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A to Z of Epilepsy - D

 

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Death

There are less than 100 epilepsy related deaths a year in Scotland. Understanding the risks for your type of epilepsy can help you to stay safe and minimise your risk. Contact our helpline for more information on this.

Our Staying safe with epilepsy guide will give you useful hints and tips on how to stay as safe as possible.

There is a medical emergency called status epilepticus. This is where someone has a seizure, or a series of consecutive seizures, with no recovery in between, lasting for 30 minutes or more. Status epilepticus is rare but is more likely if you have uncontrolled seizures. Our First Aid for seizures guide tells you more about status epilepticus and how to reduce your risk.

Half of all epilepsy related deaths are due to Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is when a person with epilepsy dies suddenly and unexpectedly and no other cause is found. Your epilepsy specialist nurse can give you more information on SUDEP.  You can also phone our helpline 0808 800 2200 for more information.

If you have been affected by an epilepsy related death, SUDEP Action can provide further support for you and your family. For information or bereavement support including any questions about a post mortem or fatal accident enquiry, contact their bereavement support team on 01235 772852 or email: contact@epilepsybereaved.org.uk

Déjà vu
Most people will have experienced feelings of déjà vu at some point. This is where you feel as though you have already experienced a particular moment. Some seizures may cause you to have a feeling of déjà vu. These are called simple partial seizures. The feelings can sometimes be a warning that another seizure will follow. There is more information on simple partial seizures in our Seizures explained guide. Alternatively you could contact our helpline.
Dementia
People with dementia can have an increased chance of developing epilepsy.  This is because dementia can cause damage to the brain which can lead to seizures.  Epilepsy can be a difficult condition to diagnose because it can sometimes be confused with other medical conditions including dementia.  It is important that a neurologist or epilepsy specialist looks into the cause of any episodes or seizures to give an accurate diagnosis.
Depression

People with epilepsy are more likely to experience depression. This could be for a number of reasons. Sometimes people struggle to cope with their epilepsy on an emotional level. It may be that the epilepsy itself is causing the depression. For example, if seizures are occurring in an area of the brain that controls emotion, any disruption from a seizure could affect a person’s mood. A few of the older anti-epileptic drugs (AEDs) can also affect mood. You may experience a change in mood before a seizure (called a prodrome).

If you are feeling down our Emotional wellbeing guide may help. It is also important to let your doctor know how you feel. You can also call our helpline on 0808 800 2200 to speak to someone.

Some anti-depressants may make people with epilepsy more likely to have seizures. There are a number of treatment options for depression and your doctor can tell you a bit more about these. These could include counselling or self-help groups.

Diagnosis

Epilepsy can sometimes be a difficult condition to diagnose. This is because it can be confused with other medical conditions. A neurologist or epilepsy specialist should be involved in the diagnosis process. The diagnosis of epilepsy is based on your medical history and eye-witness accounts of your seizures together with the results of tests and investigations. The consultant may use a number of tests to identify possible causes, the type of epilepsy you have and the most suitable treatment for you.

Electroencephalogram (EEG) tests give the doctor information on how the brain works. Brain scans can show evidence of any structural abnormalities in the brain. Not everyone with a diagnosis of epilepsy needs to have an EEG or a brain scan. It will depend on factors such as your age, your type of epilepsy and any possible causes.

For more information contact our helpline or have a look at our Diagnosing epilepsy guide.

Dial-a-bus

Dial-a-bus is available for people who receive the higher rate of the mobility component of Disability Living Allowance. It is for people who cannot use standard buses or find this difficult. The service involves organising the dial-a-bus to take you places such as visiting people or going shopping.  Contact your local authority to find out if such a scheme operates in your area or phone SPT on 0845 128 4025, or visit their Dial-a-bus website.

Diamox

Acetazolamide is a generic drug used to treat tonic-clonic, juvenile myoclonic, absence and partial seizures. A common brand name for this drug is Diamox.

Side effects are a concern for many people with epilepsy. Most people, who do experience side effects, find that they are mild and may reduce as their body becomes used to the medication. It is important to discuss any concerns you have regarding side effects with your doctor. Side effects for acetazolamide include: headache, lethargy, nausea, diarrhoea, pins and needles, dizziness, irritability, depression, loss of appetite and weight.

With all AEDs it is important to make sure you get the same make each time. There can be small differences between different versions or makes of each drug. If you get a different make, this could trigger a seizure for some people. If the packaging of your AEDs looks different speak to your pharmacist, epilepsy specialist nurse, GP or consultant about this. There is more information on AEDs in our Epilepsy and treatment guide.

Diary

You can use a seizure diary to keep an accurate record of seizures. It can be helpful to include different information, such as:

  • The type of seizure
  • When it happened
  • How long it lasted
  • How you felt before and after the seizure
  • If you recently changed you anti-epileptic drug (AED)
  • Any possible triggers

Take your diary with you to clinic or hospital appointments as this information can help you and your epilepsy specialist find any patterns or possible seizure triggers. We have seizure diaries and you can contact our helpline for a free copy.

You can also use SeizureTracker, a free online resource useful for tracking seizures and recording relevant information.

Diazepam

Diazepam is often used as an emergency medication for long seizures. It is given rectally as the medication works faster this way. Before this can be done, written consent is needed from the person with epilepsy, or by someone who gives legal consent on their behalf. It is best to arrange for this consent when the medication is prescribed.

Training is needed before rectal diazepam can be given. Epilepsy Scotland can provide this kind of training on emergency medication.

An oral version of diazepam is sometimes prescribed to be used daily to maintain seizure control. It can also be prescribed for use between serial seizures.

Diet

If you think a certain food could be triggering your seizures start keeping a food and seizure diary. To date, very little evidence exists that foods can trigger seizures. There is, however, some limited anecdotal evidence that monosodium glutamate (MSG) and aspartame (artificial sweetener) can trigger seizures in some people.

Missed meals and low blood-sugar levels are more likely to trigger seizures in some people. It is also important to stay hydrated and drink plenty of fluids. The NHS recommends that in the UK, you should aim to drink at least 1.2 litres (6-8 glasses) of fluid a day.

The ketogenic diet is a diet high in fat and very low in carbohydrates. It is sometimes used to treat children who have epilepsy which does not respond to drugs.  This restrictive diet has to be prescribed by a dietician and needs to be carefully monitored.  It is not something you can attempt yourself.  The charity Matthews’ Friends provides lots more information on this diet.

Diplopia
Diplopia is another name for double vision. Some anti-epileptic drugs (AEDs) can cause side effects including double vision. Speak to your doctor, epilepsy specialist nurse or consultant if you are experiencing this problem.
Disability Discrimination Act
The Disability Discrimination Act (1995) has been replaced with the Equalities Act (2010). You are likely to be covered if your epilepsy or disability affects your day to day life. You are also likely to be covered if your epilepsy would affect your day to day life if you stopped your medication. The Act protects people from being discriminated against or treated less favourably due to their disability and covers employment, education and access to goods and services. For more information see our Equality Act factsheet or contact our helpline.
Disability Employment Advisor (DEAs)
Disability Employment Advisers are based at Job Centres. They give you extra support if you have epilepsy or another health condition and are looking for work. They can also pass on information to employers and assist them in hiring someone with epilepsy on a trial basis. Contact your local Job Centre Plus to make an appointment to see a Disability Employment Advisor.
Disability Living Allowance

Over the new few years, the government is changing the Disability Living Allowance (DLA) to Personal Independence Payment (PIP).  At the moment, those in receipt of DLA in Scotland will not be asked to switch to the new benefit until 2015.  DLA is a benefit often paid to people with epilepsy. It has two parts or ‘components’. There is a care component if you need help to look after yourself, or someone with you to keep you safe. There is also a mobility component if you can’t walk or if you need help getting around. You may be eligible for just one or both components. The care component and the mobility component are paid at different rates depending on how your disability affects you in each area.

DLA is intended for people under 65 years old. If you are over 65 you can apply for Attendance Allowance.

Benefits in general are currently undergoing many changes. For the most up to date information on benefits speak to your local Citizens Advice Bureau or your local Welfare Rights Officer. Further general information on benefits can be found in our factsheet Financial assistance.

Disabled Person’s Railcard

People with epilepsy can buy a Disabled Person’s Railcard if they take epilepsy medication but continue to have regular seizures. The initial cost is £20 for a year or £54 for three years but this gives a third off all journeys. The same discount applies to another adult travelling with you. Call 0845 605 0525 or visit the Disabled Person’s Railcard website.

The Scotland wide free bus pass can also give you a discount on rail fares in some areas. Contact our helpline for more information on this.

Discrimination
People with epilepsy can sometimes experience discrimination often due to ignorance and misunderstanding of the condition. Epilepsy Scotland works to fight against this kind of discrimination. For more information, contact our helpline in total confidence.
Downs Syndrome
Epilepsy is more common in people with Down’s syndrome. For those who are going to develop epilepsy it will usually be in their first year of life or when the person is in their 30s. For more information on Down’s syndrome visit Down's Syndrome Scotland.
Driving
If you have been seizure free for twelve months you can get an ordinary driving license. You may also be able to get an ordinary driving licence after one year if the only type of seizures you have had in the past one year are sleep seizures only. The DVLA also need to be sure there is no other reason why you should not have a licence. Anyone who has had a seizure, including any aura sensation, needs to stop driving and contact the DVLA. The regulations for Large Good Vehicles (LGV) and Passenger Carrying Vehicles (PCV) are different. See our Epilepsy and driving factsheet for more information.
Drop Attacks
Drop attacks are another name for akinetic seizures.
Drugs (Epilepsy)
Drugs used to treat epilepsy are known as anti-epileptic drugs or AEDs.
Drug Interactions

Anti-epileptic drugs (AEDs) can affect each other, as well as other medications. One AED can raise or lower the level of another AED in the blood when they are taken at the same time. Some AEDs reduce the effect of the contraceptive pill and the emergency contraceptive pill. Other medications taken for different conditions may also interact with AEDs, and your doctor or specialist will have taken this into account when prescribing these. For example, some antidepressants, antihistamines (drugs frequently taken for hayfever), and anti-malaria tablets can make your AED less effective and may make seizures more likely. 

Always read the information leaflet in the packet. Your doctor or pharmacist can give you more information on any prescribed or over-the-counter drugs you may take. Some herbal medicines and aromatherapy oils are not safe for people with epilepsy. There may not be adequate information in the packet about this. If in doubt, check with your doctor or pharmacist.

Never stop any prescribed medications, or vary the dosage, except on the instructions of a doctor, as this can be dangerous. 

See also Contraception