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Epilepsy Association of Western Australia (Inc.)
Annual
General Meeting Thursday October 30th 2008 @ 6.00pm
17th Annual Epilepsy
Seminar
Annual Audit 2008
www.epilepsy.org.au
Latest
Epilepsy News
Epilepsy Research
(Posh Spice)
Her
son Romeo has Epilepsy
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Living with epilepsy - from alcohol to water
sports
Many people have concerns about living with epilepsy. Each person experiences
epilepsy in quite a different way depending on the type, frequency and
predictability of their seizures. As we have already said, in most cases,
medication can stop seizures occurring – or at least, reduce them dramatically.
With a bit of forward planning, you can do whatever you want to do and enjoy it.
By learning to recognise your seizure triggers, you can either avoid them or
develop ways to minimise the risk. Sure, certain issues will arise and some
lifestyle adjustments may need to be made. But don't become obsessed by them.
You can miss out on many wonderful life experiences by restricting your
lifestyle unnecessarily. Epilepsy will have an impact on your life, but you can
minimise that impact by recognising those issues that affect you and managing
them in a positive way.
Driving
Driving is a very important part of Australian life especially for those living
in rural areas where one has to travel long distances to access services. Being
diagnosed with epilepsy and having to give up your licence for a time can throw
your life into disarray, particularly if your job involves driving. But it may
be for a relatively short period and once your seizures are controlled you will
be able to drive again safely and legally. During this time you may have to make
certain lifestyle adjustments and your epilepsy counsellor will be able to
suggest ways to help you get through this difficult time.
Assessing Fitness to Drive, published by Austroads, addresses all medical
conditions that may impact on a person's fitness to drive. The guidelines for
epilepsy have been developed by epilepsy specialists to assist with the
assessment of applications from people with epilepsy and are tabled below.
These guidelines are intended
to protect your safety and the safety of the community. Each application is
considered individually. The period that you must be free from seizures before
driving depends upon your type of epilepsy and the circumstances surrounding any
recent seizure you might have had. You may wish to discuss your individual
circumstances with your doctor. All Australian doctors have a copy of the
guidelines. Visit www.austroads.com.au to view or download a copy of the latest
guidelines.
A diagnosis of epilepsy doesn't mean that you can never drive. You can hold a
driver's licence or learner's permit as long as your seizures are well
controlled. If you believe that you qualify for a licence or learner's permit,
you are encouraged to apply. Application procedures differ in each state and
territory and these are outlined in Appendix C.
Alcohol
For those people who enjoy a social drink, epilepsy shouldn't stop you having
the occasional beer or two or a glass of wine with dinner. Most people with
epilepsy can safely drink a small amount of alcohol, however some people find
even small amounts of alcohol can trigger seizures. The credo 'all things in
moderation' applies here. Moderate drinking means having 2 standard drinks a
day. A standard drink is equal to:
• one small glass of wine (100ml),
• one middy of full strength beer (285ml),
• one nip of spirits (30ml)
Be aware of the quantity of alcohol you drink and don't let anyone persuade you
to drink more. Alcohol and antiepileptic medications interact in specific ways.
AEDs can make you more sensitive to the sedating effects of alcohol while
alcohol reduces the effectiveness of AEDs making seizures more likely.
Excessive drinking can result in poor seizure control due to late nights, missed
meals, or forgotten doses, while 'hangover' seizures are likely to occur as the
alcohol level in the blood falls. Some antiepileptic medications specifically
recommend that you not drink while taking them and some neurologists expect
their patients to follow this restriction to the letter – especially until they
get their seizures under control. Ask your doctor about the effects of drinking
alcohol with the medication you have been prescribed.
Sex
Lots of people of people worry unnecessarily about whether or not it is safe to
have sex when they have epilepsy or when their partner has epilepsy. Millions of
people living with epilepsy – either their own or that of a partner – will
happily attest to the fact that their sex lives are just fine.
For most of us sex is an important part of our lives and worrying about our
sexual abilities or about our sexual performance can lead to sexual problems. So
if you do experience a loss of libido or sexual energy speak about it with your
doctor. It may just be that the AEDs you are taking are contributing to a
reduced desire for sex. If this is the case it is usually easily remedied. There
is evidence that some epilepsy syndromes can reduce libido. It may not be a
great worry to some people, but it can be for others. It’s possible that a
person with epilepsy will feel less like sex than their partner. It is therefore
important that partners talk openly and supportively to one another about this.
For some men, there is evidence that actual arousal – rather than desire – can
be adversely affected. This was once thought to be a direct outcome of
particular antiepileptic medications for the particular people taking them. It
is now understood that for some people it is a direct consequence of their
epilepsy. If you have experienced this, tell your doctor. While it is not
necessarily something that can be fixed instantly, it is certainly possible that
some of the newer antiepileptic medications might be more helpful or that some
of the newer medications available for rectifying sexual dysfunction might be of
help.
Sex is a big part of our lives. Sexual thoughts and feelings are a constant part
of normal adult life. It is nevertheless, for many of us, a difficult matter to
raise with a doctor or counsellor. Nonetheless, if you have concerns about your
sex life and the impact of any aspect of epilepsy upon it, talking about it with
your doctor or epilepsy counsellor may be the best thing you can do. If they
cannot help you they can certainly support you in finding the solutions that you
would want.
If your doctor or epilepsy counsellor dismisses your concerns as 'nothing to
worry about' because you are too old or too young, or because they feel that sex
really isn’t such an important thing in our lives, then tell them that you
disagree. Tell them that you are expecting their support and if they feel unable
to assist you with your concerns ask them to refer you to someone who can. If
you live in a remote area and specialist services are limited, an epilepsy
counsellor at your local epilepsy association can help you find out what your
options are for seeing another specialist.
The
contraceptive pill
Some medications for epilepsy can reduce the effectiveness of the contraceptive
pill. Break-through bleeding may indicate that the strength of the contraceptive
pill prescribed may not be strong enough. If this happens use other
contraceptive methods until you have seen your doctor. The oral contraceptive
pill will be suitable for most women with epilepsy. In a very small minority of
women however, it may make seizures worse. Remember you have a wide range of
options available to you. Please discuss these with your neurologist.
Having children
Most women with epilepsy are able to have children without complications.
Careful medical management is important because seizures during pregnancy and
antiepileptic medication may pose a risk to the baby's health. So if you are
planning to become pregnant, we strongly recommend that you discuss pregnancy
with your doctor prior to conception. Some forms of epilepsy are inherited but
most are not. Your neurologist or a genetic counsellor can give you information
about epilepsy and inheritance.
Safety
matters
The potential risk in everyday activities depends very much on the individual
nature of your epilepsy. You may still have to adjust your lifestyle to minimise
or remove the risks that epilepsy can bring for you and those in your care. If
your seizures are not fully controlled or are unpredictable, everyday activities
such as climbing ladders, using power tools, taking overly hot baths or showers,
ironing and standing by the fire may pose a risk. Many of these risks can be
minimised by adopting often simple safety measures within the home. Your state
epilepsy association will be able to suggest practical measures to help make
your surroundings as safe as possible.
Night clubs
If you enjoy the social atmosphere of nightclubs, being diagnosed with epilepsy
does not mean you have to give up going out with your friends. Strobe lighting
or flashing lights, can in some people, trigger seizures. This is known as
photosensitive epilepsy. However it is quite rare and affects only a very small
number of people with epilepsy. Nightclubs and DJs generally display warnings if
strobe lighting is used. If this is a trigger for you it would be advisable to
avoid such clubs. If flashing lights make you feel uncomfortable, closing or
covering one eye can lessen this discomfort.
Television and Computer Games
Unless you have been diagnosed with photosensitive epilepsy watching television,
using a computer or playing video games should not affect you. However, if your
seizures are triggered by photic stimuli there are things you can do to minimise
the risk of seizures. Watch TV in a well-lit room and do not sit too close or
directly in front of the screen. When playing computer games, sit 2.5m from the
screen, again in a well-lit room and reduce the brightness of the display. If a
seizure is to occur it is more likely to happen within the first 30 minutes of
play. Generally, playing the game for prolonged periods doesn't pose a risk
unless it is for so long that you become sleep deprived. Sleep deprivation is a
recognised seizure trigger.
Identification
The decision about whether to wear or carry some form of medical identification
is a very personal one. A medical bracelet or necklace or a card for your purse
or wallet, stating your name, address and medical condition, can improve your
chances of accurate medical treatment in the event of a seizure occurring
outside your home.
Sport & Leisure
When people are busy and active they are less likely to have seizures. When
choosing a sport or leisure activity give some consideration to your type of
epilepsy and your degree of seizure control. Some activities involve a greater
risk than others but with appropriate safety precautions most risks can be
minimised.
Cycling
When cycling take normal safety precautions such as wearing a helmet, wearing
easily visible clothing and using lights at night. Use designated bike paths to
avoid the traffic. If your seizures are not well controlled stick to bike paths
and parks rather than cycling on public roads.
Horse
Riding
Wear a riding helmet and try to ride with other people.
High
risk activities
Scuba diving and boxing, are considered to be high-risk activities and should
only be considered if your seizures are very well controlled. Activities such as
bungy jumping are probably best avoided.
Swimming and other water sports
Try to always swim with someone else, making sure that your companions know you
have epilepsy and how to help if you have a seizure. If you are at a public
swimming pool, tell the attendant how to assist you should the need arise.
When engaging in any water sport such as boating, canoeing, windsurfing or
sailing always wear a life-jacket.
Underwater swimming such as scuba diving is not recommended. In the event of a
seizure, help may not be possible. Drowning is clearly something to be avoided
and yet it still happens to people who think they are personally invincible.
Near drowning events can be devastating to your general health and can in fact
lead to death. Of course there is an element of risk in any water activities
whether or not a person has epilepsy. But a seizure in water is a critical event
that all too often has a devastating outcome. Our best advice is to avoid
situations such as underwater activities, where your chances of survival, should
you have a seizure, are greatly reduced.
Travel
All holidays require planning whether you intend to travel overseas, interstate
or take a short break just a couple of hours from home. Having a regular supply
of medication is most important for anyone travelling away home for any period
of time. It is prudent to carry a copy of your prescription with you. If
something unforseen happens to your medication you can have it replaced
immediately.
Travelling overseas requires some extra planning. Arrange to take enough of your
medication in its original packaging to last your holiday. If you are going for
less than six months, you should take enough medication to last the whole time.
Pharmacists are able to dispense the full amount of the script, including all
the repeats at once if the script is endorsed by the doctor with the words
“Regulation 24”. You should ask your doctor for a letter listing your
medications, including their generic [chemical] names, since brand names may
vary between countries. This is useful for customs and in case you need to get
tablets while you are away. If your seizures are not fully controlled and
especially if you are travelling alone, it may be helpful to ask your doctor for
a brief letter about your condition, in case you need to see a doctor while you
are away. Always carry extra medication in your hand luggage in case your main
luggage is lost or delayed.
Find out if vaccinations are recommended for the country or countries you intend
to visit. Most vaccines are safe for people with epilepsy with the exception of
malaria. Your doctor will be able to discuss your options with you.
Long distance travel can disrupt your sleep pattern and your medication routine.
What to do when changing time zones depends on how many hours the change will
be. Former President of the Epilepsy Society of Australia Dr Ernie Somerville
offers the following advice based on medications taken twice a day. If the time
at your destination is less than 4 hours ahead of or behind your home time, you
probably don’t need to worry – just take your medication in the normal way.
While you are on the plane, take them about 12 hours apart. The same applies if
your destination is between 8 and 16 hours ahead or behind your home time. The
easiest way to figure this out is to compare the time at home and the time at
your destination, ignoring whether it is am or pm. If the difference in the two
times is 4 hours or less, just carry on as usual. [Don’t worry about the
International Dateline!] If it is not, then you should talk to your neurologist
about what to do.
It is also advisable to avoid excessive alcohol during the flight.
It is highly recommended that you take out travel insurance for the duration of
your trip. As epilepsy is considered a pre-existing condition, a higher premium
will be charged but you will rest assured knowing that you are covered in the
event of an emergency. Medical costs incurred outside Australia have the
potential to cause financial ruin.
There are epilepsy organisations in many countries if you need advice or
referral. Your state association will be able to give you the relevant contact
details.
Team
and contact sports
Your epilepsy should not stop you from playing team and contact sports unless
the epilepsy was caused by serious head injury. Some people choose to wear head
protection while playing regardless of whether or not they have epilepsy. It is
always a good idea to wear protective headgear in contact sports regardless of
your health status.
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