KatCarney

Getting on with it - women with epilepsy.

By Julie Starr.
1,172 words
15 May 2003
Health Media Group Features
English
(c) 2003 Health Media Ltd

Karin Harris was enjoying a challenging job as a company administrator when she became pregnant with her daughter Natalie, despite being on the Pill. It wasn't until her second child Jamie was born, just less than two years later, that doctors realised her anti-epilepsy drugs were counteracting the contraceptive.

"I love them to bits," Karin says of her children, now aged 13 and 12, "but I hadn't planned on having a family. I loved my job. I was a career woman." Karin, who lives in Chepstow, south Wales, hasn't worked since her children were born. Soon after their births, her seizures worsened and she has since hurt her back.

The interaction of drugs with contraceptives is one of many issues facing women with epilepsy. Most anti-epilepsy drugs also carry a slight risk of birth defects such as spina bifida, although the charity Epilepsy Action stresses that more than 95 per cent of babies born to women taking such medication are normal and healthy.

A woman with epilepsy has to be extra careful with her baby, so she doesn't fall on the child if she has a seizure while feeding or changing a nappy. She may have more seizures around the time of her period, and she should not have a bath unless someone else is home in case she slips beneath the water while unconscious.

She becomes an expert at pies and casseroles, which are safer if left unattended than pots bubbling away on the stove. She cannot drive, and is barred from jobs such as police work, ambulance driving and nursing unless she has been seizure-free for a set number of years.

The bare facts

Epilepsy, put simply, involves having recurrent seizures. They happen when a chemical imbalance in certain brain cells sparks an "electrical storm" that interrupts normal neural function. Anti-epilepsy drugs work by regulating these chemical processes.

Any one of us can have a seizure following brain injury through, for example, stroke or meningitis. In people with epilepsy, seizures result from more ordinary stimuli such as lack of sleep, stress or excess alcohol. A minority are "photosensitive" to fluorescent and strobe lights.

Seizures vary widely from person to person. Some are mild and last only a second or so, others are strong enough to drop a person to the floor, render them unconscious and cause them to convulse. The latter is true for Karin, who has around three such "generalised" seizures a week.

Since Karin had her children, far more is known about epilepsy and more drugs are available. Women are generally better informed about drug interactions, and if they want a family they can first discuss it with their doctor so a drug regime can be found that will minimise the risk of birth defects.

Balancing act

Managing epilepsy with drugs can be a tricky business; there's the matter of side effects, for example. Some people don't get side effects at all, others grow excess hair or have back problems, headaches or stomach upsets. It's often a case of "shopping around" for the drug regime that suits you best.

Karin has tried several drugs. Lamotrigine stopped her periods for nine years. Others made her put on several stone in weight and develop acne. "I've been on ones where you've been half asleep all the day," she says. "But that's no good if you have children."

Now she takes topiramate at a dosage that allows her to cope with family life. "If I took more pills I'd be dozier, by taking fewer pills I have more fits but I'm awake and alert."

Choosing medication is a very personal decision, says Cardiff psychology student and counsellor Anna Morelle-Grey. She prefers to have "a bit of weight gain and a bit of tiredness than be on the floor having uncontrolled seizures". But it can be more complicated than that.

Anna has juvenile myoclonic epilepsy (JME), which makes her "photosensitive". The best drug for managing photosensitivity is epilim chrono, which has been tentatively - although not causally - linked with polycystic ovarian syndrome, which Anna has.

"As a result of that you can develop diabetes, you put on a lot of weight, acne. Personally I don't want children but for a lot of women it's a big issue because it can cause them not to ovulate," she says.

Both Anna and Karin say it's important for women to learn all they can about their form of epilepsy and be assertive when talking to doctors if they want to try an alternative drug regime.

A personal condition

There are more 40 kinds of seizure, many forms of epilepsy and a growing number of anti-epilepsy drugs, so it's impossible to generalise the experience of epilepsy. Some people have only one kind of seizure while others have several. Some can eventually stop the drugs while others, like Anna, must stay on them for life.

Even with the drugs, Anna has dozens of "absence" or "partial" seizures a day. Absence seizures, which generally affect children, are brief and give the impression someone is just daydreaming. "It can be for just a second or a few seconds and you don't actually pass out but you're not aware of your surroundings," Anna says.

Partial seizures are a little more substantial. "For me it feels like having pins and needles in my head and feeling really drunk and knowing that I've got to get out of the situation that I'm in, because it usually happens in a supermarket or something," she says.

Overcoming the stigma

Old myths about epilepsy are taking a long time to disappear. When Karin was diagnosed at age 17, her family hushed it up, ostensibly to "protect her future prospects". Back then, people thought of epilepsy as a mental illness, and as an impediment to a normal life of job, marriage and children.

But even now, says Karin, when some people find out they "start talking to you very, very slowly" or they start talking to the children instead. "You don't tend to tell people until you know them well," she adds.

Anna says it comes as a surprise to some people because "they think that if you have epilepsy you've got to look a certain way. They say, Oh but you don't look epileptic'".

That attitude has to change, according to Epilepsy Action. The charity has organised a series of "Out in the Open" walks during National Epilepsy Week (May 18-25) to help challenge the stigma. To get involved, give the charity a call on 0113 210 8800.

And next time you meet someone with epilepsy, try not to make a fool of yourself by patronising him or her or staring at your feet. Just carry on as normal, so they can too.

Further information:

Epilepsy Action www.epilepsy.org.uk Freephone Helpline 0808 800 5050

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