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Chronic migraine

Chronic migraine refers to attacks that come back a large part of the month, to the point of forming a permanent way of life rather than an isolated incident. The pain, often on one side of the head and throbbing, frequently comes with nausea, an intolerance to light, noise and smells, and a fatigue that extends well beyond the time of the attack.

As nothing is visible from the outside, those around poorly gauge what this repetition represents. From one attack to the next, there is rarely a true lull: there is the recovery from the previous one and the apprehension of the next, which weighs on plans, sleep and social life.

Many people affected by chronic migraine organise their week around an attack that has not yet arrived. Accepting an invitation means weighing up the lighting of the room, the noise, the time of getting home, and keeping an exit open in case the pain sets in. This constant anticipation is invisible, and yet it takes up a considerable amount of space.

When the attack comes, the world shrinks to a dark and silent room, and everything else waits. When it lifts, there is often a day of fog, slowness and words that come out poorly, before being able to pick up the normal course of things. It is this succession, more than the pain of any given day, that defines chronic migraine.

Pain that extends beyond the attack

Chronic migraine is not limited to the hours of acute pain. There is the phase before, where unusual fatigue, irritability or heightened sensitivity sometimes announce the attack, and the phase after, where the head stays heavy and the mind slowed. Overall, a significant share of time is eaten away, without it being noticed.

Added to this is a difficulty specific to invisible conditions: having to constantly justify absences, cancellations or a drop in pace to people who have seen nothing. This burden of explanation, repeated to each listener, is exhausting on top of the pain.

What helps in living with it

Several levers reduce the impact of attacks:

  • spotting and limiting personal triggers such as lack of sleep, skipped meals, strong lights, screens or certain smells;
  • being able to withdraw quickly to a calm and dark place, at the first signs;
  • an adaptable environment: dimmed light, breaks possible, flexible hours;
  • people around who take the attack seriously, without dramatising or downplaying it.

The heaviest part often remains having to explain again, over and over, what chronic migraine imposes and what the person needs. Having a shared reference point, viewable by a teacher, a colleague or a relative, avoids having to tell this story each time.

Possible accommodations

The adjustments mainly seek to reduce triggers and to allow withdrawal to a calm place.

  • At school: a seat away from sources of bright light, permission to leave at the first signs, catching up on missed lessons and adapted time during attacks; a PAP (a school support plan for students with specific needs, in France) makes it possible to set out these measures.
  • At work: adjustable lighting and screen, the option of remote work or a break in a calm place, flexibility over hours on difficult days; RQTH (official recognition of disability status, in France), via the MDPH (the local disability office), grants access to these adjustments.
  • In daily life: calm and dark places to retreat to, attention paid to sleep and meals, and relatives informed that cancelling an outing is not a sign of disengagement.

Explanations based on your profile

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Chronic migraine explained to a Child

0–12 years old

A chronic migraine is when your head hurts very, very badly, much more than a little ache. It's as if someone were knocking hard on the inside of your head, over and over.

This pain comes back often, sometimes several times a week. When it arrives, the person can't play, go to school or work, they have to rest, often in the dark and quiet, because light and noise make it hurt even more.

It's important to know: this isn't laziness, and the person can't "make an effort" to make it stop. It's like a storm in their head, you can't stop it just by wanting it really hard.

  • Between attacks, the person may feel tired even without a headache
  • Absences from school or work happen without warning
  • The adults who help them need to be patient and let them rest
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