Talking to others about what helps when you have a migraine headache

You may want to talk to friends, family, and colleagues about living with migraine headache. This may help avoid misunderstandings about what you are going through and how they might help. Keep in mind that those who don’t experience migraine headache symptoms firsthand may not understand the seriousness of migraine. They may also not appreciate the impact migraine headache symptoms can have on your life.

mystory is about overcoming the stigma of migraine

When I first started having my migraines, people around me used to say to me, ‘You just complain too much about your headaches’ and ‘Why can’t you just get over them?’ And I felt very isolated because no one seemed to understand that this wasn’t just a bad headache.

Watch Betsy talk about her experience with the stigma that can come with migraine. Betsy turned to once-a-day Trokendi XR (topiramate) as her migraine prevention medicine.


Individual results may vary.
Betsy

How to describe a migraine and talk to friends and family about migraine headache symptoms

The best time to talk is generally when you are not in pain. Remember, migraine can be a “family affair” that affects everyone.

Some good discussion points may include:

  • Signs that may signal for you that a migraine headache is coming (a migraine aura, for example)
  • Your migraine triggers (stress or loud noises, for example)
  • A description of your migraine headache symptoms (such as feeling sensitive to light or sounds or nauseated)
  • Your migraine treatment plan, including migraine prevention medicine
  • What helps you manage your migraines—how you cope when you are having migraine symptoms (being in a completely dark room, for example)
  • How long your migraine symptoms typically last
  • How frequently your migraine headaches occur
  • What they might be able to do to help you when you have migraine symptoms (from understanding that you might miss social activities, to helping you with your household chores, to just letting you be in a dark room until you feel better)

Talking to your children about migraine—simple is best

Many parents worry about what and how much to tell their children when they are in pain. What you decide to tell your child about your migraine will depend on many factors, including your child’s age. If your child can understand the concept of “it hurts,” you have a good starting point to describe migraine symptoms. Here are some sample statements to help start a conversation about migraine:

  • “You may have wondered why I take different medicines for my migraine headache”
  • “You may have wondered why I sometimes have to stay home and rest and cannot go to your soccer games or drive you to a play date”
  • “Some kids worry when they know their parents go to a doctor a lot, so let me tell you how my doctor is helping me”
  • “Sometimes when my head is hurting and I am feeling bad, it may seem like I am upset with you, but I’m not”

Be honest and straightforward about what you are experiencing with migraine. This may help your kids understand why you miss certain activities. Make sure your children understand that they are not the source of your pain.

You and your family can also work together to create a migraine action plan. For example, you can plan a backup for household chores or getting the kids to school and activities.

Talking to colleagues and employers about migraine

Very few people’s lives are not touched by some form of illness. Migraine headache is an illness that affects millions of people.

Having said that, every workplace is different, and what you choose to disclose to your employers or co-workers about your migraine headache symptoms is up to you.

The possible advantage to sharing information is that it may be easier to work around those times you have to miss work if your employer and coworkers understand migraine and what you are doing to manage them. Here are some tips:

  • Don’t focus too much on migraine in everyday professional conversations. Just do the best job you can when you are able
  • If you cannot work or feel too sick, consider going home during a migraine headache
  • Don’t work through lunch or skip meals because you have to work. Not eating during the day is a common migraine trigger
  • If your work area is too bright, ask if you can adjust the lighting or move where you sit
  • Use an antiglare screen on your computer to avoid monitor settings that can trigger migraine
  • Ask coworkers to be mindful of using too much perfume or cologne as strong odors may be a migraine trigger
  • And be mindful too that stress is a common migraine trigger

Talking to your prescriber about migraine headache

Perhaps the most important person you should be talking to about migraine headache is your prescriber. Effective migraine medicines are available—but many with migraine don’t try them. Some don’t have a proper diagnosis and may mistakenly believe they’re just suffering from severe headaches. Others avoid seeking help for a variety of reasons.

Studies show that about 40% of adults with migraine are candidates for preventive therapy, yet only about 12% of adults with migraine take migraine prevention medicine.

See Treating Migraines to find a headache specialist near you.

IMPORTANT SAFETY INFORMATION

Do not take Trokendi XR if you have recently consumed or plan to consume alcohol (i.e., within 6 hours prior to and 6 hours after Trokendi XR use)

Swallow Trokendi XR capsules whole. Do not sprinkle on food, chew, or crush.

What are the possible side effects of Trokendi XR?

Trokendi XR can cause serious side effects, including: Eye problems. Serious eye problems include sudden decrease in vision with or without eye pain or redness, a blockage of fluid that may cause increased pressure in the eye (secondary angle closure glaucoma). Call your healthcare provider right away if you have new eye symptoms, including any new problems with your vision.

Decreased sweating and increased body temperature (fever). People, especially children, should be watched for signs of decreased sweating and fever, especially in hot temperatures. Some people may need to be hospitalized for this condition.

Increased levels of acid in the blood (metabolic acidosis). If left untreated, metabolic acidosis can cause brittle or soft bones (osteoporosis, osteomalacia, osteopenia), kidney stones, can slow the rate of growth in children, and may possibly harm the unborn child of pregnant patients.

High levels of ammonia in the blood. High ammonia in the blood can affect mental activities, slow alertness, cause tiredness, or cause vomiting. Blood ammonia levels have been shown to rise when Trokendi XR is taken with a medicine called valproic acid (e.g., DEPAKENE® and DEPAKOTE®).

Kidney stones. Drink plenty of fluids when taking Trokendi XR to decrease your chances of getting kidney stones.

Low body temperature. Taking Trokendi XR when you are also taking valproic acid may cause a drop in body temperature to less than 95°F, tiredness, confusion, or coma.

Effects on thinking and alertness. Trokendi XR may affect how you think, and can cause confusion and problems with concentration, attention, memory, or speech. Trokendi XR may cause depression or mood problems, tiredness, and sleepiness.

Dizziness or loss of muscle coordination.

The most common side effects include tingling of the arms and legs (paresthesia), not feeling hungry, nausea, weight loss, abnormal vision, a change in the way foods taste, nervousness, speech problems, dizziness, slow reactions, upper respiratory tract infection, sleepiness, diarrhea, pain in abdomen and difficulty with memory. These are not all the possible side effects of Trokendi XR. For more information, ask your healthcare provider or pharmacist.

Like other antiepileptic drugs, Trokendi XR may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Before you take Trokendi XR, tell your healthcare provider if you have or have had depression, mood problems, or suicidal thoughts or behavior. Call a healthcare provider right away if you have thoughts about suicide or dying; have attempted to commit suicide; have new or worsening depression or anxiety; feel agitated or restless; experience panic attacks, trouble sleeping (insomnia), or new or worsening irritability; feel or act more aggressive, angry, or violent; act on dangerous impulses; have an extreme increase in activity and talking (mania); or experience other unusual changes in behavior or mood.

Before taking Trokendi XR, tell your healthcare provider about any other medical conditions, including if you have kidney problems, kidney stones, or are getting kidney dialysis; have a history of metabolic acidosis (too much acid in the blood); have liver problems; have weak, brittle or soft bones (osteomalacia, osteoporosis, osteopenia, or decreased bone density); have lung or breathing problems; have eye problems, especially glaucoma; have diarrhea; have a growth problem; are on a diet high in fat and low in carbohydrates, which is called a ketogenic diet; are having surgery; are pregnant or plan to become pregnant; or if you are breastfeeding. Trokendi XR passes into your breast milk. Breastfed babies may be sleepy or have diarrhea. Talk to your healthcare provider about the best way to feed your baby if you take Trokendi XR.

Trokendi XR can harm your unborn baby. If you take Trokendi XR during pregnancy, your baby has a higher risk for the birth defects of cleft lip, cleft palate, and being smaller than expected at birth. These defects can begin early in pregnancy, even before you know you are pregnant. The long term effects of this are unknown.

Tell your healthcare provider about any other medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. Trokendi XR and other medicines may affect each other, causing side effects. Especially tell your healthcare provider if you take valproic acid (e.g., DEPAKENE or DEPAKOTE); any medicines that impair or decrease your thinking, concentration, or muscle coordination; or birth control pills. Trokendi XR may make your birth control pills less effective.

Do not stop Trokendi XR without first talking to a healthcare provider. If you have epilepsy and you stop taking Trokendi XR suddenly, you may have seizures that do not stop. Your healthcare provider will tell you how to stop taking Trokendi XR slowly.

Do not drive a car or operate heavy machinery until you know how Trokendi XR affects you. Trokendi XR can slow your thinking and motor skills, and may affect vision.

INDICATION Trokendi XR® (topiramate) extended-release capsules are used to prevent migraine headaches in adults and adolescents 12 years and older.

Please refer to the full Prescribing Information and Medication Guide for additional important information on Trokendi XR.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.