A Message to Youth with Migraine

You just heard it from the doctor – migraine. I’m sure you’ve heard the word before – it conjures up images of headache, throwing up, missing school. But just what is migraine, and where do you go from here?

When you unwillingly entered the world of “migraine”, you entered a world of cutting-edge medicine, history, politics, scams, misunderstanding and community. We know that migraine as a disease has existed since earliest recorded history. It’s a massive problem in the modern world – considered by many to be one of the top 10 disabling conditions globally. So it’s a real condition, and a very big deal socially, financially – and personally!

I’ve been there. Diagnosed as a teen (although I probably had symptoms long before I was diagnosed). Trying many treatments that didn’t work. Literally writhing on the floor in pain. Well, you don’t want to hear the gory details!

Here are some of the things that you need to know now in order to navigate the world of migraine.

• Learn the basic vocabulary. There is no cure for migraine, and no one is sure of the cause. We know a lot about the migraine chain-reaction, a lot more than we knew when your parents were your age. However, experts still disagree about underlying cause. You’ll need to know the word “trigger” – something that sets off the migraine chain-reaction. For example, for some people, if they eat a banana, this will “trigger” a migraine attack. The banana doesn’t cause the attack, but it sets it off if you’re predisposed. It’s preferable to say that someone has migraine (the disease), and sometimes has migraine attacks.
• This is not something to “just live with”. Although it is common to have migraine, it’s not something that is “normal” and that you should just settle down and live with. You should not be getting headaches, and you should get help and find good treatment. Migraine can take a lot of time out of your life, and it may even lead to permanent damage. Don’t panic – but don’t give up either. Early treatment can mean a huge improvement in quality of life down the road.
• Why now? It is very common to be diagnosed with migraine for the first time in your teens. Naturally, there is a connection with development and hormones in both males and females – but particularly in young women. This can be a blessing in disguise, and can help you narrow down what is triggering your attacks. More on that below.
• Diagnosis can be tricky. Chances are that your doctor did diagnose you correctly. The most likely challenge is learning what type of migraine you have, and what treatment will be most effective. Don’t assume that the diagnosis of “migraine” is final.
• Everyone is different. Our bodies are very complex. Just because your Mom or best friend has migraine, doesn’t mean your symptoms will be the same. Attacks may be severe or mild, frequent or rare, regular or unpredictable. Symptoms can vary widely – some people with migraine don’t even get headaches, but experience visual auras. Some throw up, some can’t stand light or the slightest noise.
• Treatment takes time. Migraine is in the category of neurological disorders (such as epilepsy). Many preventative drugs and other treatments need to be tried for 3 months before you can tell if they’re working.
• You need to prioritize. There are so many treatments for migraine today that you could never try them all. However, there are some that work for many people, some that only work for a few, some that may not work for you because of your personal make up and medical history. Your doctor will help you try the treatments that are most likely to work for you, so that you won’t waste time and money (and discomfort!) on the many treatments (and sometimes scams) that you will see online.
• Take notes. Doctors and specialists rely heavily on information about your symptoms in order to help you. They need to know how often you have an attack – how long – where is the pain (if there is pain) – what the symptoms are. Find a way to keep a “migraine diary” that works for you. For a flexible method using paper, try A Migraine Diary: The Lazy Way. Many apps are also available, but be sure they allow you to include all relevant information. Also, if you notice a significant change in symptoms, tell your doctor right away.
• For the women: If the attacks are somehow related your monthly cycle, there are treatment approaches that may work better for you. There are two common types of menstrual migraine. For more on the challenges of treating migraine related to your cycle, see 8 Reasons why Menstrual Migraine is “different”
• It’s not “stress”. I hate to add this to the list, but it is still far too common for even doctors to say that you’re “just stressed”. You know, you have all those exams coming up – that must be it. Well, that’s not it. Lots of people have been under huge amounts of stress and have never had a headache. Do not let the “stress” diagnosis keep you from proper diagnosis and treatment.

Treatments

As I mentioned above, there is a long and sometimes confusing list of possible treatments for migraine. Your doctor will help you decide if you need abortive treatment (something to do/take when a migraine attack hits) and possibly a preventative treatment (something to do/take on a regular basis) (see How many headaches are too many in a week?).

Your doctor may recommend lifestyle changes, such as avoiding certain foods, or getting on an exercise schedule that works for you.

Some of the best treatments that your doctor may recommend first include: magnesium, triptan type medications (such as sumatriptan), and biofeedback. Beta blockers and antiseizure medication (the same meds used for epilepsy) are also common.

Keep an open mind and take the time to try what your doctor suggests. However, if you feel your doctor doesn’t understand or is not listening to you, or doesn’t really understand migraine treatment, it’s time to go to someone else. A neurologist who specializes in migraine treatment is the way to go if possible.

Finally…

I hope that you will get rid of these symptoms soon – and there is a lot of reason to hope. You’re probably not going to die from these symptoms, and you probably will find good treatment options soon.

Yes, the road has been long for many people. But we know a lot more than we did 20 years ago. And there are many, many people who are looking for answers with you – advocates and researchers like myself, doctors and specialists (many of whom have migraine too), and scientists who are working on the cutting-edge. You are not alone.

Although migraine sufferers are still sometimes stigmatized, that is happening less, as good information gets out there and good research is being done. You can be a part of the fight against migraine, the fight for positive research and treatment.

If you know a teen who has been newly diagnosed with migraine, feel free to share this article.