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Epilepsy is a condition where people get frequent seizures. It can cause a spectrum of symptoms, depending on the type of epilepsy that you have and what may have caused it.
There are all different kinds of seizures that a person can have, and how they affect each individual will be different. Some people with epilepsy may get seizures daily, and others can go years without having a single episode.
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When you perform a purposeful action, like moving your arm, the part of the brain which controls your arm sends electrical signals down pathways to your arm, telling it to move.
When you're not doing anything, your brain is still firing electrical signals, for example, to control breathing, or so you can think about what you’re going to eat for dinner tonight. There is a certain amount of electrical activity which is normal in the pathways of your brain at any given time. If this activity becomes uncontrolled, then this can cause a cycle of uncontrollable electrical activity which causes you to have a seizure.
Depending on where this uncontrollable electrical activity is happening in your brain, people’s symptoms from a seizure will be different. For example, if only the part that affects your arm is firing uncontrollably, then you might have uncontrollable arm movements on one side. The different types of seizures are classified in different ways:
Simple Partial Or Focal Seizures
The example above, where just one arm is twitching, would be an example of a simple partial seizure, or focal seizure. You are awake and aware of what is happening in this type of seizure. Other symptoms may include:
- Feeling very strange
- A feeling of déjà vu
- A strange taste, or smell.
Complex Partial Seizures
Sometimes, simple partial seizures progress into complex partial seizures. This is where you lose awareness of what is happening around you, but your body movements are not the same on both sides. It may appear that you are behaving very oddly and not responding to people. Some examples would be:
- Making strange noises
- Smacking your lips
- Fiddling with objects
- Odd jaw movements.
Tonic Clonic Seizures
This is generally what people imagine when they think of a seizure. In this type of seizure a person becomes very stiff and then they start to shake. Their arms and legs will move together, and they might bite their tongue, or lose control of their bladder and bowels.
This is where someone, usually a child, loses awareness of what is going on around them for a brief period of time. They may stare off blankly into space, or have twitching of their eyelids. It generally lasts less than 15 seconds, and the person will not remember anything that has happened in that time.
Less Common Type Of Seizures
These can include random jerking movements, confusion, suddenly becoming stiff without jerking movements, and many more patterns of symptoms. It can sometimes be difficult to identify whether a person is having seizures, or not, due to the wide range of ways in which they present and the multiple other things which can cause the same symptoms.
Who Is Most Likely To Get Epilepsy?
Epilepsy is more commonly diagnosed in children, and people aged over 60. It can, however, happen at any age. If you have a relative with epilepsy (mother, father, or sibling) then your risk of epilepsy is about twice that of the general population.
How Is Epilepsy Diagnosed?
If you have had a seizure, you will probably be referred to a neurologist. This is a doctor who specializes in nerves and the brain. It may be that, based on your history alone, you could be diagnosed with epilepsy however, it can be difficult to tell if someone has had a seizure, or not. Other things which have similar symptoms are faints and migraines. Issues with your heart can also sometimes cause you to have brief collapses, and this could be another cause.
You may be referred for an EEG, or electro-encephalogram. This is where small electrodes are attached to your head on stickers and the electrical activity in your brain is recorded. Sometimes, this can confirm that you have been having seizures, but it can also be completely normal in someone with epilepsy.
You may also be referred for imaging of your brain. This could be a CT scan of your head, or an MRI scan. These take pictures of your brain which could show structural issues, such as a brain tumour. Again, these are likely to be completely normal in epilepsy.
Sometimes it is not possible to say whether a person has epilepsy, or not, following one episode which may, or may not, have been a seizure. It may be decided to wait and see if a person has further seizures before making any decisions about a diagnosis, or treatment.
I Have Had A Seizure, Does That Mean I Will Get Epilepsy?
No. Around 5% of people will have one seizure in their lifetime. Only around 1 in 50 go on to have epilepsy. Most people will not go on to have any further seizures, and will not require any treatment.
In children, it is quite common to have a seizure with a fever. These are known as febrile seizures, and happen below the age of 3 years. Your child may have had a fever earlier in the day, or be experiencing one at the time of the seizure. The seizure should last less than 5 minutes, and will generally resolve on its own. Children who have had febrile seizures are no more likely to develop epilepsy than anyone else in the population.
What Are The Treatments for Epilepsy?
If you are having frequent seizures, a neurologist is likely to start you on medication, known as an anti-epileptic. Around 50% of people who are started on an anti-epileptic will have their seizures under control by a year of taking the medication. The other 50% will require further management by a neurologist, and may have their medication changed.
Anti-epileptic medications have some common side effects. These include:
- Feeling tired all of the time
- Swollen gums
- Hair loss.
If you develop rashes whilst taking your anti-epileptic medication, it is important to see your GP. Some skin rashes caused by anti-epileptic medications are a sign of a severe reaction to the medication, and this can happen even if you have been taking the same medication for years. This condition is known as Stevens-Johnson syndrome, and is very rare.
If anti-epileptic medications aren’t working, then you may be considered for brain surgery. This will only be considered in cases where a very small part of the brain is responsible for causing the seizures, and this can be identified on brain imaging or an EEG. It is also necessary for this part of the brain to be able to be removed safely, and this will depend on how big it is, and where it is located.
Specialist neuro-surgeons (surgeons who are trained specifically on performing surgery on the brain) will be involved in the decision making process. Anyone who is being considered for this kind of surgery will have their own individual risks of surgery discussed with them before deciding to opt for surgery, or not.
Surgery has the benefit of being able to possibly cure the epilepsy, though it doesn’t always work. Anti-epileptics do not cure epilepsy, but just stop, or reduce, the frequency of the seizures whilst you are taking the medication.
Other less common treatments include vagal nerve stimulation (VNS) and deep brain stimulation (DBS). This is where a device is used to create bursts of activity either in the vagus nerve (which goes from your brain down to your heart), or directly in your brain. This can reduce the frequency of seizures, but both procedures are rarely used, and when they are, they are only used in the most severe of cases.
What Are Epilepsy Triggers?
There are some things which commonly cause people with epilepsy to have seizures. Not everyone with epilepsy will be sensitive to these “triggers,” but for those who are sensitive to them, these are the most common causes:
- Lack of sleep
- Being hungry
- Alcohol and drugs
- Flashing lights (in around 3% of people with epilepsy)
- Having a high temperature
- Not taking epilepsy medicines as prescribed.
Of these causes, by far the most common is, forgetting to take epilepsy medication. If you are someone who suffers with epilepsy and knows that their epilepsy is made worse by these triggers, taking steps to mitigate them can vastly improve the frequency at which you get seizures.
Are There Any Issues With Epilepsy And Pregnancy?
If you have epilepsy and are considering getting pregnant, then you should speak to your GP. They can refer you for pre-conception counselling, where someone can go through all of the risks and how to minimise them with you. If you are already pregnant and have epilepsy, then do not stop taking your medications. This could increase the frequency of your seizures which could be bad for both you and the baby.
The main concern for pregnancy in women with epilepsy is that some of the anti-epileptic medications can cause issues with how your baby develops. Some medications are more likely to do this than others. The charity Epilepsy Action has a list of medications on their website that can cause issues with the development of a baby, and how likely they are to do so.
Is There Anything That People With Epilepsy Cannot Do?
Epilepsy can be a very debilitating condition. Most people who have epilepsy will be well controlled on medication, and the disease will have very little impact on their lives. For some however, it can be difficult to control seizures. There are a number of restrictions which come with having epilepsy as a disease. Some of these will be dependant on the type of epilepsy and how well controlled it is.
Most restrictions arise from a need to keep the person with epilepsy, and those around them, safe.
Sports And Leisure
It is important if you have epilepsy to make sure that if you go swimming, you do not go swimming alone. If you have frequent seizures, it may be best to avoid swimming altogether. Having a bath is also something that you should do carefully.
Other sports may also place you in danger if you were to have a seizure. Look at every situation you are about to enter and try to mitigate your risks. Also, consider the safety of others if you were to have a seizure. For example, if you were to go climbing, ensure that the safety of those with you would not be compromised were you to have a seizure. Make sure to wear a helmet if cycling.
If you have had a seizure, you will need to stop driving for a while and inform the DVLA. How long you won’t be allowed to drive depends on what type of seizure you have had, and if you have any more. People with epilepsy may be allowed to drive if they are seizure free for a period of time, and stable on their medication. This will be at the discretion of the DVLA and it is important to contact them for further guidance.
What Should I Do If I See Someone Having a Seizure?
When someone has a seizure it can look very dramatic. The important thing to remember is that most seizures will stop on their own without any treatment. The biggest risks for someone having a seizure is that they will hurt themselves by their own violent movements, or that they will be sick and inhale some of the vomit.
For this reason, the best thing that you can do is to put them into the recovery position. Make sure they are in a safe place and turn the person onto their side, holding them lightly there if necessary. Do not attempt to restrain their movements, as this could lead to yourself, or the person having the seizure, becoming injured. Once they are in a safe position, call 999.
It can be useful for you to make a note of the time that the seizure started. This can be used by healthcare providers when deciding how to treat the seizure when they arrive.
The British Red cross has issued some guidance on its website on how to perform first aid in someone who is having a seizure.
What Is The Prognosis of Epilepsy?
In the vast majority of cases, people with epilepsy see very little impact on their day to day life. If controlled, they will have the same life-expectancy as people without epilepsy.
In very rare cases, people with epilepsy can suddenly die. This is known as sudden unexpected death in epilepsy, or SUDEP. Around 600 people every year will die from SUDEP, and the reasons for why it happens are not well understood. Things you can do to mitigate your risk is to try to keep your seizures under control, by taking your medication regularly and avoiding seizure triggers.
SUDEP action is a UK based charity dedicated to researching SUDEP and helping the families of those who have suffered a bereavement. They have a wealth of information on their website, along with a helpline.
What If My Epilepsy Is Affecting My Work?
There are lots of different types of financial support available for people with epilepsy.
If you are taking anti-epileptic medications, you will be entitled to all of your medications free on the NHS. If you have to be off work sick due to your epilepsy, you will be entitled to statutory sick pay.
The NHS website has a list of some of the financial help you may be entitled to.
Should I Wear A Seizure Monitor At Night?
If you have frequent seizures, or care for someone who does, you may find that having a seizure monitor on at night provides you with some peace of mind.
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Epilepsy Action is a UK based charity dedicated to supporting people with epilepsy. Their website offers a wealth of information, and they operate a free helpline on 0808 800 5050. They also operate an online forum.
The Epilepsy Society is another charity which offers a helpline, support groups, and information on different topics to do with epilepsy.
Both charities fundraise towards finding better treatments for epilepsy, and to provide support for people with epilepsy who need it.
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Autism – a condition which affects how people socialise and communicate. It can range from people who have very minor symptoms, through to people with severe autism who can be completely non-verbal
CT (Computed Tomography) – a scan in which radiation is used to take detailed pictures of inside the body. It can be used in the brain to show large brain tumours, or strokes
Febrile Seizure – a seizure in childhood which is caused by fever. It is not related to epilepsy
MRI (Magnetic Resonance Imaging) – a scan in which a large magnet is used to take pictures of inside of the body. It produces more detailed images of the brain than a CT scan, and can show smaller strokes, or brain tumours. It also has the benefit of having no radiation
Neurologist – a doctor who specialises in treating the nerves and the brain