Ignorance, misinformation, and stigma

doctorDear Migraineurs,

Don’t you just hate it when someone who has obviously never had a migraine says, “Oh, I get those too”?

It really gets on your nerves, doesn’t it? You wish they would get a nasty one just once so they would shut up and stop offering you Tylenol.

I get it. I get annoyed, too. But my annoyance isn’t with healthy people. It’s with migraineurs who think they have the corner on headache disorders, as if no other type of headache disorder could possibly be worse than theirs. I also get annoyed with migraineurs who, despite all the available information, continue to insist on clinging to a diagnosis that doesn’t even exist and then try to claim understanding with other people who are diagnosed with headache disorders other than migraine.


There are over 200 different headache disorder diagnoses and
only a fraction of them are Migraine or Migraine sub-types.

If your doctor isn’t using the International Classification of Headache Disorders (ICHD-3) as his or her framework for diagnosing headache disorders, then fire that doctor and run as a fast as you can to the nearest headache specialist. And please, don’t share your diagnosis until you have an accurate one.

How do you know if your doctor is using ICHD-3? Well, it’s easier to spot the ones that don’t. They will give you a diagnosis like: complicated migraine, complex migraine, cluster migraine, vestibular migraine, ocular migraine, etc. None of these are a true diagnosis. If you don’t get an accurate diagnosis, then you might not be getting the right treatment.

In late 1999 I started experiencing what I thought were extremely severe migraines. After all, a migraine is “just a bad headache”, or so I thought. I won’t bore you with the details here. For six months I battled these terrible attacks, often from an ER room. Everyone thought these attacks were simply an unexplained worsening of my previously diagnosed Migraine disorder. If anyone had asked, I would have called them “migraines”. I had no other vocabulary with which to explain what was happening. “Migraine” was the ugliest headache word I knew. Somehow it wasn’t a good enough descriptor of my experience. That’s because the problem wasn’t Migraine at all. It was another, totally unrelated headache disorder. It was Cluster Headache.

Until I experienced my first Cluster attack, I believed the worse thing that could happen during a headache was uncontrollable vomiting. After all, that was the worst I had experienced. Now I know better and I bet you do, too. Even if you’ve never experienced a cluster attack, you have much better access to information about all the symptoms of Migraine than I did in 1999.

You wouldn’t trust a mechanic who didn’t know the difference between a Ford and a Chevy or called the engine a radiator. So why would you trust a doctor to treat your headache disorder if he doesn’t know the right name for the right disorder? Have enough respect for yourself to hold your doctor to a higher standard. Don’t embrace some outdated, misinformed, made up diagnosis. And please friends, don’t make the mistake of stigmatizing other headache disorder patients by lumping them all into a “migraine” category. Each patient is unique. Each headache disorder is unique. They all suck. If you want people to understand and care about your experience, then take the time to learn about others. We are fond of insisting that people “walk a mile in our shoes”. Are you willing to do the same for others?

Here’s a side-by-side comparison of the difference between just these two headache disorders:

• mild, moderate, or severe pain
• one-sided, side-locked pain
• throbbing, pounding pain quality
• sensitivity to light & sound
• nausea & vomiting
• movement makes it worse
• cognitive & speech impairment
• lasts 4-72 hours
• occurs as result of triggers
• “chronic” means…
» 15 or more headache days a month
» 8 of these must be migraine
» migraine attacks must last 4 or more hours
• severe, excruciating pain
• one eye & eyebrow affected
• eye, eyebrow, facial drooping
• involuntary tears from affected eye
• one-sided nasal congestion or rhinorrhea
• stabbing, sharp, boring pain quality
• usually no light or sound sensitivity
• nausea & vomiting are rare
• movement makes it better
• unable to sit still, rocking, pacing
• pounding on head, pulling hair makes it better
• thinking and  speech are clear
• high-flow oxygen helps
• lasts 15 minutes to 3 hours
• occurs at specific times, days, seasons
• triggers only “in cycle”
• patients may go months or years between cycle
• “chronic” means…
» less than 1 month between cyclesSource: International Headache Society

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