EPILEPSY AND YOUR LIFESTAGE
What does having epilepsy mean to me?
Up to 10% of people will have a seizure at some time in their life. For most, this will be a single isolated event,
but others will have more seizures and so will eventually be diagnosed as having epilepsy.
Some people are relieved to learn what is causing their “blackouts”, “turns” or “peculiar feelings”.
But for many, a diagnosis of epilepsy can be distressing news - it is not what they were hoping to hear.
Coming to terms with epilepsy can be similar to coming to terms with any other major life event. Fear of the unknown is a normal response. Most people have heard of epilepsy but probably don’t really understand what it means and what impact it might have on their lives.
When you were told that you have epilepsy, your doctor probably told you something about what to do, and not to do.
But many people have found that they later realise that they still have lots of unanswered questions.
So we’ve listed some of the questions that people have asked us and the answers that we hope will help you.
Tests
How can the doctor say I have epilepsy when the tests are normal?
After having a seizure, most people will have a range of tests including EEG, CT and MRI scans. When they are told that the results of these tests are “normal”, they wonder why the doctor is still saying they have epilepsy. These tests might give information about the activity and structure of your brain and can sometimes assist in evaluating the likelihood of more seizures occurring, but they do not always prove or disprove epilepsy.
The most important aspects needed for this diagnosis are the medical history and a detailed description of what happened before, during and immediately after the episode. Neurological examination might also give some clues.
If you have had more than one seizure, or if the doctor thinks that it’s very likely that you will have more seizures, it will be called epilepsy.
Appointments
What should I do if I have another seizure before my next appointment?
Firstly, the people around you should follow the first aid guidelines for seizures.
So help them by giving them some information about what to do if you have a seizure. If they feel at all unsure what to do, they should call for an ambulance.
Contact your doctor if you are at all concerned about what had happened. It’s also very helpful if you can get a detailed description of what occurred before, during and after the seizure, as this can help your doctor decide the most appropriate treatment.
How often will I need to see my doctor?
After people have a seizure, most are often referred to a neurologist, and sometimes an epileptologist (a neurologist who specialises in epilepsy and seizures) - either privately or at a hospital First Seizure or Epilepsy
Clinic.
Children are often referred to a paediatrician who may then refer the child on to a paediatric neurologist if necessary.
Once a diagnosis has been reached and treatment decided upon, you will be given a further appointment to check your progress. There is often some “fine tuning” involved to get the treatment just right for you. This may mean the dosage of your medication might be adjusted or you might even be changed to another medication.
If you had seen a neurologist at a hospital, you might then be referred to a hospital run epilepsy clinic, or you may be referred back to see your GP for ongoing health care.
When your seizures are under control, you will probably only need to see a neurologist for check-ups, usually once or twice a year.
What can’t I do?
Many people are concerned about how epilepsy will change their lives. But having epilepsy should not prevent you from doing most of your normal activities. In fact, most people will achieve control of their seizures and will return to their “normal” lives.
Medication will certainly help prevent a seizure, but it’s still worth remembering that the management of epilepsy is in your hands and it’s your responsibility to remember take medication regularly, as directed by your doctor.
Seizures can be provoked by life style factors such as lack of sleep and excess alcohol, so get to recognise these and work on ways that you can avoid or minimise these “triggers”.
Seizures may also result in injuries which can occur when people fall or lose their alertness. So be mindful of situations where your surroundings could lead to severe injuries. These can include heights, around fires and heaters as well as in and around water, especially hot water, and around machinery.
Also, some people recognise that there are times when they are more likely to have seizures, such as first thing in the morning. If you have a predictable pattern, try to avoid risky activities during these periods.
Can I still drink alcoholic drinks?
Most people with epilepsy can safely consume small amounts of alcohol, but it can affect people very differently.
Some find that alcohol might trigger seizures or it may reduce the effectiveness of their medication. Very often, people find that the effects of alcohol are exaggerated by their anti-epileptic medication.
So discuss this issue with your doctor and be guided by their recommendation on the amount that it is safe for you.
It is vitally important you don’t stop taking your medication because you are planning to have a big night out.
Suddenly stopping your medication in combination with sleep deprivation and heavy alcohol consumption can trigger a very serious and sometimes dangerously prolonged seizure that might require an emergency hospital admission.
Can I still use my computer and watch TV?
A small proportion of people with epilepsy are photosensitive - they find that flickering lights or certain patterns of colours can trigger seizures.
However, today’s computer screens and televisions have minimal flicker and won’t normally trigger seizures, but the flashing actions in some computer games might be a problem.
Even if you are not photosensitive, be aware that it’s easy to spend hours in front of a computer or TV
and long hours of concentration can cause you to become tired, which can increase the likelihood of seizures.
Can I still play sports and exercise?
Anything that helps with your general health and fitness is to be recommended. So if part of your normal routine is working out at a gym, or playing team sports, there is probably no need to change that. However, you might want to alert those around you that you have epilepsy and tell them what to do if you have a seizure.
The safety of the activity is the main consideration. So if your seizures are not yet under control, it is best not to consider high risk activities where there could be severe injury if you lose alertness or consciousness.
In some individual sports, like swimming or bike riding for instance, it would be prudent to have someone accompany you to help if you have a seizure.
Driving
When will I be able to drive again?
This is often one of the first questions asked. Most doctors understand that not being able to drive, even for a short period, can cause difficulties. But they also don’t want you to have a seizure while driving.
So, the period before you can resume driving can vary, depending on your type of epilepsy, the risk of having more seizures and your response to treatment. Your doctor will take these factors into account when making the recommendation to VicRoads and it is VicRoads who ultimately make a decision on your ability to drive.
Do I have to inform VicRoads or does the doctor do that?
It is your legal responsibility to advise VicRoads of any medical condition that can affect your driving ability.
VicRoads will ask for a written report from your doctor and they will then advise you when you will be allowed to drive again.
How will epilepsy affect my work?
Firstly it is important to understand that most people with epilepsy lead active and normal lives. A diagnosis of epilepsy is compatible with most professions except for few involving working with heavy machinery or commercial driving etc.
Do I need to inform my work that I have epilepsy?
Many people are concerned about how epilepsy will affect their ability to work in their chosen area. But who and when you tell people about your epilepsy is very much up to you. There is no legal obligation to disclose any disability or health condition - unless it is likely to affect your job performance or your ability to work safely.
However, many people find that their employers and work colleagues will want to help them. So if you are likely to have seizures at work, you might find it beneficial to let them know what happens during your seizures and what you want them to do to help make you safe during a seizure.
Can my work make my seizures worse?
Many people find that their seizures can be provoked by lack of sleep. So if you work long hours or work varying shifts, you might want to look at ways to make sure that this doesn’t overtire you.
Stress might also aggravate seizures in some people. These days, however, most people will recognise that their work life, and very often home life, can be stressful. This is very normal and very difficult to avoid.
Recognising when your stress levels rise, and finding practical ways to manage this, will help.
How do I stop people fussing over me?
People with epilepsy often have no direct experience of what their seizure looks like, particularly if they lose consciousness during their seizures. They often wonder why other people are so concerned about them.
But family, friends and work colleagues are usually concerned about you, particularly if they have seen you have a seizure.
Helping them understand what is happening to you and what they can do to help if you do have a seizure, will help them feel more relaxed around you.
Medication
Can I be sure that anti-epileptic medication will prevent me from having seizures?Anti-epileptic drugs (AEDs) are absorbed into the blood stream and carried to the brain to help subdue the “electrical storms” which are seizures. There are now many different drugs used to treat epilepsy and more than 70% of people with newly diagnosed epilepsy eventually become seizure-free on one or sometimes a combination of medications.
Your doctor will probably suggest commencing on an AED which has been shown to work best for your type of seizure and epilepsy. However, you might find that the dose or type of drugs will need to be adjusted until you find the right combination to control your seizures and without unwanted side affects.
But, be aware that the medication is to help prevent seizures occurring - it will not “cure” your epilepsy.
Achieving complete control of seizures on medication may be relatively straightforward and quick for some people, but unfortunately, for others it can be a long process. Also, not everyone diagnosed with epilepsy is always able to have all their seizures prevented with medication and other treatment options can sometimes be explored.
What should I do if I accidentally miss a dose of my tablets?
AEDs help to prevent seizures, so it is important that you maintain the correct level of your medication in your blood stream at all times.
If you forget a tablet, or are unsure if you have taken it, it should be taken as soon as you remember it, and then take the next dose at the usual time. This might make you feel a little slow or tired for a short time, but it will help to prevent a seizure occurring. Carrying a backup dose with you, or having some tablets at work, can be helpful for these situations.
Will the tablets cause problems with my other medication?
The majority of other medications will not be adversely affected by AEDs. However, it has been found that some AEDs will reduce the effectiveness of the contraceptive pill. And sometimes the contraceptive pill can reduce the effectiveness of some AEDs.
So, the best option is to always check that your doctors are aware of all of the medications that you take.
And check with your pharmacist even when you purchase any “over the counter” and “natural” medications.
Will there be any side effects with the medication?
Most people are concerned about how the medications will affect them after hearing some horror stories in the media.
We are all different, and most of the medications prescribed for us over our lifetime will be well tolerated and yet some of us may find that taking a certain tablet may cause some side effects.
Unwanted effects of anti epileptic drugs may include drowsiness, fatigue, insomnia, nausea, weight gain or weight loss, vision changes and unsteadiness. Some reactions, such as an allergic rash, require immediate attention.
When you start on medication, your doctor will probably suggest beginning at a low dose with a gradual increase. This is generally to allow your body to adapt to the medication and so minimise any of these unwanted side effects.
It is important to discuss any concerns you may have with your doctor. This will often put your mind at rest and will save unnecessary worry and stress, both of which can add to the difficulty of gaining full control of seizures.
Can anti epileptic medication do any harm to my body in the long term?
There is an increasing amount of research about the effects of AEDs and why people react differently.
For instance, it appears that some of the “older” types of AEDs, if taken for very long periods, might affect bone density in some people and may be the reason some people have their medication changed.
Research is being done in Australia and around the world to help clarify this and other issues.
However, it is important to remember that seizures can be dangerous, and are usually much more of a risk than side effects from the medication.
When I stop having seizures, will I be able to come off the medication?
Commencing medication does not always mean that it must be taken for life.
There are many different types of epilepsy and the treatment and prognosis varies between people. Ask your doctor what type of seizures and epilepsy you have and what the prognosis is for you.
Regular medical reviews are recommended and some people find that they may need medication for only a limited time, usually a few years. But some people find that taking medication becomes a part of their lives and doesn’t cause any difficulties. For them, the option of coming off medication and possibly having a seizure, with all the difficulties that can result from this, such as not being able to drive for a while, is not worth the risk.
Whatever your situation, do not stop your medication suddenly as this may trigger a seizure, which can sometimes be prolonged, resulting in an emergency admission to hospital.
Discuss this with your doctor first to understand the options available to you.
Can surgery help stop my seizures?
If your seizures have a “focus”, it might be suggested that you have further tests to assess the possibility of treating the source of your seizures with surgery. But if your seizures do not begin in one part of your brain, then surgery is not an option.
However, most people still only explore this option if they have difficulty getting seizure control with AEDs.
And even after surgery, most people will stay on medication, at least for a few more years.
What causes epilepsy?
Epilepsy means a person has recurring seizures, but it does not indicate what may be the underlying cause.
In fact, even with increased learning about this condition, more than 60% of people still do not find the cause of their epilepsy.
In many cases, epilepsy is the result of an injury or malformation to the brain.
One study found the estimates of the causes to be:-
| Infections (eg meningitis) |
3% |
| Degenerative conditions (Alzheimer’s etc) |
4% |
| Tumours |
4% |
| Trauma (accidents or surgery) |
6% |
| Congenital (present at birth) |
8% |
| Vascular (strokes etc) |
10% |
| Idiopathic (genetically inherited & unknown causes) |
65% |
| (Source : Epilepsia 1993;34:453-468 ) |
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Is it something I can grow out of?
To answer this, you first need to know what type of epilepsy you have and if there is an evident cause.
If your epilepsy is as a result of a structural lesion, then whilst it remains and aggravates your brain, it is unlikely that your epilepsy will “go away”. However, there are some types of epilepsy where the chances of growing out of the condition are very high. Your prognosis is something that you should discuss with your doctor.
Other issues
My partner and I were planning to start a family. Should this be a concern now that I have been diagnosed with epilepsy? Will the medication have any effect on the baby?
Many people ask what impact epilepsy might have on a developing baby and a parent’s ability to safely care for their children. Most women with epilepsy are able to conceive and have normal, healthy children, but there are some precautions that can increase the likelihood of delivering a normal baby.
Some AEDs may have an adverse affect on the growing foetus, but then so could having seizures during pregnancy.
The key is to discuss this issue with your epilepsy specialist prior to conception so if it is necessary your doctor can change your medication to something that is less likely to harm the baby. It is also strongly recommended that women take folic acid (5-10mg daily) prior to conception because it may reduce the likelihood of certain foetal abnormalities.
The safety of an infant or child might be at risk if their mother or father has a seizure which causes loss of awareness when caring for the child. So give some thought about how to bath, change nappies, or feed and supervise the child safely.
What are the chances that my child could develop epilepsy?
Again, this depends very much upon your type of epilepsy. If your epilepsy has been caused by an injury, then the risk of “passing it on” is low. But if there is a high incidence of epilepsy in your family, then the risk would be somewhat higher.
Will my memory be affected by epilepsy?
Many people may not recall much about what happened before, during and soon after the seizure and wonder if their memory will deteriorate because of epilepsy. This depends very much upon your type of epilepsy and the control of your seizures.
However, many things in our busy lives can affect our concentration and worrying about how to deal with a new condition can add to these. So getting control of your seizures will help.
It has also been found that people with some types of epilepsy may have mild electrical disturbances in between seizures. In fact, this is something doctors look for on your EEG. These can cause some interference in brain function & might affect concentration and subsequently the absorption of new memories and the retrieval of stored memories.
But there are many techniques that can help to minimise the impact of any memory problems on your life. Getting to understand your difficulties can be the first step in finding different ways to deal with them.
Can epilepsy be fatal?
It has been shown in many studies that people with epilepsy are two times more at risk of death than the general population. This may be as a result of trauma during a seizure (eg, in water), but there is also a rare phenomenon called SUDEP (Sudden Unexpected Death in Epilepsy).
This occurs where people with epilepsy, often young and in relatively good health, die without warning.
The cause is still unknown. However, research so far suggests that disorganized electrical brain activity during a seizure may affect heart activity and blood flow or that a seizure may trigger an abnormal heart rhythm, and this, combined with depressed breathing during a seizure, may sometimes be enough to cause death.
The estimated risk varies however, a study at the Mayo Clinic in USA found that SUDEP was rare, accounting for just 1 death in 600 among people with epilepsy.
But, whatever the cause, the best advice we can give is to get seizures under control as much as possible, take your medication regularly as directed and avoid sudden drug withdrawal.
Also, take the condition seriously and work at ways you can reduce the risks of seizures.
Will it affect my sexuality?
This is a complex issue and many factors can influence a person’s sexual health. Many people with epilepsy experience no adverse sexual outcomes. And when they do occur, they can often be helped.
It has been found that seizures themselves can sometimes interfere with the production of the hormones that both men and women need to be sexually active.
Also, your anti-epilepsy medication may not only make you tired, especially as you are just getting used to it, but sometimes it can interfere with your libido and even your capacity to be aroused.
But also remember that age, weight, stress, depression, tiredness, other health problems and so on can all play an adverse role. Most of these can be made worse by having to deal with seizures, particularly if you do not share your feelings with your partner.
If you are having problems you should not let them go on untreated. If your doctor is unable to help you, it can be very useful to ask to be referred to a specialist.
In Summary
Epilepsy varies from person to person, so get to understand as much as you can about your condition and what you can do to manage it. It is also important to get accurate information about your epilepsy from reliable sources.
There is a lot of support available to you from the trained staff at the Epilepsy Foundation, so always remember to ask any questions that might be of concern to you or your family.
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Support Nyah and families just like hers by donating to our Christmas Appeal. We need to raise $181,000 to support programs like our emergency medication training.
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Support Nyah and families just like hers by donating to our Christmas Appeal. We need to raise $181,000 to support programs like our emergency medication training.
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