Difficult to control seizures

Who is most likely to have poor seizure control?
What is the most likely impact of poor seizure control?
What can you do if your seizures aren't controlled?
What are the other options?

Most people with epilepsy lead fulfilling and productive lives.

About 70% will have good seizure control by taking medication regularly and leading a healthy lifestyle.

Others will have the frequency and severity of their seizures greatly reduced.

However, a number of people will continue to have seizures that are difficult to manage.

Who is most likely to have poor seizure control?
1. People with partial seizures
This is most likely because there is an abnormality in the structure of the brain causing the seizures.

2. People not taking their medication regularly
Possibly because of issues such as: side effects, lifestyle factors such as binge drinking, late nights and stress, medication doesn’t seem to be working, cost, denial of condition, or they may simply forget.

3. People who are on the wrong medication for their seizure type or epilepsy syndrome
Sometimes this is due to incorrect diagnosis or intolerance to other medications. Keeping a seizure diary with good descriptions of seizures can greatly help with a good diagnosis.

4. People who suffer intolerable side effects from different medications

5. People with disabilities including mental health issues, people with a language barrier, and children
Predominantly as a result of multiple seizure types, communication difficulties and other medical factors

6. People with other health conditions and on other medications
Poor health and some other medications can increase the likelihood of seizures.

What is the most likely impact of poor seizure control?
Regular seizures occurring over a long period can have a number of unwanted effects, which can include and contribute to:

• Poor memory and concentration
• Tiredness
• Accidental injuries
• Reproductive health issues
• Increased vulnerability to anxiety and depression
• Social isolation
• Feelings of dependency
• Relationship and family problems
• Financial issues – due to reduced income and costs of treatment
• Increased risk of sudden, unexplained death

Treating the seizures is not enough. The social, emotional and physical components of the person’s life must be considered as well.

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What can you do if your seizures aren't controlled
1. Take charge when a medication is not working for you. Remember though, it can take time to determine whether a medication is working. If seizures are continuing despite taking medication as prescribed, you may need to be reassessed carefully before selecting the next medication or treatment option.

2. Take action if you have undesirable side effects. Side effects can lead to stopping the medication(s), which increases the risk of having seizures. Note: Never stop or change medication doses without the doctor’s advice.

3. Learn about your medication(s). Some initial side-effects decrease or diminish after the first few weeks. Learn or ask about what side-effects may occur, and what ones are serious. Anti-epileptic medications are usually started on a low dose and gradually increased because some side-effects are caused by the initial dose being too high or the increase in dose being too fast. Rarely, some people may experience unusual or unexpected side effects.

4. Check medication interactions. If you have to take medications for other reasons, or are taking any vitamins, herbal medicines or supplements, it is a good idea to check how they mix with the anti-epileptic medication. Speak to your doctor or pharmacist about this.

5. Keep your doctor informed about your treatment effects– good and bad. Keep a diary of seizures with a good description of the seizures and medication side-effects. Discuss any other issues (eg fertility, depression) with the doctor, because management involves all of you, not just seizures.

6. Take medication as prescribed. Try to get into a routine and take medications at the same time each day. Taking them with meals is an easy way to remember. Taking medication irregularly does not give a true indication of its success in controlling your seizures.

7. Educate yourself. There are many different types of epilepsy, seizures and medications. Find out your exact diagnosis, for example, ‘temporal lobe epilepsy’. This makes it easier to learn about it. It may also help with your acceptance of the condition and reduce anxiety.

8. Educate others. If family, friends and colleagues understand more about your condition, this can ease a lot of stress and reduce the likelihood of inappropriate responses or reactions.

9. Finances. Some medications are more costly than others. If finances are tight, let your doctor know so they will consider medications that are suitable for you. Also ask your doctor about medications that may be cheaper like generic brands or if you are having difficulties with medical expenses.

10. Take time out to relax - make lifestyle changes - There are a number of ways you can help reduce seizures by leading a healthy lifestyle. It’s important that you look after yourself by eating and sleeping well, exercising and getting involved in leisure activities that you enjoy.

11. Seek professional help. Your emotional well-being can also have an effect on seizures. If the psychological and emotional effects of epilepsy are affecting you, it is important to seek professional help or advice. These symptoms are treatable and can be overcome.

12. Seek support from family and friends. Difficult to control seizures may create a sense of ‘loss of control’ and can lead to social isolation. Research suggests that social support, irrespective of seizure control is related to a better qualify of life for people with epilepsy.

13. Lifestyle choices. Excessive alcohol, recreational drugs, late nights, sleep deprivation, chronic stress, poor nutrition and unhealthy lifestyle are all a form of stress to your body. These can all trigger or contribute to seizures.

14. Learn about seizure triggers. Keeping a diary will help you to recognise what ‘sets off’ seizures for you. Know your triggers and try to avoid them.

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What are the other options?
Medication choices

Although it is frustrating to keep changing medications, it is worth it when you find one that best controls your seizures with the least side effects.

Epilepsy medications have advanced dramatically over the last 15 years and many new ones have been introduced. Some of the more recent anti-epileptic medications have fewer side effects and fewer interactions with other medications.

Try and keep in touch with new treatments and medications, either through your doctor or Epilepsy Action
1300 EPILEPSY (37 45 37).

If one anti-epileptic medication alone is not working, it may be necessary to:

1. Use a combination of two medications – Some medications, when used in combination can improve seizure control even further. Sometimes only a small amount of another medication is needed.
2. OR Reconsider the epilepsy diagnosis – It is possible that there has been a misdiagnosis if the medications do not have any effect on the seizures. You may need further tests and monitoring to determine what the episodes are or what type of epilepsy you have. Sometimes people with epilepsy have episodes that are related to stress rather than seizures.

Other options
There is now a wider range of options for people with epilepsy. All reasonable attempts with anti-epileptic medications need to be undertaken before considering the following options.

Surgery –Aims to remove the part of the brain where the seizures originate. This option is most suited to certain types of epilepsy such as partial seizures from temporal or frontal lobes of the brain, or if there is a clear lesion in the brain.

Ketogenic Diet – Is a strict diet, high in saturated fat, low in protein and carbohydrates. This is most suited to children, although it has been tried in adults. It has mainly been used in children with severe epilepsy with some noted success.

Vagus Nerve Stimulation – Is a small pacemaker–like device implanted in the chest and leads are wrapped around the vagus nerve in the neck. The number and severity of seizures can be reduced, and in some cases, there is complete seizure control. A magnet can stimulate the device if the person has a warning or aura.

Complementary therapies – There are many different types of complementary therapies. They are often used in conjunction with taking anti-epileptic medication.

It is important to speak to an epilepsy specialist about these forms of treatment and how successful these options have been in controlling intractable epilepsy. The specialist will be able to discuss whether these options are appropriate treatments for you.

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References:
http://my.webmd.com/content/article/74/89403.htm?z=4224_00000_2505_nv_08
http://www.neurosurgery.pitt.edu/epilepsy/pediatric/intractable.html
www.epilepsyontario.org
Taking Charge, Sarah Edelman, 2002

Epilepsy Action
1300 EPILEPSY (1300 37 45 37)
Australia-wide Priority Call