Wednesday, 24 March 2010
Dr. John Ball - Fairview Park Medical Centre
Rick O'Shea - 2fm DJ
Paul Sharkey - Brainwave - Irish Epilepsy Association
One in 200 children has epilepsy.
In more than half of the instances, there is no determined cause. In others it can be as a result of a brain injury or stroke, or tumors or genetic conditions such as TB.
In many cases, there is no family history of the condition at all. However, it would seem that some types of epilepsy do tend to occur more frequently in some families. Recent research has discovered that some forms of epilepsy have been linked to the inheritance of specific genes.
Friday is World Epilepsy Day.
What is epilepsy and when is it diagnosed?
The simplest way of putting it is that epilepsy is a disorder of brain electrical activity which can lead to various symptoms such as seizures of abnormal sensory activity , temporary loss of conscious or other movement disorders.It is recurrent by definition.
Can the condition be brought by a particular circumstance?
Yes. Although it must be pointed out that all seizures are not epilepsy. Any type of brain injury or trauma especially cerebral palsy for example which occurs in earlier years , makes people more prone to seizures and epilepsy.
What is a seizure?
Most seizures involve abnormal uncontrolable motor movements from abnormal brain activity.
Is anyone who has had a seizure said to have epilepsy?
No, There are important differences and seizures may be provoked by for example alcohol withdrawal in Adults to Febile convulsions in children so the terms "seizures and epilepsy" should be separated.
How can I recognise someone is having a seizure and what should I do?
Seizures are divided by medics as either complex ( where consciousness is lost ) and simple ( where consciousness is intact). To recognise a complex seizure it may be obvious with the person showing uncontrolled involuntary movements of either a part of or all their body. They may have lost control of their bladder during the seizure or may have some biting of their tongue.
They will not be responsive to you during the seizure and will have no recall of the event after. More subtle types of seizures may only involve short lived abscence of consciousness and may involve staring for a period of time without responding to things around them . these can be more difficult to diagnose and have been confused as poor students !They are known as "abscence seizures".
If you witness some one having a seizure try move them into a safe place and position ( on their side and away from anything which may harm them). Call for help and check for any bracelets of medication that may be useful.
Is there a warning period for the sufferer?
There may or may not be a warning or "aura" and this really depends on what part of the brain is involved at the start of the abnormal activity. Sometime people describe strange or recognisable smells or sensations just before the onset of their seizures.
Are there any triggers?
Triggers can vary from person to person and patients can become experts on their own triggers. Common ones include fatigue/ stress or alcohol withdrawal.
Living with epilepsy
What contraception should women with epilepsy avoid?
Women taking anti-epileptic drugs may interfere with their contraception medications and they may need to be on higher dose preparations. It would be important to discuss this with your doctor.
What worries do parents have for a child who has epilepsy? i.e. will they be on medication for the rest of their lives? Can they play computer games and live a normal life? Can they travel, play sports etc.
These are all understandable worries and questions; 70 % of people with epilepsy are successfully treated by medication and about half of these will be able to come off treatment.
Swimming alone is highly unadvisable but otherwise sports can usually be enjoyed without restriction.
Only 3-5% have photosensitive epilepsy and have the potential to be affected by strobe disco lighting or certain video games. Your specialist can usually tell if you are one of those who will be sensitive based on your EEG ( Electroencephalogram) . There are often simple guidelines which can reduce the impact to these patients (e.g. watching TV in a well lit room..see brainwave website for details)
Can someone with epilepsy drive?
There are certain restrictions on driving for people with epilepsy. They are there for their own sagety and the general public. In general if seizure-free for over a year then restrictions on driving will be lifted.
Are there any jobs that someone with epilepsy should avoid?
Heavy machinery; driving a bus /train or flying and anything involving swimming alone. Each case has to be considered on its own merits though.
Paul Sharkey -Brainwave The Irish Epilepsy Association
Is it true that the stigma of epilepsy is almost worse than the condition itself?
Someone with epilepsy is not too afraid of having a seizure. This they get over after the event. The most difficult part is dealing with people's reactions that have been in your company at the time. This can be very unsettling and it's very common for people to react with fear to you, even though it's just a lack of understanding of the condition. This causes numerous people with epilepsy to avoid these situations, and can make life very difficult.
Epilepsy has had a horrible history through the centuries and although in our modern world it has reduced, it is still a significant problem. It may sound unheard of but I've known people who have lost friends once they found out that they have epilepsy, due to fear that they will have a seizure, although very few people will admit that this would be the reason.
There are so many unofficial anecdotes about how this affects people in the workplace, the one that comes to mind is someone I know that was told that after having a seizure in work that he is no longer suitable for the job, even though it had nothing to do with his profession.
This is why people are reluctant to bring it up at work, and are never sure when the right time is to tell someone that they have epilepsy. What had happened when the case was investigated, was that this manager had had a previous, more traumatic experience with an epileptic in her past, and the fear was too much for her.
What are the guidelines for someone with epilepsy advising their employers?
Under law they don't have to disclose it, however they should at some point, otherwise it is more of a danger to themselves. The most important thing is to make the employer, or people you work with, aware that you have epilepsy, so that they will know what to do when or if you have a seizure. The more detail you give them the better, from what type of seizures you get, to what your warning signs are.
Each individual is different and Brainwave supply a support service for employers who are unsure how to be prepared in case of an employee having an attack. It is in every individual's right not to disclose their condition at an interview, and although there is never any proof, sadly there are cases where employees will discriminate against someone with epilepsy (e.g. he says that at one stage there was a study of five lads who were just out of school and only four of them are working, and the one that can't get a job is epileptic). Of course there are a million reasons why this could be, but it's a very common complaint for people with the condition.
However it is more dangerous to lie to your employer, as it is their responsibility to make sure they have the right information if there ever is a seizure.
What about if you are somewhere that you are anonymous and a seizure happens?
The most important thing is that someone calls for help. You could be having a seizure for a number of reasons, and one of the most common myths is that people try to help someone having a seizure by holding their tongue. This is completely incorrect, it is impossible to swallow a tongue, although they may bite down on it. There are huge amounts of instances where people arrive into A&E after a seizure with broken jaws and teeth, because someone tried to hold their tongue, and also people end up with serious hand injuries trying to help the person having the seizure. It is a complete medical myth that has someone lasted through the ages.
What advice would you give to parents whose children are diagnosed with epilepsy?
The diagnosis of a child with epilepsy can be quite a traumatic process, and parents can react as though this is the end of their child's happiness and freedom. Children with epilepsy can do anything that any other child can do, as long as they have been properly diagnosed and have it under control. They can play sports, computer games and all the other things that children do.
The main thing at this stage of their life is to encourage them to know about their condition and not be afraid of it. When parents try to suppress it or try to avoid the subject with their child, will lead to him/her being fearful as an adult and be unable to communicate their condition properly with their peers.
What about flashing lights on computers or teenagers being afraid to go to discos because of flashing lights?
To put this into perspective, this is only 3 - 5 % of people with the condition that are photosensitive. In fact a strobe light has the ability to put people without the condition into a seizure, and the reference to computers, and the fear of it bringing on a seizure is another myth that contributes to workplace discrimination. The vast majority of people with epilepsy are able to watch tv, go to discos and use computers as normal.
What about driving?
Any driver who is seizure free for a year is allowed to drive a car.
This rule can be very difficult for people with epilepsy. It means that they are reliant on public transport, which is fine for people in city areas, but there are virtually no public transport systems in rural parts, and it can lead to isolation if they are reliant on their family for transport. It's an area that people don't think about, but has huge implications.
There are restrictions on heavy goods vehicles, which is at the moment being reevaluated.
Rick O'Shea - Diagnosed when he was 16, he has been seizure free for three years.
When did you have your first seizure?
When I was sixteen (21 years ago). It was Christmas and I was at home. My mother said I gave a funny look and then I was on the floor and took the Christmas tree with me. I had a few in quick successions and ended up going to the doctor, getting a ECT scan and I've been on medication since for the rest of my life.
Did anything bring it on?
No, many people do have underlying reasons such as injury or conditions, but for me it wasn't even in my family history. I didn't have it for my first 16 years, and then all of a sudden I did.
Were you affected by a stigma?
I've always been very upfront about my condition, including to my employers. I've been very lucky in this respect because my employers were very nice, but I know that other people aren't as lucky, because people are cautious of the disease. I have had a seizure in work, but luckily it wasn't while I was on air.
Have you come across many misconceptions about epilepsy?
Yes all the time, the worst being when people think they should hold down their tongue if someone is having a fit, it's such nonsense and the worst thing to do.
Other things are that people don't really know what the condition actually means, and also more importantly, people have no idea how to react when someone has a seizure.
Do you carry an identity bracelet?
I wear a neck chain every day (mostly every day, sometimes I forget)
Is there anything in your life that you don't do because of your condition?
Well I'm three years free from seizures but I still don't drive. I don't want to risk buying a car and then not being able to drive it, so I'm happy to use public transport.