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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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Men and epilepsy
Comparatively little has been written specifically for men with epilepsy. But
this is not because epilepsy affects men any less than it does women. The
numbers are generally seen as being pretty much equal between genders even
though some writers have reported that slightly more men have epilepsy than
women.
For a number of reasons epilepsy support associations usually see more females
than males. When, for instance, a child has epilepsy it is more likely that the
child's mother will make contact than the child's father. Some men will only
seek information about their own epilepsy once their female partners have made
an appointment for them. Perhaps it's the old thing about men being less
inclined to take responsibility for their own adverse health situations than
women.
For men a wide range of specific issues have not been articulated in contrast to
the number of specific gender issues for women. They exist however, and they can
be quite complex, varying with such things as age, seizure type and severity and
with a male's overall health and lifestyle circumstances.
If you are a male with epilepsy
It is important to understand that your seizures are not a sign of weakness or
of mental instability or of being any less intelligent or capable than anyone
else. Although you may feel they are, you will eventually realise that they are
not. Seizures are in fact a sign that your seizure threshold has been lowered in
some way. They are a clear indication that despite the fact that your brain
functions perfectly well on almost every possible occasion, a small and
relatively uncommon biochemical glitch can bring things temporarily undone. It
is very often a very small glitch. It's usually momentary and isolated. But, as
you know, its impact can be devastating.
The problem is that it's not a glitch in your ankle or your hairline or your
ability to achieve great things or to be good looking and successful. Epilepsy
is often called an "episodic" illness because seizures come and go and in fact
might only occur on very rare occasions. The problem is that this glitch called
epilepsy happens in your brain which is the key centre of all your body's other
activities, so even if it is a very small problem for the brain, if left to its
own devices it can become a great burden to you.
We therefore encourage you to see what is happening as being firstly a
biochemical problem. With your doctor you will work to a solution that is
logically going to be first and foremost a biochemical solution: a solution
proven in millions of cases to have worked for other people experiencing
seizures. And if it doesn't work straight away there is excellent reasons to
keep trying because by two years out from the time of the first seizures, or
seizure onset, most people have their seizures completely controlled or very
well controlled indeed and are successfully getting on with their lives.
The burden of epilepsy for both men and women is greatly reduced if freedom from
seizures is achieved and seizure freedom should be one of the highest priorities
you set yourself. Your best chance for gaining this freedom is to follow the
advice of your medical practitioner or neurologist. This will include taking
prescription medications that your body may take a while to get used to. There
will be times when, because the seizures have stopped, and because you may
experience one or more side effects from the drugs that you could well do
without, you will feel like easing off or stopping the tablets. Understandable
as this is it is also a huge mistake.
Men and Compliance
Taking the tablets you have been prescribed in the way your doctor has advised
is known as "compliance" and it is reported as a greater issue for men than it
is for women. Some writers think it is patronising to talk about "compliance" as
they equate it to "doing what you are told to do". It is perhaps worse to be
given a powerful medication and not be told how to use it safely and
effectively. Treating epilepsy is not like taking a course of antibiotics to
treat an infection. It is not something that popping a few pills will fix. It
requires you to take tablets and keep taking them until your doctor or
neurologist gives you the all clear to reduce or stop.
What happens if you stop or reduce your tablets?
If you stop taking the tablets
prescribed, or even decrease the dosage, you are likely to experience what are
sometimes called "breakthrough seizures" and indeed it may be harder to get your
seizures back under control the second time than it was the first time. You may
well be able to reduce or even cease taking drugs once you have been seizure
free for a couple of years but that is far from the case when you are at still
at the stage of getting them well and truly under control. Compliance is a vital
step in managing seizures.
There are many reasons why some people find compliance difficult. Some find it
difficult to remember what they are to take and when they are to take it. Some
dosing routines can be complicated and involve taking very specific doses of
different medications throughout the day. Some people simply turn away from the
adverse side effects of particular drugs.
Tablets are sometimes resented and rejected because they are associated with the
"stigma" of epilepsy. This can be a critical problem for adolescents who don't
want to have to explain why they take tablets. Or they may resent tablets as
another example of the adult authority that they tend to question regardless of
whether or not they have epilepsy.
If, as an adult, you have been seizure free for two or more years there is a
possibility that you may be able to undergo a supervised reduction in the number
of tablets you take, and even to stop altogether. It's not a guarantee that
seizures will not return but, with care and appropriate supervision, it can be
worth doing.
Supply is a key issue
Keeping your medication where you can get to it is as important as remembering
to fill scripts in the first place. For some people, the thought of carrying
around a drug wallet or pillbox is personally quite a big ask. Counsellors at
your Epilepsy Australia affiliate can help with all these issues.
Alcohol and other
recreational drugs
Most men like a drink. And epilepsy shouldn't stop you having a beer or two or a
glass of wine with dinner, but you need to be honest with yourself about it.
Alcohol can increase the sedating effects of some antiepileptic medications and
it can trigger seizures under some circumstances. 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. If it is a problem for
you, speak about it with your doctor. You may be able to try another tablet or
you may even be able to have the occasional drink and do so with little or no
adverse reactions.
Street drugs such as cannabis, ecstasy, heroin, amphetamines or solvents can
trigger seizures and when combined with a change in lifestyle that involves late
nights and alcohol your risk of seizures is greatly increased. Talk to your
doctor or epilepsy counsellor. You should not be playing Russian roulette with
seizures. The first three to six months of your treatment are critical for you.
Is marijuana as good for seizures as many people claim?
Marijuana smokers with
particular kinds of seizures will tell you that they can control seizures by
smoking dope. The fact is that they may be right. But there are other facts that
are equally relevant to what is happening here.
Antiepileptic medication must be taken with clocklike regularity every day to
control seizures. As marijuana is generally illegal and its supply erratic,
relying on marijuana to control your seizures is fraught with danger. If you
stop because your supply has dried up, you can be placing yourself at great risk
and your seizures may come back with a vengeance. Growing a small amount of
marijuana is legal in some states and in some countries, but growing enough to
maintain a reliable supply usually lands you in hot water for possessing what is
called a trafficable amount. You can be charged with trafficking and summarily
convicted of a criminal offence. Going to prison is bad news and the supply of
your medication in prison can be made difficult by authoritarian prison regimes.
Prison is not the best place to be dealing with seizures. Another difficulty
with marijuana is measuring the strength of the dope you are smoking.
There is, in fact, interesting and continuing research into the therapeutic use
of marijuana patches but at this stage using non-conventional drugs for treating
epilepsy is at best "very risky" and at worst "deadly". In fact, if you do use
recreational drugs, you will need to talk about it with your doctor or epilepsy
counsellor and they will almost certainly tell you that they can trigger the
very seizures that you are seeking to avoid.
Self image
Compliance can become a particular problem for men whose self-image rests at the
more rugged higher risk-taking, strongman end of the masculinity scale. It can
be a problem for both men and women in the workforce where they have not told
their colleagues or employers, or where there is a habit of spending time in the
pub with mates or colleagues after work. There is some evidence that men,
particularly younger men, can find this especially hard going. For some males
their self-image can take a battering when they are not being permitted to drive
for a certain period until seizures are controlled. Surveys have revealed that
some males would rather tell their work mates and friends that they're "off the
road" for drink-driving than admit to having seizures. Being a male brings with
it a range of expectations that can make epilepsy an especially hard condition
if you allow yourself to be ruled by stereotypes.
Driving
Most professional drivers are men whether they drive trains, taxis, trams, buses
or road transports. The farmer on the tractor is more likely to be a man. And
indeed one of the rites of passage for many young men is get a licence and to
get some wheels. Driving and unpredictable seizures can be a lethal combination.
For older men, it is often the case that they are the only person left in the
household who drives, once the children have grown up and moved out. Having
epilepsy can mean that both partners have no immediate access to the car that
has until now taken them shopping, visiting the kids, and even on holidays. It's
something to be dealt with, and many people have successfully done so before
you. The best way is to get control of your seizures so they are no longer an
impediment to your safe driving. And in the meantime there may be ways that you
can get some help getting about. Your epilepsy counsellor will want to help you
through this or to tell you who is most likely to be able to provide you with
transport support in your geographical location.
Sport
Those men who play sport, and in truth most men watch rather than play, tend to
play more physically aggressive sports than women. There are major sports stars
who have epilepsy who compete in some of the toughest sports played, but these
guys have their seizures controlled. Without freedom from seizures it is
inadvisable to play rough contact sports. Interestingly, head protection gear is
increasingly seen as an important element to playing contact sports safely, but
from basketball to football there seem to be very few men with the guts to
actually don even the most comfortable helmets.
Likewise participation in sports like weight lifting or bodybuilding, skydiving,
mountain climbing or diving should only occur under well-supervised
circumstances.
Being a good provider
For many men the idea of supporting a family is what keeps them going to work;
often at jobs for which they don't particularly care. It's the idea of being the
traditional breadwinner and it's tied up with notions of male physical strength
and the ability to protect those you love. Well the truth is, seizures can
threaten this. They can lose you your job. They can cause you to have a serious
work injury. They can leave you without an income, at home with the possibility
of seizures while your partner is out earning money.
An experienced epilepsy counsellor will have talked about this with many
families and will be able to help you get your head around where to go for help.
Some superannuation schemes offer periods of temporary ill health retirement.
Sickness benefits and carer benefits and a range of support that you might need
for a period should be talked about early in the piece so that applications can
be made and arrangements thought through.
Sex
While some seizures [central or parietal lobe seizures] can involve sexual
feelings and actually cause erections and ejaculation, the experience of
epilepsy is more likely to lead to a decline in sexual energy or libido rather
than an increase. The culprit most often blamed is the sedating effect of many
antiepileptic drugs. While this can be a difficulty, for many men the fatigue
from the drugs usually wears off or at least becomes quite manageable. What is
now understood however is that the mechanisms of seizures can be implicated in
reduced libido [or sexual drive] and reduced sexual function [potency] even
without the added impact that some medications bring into the picture.
Of course if your libido has decreased you might not be too fussed about it. But
your partner may be. If your libido is strong but your capacity to perform
physically is reduced then you will no doubt be more likely to want to do
something about it. And there is a range of things that you can do to help
ensure that you are functioning optimally. All men face issues around libido and
potency at different times and the first thing you need to do is to reduce all
the other factors that can diminish your sexual prowess. This means you need to
attend to those old bug bears of exercise, diet, sleep minimising stress and
concentrating on your partner's needs as well as your own. If a lack of
erections or temporary impotence does become a problem then attending to these
same things can help, as can remembering that it is not necessarily your
epilepsy or its treatment that is causing the difficulty.
There is in fact a range of solutions to impotence and newer drugs such as
Viagra appear to be compatible with antiepileptic medications. If such drugs
help it is likely that they are redressing difficulties that are not based on
epilepsy but are the same difficulties that millions of other men without
epilepsy experience. And there is a lesson there. If you do have sexual function
difficulties and epilepsy, do not assume that one is necessarily the cause of
the other.
And you can't just assume that your doctor or neurologist has some special
knowledge about achieving a fulfilling sex life, and even if they do, a
counsellor or sex therapist is probably a more likely bet. What your doctor or
neurologist is increasingly in a position to be able to tell you is whether your
tablets or something else is the problem. This area of research is relatively
new. But the good news is doctors, like Christine Kilpatrick, Deputy Director of
Neurology at the Royal Melbourne Hospital and Head of the Comprehensive Epilepsy
Program at the Melbourne Neurological Centre, are calling for greater efforts to
research the impacts that epilepsy has on men and to more clearly understand the
effects of epilepsy on the mechanisms of male sexual function in order to find
appropriate remedies.
All kinds of things can go wrong for all of us, and having epilepsy should not
be seen as the culprit in every case. The important thing is to talk about
anything that worries you with your doctor or counsellor so that you can move
forward.
Can
having sex provoke seizures?
Many men wonder if sexual
activity can provoke seizures. The answer is that it is unlikely to do so. In
fact an active sex life can have a decided stress reducing effect just as the
lack of one can cause some guys to become quite stressed out. It's important
stuff to deal with and if you are in a slump since being diagnosed with epilepsy
tell your doctor what's happening. If he or she tells you not to worry about it,
because you're too old, or too young, or whatever, tell him or her that you want
to talk to someone who understands why it does matter ? a great deal. Your
epilepsy association counsellor should also be able to help, or get you the help
that you could need.
And don't forget, if you are in a sexual relationship, your partner may want to
reassure you of their love and support and may be frustrated by your lack of
interest. So it's important to talk. It's not only OK to say the tablets make
you tired, it's important to let your partner in on what's happening. Closing
off from your partner at a time when things are tough may well be a more certain
way of wrecking a good relationship than having to work through the issues of
drug side effects and anxieties about sex.
Safety in the Home
Your doctor or counsellor will have pointed out a number of safety issues for
your consideration. But there are some that are more likely to apply to men.
Motor mowers and power tools have made many men's lives a whole lot easier. They
have also sliced through feet and fingers and worse with cold efficiency before
the guy being chopped up even realised what was going on. Hammers and chisels,
saws and bladed tools, ladders and being the one who climbs onto the roof are
all things most men deal with. And if you have epilepsy you'll need to deal with
it a bit more. The advice here is if you could hurt yourself by having a seizure
while doing anything with tools then you just have to adapt the activity or pass
on it until you know that your seizures aren't going to happen. Fixing a leak in
the roof may be sensible and you may be the only one in the house without a fear
of heights, but it's a heck of a lot harder fixing a broken leg or neck. You owe
it to yourself and those around you to be careful.
Anger
We sometimes talk with men who have epilepsy who
have been angry and whose anger has caused their marriages to break up or their
friends to become distant or their colleagues to complain. It's true that
everyone can get angry at a diagnosis like epilepsy. In fact it's pretty normal
to feel some anger ? as well as some anxiety, even depression. It is important
to talk about these feelings because they are manageable. The trouble is many
men are not so great at dealing with emotions like these. But you can and once
you do you'll learn that there's plenty that you can do to improve things.
The one thing you can't do is try to excuse anger by telling people that they
just have to put up with it because you have epilepsy. Anger is a useful emotion
but not if you can't keep a lid on it. Anger if left unchecked, can do you a
great deal of damage. Talk to your doctor or epilepsy counsellor and get through
it.
Epilepsy is
a serious health condition and being a man doesn't mean you have to tough it
out!
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