Explaining Migraines to Someone Who Doesn’t Believe They Are Real

By Anonymous Latest Activity July 2, 2015 at 6:03 pm Views 5,092 Replies 38 Likes 2


By C. Falkner for Migraine Connect

If you suffer from migraines, chances are you will encounter people who do not understand your condition.

“Oh, come on. A headache can’t really be that bad.”

Hearing those words from someone who has never had a migraine may not only be frustrating, it could be infuriating. It is almost impossible to explain the pain of a headache to another person—let alone the complex panoply of symptoms that may accompany a migraine.

Below are a few talking points to help your migraine-free friends understand what you are going through:

“Migraine is not just a headache, it is a neurological disease.” The Migraine Research Foundation estimates that over 10 percent of the population suffers from migraine, including children. They say that, “Every 10 seconds, someone in the United States goes to the emergency room with a headache or migraine. Migraine sufferers visit the emergency room because of the severity of the pain or the fear of unremitting pain, drug reactions or side effects from headache medications, severe nausea or vomiting, dehydration, and/or stroke-like neurological symptoms that might accompany the headache.”

“No, I can’t just take a pill and make it go away.” Some very few lucky migraine sufferers can use over-the-counter medicine successfully to treat their migraines, but most of us cannot. We use pills, injectable medication, and even inhalable medicines—all of which you try to take as soon as you feel the first twinges of a migraine, but sometimes there is just no medicine that can stop it once it has started (especially in the case of ones that sneak up on you in the middle of the night).

“When I have one, moving makes it worse. Talking makes it worse. Everything makes it worse. Leave me alone.” Some people still believe in the school of “walking it off” for some reason, and will freely suggest it to you as a solution for a migraine. When I have a migraine, I can’t do anything. I can’t stand up in the shower, or open my eyes, or even talk above a whisper sometimes. And I know if I get a full-blown migraine, all of these things could happen at once. Worst, I know if I don’t do everything possible to keep my symptoms in check, I could end up in the emergency room, because once the nausea and vomiting take hold, the headache gets worse, pills can’t be kept down, and the cycle can only be broken by IV fluids and injectable pain medication.

“I live in fear of a migraine attack.” If you have suffered for years with migraines (especially before the days of the more effective medications), it is not uncommon to live in a state of dread that you will get a migraine. Sometimes, you know the migraines you wake up with will be the worst. Other times, you just have a sense that a migraine is right around the corner since you know you are overtired or stressed. The reason I live in fear of a migraine is because I know how it disrupts everything in my life for days: sleep, work, recreation, and relationships. Everything is turned upside down, time is lost I can’t get back, all due to something I can’t control and can’t prevent.

“My migraine isn’t the same every time.” This is perhaps one of the most baffling things for you to both explain and experience if you have migraines. There simply is no formula for migraines. Attacks can last anywhere from a few hours to a few days (you never know), and can include any combination of the following:

• Throbbing head pain, usually localized to one side
• Nausea/vomiting
• Dizziness
• Sensitivity to light, sound, touch, smell
• Numbness in the extremities or face
• Visual disturbances (auras)
• Other random symptoms

“I don’t really know what causes them. And neither does science.” Some people are able, after an intense period of trial and error, to isolate the exact things that trigger their migraines. For some people it might be caffeine, for others it might be food from the nightshade family (potatoes, tomatoes). Others have to eliminate all bread and alcohol from their diet, and still others must forgo meat entirely. Other common migraine triggers can be lack of sleep, stress, dehydration, or just random things like flying in an airplane (changes in cabin pressure may be why). Researchers used to chalk migraines up to mental deficiency, then to faulty blood vessel width (too wide or too narrow), and now they think there might be a link between migraines and childhood stress and trauma. As studied as migraines are, experts still do not know why they occur, and they know even less about why migraine symptoms can vary so widely from person to person.

“Stop suggesting solutions you heard from other people. Just. Stop.” Now this is a harsh truth, but a necessary one: I don’t want to hear the home remedy your great-aunt used for headaches, or listen to details about that miracle cure you saw on TV. It is ignorant of you to assume that I have not already tried everything under the sun to get rid of my migraines, and it is especially insulting if I am in pain at that exact moment.

“Please know it is my pain that is selfish, not me.” A really horrible thing about being a migraineur is that your unpredictability and inability to do things will cause you to hurt people’s feelings unintentionally. Often. You will have to cancel plans at the last minute, you will have to leave in the middle of parties, you will probably insult important, beloved people to take care of yourself in hopes that your migraine doesn’t progress past the point of no return. Apologies and explanations never seem to go far enough. You can only hope that your intentions were received with the faith in which they were given.

“Just because you can’t see it doesn’t mean I don’t feel it.” The 100 million chronic pain sufferers and 14.8 million people with depression in the United States will agree with this wholeheartedly. Sometimes people with migraine wish they had some outward manifestation of their condition—a limp, a missing appendage, even a bandage—to prove to everyone else that yes, there is something wrong inside. The cruel irony is that, yes, it is “all in their heads.” The stigma that comes with that is very hard to shake, even when you know your migraine is real.

Migraines are real. If someone says, “I think I had a migraine once,” the truth is, he probably didn’t—you will know a migraine when you have one. It is hard to explain migraines to someone who doubts their existence, and it is frustrating to be made to feel like a malingerer. Do the best you can, and be honest with your friends, family, and coworkers if the topic should arise. Explain migraines as best you can from your experience, and them let go of trying to convince them.

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