Seizures
Between 25-40% of people diagnosed with a brain tumor have a seizure at some time during their illness. If you’ve never had a seizure, or have never seen anyone having a seizure, this can be a startling experience. Our goal is to help you become comfortable with this possibility. If you understand what a seizure is and what to do in the situation, you’ll be able to help if a seizure occurs.
WHAT ARE SEIZURES?
A seizure is simply an outward sign of abnormal electrical activity in the brain. It is similar to seeing a circuit breaker trip during an electrical power storm. Normally, your body's nerve cells communicate with each other via carefully controlled “electric” signals. Those nerve cells send thousands of signals back and forth, giving instructions to all parts of the body. If something interferes with those signals and they become more intense, a seizure results.
There are different types of seizures. In brief, seizures may cause unusual movements in parts of the body; a change in awareness; and/or unusual sounds, visions, or sensations. The type of seizure depends on which part of the brain is experiencing the abnormal electrical signals.
Most seizures occur randomly, at any time, and without any particular cause. However, there might be some advance notice. People who regularly have seizures sometimes notice things that “signal” an oncoming seizure. This warning is called an “aura.” Auras sometimes take the form of a headache, a mood change, a muscle twitch, or a particular smell. If you or your family member experience auras, learn to use that time to protect yourself. For example, if you are walking and have an aura, sit or lie down. If you are chewing, remove the food from your mouth. If you are showering, get out of the water. An aura can be your best friend.
If you have recurrent seizures, you might also notice that some events "trigger" them. Bright lights, flashing lights, specific odors, lack of sleep, missed meals, menses, increased stress, alcohol, new medication, or changed medication doses can all be triggers. Keeping a diary or journal of what you were doing immediately prior to each seizure can help you identify your personal triggers.
What does someone having a seizure look like? This is a normal question. For some, jerky shaking and trembling may be the first thing you see. Sometimes these body movements become extreme. Other times, a seizure may be as simple as someone appearing to be “far away.” Still, for others, a seizure can take the form of music only they can hear, or a phrase chanted repeatedly until the seizure is over. The person having the seizure will not be aware of others around him during the seizure, and may not respond to touch or hearing their name. These are all normal variations of seizures.
HOW TO HELP SOMEONE DURING A SEIZURE
(keep this section handy, ie. on your refrigerator)
Do not panic. Most seizures end on their own. Your role is to protect the person having the seizure at a time when they cannot protect themselves. Do not attempt to stop the seizure, and do not put anything in their mouth.
Most Importantly: Make sure the person can breathe. Loosen clothing from around the neck and move pillows, blankets, or other items that could interfere with the breathing pathways. If the person is having trouble breathing, immediately call for emergency help. Most of the time, though, a person having a seizure requires no assistance other than caring observation.
Clear the area of sharp objects. Remove glasses. If the person appears to be breathing well on his own, take a moment to move other potentially dangerous items. If possible, help the person lie on his side. This helps keep the airway open.
Protect the person’s head from being bumped, but do not attempt to restrain a person's arms or legs during a seizure. This could cause an injury such as a dislocation or a fracture.
Do not put anything in the person's mouth, including your fingers. During a seizure, anything placed in the mouth will block the airway and cause breathing problems. The jaw often clenches during a seizure, and your fingers could be bitten.
The next few minutes will seem like an eternity. Try to relax. Use this time to observe whether the person is wearing a medical alert bracelet. It may be a visual clue that this has happened before.
Most seizures last several minutes. After the seizure ends, allow time for the person to rest and recover. Confusion afterward is normal. Tell the person who you are, where he is, and what happened. Help him find a place to rest until he feels like himself again.
Call for emergency assistance if:
• the person is having difficulty breathing
• the person injures himself
• the seizure lasts 5 minutes
• the person is pregnant or has diabetes
• a second seizure immediately follows
• the person feels “sick” after the seizure or injured himself
HELP YOUR MEDICATIONS WORK
Seizures may be controlled in several ways, but the most common is with drugs.
The goal of drug therapy is always to control seizures with the lowest effective doses of antiepileptic medication and with the least side effects. There are several important points to remember:
• Antiepileptic medications work best when there is a steady level of the drug in your body. The drug needs to reach, and remain at, the ideal level to be effective. Remember to take your medication regularly and as prescribed. If you miss a dose, don't double up. Resume your regular schedule and notify your doctor.
• Some medications require frequent blood tests in order to check the drug levels in your system. Ask your doctor if the medication you are using needs to be monitored in this way. If yes, find out where and when to have those blood tests done. Your medications might be adjusted based on the results.
• Alcohol interferes with some antiepileptic drugs. Ask before indulging.
Do not change the dosage or stop taking your medicine without the approval of your doctor. If one medication doesn't control your seizures, another drug or a combination of drugs may be prescribed.
Depending on the risk of seizure recurrence, you may need to continue taking antiepileptic medications for several months or years following your last seizure. This risk is determined on an individual basis by your neurologist. The decision is based on many factors including MRI scans, EEG (electroencephalogram) results, the outcome of tumor treatments, and the prevailing guidelines in your region of the country. The decision to taper off antiepileptic medication should be carefully planned by your doctor and you, and all appropriate precautions taken. Do not abruptly stop on your own, as this may trigger a seizure.
FOR MORE INFORMATION
There are many sources of information about seizures, antiepileptic medications, and ways to manage the potential side effects of these drugs:
American Brain Tumor Association web site, www.abta.org/buildingknowledge5.htm, offers seizure information in our A Primer of Brain Tumors.
Epilepsy Foundation of Minnesota web site, www.efmn.org, provides information about the different types of seizures and their treatments, a Get Connected program for people wishing to share their experiences, and support resources in the state.
The Epilepsy Foundation of America national office web site, www.efa.org, offers first aid guidelines, medication information, and help understanding each state’s driving restrictions.
We appreciate the assistance of John Thompson, Information & Referral Coordinator at the Epilepsy Foundation of Minnesota, in making this material available to you.
2720 River Road
Des Plaines, IL 60018
Phone: 847-827-9910
Fax: 847-827-9918
Toll-free Phone: 800-886-2282
E-mail: info@abta.org