Learning to lessen risks is a critical part of living safely with seizures. Seizures, treatments, and other health problems carry risks for many people. Read these highlights of possible risks and safety tips. Then explore the following sections for more details on certain topics. Talk to your health care team about seizure safety for help developing your safety plan.
Every state restricts or puts limits on driving for people with seizures.
- Know the laws where you live. Typically people need to be seizure free for a period of time, ranging from 3 to 12 months depending on the state. Individual circumstances and a doctor's recommendation may also contribute to driving restrictions.
- The Department of Motor Vehicles (DMV), not the doctor, makes the decision on driving in most states.
- Make sure you fill out forms from the DMV fully and accurately and give your health care professional plenty of time to complete their part.
- Some state laws (California, Nevada, Oregon, Pennsylvania, Delaware and New Jersey) require that medical personnel report when a person has been diagnosed with epilepsy to the state authorities.
- People with epilepsy also have a legal obligation to report seizures to the DMV or indicate that they have epilepsy when applying or renewing a license. (Check your state law for your legal obligations.)
- Do not drive if you are having seizures or side effects that affect your ability to be safe on the road!
- Be honest with your doctor about your seizures. Safety comes first!
- Be honest with the DMV. It may protect you legally if problems occur later.
- A person can drown if they have a seizure in water. It doesn’t take much water either - only enough to cover a person’s nose so they can’t breathe.
- Talk to your health care team about whether it’s wise for you to swim and what precautions to take.
- Use common sense. If you do swim, use a buddy system. Wear a life jacket with any water activities.
- Make sure someone is around that knows how to swim, has lifesaving skills, and knows how to respond to seizures.
- Take showers instead of baths. If seizures are frequent or you tend to fall, use a shower chair and a flexible shower hose. Or sit on the bottom of an unfilled tub to shower instead of standing.
- If you have uncontrolled seizures, be very careful around heat or flames.
- Sit far back from open flames, such as a campfire.
- Electric stoves may be safer than gas (due to flames). Using a microwave is even better!
- Cook on the back burner - you are less likely to lean on the burner or spill hot foods on yourself or others during a seizure.
- Set the maximum hot water temperature in your house to 110 degrees Fahrenheit.
- Put guards on open fireplaces, wood stoves or radiators.
- Don’t smoke or use matches when you’re alone. A fire could start if you drop it during a seizure.
Safety Proof Your Environment
- Arrange your home, and if possible, work or study space, to be safe should you have a seizure. For example, pad sharp corners, use non-slip carpet, avoid scatter rugs, and put barriers in front of fireplaces or hot stoves.
- If you wander or are confused during or after a seizure...
- Pay special attention to heights, railings and nearby pools or bodies of water.
- Shut your door when you are home alone, so you don't wander outside or into dangerous areas.
- Make sure someone else (neighbor, friend) has a key to get in and check on you!
- If you fall during seizures, "fall-proof" your home and other areas. Put in carpets, cover sharp corners, and avoid glass tables.
- Some people with frequent falls may need to consider wearing a protective helmet.
- If your seizures are not in control, avoid working on ladders or unprotected heights, especially if you are alone.
- A safety harness could be an acceptable safety aid, depending on the type of seizures and activity.
- If you have frequent seizures or fall during seizures, avoid climbing stairs when alone.
- Keep common household items on all floors of your home to avoid going up and down stairs frequently.
Equipment and Power Tools
- Use safety guards on equipment for cutting, chopping and drilling. Avoid using these if your seizures aren’t controlled.
- Make sure all equipment (such as lawn mowers, snowblowers ) has automatic stop switches.
- Use common sense and protective gear, just like anyone should with power tools!
If having a seizure during a recreational activity could lead to injury or harm, avoid the activity. Use common sense. Talk with your medical team for individual advice and precautions.
- Activities at low-risk of injury can be done by most people with seizures, even if the seizures are not in control. However, exercising or participating in activities with someone else is always a good idea. That way someone is with you in case help is needed.
- For "medium-risk" activities, the longer a person is seizure free, the easier it will be to assess what risks these activities may pose. The type of seizures a person has is also important to consider.
- Some people may recommend against contact sports (such as football, hockey) or others such as ice skating, bike racing, gymnastics, horseback riding and boating.
- For others, these activities may be fine as long as appropriate protective gear is worn and if the person has been seizure free for at least a few months. The length of time without seizures should be agreed upon with your health care team.
- A person should be seizure free for more than a year to perform high-risk activities, although some doctors recommend never engaging in high-risk recreational activities if you have epilepsy.
- Ask your medical team what is safe for you to do. Some may be safer than others. For example skiing is much different than other high-risk activities like hang gliding, motor sports, competitive skateboarding, mountain or rock climbing, and scuba diving.
- Remember: safety first!
Child Care Safety
- Baby proof the house early!
- If you have uncontrolled seizures, think about the best way to carry your child. Your type of seizures will affect this. For example, women who fall forward should avoid carrying their child in their arms or in a sling frequently when they are alone.
- Use a small stroller to carry a baby around the house or outside.
- Change the baby on the floor.
- Do not bathe the baby in a tub when you are alone. Make this family time and share the job!
- Feed an infant sitting in the middle of the bed or couch to support the baby more easily.
- Have an enclosed safe play area.
Medication Side Effects
- Know the main side effects of your seizure medicines. Your health care provider is the best source for individual information. Visit the Seizure Medication List and talk to your doctor or nurse about safety risks of the medicines you take.
- Be especially careful if you take a medicine that can affect your balance, coordination, walking or vision. These problems can cause people to fall or injure themselves.
- Be aware that some side effects occur from interactions between your seizure medicines or with other ones you take. Any medicine, even over-the-counter and herbal products or supplements can cause problems. Some foods (for example grapefruit juice) can affect medicine levels and lead to too much medicine in the blood.
Several of the older seizure medications may cause thinning of bones when taken for a long time. This can lead to broken bones later in life.
- Medicines that can affect bone health include (but are not limited to): phenytoin (Dilantin or Phenytek), carbamazepine (Tegretol, Carbatrol), phenobarbital, primidone (Mysoline), topiramate (Topamax), and possibly valproate/valproic acid (Depakote, Depakene).
- This is a larger concern for women in mid-life or older, but it also can be an issue for men and women of all ages who take seizure medicines.
- This potential problem is not an emergency and occurs over months to years. Do not stop your seizure medication without discussing your concerns with your doctor.
- Vitamin D3, calcium and regular exercise can help keep bones strong. Some people may need other prescription medicines as well.
- Bone density screening is usually done to check for thinning of the bones and see if treatment is needed. If you haven't had one done, talk to your health care team.
Some seizure medicines interfere with birth control pills and an unexpected pregnancy can occur! These medicines include phenytoin (Dilantin, Phenytek), carbamazepine (Tegretol, Carbatrol), oxcarbazepine (Trileptal), phenobarbital and primidone (Mysoline), felbamate (Felbatol), perampanel (Fycompa), and topiramate (Topamax). Birth control pills can also interact with lamotrigine (Lamictal), causing lower levels of lamotrigine in your body and increasing the risk for seizures.
- Do not stop your seizure medicines or your birth control pill because of this issue.
- Teenage girls and women should talk to their doctors about all their medicines and what the best form of birth control may be for them.
- If you are taking birth control pills and seizure medicines, talk to your doctors (neurologist, gynecologist and primary care).
- Make sure the make and dose of birth control is right for you.
- Use a barrier method of contraception along with a birth control pill.
- Talk to your team about other types of contraception.
Risk of Serious Rash
Some people may develop an allergic rash when taking a seizure medicine. It can also happen with many non-seizure medicines. Sometimes this rash becomes severe, with swelling of the mucous membranes around mouth, eyes or genitals, or blistering of the skin. In these cases, the rash is called the Stevens-Johnson Syndrome (SJS).
- Recent research shows that people of Asian descent have a higher risk for SJS from carbamazepine (Tegretol, Carbatrol).
- Risk is increased with a genetic marker on blood cells called HLA-B*1502, which can found in a blood test.
- About 15% of people from China, Taiwan, Philippines, Malaysia or Indonesia have this marker, versus 3% in people from India and 1% in people from Japan or Korea.
- People of Asian descent should talk to their doctor before starting carbamazepine. A blood test to check the risks of developing this rash could be done.
- If someone has been on carbamazepine for 3 months already, the risk of SJS is supposed to be very little.
- Further studies might indicate a similar situation for other seizure drugs - we don’t have this information yet.
- Talk to your doctor about risks for rash or serious side effects with any medicine you take. Please do not suddenly stop your seizure medicines.
- The risk of serious rash is also slightly increased in some people who take lamotrigine (Lamictal, Lamictal XR). This risk is usually lessened when the drug is started slowly at low doses.
Sudden Unexpected Death in Epilepsy (SUDEP)
It is rare for people to die from a seizure, but it can happen. The most common cause of death in people with epilepsy is SUDEP, or sudden unexpected death in epilepsy Since uncontrolled seizures may play a role, it’s important for people to pay attention to their seizure control.
- Do not suddenly stop your seizure medication, since this can be a risk factor for SUDEP.
- If medicines aren’t working, don’t settle for continued seizures. Talk to your health care team about other options.
- If you have seizures at night, talk to your health care team about a safety plan. Can you share a room or get help in case you have a seizure at night?
- Consider using a seizure alert monitor that lets someone know when you have a seizure.
Risks for Suicide
- Many seizure medicines can affect mood. Some improve depression or other mood states, while others can worsen it.
- The Food and Drug Administration (FDA) has reported that some seizure medications can increase the risk for suicidal thoughts and behavior a small amount. In clinical drug trials of some seizure medicines the risk for suicidal thoughts or behaviors was 0.2% (1 in 500) for those taking placebo versus 0.4% (1 in 250) for those taking epilepsy medications.
- A greater risk for suicidal thoughts is also thought to occur in people with epilepsy due to a greater risk for depression.
- Do not stop your seizure medicine. It could be dangerous and worsen seizures and mood.
- If you have symptoms of depression or other mood changes, please talk about them at your clinic visits. A referral to a psychiatrist for medication therapy or a counselor for talk or behavior therapy may help.
- Regardless of the possible causes, people who notice changes in their thoughts or feel unsafe in any way, should tell a trusted adult right away and seek help.
- If you are thinking seriously about suicide, call your medical providers immediately, or call 911.
- For most people, the FDA warning for seizure medicines is just something to know, but not a reason to change medicines.
Develop a Seizure Safety Plan
- Plan ahead for what you and your family should do during a seizure. Create your own Seizure Response Plan so others know what to do if you have a seizure and how to prevent emergencies.
- Make sure everyone knows seizure first aid
Talk About It! Interview
Michael Privitera MD talks about triggers of seizures. Visit TalkAboutIt.org to watch more celebrity (including Sean Hayes) and expert interviews.
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