2023-06-09 06:00:00
– Why doctor: When did your first migraines appear?
Joana – I became a chronic migraine sufferer* in 2016. I was 26, and it hit me all of a sudden, without warning.
Before that, I had occasional headaches, but nothing major.
– Was there a trigger?
Yes, my condition has worsened due to complications from surgery.
– How often do you suffer from migraines?
I have at least 15 migraine attacks a month, more than every other day.
– How long does a seizure last?
An attack lasts between 24 and 72 hours, knowing that we migraine sufferers go through three phases:
– The prodrome, which corresponds to the period before the migraine.
– Crisis.
– The postdrome, also nicknamed “migraine hangover”which defines the time after the crisis.
– Can you try to describe to us what you feel during crises?
During the prodome, a few warning signs of the crisis, which are very difficult to detect, begin to set in (yawning, irritability, sensitivity to light, etc.).
During the crisis, an indescribable pain hits me on one side of my head and increases with each movement I make. I then have difficulty speaking and concentrating, while I can no longer bear the light or the noise. I also suffer from nausea or vomiting, and I need to be in an airy place.
Finally, when comes the postdrome, I am exhausted, a bit like I had run a marathon.
In fact, there is not a single day when I feel good about myself.
– On a scale of 1 to 10, how much pain in your head do you rate during your migraines?
A 10. Some compare the pain of migraines to that of childbirth.
– How are you taking care of yourself?
During crises, I take medication to try to make it pass and I lie down in the dark without any noise.
I’m also testing a number of disease-modifying treatments, none of which have lastingly improved my situation.
– Do you also put things in place in terms of your lifestyle?
Certain reflexes actually allow me to reduce my triggers, such as avoiding alcohol, exposure to the sun, chocolate, Roquefort, Bleu d’Auvergne…
– Are you satisfied with your medical care in France?
No. It is a very difficult healing journey.
– Do your migraines affect your daily life?
Yes. I lost everything, chronic migraine ruined my life.
I was first deprived of my job as an accountant without ever succeeding in honoring another, despite an attempt at professional retraining and numerous formulas tested (part-time work, self-employed status, etc… ). Whatever the position and its organization, I can’t drive or take transport to get there, I can’t meet deadlines and I’m too often absent to be able to pass the trial periods.
I also have a very diminished social life, because I can’t stand the cinema, restaurants, family meals, television, the sun… Everything triggers a crisis, so I live at home 24/7. I couldn’t even attend my sister’s wedding in its entirety and I haven’t celebrated Christmas for years.
However, I am extremely lucky to still be with my spouse, who knew me before the chronic migraine and who became my official caregiver.
– Can we speak of disability in your case?
Of course, chronic migraine is a real disability that should be recognized as such. With the association The voice of migraine suffererswe fight for it.
– For what ?
Because as I explained above, I can no longer work, but I do not benefit from the handicapped allowance. At 33, I therefore have no financial resources, and I am dependent on my mother and my grandmother.
– In your opinion, what should be improved for migraine sufferers in France?
First of all, we should help migraine sufferers to recreate social ties, because this disease isolates us enormously, to the point that some of us think about suicide or take action, as was the case for me.
We should also provide migraine sufferers with more information, because we are sorely lacking in it.
These two objectives are an integral part of the new awareness campaign “Put your migraine on pause” that we are going to launch on June 21 with the association mentioned above.
*There are three stages of migraine: migraine (level 1 on the severity scale), severe migraine (level 2) and chronic migraine (level 3).
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