Living with seizures

What you can still do, what to change, and what to be careful about. Most people are told to do less than they need to.

The short version

Most people with seizures are told to do less than they need to. Being active is good for you, and for most people it does not make seizures more likely. Some find it makes them less likely.

And a small number of people do get a seizure brought on by hard physical effort. If that is you, and you have noticed it more than once, you are not imagining it. Write it down and take it to your team.

Both of those are true at the same time. This page is about finding your own line, not somebody else's.

It is rarely the activity. It is what you would fall into, onto, or from.

That one idea does more work than any list of banned things.

Cooking is not dangerous. A pan of hot oil you would fall onto is. Swimming is not dangerous by itself. Swimming alone is. A bath is riskier than a shower for one reason: in a bath, your face can end up under water.

So when you wonder about something nobody wrote a page about, ask three questions:

• If I had a seizure doing this, what would I fall into, onto, or from?
• Would anybody be there?
• Can I change that part and keep the rest?

Usually you can.

Water

This is the one to be strict about. A seizure in water is life-threatening in a way that a seizure on a carpet is not.

In the bathroom:

• Take showers, not baths.
• Do not lock the door. Hang a sign on it instead, so you still get your privacy.
• If you can, hang the door so it opens outward. A door that opens inward can be blocked by someone lying against it.
• Put non-slip strips in the shower, and use a curtain rather than a glass screen. Somebody can get through a curtain in seconds.
• Keep the water cooler than you might like, so a fall does not become a scald.
• If you fall during seizures, sit down to shower and use a hand-held nozzle.
• Try to shower when there is someone else in the house.

Swimming and boats: never alone. Go with somebody who knows you have seizures and knows what to do in the water. A friend who knows beats a lifeguard who does not. Wear a proper life jacket around boats and open water.

Keeping the things you like doing

Small changes, so the answer is "yes, differently" instead of "no".

• Cooking: use the back burners, or a microwave, so you are not reaching over a flame. Use a food processor instead of knives when you are on your own. Buy some things ready-chopped. Sit down to eat, and use unbreakable plates.
• Heights: ladders, roofs and step stools are the classic ones. Get somebody else to change the bulb, or hold the ladder.
• Exercise: most of it is fine. Use a running track or a path rather than a treadmill on your own. Wear a helmet on a bike and stay off busy roads. Take a buddy for weights.
• Team sports are generally fine, and people with seizures are no more likely to get hurt playing them than anyone else.
• Around the house: fewer glass tables and loose rugs, more soft flooring, covers on sharp counter corners, a guard on the fire.

The point of every one of these is to keep the thing, not to lose it.

Exercise, honestly

Being active helps: your heart, your mood, your sleep, and often your seizures. People with epilepsy take part in sport less than other people do. For years they were told to avoid exercise, in case it set off a seizure. The evidence now points the other way.

Exercise setting off a seizure is uncommon. When it does happen, it tends to happen to the same person again, and harder effort makes it more likely. So if you have noticed that pattern in yourself, take it seriously, and take it to your team. There is a middle setting between "run a marathon" and "sit down": shorter sessions, easier effort, someone with you, breaks and water.

Your team can help you find that setting. Ask them.

Things that can bring a seizure on

Triggers are personal. Some people have none. These are the ones worth watching:

• Missed doses. For many people this is the most common trigger there is. Set an alarm. Use a weekly pill box. Keep a spare few days' worth in your bag.
• Sleep. Too little, or poor quality, makes seizures more likely for most people. A regular bedtime and wake-up time does more than anything else here.
• Alcohol. The risk is not usually while you are drinking. It is in the 6 to 72 hours after, as it wears off, and it rises sharply with three or more drinks. Ask your team what is sensible for you and your medicines.
• Being ill, especially with a fever.
• Heat, and not drinking enough.
• Stress, including good stress.

You do not have to guess which of these matter for you. That is what the diary is for.

The diary is the thing that changes treatment

Write down every seizure: the date, the time, how long, what happened, and what was going on that day. A notebook, a wall calendar or an app all work. Ask whoever saw it to add what they saw, because you were not there for it.

Two reasons it is worth the bother:

• It is the single most useful thing you can hand your team when they are deciding whether a medicine is working.
• It is the only way to find out whether the trigger you suspect is real. Look at how often the trigger happened without a seizure too. That is the part people skip, and it is the part that tells you the truth.

Driving

This is usually the biggest practical change, and often the hardest.

Every US state has rules about driving after a seizure, and they are not the same. Most states ask you to be free of seizures for a set length of time and to have a doctor confirm you are safe to drive. Some ask for medical reports after that, sometimes for as long as you hold a license. Whether you tell them, or your doctor does, also varies.

We do not print the waiting time here on purpose. It depends where you live, and a number from the wrong state is worse than no number. Two things to do instead:

• Look up your own state in the Epilepsy Foundation's driving laws tool.
• Ask your care team directly. They deal with this constantly, and they know what your state expects.

Outside the US, the same shape applies: there are rules, they are set by whoever issues your license, and your team can tell you where to look.

Losing your license is a real loss. It is not fussiness to be upset about it. It takes away independence, sometimes work, and it lands on the person who was already dealing with everything else.

Things that help: ask your local transit agency what they run for people who cannot drive, since many have door-to-door or cheaper fare schemes; set up a standing arrangement with one or two people instead of asking each time; move what you can to delivery; and ask your employer about working from home or different hours.

The rules are written so that people can drive again once they meet them. Ask your team what that would take for you.

Work

You do not have to tell an employer everything. In the US, the Americans with Disabilities Act protects you, and it also means adjustments are a normal thing to ask for, not a favor. Telling the people you actually sit near is a different decision from telling the company, and it is worth making that one on purpose.

Practical version: give one or two colleagues a short written plan of what a seizure looks like for you and what to do. It turns a frightening event into something people know how to handle.

Being over-careful has a cost too

It is easy to shrink your life a little at a time. So is having somebody else shrink it for you, usually because they love you and are frightened.

A partner who watches you constantly, or takes the knives away, or stops you going out, is not being unreasonable. They are scared, and often nobody has told them what is actually risky and what is not. Read this page together. Agree on the few things that genuinely need changing, and then agree on what stays.

If you are the one caring for someone, what to do when someone has a seizure is written for you, and every tumor page has a section for you as well.

Keep these handy

• Medical ID: a bracelet or necklace, and the medical ID on your phone, which a stranger can reach without your passcode.
• A written seizure action planseizure action plan: A short written page that says what your seizures look like, what people should do, whether you have a rescue medicine, and who to call. You keep copies where they will be needed. See the glossary for family, work or school: what it looks like, what to do, what not to do, when to call an ambulance, who to call.
• Spare medicine in your bag, and a list of what you take.
• Alarms for doses, and a reminder to reorder before you run out.

Words your team may use

A tonic-clonic seizuretonic-clonic seizure: The kind of seizure most people picture. The muscles stiffen, then the arms and legs jerk, and the person is not awake for it. Most last one to three minutes. An older name is grand mal. See the glossary is the kind most people picture: stiffening, then jerking, and no memory of it. A focal seizurefocal seizure: A seizure that starts in one part of the brain. Some people stay aware through it: twitching, an odd smell, a feeling hard to name. Others lose awareness, and that kind used to be called complex partial. See the glossary starts in one part of the brain: some people stay aware right through one, and some do not. Status epilepticusstatus epilepticus: A seizure that lasts more than five minutes. Or seizures one after another, with no waking up in between. This one is an emergency. Call an ambulance. See the glossary means a seizure that will not stop on its own, and it is an emergency. A rescue medicinerescue medicine: A medicine kept at home to stop a seizure that is going on too long. Depending on which one your doctor picks, it goes up the nose, under the tongue, or into the bottom. See the glossary is what some people keep at home for that.

There are more of these in the glossary.

What to ask your team

• What kind of seizures do I have, and what should I expect them to look like?
• Is there anything you would actually tell me not to do, and why?
• I think X sets mine off. Does that fit what you see?
• What are the rules about driving where I live, and when could that be looked at again?
• Should I have a rescue medicine at home?
• Who do I call if the seizures change?

If someone is having a seizure right now, go to what to do when someone has a seizure.