s Menu

Below is a shortened description of a menu appearing in the 2015 Pediatric Annals article, “The Ketogenic Diet: A Practical Guide for Pediatricians.” It’s meant to give the idea of what children eat on the diet, not serve as an exact prescription. Remember, all of these foods are carefully weighed and measured.

  • Breakfast: Eggs made with heavy cream, cheese, and butter; small serving of strawberries, pineapple, or cantaloupe
  • Lunch: Hamburger patty topped with cheese; cooked broccoli, green beans, or carrots with melted butter; whipped heavy cream
  • Dinner: Grilled chicken breast with cheese and mayonnaise; cooked vegetables with butter; whipped heavy cream
  • Snacks: Whipped heavy cream, small servings of fruit, sugar-free gelatin

Variations substitute coconut oil or MCT oil for some of the heavy cream and butter.

Eating While at School

With a school-aged child, keeping them on the diet during the school day is difficult but essential. Thinking and planning ahead can help you be successful. You may want to try some of the following strategies:

  • Talk to your child: Make sure your child understands the diet and why sticking to it is essential. Let them know they shouldn’t trade food with other kids. As hard as it is, they also shouldn’t eat food from vending machines or treats handed out in class.
  • Talk to the school: The teacher, guidance counselor, nurse, and administration all need to be aware of your child’s special dietary needs (as well as other health-related matters). You’ll want to have regular conversations with them, and you may want to have a 504 plan or individualized education plan (IEP) in place as well.
  • Become a planner: Gather several recipes for appropriate meals that can make convenient, easy-to-pack lunches. If possible, you may want to provide appropriate treats for your child for holiday parties and other special events that you may know about ahead of time. The Charlie Foundation and Clara’s Menu are good resources for child-friendly keto recipes.
  • Educate family members: It’s important that family members and any regular caregivers know how to prepare a meal for the child with epilepsy.
  • Establish routines: The timing of meals and snacks needs to be consistent in order for your child’s glucose levels to remain as stable as possible. You may need to work with your child’s teacher(s) on this.
  • Involve a friend: Having a friend at school who understands the importance of your child’s diet may help them feel less awkward about being “different” and give them someone to lean on for support when needed. Make sure your child is OK with this and give them input on which friend to choose.

You’ll also want to make parents of your child’s friends aware of the special diet and that what some people may consider “a little harmless cheating” may not be harmless at all. It’s a good idea to provide food for your child to take to parties and playdates.How to Raise Kids Who Are on a Special Diet

Alternatives to the Super-Strict Ketogenic Diet

The Modified Atkins Diet is a popular alternative that helps many who find the ketogenic diet too difficult to adhere to. This diet is far less restrictive, as calories, fluids, and protein are not measured.9

The diet begins with 10 grams of carbohydrate per day for the first month, which slowly increases to 15 or 20 grams. It is similar to the very strict induction phase of the standard Atkins diet.

Research suggests participant achieved better seizure control when on the KDE. A 2016 study agreed that this is the case for children under 2, but that the diets have similar outcomes for older children. It also noted that the modified Atkins diet has fewer serious side effects and better tolerability.10

Ketogenic Diet for Epilepsy

The ketogenic diet for epilepsy (KDE) is a special diet that has helped many children and some adults achieve better (or even full) control of their seizures. It’s a first-line treatment for a few specific epilepsy syndromes, such as epilepsy due to mutations in GLUT-1 or pyruvate dehydrogenase deficiency.

Background

The ketogenic diet for epilepsy was developed in the 1920s by a Michigan doctor named Hugh Conklin. However, once effective medications were developed, the diet was used less and less frequently.2

It has regained recognition and has become a standard backup plan for children whose epilepsy symptoms are difficult to control with medication.1 With more than 470,000 children living with seizure disorders in the United States (according to Centers for Disease Control and Prevention statistics), it’s an important addition to the arsenal of treatments for epilepsy.

Researchers are also beginning to see how it might help adults with epilepsy and people with a variety of neurologic disorders.

What It Entails

The ketogenic diet for epilepsy is a very high-fat diet with just enough protein for body maintenance and growth, and very low amounts of carbohydrate.

When fats are broken down for energy, the body goes into what’s called a ketogenic state, in which the body generates molecules called ketones. The goal of the KDE is for the brain to use ketones for energy rather than glucose (sugar) as much as possible.

Ketones are (largely) water-soluble, so they are easily transported to the brain. The brain cannot use fatty acids for energy, but it can use ketones for a large portion of its energy requirements.1

The KDE is usually begun in a hospital setting and often begins with a one- to two-day fasting period, though there may be a trend away from both of these requirements.3

After determining the proper amount of protein (depending on age, etc.), the diet is structured as a ratio of fat grams to protein grams, plus carb grams. It usually begins with a 4 to 1 ratio and can be fine-tuned from there. The diet is often calorie and fluid-limited.4 Additionally, no packaged low-carb foods (shakes, bars, etc.) are allowed for at least the first month.

Because a gram of fat has more than twice the calories of a gram of protein or carbohydrate, this equation means that at least 75% of the calories in the diet come from fat. This is a very strict diet, and it takes time to learn how to put together meals that fit the formula. All food must be weighed and recorded.

Weaning off the diet is often attempted after two years, though some children are kept on it for longer.

Why It Works

Researchers are beginning to understand why the ketogenic diet works to lower seizure frequency. According to a 2017 review of studies, it appears that several mechanisms may be at work, including the following.

  • The diet appears to alter ketone metabolism in the brain in a way that enhances the brain’s ability to produce the neurotransmitter GABA, which has a calming effect on the brain.1
  • The diet has significant anti-inflammatory and anti-oxidative impacts, which appear to alter the way some genes involved in epilepsy are expressed.
  • Certain fatty acids featured in the diet have anticonvulsant effects and have even been shown to boost the effects of valproic acid—a common anti-seizure medication.
  • Polyunsaturated fatty acids in the diet may prevent brain cells from becoming overexcited.
  • Decanoic acid, which is part of the diet as well, appears to have a direct inhibitory reaction on the AMPA receptors in the brain. These receptors are believed to play a role in epilepsy and are the target of some epilepsy medications.
  • Effects on a key sensor of cellular energy appear to help prevent excessive firing of brain cells.
  • The diet may impact circadian activities and the expression of a growth factor in the brain in a beneficial way.5

Effectiveness

Studies generally show that about a third of children with epilepsy who follow the ketogenic diet will have at least a 90% reduction in seizures, and another third will experience a reduction of between 50% and 90%.46

This is remarkable, considering that these patients are generally those whose seizures are not well-controlled with medications.

In Adults

A growing number of studies have been done on the KDE and modified Atkins Diet in adults with seizure disorders, and the results are similar to studies with children.

One 2014 study reported that 45% of adolescent and adult participants saw a reduction of seizure frequency of 50% or greater. Tolerability appeared better in those with symptomatic generalized epilepsy.

Interestingly, it was more difficult to keep adults on the diet, since they obviously have more control over what they eat. Research is still limited in this area and more trials are needed.7

In Pregnancy

A 2017 report on use of these diets during pregnancy suggests they may be an effective way to control seizures and could possibly allow pregnant women to use lower doses of epilepsy medication. However, the safety of this still needs to be examined.8

Work With Your Medical Team

It is vital that anyone using this diet for a seizure disorder do it under the supervision of an experienced physician and dietitian. Many individual variations can influence the exact diet recommendations for each person, and coordinating this eating plan with medications can be tricky. It’s not something you should ever attempt on your own.

A Typical Day’s Menu

Below is a shortened description of a menu appearing in the 2015 Pediatric Annals article, “The Ketogenic Diet: A Practical Guide for Pediatricians.” It’s meant to give the idea of what children eat on the diet, not serve as an exact prescription. Remember, all of these foods are carefully weighed and measured.

  • Breakfast: Eggs made with heavy cream, cheese, and butter; small serving of strawberries, pineapple, or cantaloupe
  • Lunch: Hamburger patty topped with cheese; cooked broccoli, green beans, or carrots with melted butter; whipped heavy cream
  • Dinner: Grilled chicken breast with cheese and mayonnaise; cooked vegetables with butter; whipped heavy cream
  • Snacks: Whipped heavy cream, small servings of fruit, sugar-free gelatin

Variations substitute coconut oil or MCT oil for some of the heavy cream and butter.

Eating While at School

With a school-aged child, keeping them on the diet during the school day is difficult but essential. Thinking and planning ahead can help you be successful. You may want to try some of the following strategies:

  • Talk to your child: Make sure your child understands the diet and why sticking to it is essential. Let them know they shouldn’t trade food with other kids. As hard as it is, they also shouldn’t eat food from vending machines or treats handed out in class.
  • Talk to the school: The teacher, guidance counselor, nurse, and administration all need to be aware of your child’s special dietary needs (as well as other health-related matters). You’ll want to have regular conversations with them, and you may want to have a 504 plan or individualized education plan (IEP) in place as well.
  • Become a planner: Gather several recipes for appropriate meals that can make convenient, easy-to-pack lunches. If possible, you may want to provide appropriate treats for your child for holiday parties and other special events that you may know about ahead of time. The Charlie Foundation and Clara’s Menu are good resources for child-friendly keto recipes.
  • Educate family members: It’s important that family members and any regular caregivers know how to prepare a meal for the child with epilepsy.
  • Establish routines: The timing of meals and snacks needs to be consistent in order for your child’s glucose levels to remain as stable as possible. You may need to work with your child’s teacher(s) on this.
  • Involve a friend: Having a friend at school who understands the importance of your child’s diet may help them feel less awkward about being “different” and give them someone to lean on for support when needed. Make sure your child is OK with this and give them input on which friend to choose.

You’ll also want to make parents of your child’s friends aware of the special diet and that what some people may consider “a little harmless cheating” may not be harmless at all. It’s a good idea to provide food for your child to take to parties and playdates.How to Raise Kids Who Are on a Special Diet

Alternatives to the Super-Strict Ketogenic Diet

The Modified Atkins Diet is a popular alternative that helps many who find the ketogenic diet too difficult to adhere to. This diet is far less restrictive, as calories, fluids, and protein are not measured.9

The diet begins with 10 grams of carbohydrate per day for the first month, which slowly increases to 15 or 20 grams. It is similar to the very strict induction phase of the standard Atkins diet.

One 2014 study reported that 45% of adolescent and adult participants saw a reduction of seizure frequency of 50% or greater. Tolerability appeared better in those with symptomatic generalized epilepsy.

Medication for epilepsy

Photo by Anna Shvets on Pexels.com

Epilepsy cannot be cured with medication. However, with the right type and strength of medication, the majority of people with epilepsy do not have seizures. The medicines work by stabilising the electrical activity of the brain. You need to take medication every day to prevent seizures.

Medicines used to treat epilepsy

These include:
Carbamazepineclobazamclonazepameslicarbazepineethosuximidegabapentinlacosamidelamotriginelevetiracetamoxcarbazepineperampanelphenobarbitalphenytoinpregabalinprimidonerufinamidesodium valproatetiagabinetopiramatevigabatrin and zonisamide. They all come with different brand names.

Sodium valproate is commonly used as a treatment for epilepsy. In April 2018, the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK recommended that valproate must no longer be used for any women or girl who could become pregnant unless a Pregnancy Prevention Programme is in place. The Pregnancy Prevention Programme is a system of ensuring all female patients taking valproate medicines:

  • Have been told and understand the risks of use in pregnancy and have signed a Risk Acknowledgement Form.
  • Are on highly effective contraception if necessary.
  • See their specialist at least every year.

How effective is medication used for epilepsy?

The success in controlling seizures by medication varies depending on the type of epilepsy. For example, if no underlying cause can be found for your seizures (idiopathic epilepsy), you have a very good chance that medication can fully control your seizures. Seizures caused by some underlying brain problems may be more difficult to control.

The overall outlook is better than many people realise. The following figures are based on studies of people with epilepsy, which looked back over a five-year period. These figures are based on grouping together people with all types of epilepsy, which gives an overall picture:

  • About 5 in 10 people with epilepsy will have no seizures at all over a five-year period. Many of these people will be taking medication to control seizures. Some will have stopped treatment having had two or more years without a seizure whilst taking medication.
  • About 3 in 10 people with epilepsy will have some seizures in this five-year period but far fewer than if they had not taken medication.
  • So, in total, with medication about 8 in 10 people with epilepsy are well controlled with either no, or few, seizures.
  • The remaining 2 in 10 people experience seizures, despite medication.

Which medicine is the most suitable?

Deciding on which medicine to prescribe depends on such things as:

  • Your type of epilepsy.
  • Your age.
  • Other medicines that you may take for other conditions.
  • Possible side-effects.
  • Whether you are pregnant or planning a pregnancy.

There are popular first-choice medicines for each type of epilepsy. However, if one medicine does not suit, another may be better.

A low dose is usually started. The aim is to control seizures at the lowest dose possible. If you have further seizures, the dose is usually increased. There is a maximum dose allowed for each medicine. In about 7 in 10 cases, one medicine can control all, or most, seizures. Medicines may come as tablets, soluble tablets, capsules or liquids to suit all ages.

What if seizures still occur?

In about 3 in 10 cases, seizures are not controlled despite taking one medicine. This may be because the dosage or timing of the medication needs re-assessing. A common reason why seizures continue to occur is because medication is not taken correctly. If in doubt, your doctor or pharmacist can offer advice.

If you have taken a medicine correctly up to its maximum allowed dose but it has not worked well to control your seizures, you may be advised to try a different medicine. If that does not work alone, taking two medicines together may be advised. However, in about 2 in 10 cases, seizures are not well controlled even with two medicines.

When is medication started?

The decision when to start medication may be difficult. A first seizure may not mean that you have ongoing epilepsy. A second seizure may never happen, or occur years after the first. For many people, it is difficult to predict if seizures will recur.

Another factor to consider is how severe seizures are. If the first seizure was severe, you may opt to start medication immediately. In contrast, some people have seizures with relatively mild symptoms. Even if the seizures occur quite often, they might not cause much problem and some people in this situation opt not to take any medication.

The decision to start medication should be made by weighing up all the pros and cons of starting, or not starting, treatment. A popular option is to wait and see after a first seizure. If you have a second seizure within a few months, more are likely. Medication is commonly started after a second seizure that occurs within 12 months of the first. However, there are no definite rules and the decision to start medication should be made after a full discussion with your doctor.

What about side-effects?

All medicines have possible side-effects that affect some people. All known possible side-effects are listed in the leaflet which comes in the medicine packet. If you read this it may appear alarming. However, in practice, most people have few or no side-effects, or just minor ones. Many side-effects listed are rare. Each medicine has its own set of possible side-effects. Therefore, if you are troubled with a side-effect, a change of medication may resolve the problem.

When you start a medicine, ask your doctor about any problems which may arise for your particular medicine. Two groups of problems may be mentioned:

  • Side-effects which are relatively common but are not usually serious. For example, sleepiness is a common side-effect of some medicines. This tends to be worse when first started. This problem often eases or goes once the body gets used to the medicine. Other minor side-effects may settle down after a few weeks of treatment. If you become unsteady, it may indicate the dose is too high.
  • Side-effects which are serious but rare. Your doctor may advise what to look out for. For example, it is important to report any rashes or bruising whilst taking some types of medicine.

Note: you should not stop taking a medicine suddenly. If you notice a side-effect, you should ask your doctor for advice.

Taking your medication correctly

It is important to take your medicine as prescribed. Try to get into a daily routine. Forgetting an occasional dose is not a problem for some people; however, for others this would lead to breakthrough seizures. One of the reasons why seizures recur is due to medication not having been taken properly. A pharmacist can be a good source of advice if you have any queries about medication.

Prescription medicines are free if you have epilepsy

You will need an exemption certificate. Ask your pharmacist for details.

Some medicines taken for other conditions may interfere with medication for epilepsy. If you are prescribed or buy another medicine, always remind your doctor or pharmacist that you take medication for epilepsy. Even preparations such as indigestion medicines may interact with your epilepsy medication, which may increase your chance of having a seizure.

Some epilepsy treatments interfere with the contraceptive pill. You may need a higher-dose pill or an alternative method of contraception. For reliable contraception, it is best to seek advice from a doctor or nurse. They will be able to tell you if your epilepsy treatment affects any methods of contraception.

For women with epilepsy, the risk of complications during pregnancy and labour is slightly higher than for women without epilepsy. The small increase in risk is due to the small risk of harm coming to a baby if you have a serious seizure whilst pregnant. There is also a small risk of harm to an unborn baby from anti-epilepsy medicines.

Before becoming pregnant it is important to seek advice from your doctor. Any potential risks can be discussed. For example, to go over your current medication and to see if it should be changed to minimise the risk of harm to a developing baby. One important point is that you should take extra folic acid (folate) before becoming pregnant and continue it until you are 12 weeks pregnant.

If you have an unplanned pregnancy, you should not stop epilepsy medication, which may risk a seizure occurring. Continue your medication and see a doctor as soon as possible. See the separate leaflet called Epilepsy and Planning Pregnancy for more details.

You may wish to consider stopping medication if you have not had any seizures for two or more years. It is important to discuss this with a doctor. The chance of seizures recurring is higher for some types of epilepsy than others. Overall, if you have not had any seizures for 2-3 years and you then stop medication:

  • About 6 in 10 people will remain free of seizures two years after stopping medication. If seizures do not return within two years after stopping medication, the long-term outlook is good. However, there is still a small chance of a recurrence in the future.
  • About 4 in 10 people will have a recurrence within two years.

There are many different types of epilepsy, some of which are age-dependent but some that will need medication for life. Your epilepsy specialist should be able to offer you more advice about the long-term outlook for your particular type of epilepsy.

Your life circumstances may influence the decision about stopping medication. For example, if you have recently regained your driving licence, the risk of losing it again for a year if a seizure occurs may affect your decision. However, if you are a teenager who has been free of seizures for some years, you may be happy to take the risk.

If a decision is made to stop medication, it is best done gradually, reducing the dose over a period of several weeks or months. It is important to follow the advice given by your doctor.

  • Surgery to remove a small part of the brain, which is the underlying cause of the epilepsy. Surgery is only possible for a minority of people with epilepsy and it may be considered when medication fails to prevent seizures, especially focal seizures (used to be called partial seizures). Only a small number of people with epilepsy are suitable for surgery and, even for those that are, there are no guarantees of success. Also, there are risks from operations. However, surgical techniques continue to improve and surgery may become an option for more and more people in the future.
  • Vagal nerve stimulation is a treatment for epilepsy where a small generator is implanted under the skin below the left collarbone. The vagus nerve is stimulated to reduce the frequency and intensity of seizures. This can be suitable for some people with seizures that are difficult to control with medication.
  • The ketogenic diet is a diet very high in fat, low in protein and almost carbohydrate-free. This can be effective in the treatment of difficult-to-control seizures in some children.
  • Complementary therapies such as aromatherapy may help with relaxation and relieve stress but have no proven effect on preventing seizures.
  • Counselling. Some people with epilepsy become anxious or depressed about their condition. A doctor may be able to arrange counselling with the aim of overcoming such feelings. Genetic counselling may be appropriate if the type of epilepsy is thought to have an hereditary pattern.

Some people with epilepsy are prescribed a medicine that a relative or friend can administer in emergencies to stop a prolonged seizure. In most people with epilepsy, seizures do not last more than a few minutes. However, in some cases a seizure lasts longer and a medicine can be used to stop it. A doctor or nurse should give instruction on how and when to administer the medicine.

The most commonly used medicine for this is diazepam. This can be squirted from a tube into the person’s anus (rectal diazepam). This is absorbed quickly into the bloodstream from the rectum and so works quickly. More recently, a medicine called midazolam has been used which is easier to administer. It is squirted into the sides of the mouth where it is absorbed directly into the bloodstream.

There is often no apparent reason why a seizure occurs at one time and not another. However, some people with epilepsy find that certain triggers make a seizure more likely. These are not the cause of epilepsy but may trigger a seizure on some occasions.

Possible triggers may include:

  • Stress or anxiety.
  • Heavy drinking.
  • Street drugs.
  • Some medicines such as antidepressants, antipsychotic medication.
  • Lack of sleep, or tiredness.
  • Irregular meals which cause a low blood sugar level.
  • Flickering lights such as from strobe lighting.
  • Periods (menstruation).
  • Illnesses which cause a high temperature (fever), such as flu or other infections.

If you suspect a trigger it may be worth keeping a diary to see if there is any pattern to the seizures. Some are unavoidable but treatment may be able to be tailored to some triggers. For example:

  • Keeping to regular mealtimes and bedtimes may be helpful for some people.
  • Learning to relax may help. Your doctor may be able to advise about relaxation techniques.
  • A small number of people with epilepsy have photosensitive seizures. This means that seizures may be triggered by flickering lights from the TV, video games, disco lights, etc. Avoiding these may be an important part of treatment for some people. (Photosensitive epilepsy can be confirmed by hospital tests. Most people with epilepsy do not have photosensitive seizures and do not have to avoid TVs, videos, discos, etc.)

Epileptic Seizures 1

You will find it won’t be very often I do post like this as I don’t suffer seizures on a daily basis.

Yesterday 14 June 2020 I suffered two seizures one Simple and one Complex. Fortunately they didn’t occur literally one after the other, which can sometimes be the case if i take two in a day.

The seizures (or turns as I refer to them as) were approximately ten hours apart.

The strange thing for me I suppose was I was unusually quiet for a while after the Simple Partial, where as it’s normally the other way around I usually go quiet after a Complex Partial seizure

Epilepsy trained dogs

Epilepsy is the most common neurological illness, with over 600,000 cases in the UK. Thirty per cent of people with epilepsy are unable to control their seizures through medication. Instead they live with the fear of an oncoming seizure which can occur at any time. This fear affects everything they do, limiting their independence and ability to live an active life.

Seizure alert dogs are trained to provide a 100% reliable warning up to 50 minutes prior to an oncoming seizure. They give time for their owner to find a place of safety and privacy as they have their seizure.

Around 1,000 people with epilepsy die each year and research suggests that most of these deaths are sudden and unexpected. The warning provided by a seizure alert dog means that a client can remove themselves from any danger and have a seizure in a safe environment.

With the confidence that they will be alerted in advance of any seizure, our clients are able to live more independently. Day-to-day tasks, including going to the shops, cooking, ironing and having a bath, which would previously have been hazardous, are now manageable on their own and in safety.