No Two People With Migraine Are the Same
I did not believe I had migraine for several years after I was diagnosed in 2002. Although the specialist I saw was highly respected, I didn’t trust the diagnosis. I knew what migraine looked like because my husband has it. My symptoms were nothing like his.
Here’s what I believed about migraine in 2002:
- It causes a visual aura, where people get spots and squiggly lines in their vision
- The pain is severe
- Pain is on only one side of the head
- Vomiting is a primary symptom
- Sensitivity to light and sound during a migraine attack are intense
- An attack confines a person to bed for most of a day
- All you can do during an attack is sleep and lie in the dark
- Moving makes the pain unbearable
- Attacks come an average of once a month, often when stress has been released
- Caffeine always increases migraine attack frequency; too much chocolate or cheese could also be a problem
- Prescription medication makes you feel less terrible, but doesn’t do a whole lot; OTC meds are useless
- Preventive medications can make the attacks less frequent
My symptoms have changed significantly since then, but at the time:
- I had constant pain throughout my whole head
- The pain would spike and wake me every night four hours after I fell asleep
- When the pain was bad during waking hours, I felt best when I was lying down, but could often function at partial capacity
- Fatigue, not pain, was usually the reason I’d miss work—I’d become so exhausted while showering that I felt like I couldn’t move
- I didn’t have to be in a dark room
- I was able to read
- Caffeine seemed to relieve the pain somewhat
- OTC meds, particularly ibuprofen, could usually bring the pain down a couple notches
These lists don’t look like they could describe the same illness.
Only with a lot of reading and researching did I discover that migraine symptoms span a wide range. A handful of symptoms are known to be so common that they are used for diagnosis, but even then a person only has to have a portion of those symptoms.
My husband and I have two different migraine diagnoses, migraine with aura and migraine without aura. It’s possible to have migraine without pain and an aura without headache. Other types of migraine include hemiplegic migraine, basilar migraine (now known as migraine with brainstem aura), retinal migraine, abdominal migraine, cyclical vomiting syndrome, and benign paroxysmal vertigo. All these classifications contain variations within them. For example, it’s possible to have migraine with aura that diverges from what my husband experiences. And not everyone who has migraine without aura has the same symptoms as I do.
That’s just diagnosis. Symptoms run the gamut including many that people find hard to believe are migraine symptoms. Response to treatment is also varied. It’s common for a treatment that only helps 10% of people to be considered effective.
If you were to find two people with the exact same diagnosis, symptoms, and response to treatment, they would not experience migraine the same way. Support systems, access to health care providers, insurance, financial resources, coping strategies, and resilience all factor into how migraine affects individual people and their lives.
Even with the same basic diagnosis, we all look so different. OTC meds provide relief to some but are useless to others. Some can function at least partially during an attack while others are confined to bed. Some have screaming pain while others have moderate pain. Some can read or be on the computer during an attack and others have to avoid all light. Some have food triggers, some don’t. And so on.
Clinicians and researchers have begun to embrace the idea that “migraine” is a gigantic umbrella term. It encompasses many divergent manifestations of related, but distinct illnesses. Migraine isn’t a chain restaurant, it’s more like a series of sister restaurants—all owned by the same people, but with different menus and décor.
Knowing these differences can give us more empathy for those whose migraine attacks don’t look like ours. They can also give us more compassion for ourselves. I always knew my husband’s migraine attacks were serious and temporarily disabling. Yet I would beat myself up every time I missed work because of a “bad headache.”
Both my symptoms and my husband’s have changed over the years. His attack severity has decreased even without medication. I have been disabled by severe chronic migraine. Various treatments have made my attacks less painful, but it has not lessened their frequency. I currently have at least two attacks a day.
I can’t believe I once thought my husband had “real” migraine and I was just a wimp who couldn’t handle a headache.
Have you taken our Migraine In America Survey yet?