Anti-seizure medicines for a brain tumor: what they do, and when a change in someone might be the medicine

Why you were put on one. Why somebody who has never had a seizure is usually not given one. What levetiracetam can do to mood and temper, and how to tell that from the tumor. Why the dose is never yours to change, and what to ask about driving.

The short version

An anti-seizure medicine is a daily pill that makes a seizure less likely. It works on the brain, not on the tumor, and it is usually given to somebody who has already had one. If you have never had a seizure, you will probably not be offered one, and that is the guidance rather than your team being mean. The one people are given most is levetiracetam. It can make a person short-tempered, angry or low, and families put that down to the tumor when it may be the pill. That can often be put right once a team knows. The dose is never yours to change, and how much you can do about driving is a question for your own team.

What is it, and what is it doing?

It is a pill that makes your brain harder to set off.

Brain cells talk to each other with small electrical signals. A tumor, and the sore brain around it, can get a patch of them firing together and running away with themselves. That is a seizure. This medicine raises the bar for starting one, so the run is less likely to get going at all.

Two things follow, and both surprise people:

• It does nothing to the tumor. It is not chemotherapy. The tumor is treated by whatever your team is doing about the tumor, and this runs alongside it.
• It works while it is in you. There is no course to finish and no cure in it. It does its job on the days you take it, which is why a missed day is worth taking seriously.

The one used most often for people with a brain tumor is levetiracetam, sold under names like Keppra. There are several others, and newer ones are generally preferred for people having cancer treatment because they get in the way of fewer other medicines. Your team picks from those based on your seizures, your other medicines and what else you have going on.

Nobody can tell you in advance which one will suit you. There is no agreed best choice for seizures caused by a brain tumor. That is a real gap in what is known, not something your team is holding back. It is part of why a first medicine sometimes gets swapped for a second.

Why am I taking one?

Almost always because you have had a seizure. That is the reason the evidence supports, and it is the situation these medicines are for.

There are two other reasons you might be on one:

• You are having an operation, or just had one. Some teams give it around surgery and some do not. This one is genuinely unsettled, and it is covered below.
• Your team thinks some of what you have already had were seizures. Not every seizure looks like the ones people picture, so this comes up more often than you would expect.

If a seizure is what led to your tumor being found, you are in good company. A seizure is one of the usual ways a gliomaglioma: A tumor that starts in the glial cells. Those are the support cells of the brain and spinal cord. Gliomas are given a grade from 1 to 4. The grade says how the tumor is expected to act. See the glossary turns up. What to do when someone has a seizure is the page for whoever was in the room.

Why has nobody given me one?

Because for somebody who has never had a seizure, the guidance says not to.

This is worth spelling out, because being turned down for something that sounds protective feels like being left out, and it is not.

Doctors used to hand these pills out routinely to people with a new brain tumor, in case. Then the studies were done. The guideline that brain tumor specialists work to now says it plainly. If you have a newly found brain tumor and you have not had a seizure, you should not be put on one of these to stop a first one. That is their strongest grade of advice, and it is not a local rule.

The reason is the trade. The studies that were done were small, and several stopped early. None of them found a benefit big enough to be worth what the pills cost you. And they do cost you. They cause tiredness. They change mood in some people. They can affect thinking. Several of them get in the way of cancer treatment. A medicine with those costs, for a benefit nobody could measure, is what the guideline is against.

So being left off it is a decision, not an oversight. Raise it anyway if it is on your mind. The question that gets you a real answer is "what would make you start me on one?" rather than "can I have one?"

One thing this does not settle: the operating room. The same guideline says there is not enough evidence either way about giving these medicines around brain surgery. So teams differ, honestly and openly, and if yours gave you one for your operation they have not broken a rule. It is still worth asking how long you are meant to stay on it.

What happens, step by step

1. You start low. The dose is usually built up over days or weeks rather than started at full strength. The point is to let your body get used to it.
2. The first days and weeks are the bumpiest. Tiredness and unsteadiness are common at the start and after each increase, and for many people they ease.
3. You keep taking it while the dose climbs. It is not judged on the first pill. Your team is aiming for the smallest dose that stops the seizures.
4. Then it is watched. What they are watching is two things at once: are the seizures stopping, and what is the medicine costing you.
5. It may be changed. If the seizures carry on, or the side effects are too much, a different medicine is tried. This is normal and it is not a failure.
6. It carries on for as long as it is needed, which is usually a long time, and any ending is planned rather than sudden.

That watching is the part that needs you. Nobody in the clinic can see what happened at home last Tuesday.

How long will I be on it?

If you have had a seizure, plan on a long time, and ask for the plan anyway.

If a seizure is why you were started on it, expect this to be measured in years rather than weeks. Coming off is a conversation people do have, usually after a long stretch with no seizures, and it is your team's judgment and not a fixed rule.

The short course is the other story. Some people have never had a seizure and are given the medicine only for an operation. They may be meant to stop soon after. For that person, the guideline says stopping after the first week or so is reasonable. That does not apply to you if you have had a seizure. The two situations look identical from the outside. That is why one question does so much work here:

Am I on this to treat seizures I have had, or to prevent ones I have not?

Ask it early. The answer changes everything else on this page.

What does it feel like?

Mostly it feels like nothing, which is the point.

The early weeks are the exception. People describe being heavy-legged and foggy-headed, dozing off in the afternoon, and feeling half a step behind. That usually settles as your body gets used to the dose.

What people are not warned about is the other one. Some people on this medicine find their temper on a hair trigger. Snapping at someone they love. Furious over nothing. Crying at nothing. Or flat and joyless in a way that is not like them. That is not you failing to cope with a brain tumor. It is a known effect of a common pill.

Is it the tumor, or is it the medicine?

This is what people come to this page for, and it is usually somebody's wife, husband or son reading it rather than the patient.

The change in mood and temper

Levetiracetam is linked with irritability, anger, agitation and low mood. It is one of the best-known things about this medicine. People who have had depression or trouble with their behavior before are more likely to get it.

Nobody can give you the odds, and you should be suspicious of anyone who tries. The counts that exist were made in groups of people unlike each other, at doses unlike each other, over stretches of time unlike each other, and they do not land anywhere near one another. Any figure printed here would be borrowed from somebody who is not you. What the counts do agree on is that this is common enough to be one of the usual reasons the medicine gets swapped. They also agree on the other end of it: having to come off the medicine altogether because of this is the exception, and it happens less than it did with the older drugs.

One thing here is rarely said out loud, and people need it: this is not a thinking problem. Levetiracetam is not generally linked with damage to thinking, memory or understanding. It is mood and temper, and that is a different thing from the fear people jump to.

Two things separate the medicine from the tumor, and both are worth knowing.

• Timing. A change caused by this medicine tends to start in the days after it was begun, or in the days after the dose went up. One reported case turned angry within a day of an increase. A tumor rarely changes somebody's temper the day after a prescription changed.
• It goes away again. When the dose is lowered or the medicine is swapped, the mood change usually lifts, and fast. In that same reported case the person was noticeably calmer within two days.

That second one is why this page is worth reading. What a family has been grieving as the person changing may be something a phone call fixes in a week.

What to do is one thing and one thing only: tell the team. Say what changed, and say when it started in relation to the pills. Say it in front of the person if you can, and say it as a problem with a possible answer rather than as a complaint about them.

Do not lower it, split it or skip it yourself, and never stop it on your own. That is true however short your course is meant to be. What the medicine is keeping away has not gone anywhere, and a dose dropped at home is how a seizure gets back in.

Changing it is a small job for your team and a dangerous one for you. So tell them, and let them make the change. That is the whole of what you have to do.

The other things that get blamed on the tumor

• Being tired all the time. Sleepiness is a well known effect of these medicines, so it is not automatically the tumor or the treatment.
• Being unsteady. Poor balance and clumsiness turn up too, and they matter most for somebody who is already unsteady on their feet.
• Feeling low. Which can be the medicine, or the situation, or both. It is still worth saying out loud.

Steroids cause their own version of all this, and the two are very often given together. Steroids covers that medicine on its own, including the muscle weakness that gets read as the tumor spreading.

Thoughts of harming yourself

This one gets its own heading because it gets skipped.

Thoughts of harming or killing yourself have been reported in people taking these medicines. That is not a sign that you are weak, and it does not mean the tumor has taken something from you. It can be a drug effect, and a team can stop a drug effect.

If you are having those thoughts, say so today. Tell your team, or somebody with you. In the United States you can call or text 988, the Suicide and Crisis Lifeline, at any hour, free. Get help now has that number and others to keep on a phone.

If you are the one noticing it in somebody else, say it plainly to their team. It is one of the few things on this page that should not wait until the next appointment.

Does it do anything to the tumor?

No, and you may have read otherwise.

There has been real interest in whether some seizure medicines might also slow a tumor down. It has been studied, and it is not settled. There is not enough evidence to put anybody on one of these pills hoping it will do something to the tumor itself.

So if somebody sends you an article about it, read it as an open question in research. It is not a reason to ask for a particular pill. What decides which medicine you are on is your seizures and your other medicines.

Tell them about everything else you take

Some of the older seizure medicines and some cancer treatments pull each other about, in both directions. This is not a small technical point. It is one of the main reasons your team chose the pill they chose.

• Older medicines can weaken cancer treatment. Three long-established ones do this: carbamazepine, phenytoin and phenobarbital. They speed up how fast your body clears other drugs, including chemotherapy and steroids, which can leave less of the treatment doing its job. If you are on one of those three, it is a fair thing to raise.
• And it goes the other way. A steroid, usually dexamethasonedexamethasone: A steroid medicine given to bring down swelling around a tumor. It is not chemotherapy. It has its own side effects, so your team lowers the dose when they can. See the glossary, can speed up how fast your body clears one of those same three medicines. The level protecting you drops without anything looking different. That matters most when a steroid dose is going up or coming down.
• The newer ones, including levetiracetam, mostly stay out of the way. That is a large part of why they are preferred for people having cancer treatment.

What this means for you is short. Whoever prescribes your seizure medicine needs to know every other thing you take. That includes anything from a pharmacy shelf and anything herbal. And whoever changes your steroid dose needs to know you are on a seizure medicine. Carry a list. This is the sort of thing that falls between two clinics when nobody says it out loud.

Can I drive?

Ask your own team, because it depends where you live, and it is about the seizures rather than about the pill.

The rules are written around seizures rather than around being on a pill: what kind, when the last one was, and what your doctor says. Whoever hands out driving licenses where you live is who decides them, and two places rarely decide the same way.

But a change to your medicine is worth asking about before you drive, because your team may read it as a reason to look at this again.

We do not print a waiting time here, and that is on purpose. A number from somewhere else is worse than no number. Driving and seizures has the whole of it: how the rules are shaped, where to look up your own, and what people do in the meantime.

One rule does belong to the medicine rather than the law. If a pill is making you sleepy, dizzy or unsteady, do not drive. Do not cycle or use machinery either, until that has passed. It is most likely in the first weeks, and after a dose goes up.

How do we know it is working?

By what happens between appointments, which means by what you write down.

Some seizure medicines have a blood level your team can check and some do not. Ask which yours is. Either way, the thing they act on between appointments is your own record.

The aim your team is working towards is no seizures and no side effects worth having. Where that is not possible, they are looking for the best trade you can live with. They cannot find it without knowing what that trade costs you now.

So keep a record, and add the one column this page cares about: what your doses were doing. A seizure in a week you missed two of them tells your team something completely different from a seizure in a week you took every one. Living with seizures sets out how to keep one.

A seizure that gets through is called a breakthrough seizure, and it is information rather than a disaster. It often has a reason: a missed dose, a bad night, being ill. Write down the reason too, if you can see one.

When to call, and what about

This list is about the medicine. It does not replace the list your own team gives you for your tumor, and get help now has the numbers to keep on a phone.

Call an ambulance. Call 911, or your local emergency number, for:

• a seizure lasting more than five minutes
• another seizure starting before they have woken up from the first
• anybody who cannot be woken, or is having trouble breathing
• a first ever seizure
• a rash with blisters, peeling skin, or sores in the mouth or eyes, especially with a fever. This is rare and it is an emergency.
• a swollen face, lips or tongue, or sudden trouble breathing after a dose
• suddenly not being able to speak, move one side, or see

A seizure like the ones you usually have, that stops on its own, is not an ambulance call. What to do when someone has a seizure draws that line properly.

Call your team the same day for any of these:

• You are having thoughts of harming yourself. See above, and call 988 in the United States.
• Somebody's mood, temper or behavior has changed, especially in the days after starting the medicine or after a dose went up.
• You are much sleepier or unsteadier than usual, or you have started falling.
• Your seizures come back after a stretch without them, or change shape, or come more often.
• You are throwing up and cannot keep the pills down. A missed dose is not a minor inconvenience here, and a team has other ways of getting it into you.
• You are confused, or somebody says you are not making sense. Too much of a seizure medicine can do this, and so can other things worth ruling out.
• There is new weakness in your face, an arm or a leg that has not gone.
• You are throwing up again and again.
• You have a rash of any kind.
• You have run out, or you are about to.

If you are not sure which of these it is, phone. That call is a much smaller thing than any of the problems on this page.

What you can do

• Take it at the same times every day. Set an alarm on your phone and leave it set, even once you think you do not need it.
• Use a weekly pill box. It is the cheapest way to answer "did I take it?" without guessing.
• Reorder before you get low. Running out is stopping, whatever the reason.
• Keep a few days' worth in your bag, so a night away is not a problem.
• If you miss one, take it as soon as you remember, unless it is nearly time for the next one. Do not double up to catch up, and ask your team what they want you to do next time, because it depends on the medicine.
• Write down what you notice, especially in the first month and after any change.
• Tell them about your mood. It is information, not complaining, and it is the thing this page most wants you to say.
• Ask before you add anything, including things from a pharmacy shelf.

For the person caring for someone on a seizure medicine

If you are the one driving to the appointments, keeping track of the pills, and lying awake at night worrying about them, this part is for you.

You are allowed to ask questions. In one study, families said they were afraid of annoying the doctor by asking too much. One of them was told by a doctor to stop playing doctor. Ask anyway. Write your questions down before you go, and bring a notepad. Two people in the room hear more than one.

Ask who your first call is. Care comes from a lot of people at once, and it is easy to end up as the only one holding it together. Ask the team: who do I call first? Some teams have one person whose job this is, often a nurse. Get the name and the number.

Get two numbers, and know which one to use. One for work hours, one for nights and weekends. Then ask what counts as "call us today" and what counts as "call an ambulance" for this tumor, and write the answer down where you can see it. If you are not sure which it is, call. Nobody on that team will mind.

If they have seizures, read about them before you need to. What to do when someone has a seizure is the one to know by heart. Living with seizures is about the rest of the time: what is safe, what to change, and driving.

Ask to be shown anything you are sent home to do. In that same study, families were sent home to change dressings and give medicines with no training at all. That is not fair to you. Before you leave the hospital, ask someone to show you. Then do it once while they watch.

Say what you notice. You may see a change before they do. Changes in thinking, mood and behavior can show up to the people close by first. Telling the team is not going behind their back. It is something the team cannot learn any other way.

Look after yourself, and let people help. Eat, sleep, and keep your own appointments. Take a little of the day back for yourself. When someone asks what they can do, give them a real job: a meal, a ride, an hour with the kids. Most people want to help and do not know how to offer.

You can talk to somebody about all of this today. See where to get help.

Three things that belong to this medicine in particular.

Bring the dates, not the diagnosis. The block above says to say what you notice; for this medicine, when you noticed it is what the team needs. Line up what changed against what the prescription was doing. "He has been snapping since the dose went up two weeks ago" is worth more to a team than "he has not been himself", because the first one can be tested and the second one cannot.

Say it in front of them. It is their medicine and their life, and a report made behind somebody's back lands badly when it comes out. It also usually turns out they had noticed something too.

Doses get missed when somebody is ill, tired or muddled, and that is exactly when a missed dose matters most. It is a fair thing to help with and a hard thing to take over. A pill box and a shared alarm let you help without either of you having to talk about whether they can manage.

What to ask your team

• Am I on this to treat seizures I have had, or to prevent ones I have not?
• How long do you expect me to be on it?
• What do I do if I miss a dose?
• Could this be changing my mood or my temper?
• What would make you change me to a different one?
• Does it get in the way of my other medicines, or my treatment?
• Do I need blood tests for it?
• What are the driving rules where I live, and who tells the licensing people?
• What should I write down between appointments?
• Would you ever try coming off it, and what would have to be true first?
• Who do I call about this medicine, after hours?

Where to go next

• What to do when someone has a seizure for the steps, in order, and when to call an ambulance.
• Living with seizures for driving, work, triggers and the diary.
• Steroids for the other medicine that gets blamed on the tumor.
• Brain surgery for the days around an operation.
• Getting ready for surgery for the questions about your medicines that come up before an operation.
• Brain tumor types if you want the page for your own tumor.
• Get help now if you need to talk to a person today.