Dare to go the distance

So many questions arise when a person has seizures. A huge step is to figure out if treatment is needed, then what kind of treatment and when should it be started?

Let’s highlight key steps and what you can do as you start your treatment journey.

Non-Urgent Situations

Most often, a person has a seizure, or maybe more than one over a period of time, before they realize what it is. Usually treatment decisions are made after tests and discussions with your health care team in an outpatient or clinic setting. This would be a non-urgent situation, meaning you are not in the midst of a medical emergency or hospitalized at the time of starting treatment.

  1. The main treatment approach is taking seizure medications. As a group, medications to treat seizures are known as anti-epileptic drugs or AEDs, anti-seizure drugs or ASDs, or anticonvulsants. These are all the same group of drugs. The different terms refer to what the medicines are intended to do.
    • AEDs or anti-epileptic drugs is the term used most often. The medicines are geared to stop seizures. Unfortunately, they do not prevent epilepsy or even stop the underlying brain changes that underlie epilepsy. Ideally, we want a treatment to prevent epilepsy, though we don’t have this yet.
    • ASD or anti-seizure drug is a term being used now. This term more accurately shows what current medications and treatments do – stop or control seizures.
    • Anticonvulsants is an old term used to refer to seizure medications when people thought all seizures were convulsions. Yet there are many seizure types that do not involve convulsions (also known as tonic-clonic seizures). Thus, this term isn’t really accurate but is still used.
  2.  How are seizure medications chosen?
    • Read about all the different seizure medications currently available. Medicines may be known under different names in different countries. Be familiar with the generic and brand name of the drug as you may hear these names used together.
    • Seizure medicines are chosen based on finding the best medicine for your type of seizure and epilepsy
    • When considering a seizure medicine, it’s important to tell your health care team about yourself. For example,
      • Your age – some medicines are better for adults than children or the opposite may be true.
      • If you have a history of allergies to medicines – some medicines may be similar to others the person does not tolerate, so it’s important to share any past allergies with your doctor or nurse.
      • Other health conditions – some medicines may help other conditions or worsen them. For example, some seizure medicines may stabilize or improve mood and others could lead to mood changes, especially if a person had mood problems before the medicine was started. Other conditions that may be affected include pain, migraines, weight, sleep, cognition, or thinking abilities. This is not a complete list, so talk about all your health concerns with your providers.
  3. There is no one seizure medicine and no best dose that works for everyone. A drug will need to be tailored or adjusted to each person. Give a medicine time to work and time for you and your team to find the best dose for you – a dose that controls seizures and does not cause side effects.
  4. If the first medicine doesn’t work, talk to your team about next steps. Don’t settle for continued seizures if the first medicine doesn’t work. Of course make sure that the drug has been tried at the best dose (or highest that you can tolerate) for a long enough time. For most medicines, this means taking a drug for a number of months to see how well it works and if any side effects occur. If a person has seizures on a daily or weekly basis, they may not need to wait this long to know if a drug will help or not.
  5. Talk openly with your team about trying a different medicine and how this would be done. Sometimes it may make sense to bring you into the hospital to make a change, but most often it can be done at home. A new drug would be added, and, if you do well, the first drug would be slowly taken away.
  6. Do not change or stop a seizure medicine on your own without medical help. This could lead to many problems, including seizure emergencies.
  7. When medicine changes are made, ask about the practical steps in making changes. Here’ are a couple things to look into…
    • How long will the change take?
    • Will it affect your ability to work, drive (if you are driving at the time), or do any of your usual activities?
    • What monitoring will be needed? Lab tests? Doctor’s office visits more often?
    • What side effects to look for?
    • Women should ask if a new medicine will affect birth control, menses, or pregnancy. If so, what other steps should be taken?
    • Will insurance cover it, and if not, what can be done to help you get and afford the drug?

Urgent Situations

If you’ve landed in an emergency room or been hospitalized after a seizure, the doctor may recommend starting medicines right away. Usually medicines are begun if a person has more than one seizure, if the first seizure is complicated or lasts a long time, or if a person is at risk for more seizures. There are other things to consider too, but this is a starting point.

  1. If you’re asked to take a medicine right away, still take time to collect information. You may not be in a position to ask the questions or remember the discussion, but maybe a family member can do this for you. Find helpful forms for talking with your health care provider in our Toolbox.
  2. When a medicine is started in the hospital, often a larger dose than usual is given – this is called a loading dose to get the drug into your system faster. If the medicine can’t be given quickly or in a loading dose, you may be given a couple of medicines: one to calm seizures down right away and another to build up more slowly at home.
  3. Make sure you get written instructions about any medicines given to you in the hospital along with what to take at home.
  4. Make sure you have a follow up appointment within a few weeks with a doctor or nurse (ideally a neurologist or epilepsy specialist) who will help you manage the seizures over time. Here’s help finding an epilepsy specialist.
  5. Also make sure you have a seizure response or rescue plan. This is a document that tells what kind of seizures you have, what medicines you take daily, what to do if more seizures happen, when to seek emergency help, and if other medicines or treatments can be used when a seizure happens at home.

Tracking and Managing Seizures and Medicines

  1. How well a medicine works will depend a lot on how you feel. This information needs to come from you – what you observe and feel and what others may see as well. Observations from others like family or friends can be very helpful since many times people don’t know what happens during a seizure or when one occurs. What to look for includes…
    • Are seizures less often? How many have you had since the last dose change?
    • Are seizures less intense or severe? Are they different in any way since the medicine was started?
    • Any side effects? If so, what kind and how bad or bothersome are they?
    • Are seizures or medicines affecting your health, mood, and daily activities in any way?
  2. In some types of epilepsy, an EEG test may be done to see how a person is responding to a medicine change. Changes in the brain’s electrical activity may give helpful information for some seizure types about how likely you are to have more seizures. This will help you and your team decide on next steps.
  3. Your role in treating seizures.
    • You are the captain of your team. You and your loved ones make the decisions, but you need help and recommendations from your health care team.
    • Your team needs information from you! Find a way to track your progress in writing. Keep a journal, paper log, or better yet, use our online My Seizure Diary to track your seizures, medicines, health, triggers, and more. Track events daily to see progress toward seizure freedom. If you aren’t making the progress you want, you’ll be able to go over this data with your team and use it to make informed decisions.