10 Things Migraine Sufferers Need You to Know

Migraines steal life.

I’ve conservatively estimated that at two migraines per month for 32 years, I’ve had 768 attacks (again this is conservative as there are the mild ones I manage to work through and not count as a full-blown attack).

Each one of these migraines represents a day I’ve had to stop living my life, plans canceled, days spent in bed, or a year’s flexible spending account wiped out with one trip to the emergency room. That’s two and a half years of my life.

I fully realize there is a myriad of illnesses and diseases that attack lives and steal from us. My intent is to not minimize the pain others experience or elevate one illness over another. I hope to shed some light on a debilitating disease that has no visible symptoms.

Here are some facts about migraine that will convince you that someone you know needs you to understand and show grace.

• Nearly 1 in 4 U.S. households includes someone with migraine.
• Migraine is the 3rd most prevalent illness in the world.
• Migraine is the 6th most disabling illness in the world.
• While most sufferers experience attacks once or twice a month, more than 4 million people have a chronic daily migraine, with at least 15 migraine days per month.
• More than 90% of sufferers are unable to work or function normally during their migraine.
• Migraine is a neurological disease with extremely incapacitating neurological symptoms.
• The vast majority of migraine sufferers do not seek medical care for their pain.

Source: Migraine Research Foundation

This is the story of migraine and here are 10 things migraine sufferers wish you knew.

1. It’s Not a Headache. Honestly, calling a migraine a headache is like me chopping off your hand and asking, “How’s that little cut doing?” A migraine is a complex set of symptoms mostly characterized by pain on one side of the head, neck, and face. But it’s so much more than a simple headache and involves blood vessels in the brain. The pain is debilitating and even a mild migraine can involve nausea, anxiety, irritability, loss of concentration, and an inability to think or speak coherently. When a migraine attack hits, it’s like a full-body assault, not just a headache. Chills, shaking, and extreme sensitivity to light and sound are also common symptoms. Carrying on with a normal day in a normal environment becomes torture during a migraine episode.
2. Migraines range from mild (I’m still working and talking to you but my head is pounding and I can’t think straight) to severe (I can’t stand or talk or walk). Please understand that we do our best when we are hit with one but even if we don’t call in sick or go to the hospital, we are still suffering.
3. The migraine hangover is a thing. After an attack — which can range from several hours to several days — the victim may need time to recover. A migraine can take everything out of you. Even when the pain and nausea subside, your friend will be exhausted, need sleep, a warm meal, and probably not feel 100% for a couple of days. You can easily see how someone who has chronic migraines is never fully at their best.
4. Smelling some lavender essential oil, a cool cloth, and a few ibuprofen really won’t help a full-blown migraine. Those are great remedies for a bad tension headache but a migraine is triggered by changes in the blood vessels and the only thing that will stop a raging migraine is prescription medication or treatment by a doctor. Sometimes, if caught early on, the migraine can be stopped or mitigated by these strategies, but once full-blown, please don’t get exasperated when your friend may be out of commission for days or scoff at your home remedy.
5. Many, many things can trigger a migraine and the combination of triggers is different for everyone. Changes in the weather, hormones, smells, sensitivity to foods, lack of sleep, exercise, or stress are all common triggers. Don’t roll your eyes or make fun of the co-worker who has a strict diet. She’s not trying to be hard to get along with, she’s simply trying to avoid a migraine at all costs.
6. Over the counter — and even prescription — pain-relieving medicines won’t stop or relieve a migraine. It might take the edge off so you can sleep or get to the emergency room, but the root of the problem has to be addressed. Blood vessels open and nerve endings are ravaged with pain from too much blood flow and hyper inflammation and until those things are dealt with the migraine can continue for days.
7. She’s likely tried everything (I say she because the majority of migraine sufferers are women) but if you have a suggestion, be loving about it. I’ve tried all of the following, in no particular order; niacin, blood pressure meds, exercise, physical therapy, chiropractic, massage therapy, caffeine, no caffeine, dietary changes, stretching, magnesium, butterbur, lavender, feverfew, peppermint, Vitamin B complex, detox diets, neurologists, acupuncture, and a low histamine diet. To date, the only things that have lessened the attacks, in frequency and severity, are the last two.
8. She’s not exaggerating the pain. My husband didn't fully appreciate what a migraine was until he began to get them periodically. While I wouldn’t wish one on my worst enemy (if I actually had the worst enemy), I am comforted that he now understands and takes really good care of me when I have one.
9. They are often unpredictable. During my 30’s and 40’s, I could predict at least one migraine per month. It didn’t make them easier but I knew to expect one and to schedule my life around it if I could. The only advice the medical professionals give migraine sufferers is, avoid the triggers. Because triggers change, and we can’t live our lives in a bubble (I try though — trust me!), we can’t always avoid the triggers. Triggers are also based on a tipping point. I may be able to do certain things or eat certain foods one day, but if a few triggers add up and a perfect storm brews, my body tips, and migraine results. Please show us grace and understand when we say no to something; it is not because we’re rude or selfish, it’s because we know our body is at the tipping point.
10. It’s humbling to have to justify how bad we feel. Migraine has no visible symptoms — unless I’m vomiting my guts out — so to have to plead for a break or to go home early from work when it doesn’t “look like she’s sick” is embarrassing. Please don’t make me feel worse by questioning my integrity or asking me to “work through it” when you show compassion for my co-worker who has a runny nose.

You’ve likely seen that commercial for migraine medication where the mom is lying on the couch in the backyard while the birthday party is taking place around her. That’s the perfect imagery of life with migraine. Life comes to a screeching halt with each migraine.

I have a great life, and I realize there are many people who suffer from chronic pain and debilitating illnesses on a daily basis. I’m just putting this out there to help those who have never experienced a migraine (you lucky sons-of-bitches you!) understand your friends and loved ones. Thank you for being there for us!

And if you are a migraine sufferer, pass this on to a friend or loved one. I’ve got your back!