What you need to know about migraine

What should I know about migraine?

What do you need to know about migraine? Above all, that “migraine is not just a headache,” Heather Pim tells us, and that “it is treatable.” The neurologist explains:

• Migraine is a neurological disease;
• It is a complex disease. There is not just one migraine, but many;
• When the headache is accompanied by nausea, vomiting, photophobia (sensitivity to light) or phonophobia (sensitivity to noise), this is characteristic of migraine;
• It can be episodic or chronic;
• It is disabling and incapacitating, often associated with comorbidities such as depression and anxiety;
• Migraine can affect daily life, quality of life, family life, work, interpersonal relationships, social involvement and inclusion.

In Québec, migraine affect 10–12% of the workforce, the majority of whom are women. Children can also be affected. Of the seven types of migraine, migraine without aura is the most common, and 370,000 Canadian adults suffer from chronic migraine.

Diagnosis and treatment

Migraine diagnosis is a sensitive issue, for several reasons:

• 60% of individuals do not receive a proper diagnosis. Other types of headaches can be very painful, such as Horton’s headache;
• In contrast to the“simple headache,” the diagnostic criteria for migraine are precise. Migraine is not visible on CT or MRI scans, nor in the blood. Diagnosis is based on a questionnaire according to the ICHD-3 classification;
• Diagnosis is as important for the person you are caring for as it is for you.

Various forms of treatment are proposed by the doctor or neurologist in a medical treatment plan:

• In recent years, knowledge of the biology of migraine has evolved considerably. This makes it easier to take into account the specific characteristics of each patient, and to prevent attacks with new therapeutic options such as Botox, anti-CGRP, antihypertensive medications, gepants, antidepressants or anticonvulsants;
• It often takes several trials to find the right medication;
• Medication should be considered in conjunction with a thorough understanding of the disease and its triggers, and training in the management of seizures. It’s a comprehensive approach;
• Management must take into account the quality of life of patients and those around them.

Nine words and countless implications for caregivers

• Diversity: the watchword when it comes to migraine, says neurologist Dr. Leroux. “Symptoms vary, as do triggers and treatments". This makes it all the more complicated for you and the person you are caring for;
• Chronicity: migraine episodes recur over time, from a few times a year to several times a week. You constantly expect an attack. You’re on the alert;
• Unpredictability: a migraine can last from 4 to 72 hours, possibly preceded and followed by symptoms. The next time, you may have to take time off work to help the person you are caring for;
• Sensitivity: as the sufferer is often bothered by light, certain sounds and smells, the people around them have to adapt. This can have repercussions on daily life and interpersonal relationships;
• Invisibility: because of the prejudices surrounding it, migraine tends to go unnoticed by society. Who notices your efforts and emotions? Who realizes that you’re supporting the person in your care, even between attacks?
• Controllability: some migraine triggers are controllable. For example, if you live with the person affected, you may be anxious about making the slightest noise that could disturb their sleep and trigger an attack. This forces you to modify your behaviour and can amplify your feelings of guilt;
• Anxiety: once the diagnosis has been made, the first step in managing migraine is to assess your environment with the help of a health professional. You’ll be asked questions about your lifestyle, and you’ll ask them of yourself. You may feel stressed, tense or tired;
• Parenthood: when a child is diagnosed with migraine, the whole family is affected. You wonder about your role as a parent;
• Complexity: a complex neurological disease promotes myths and preconceived ideas. In turn, those involved may find it difficult to see themselves as caregivers.

What if you could find your own words to describe your situation and your needs? There are support groups, activities and resources available to help you meet other caregivers experiencing your situation.

Questions and possible solutions

How can I consider myself a caregiver when my spouse only suffers from migraine once a month on average?

The law defines a caregiver as someone who provides support to someone living with a temporary or permanent disability. Caregivers of people with multiple sclerosis also ask this question.

A recent survey shows that 35% of caregivers do not recognize themselves as such. Recognizing yourself as a caregiver can open doors to resources and services such as respite services, home care and support groups. Contact Caregiver Support for more information!

I’m in a romantic relationship with someone who disclosed to me, after three months, that she was suffering from migraine with aura…

If coping with a partner who suffers from migraine isn’t easy every day, many testimonials show that it can be done, especially with a sense of humour and... a lot of communication!

I’m 16 years old. My mother has had migraines since I was a child. I’ve shown her some applications on the phone, but she doesn’t see the point. How do I convince her?

You care about your mom’s well-being: bravo! You’re right, there are various mobile applications that allow you to assess the type and intensity of the pain, the context in which it was triggered, the medication taken and its effects, among other things. It’s a handy tool for making your crisis calendar or preparing for your next medical appointment. You could also use an app to talk to your mother about her migraine and how you feel about it. You’re not alone: there are many testimonials from young people in your situation. And if your mother is still reluctant, there are calendars you can print out!

My brother confided in me that he has dark thoughts. We’re very close and talk a lot, but I’m still scared. What can I do about it?

Your question shows how migraine can affect mental health and quality of life. Don’t stay silent about your brother’s suffering. There are resources available to support you, such as Avant de craquer, Santé mentale: ressources et références pour guider les aidants or the private Facebook group Partage Migraine Québec. And of course, there are the hotlines of the Association québécoise de la douleur chronique 1-855-368-5387 or suicide.ca, available 24/7 at 1-866-277-3553 (1-866-APPELLE).

My 26-year-old daughter was recently diagnosed with chronic migraine. I’ve done a lot of research, but her friends don’t understand. How can I explain it to help them understand?

It’s perfectly understandable, since chronic migraine is a complex neurological disease, and certain words, such as aura, can be rather intimidating. This basic guide for family and friends and glossary will help you change the way these young people look at migraine!