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I Call It Migraine

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So what do you call that weird disease where people get these attacks that can be so debilitating and…

Recently I had a discussion with someone about the terminology I use when it comes to migraine.  I thought today might be a great day to explain why I use the terminology I use, because there is a reason!

First, let me say that there is a wide variety of terminology, even among migraine specialists, doctors, researchers and advocates.  I’m not going to claim that I’m right and they’re wrong.  And I think that we need room for a little grace when it comes to terminology, especially because the world is changing so fast and so many people are involved in the fight against migraine.  So this is not a rant against you who haven’t said things exactly "right".

(Want to see a rant?  This was a rant.)

Terminology: Migraine

Migraine Terminology

First of all, there’s a disease known as migraine.  Usually when I talk about someone having migraine, I’m referring to someone who regularly has those attacks that we all know and love.

Some advocates capitalize the word Migraine (like that), to emphasize the fact that it is a disease.  I, on the other hand, usually don’t.  The normal system is to capitalize when the disease is named after someone (Hodgkin’s disease) and not to capitalize when it’s not (cancer).  Because migraine is a disease, I choose to follow the same rules as any disease.

So if you hear me talking about someone who has migraine, I don’t mean that they’re feeling sick at the moment.  I just mean they’re one of those people that are prone to have migraine attacks.

So the second term would be migraine attack.  Since I usually use the word migraine for the disease, I prefer to use the term migraine attacks for those times when migraine manifests itself as a headache or aura or whatever.

This may sound odd to some people – the common thing to say would be "I have a migraine".  But I like differentiating between the disease and a specific attack, and I think this is usually a good way to do it.  But let’s be kind – if you want to use migraine as a short form for migraine attack, I would hope no one would get too upset.

For the same reason, I won’t often use the word migraines (plural).

Well, what about migraine headache?  I do occasionally use this term (see here, for example).  Migraine headache is a symptom of migraine.  You could also say migraine nausea, migraine aura, etc.

It’s a valid term, but the problem is that people misuse it.  Some people think that migraine attacks are just headaches, or that migraine attacks always involve headaches.  That’s just not the case.

I had a weather related migraine attack recently, and my whole body just shut down.  It was not just a headache.

I’ve also had migraine attacks with no headache at all.

So my advice is – use the term migraine headache with extreme caution.

People who have migraine or migraine disease or chronic migraine can be called migraineurs.  That’s just a short way to describe people who regularly get migraine attacks.

Who cares?!

Words do make a difference.  Migraine is, after all, not just a headache.  There really are people who have biological and genetic differences in their bodies, who are prone to migraine attacks.  It’s not just something everyone gets if they’re not coping well.  There is a disease that is known as migraine that as of yet does not have a cure.

So I think it is important to differentiate between an attack and the disease, and to emphasize that we’re not just talking about headaches.

Caught you!

What?  You caught me breaking my own rules?  Oh my.

Yes, I do sometimes break my own rules for various reasons.  Sometimes it’s just to draw people in who are used to different terminology.  And my use of terms has evolved over time.

But I do hope that I’m speaking and writing clearly in a way that promotes better understanding of what migraine is.

In conclusion

So someone who has migraine (the disease) is known as a migraineur.  One of their symptoms may be migraine headaches, or it may not be.  Migraine is the name of the condition that we’re here to fight, along with cluster and various types of headaches.

Again, there is a wide variety in the use of terminology out there, but I do find that those closer to the issue (ie neurologists, migraine specialists) do tend to be closer to what I write here.

Finally, the point is not to be harsh with people who use different terms, but to find clear ways to talk about migraine that help people understand what it is.  I hope this gives you some food for thought!

Get Rid Of Cluster Migraine Once And For All.

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I mean it.  I’m tired of cluster migraine.  I’ve had enough.  It needs to go.

I know, some people think they have a use for it.  They don’t think there’s any easy alternative.

But frankly, I think it’s causing more problems than it’s solving.  It’s had its day, and it’s time for it to be ditched, deleted, and drowned.

Some of you already know where I’m going with this.  I’m not talking about head pain here.  I’m not talking about diseases or symptoms.  I’m talking about words and phrases.

Yes, the term "cluster migraine" has to go.

Execute Cluster Migraine

What does it mean, anyway?

Well, that’s the question.  Recently I was reading some articles and came across an absolutely horrendous one entitled A Cluster Migraine – Not the One You Like to Meet With (to read the painful article, click here).  The author starts by describing symptoms – symptoms of cluster, not migraine.  Next, they described more symptoms – not of cluster, but of migraine.  The "treatments" had nothing to do with cluster at all (ie retire to a quiet room, dim the lights and get some rest!  I’d like to see someone with cluster headache enjoy that peaceful scene, but I doubt it’s going to happen…).

Unfortunately, this absolute confusion between cluster and various types of migraine is all too common.  Usually people are talking about one or the other, but with this phrase cluster migriane (or worse cluster migrane) flying around, you never know what people are talking about.

“But… I’m using it properly!”

Ok, there are some (debatable) ways to use the term that aren’t quite as confusing.  First, the term is used for patients with cluster and migraine.  But is that really useful?  Can’t you just say they have both?  After all, you don’t hear about people who have a "migraine ear infection" or "worms n’ cluster" (almost sounds like a desert at a children’s party…).

Now, I understand that sometimes – sometimes – the distinction isn’t so clear.  You have someone with attacks that come in a series like cluster, but the symptoms look more like migraine.  That’s the only useful spot I can think of where you could put the term cluster migraine.

However, with all the confusion, I think the term is not even useful here.

Seriously, I did a search recently for pages using this term.  Out of the top 10 pages I visited, only one use the term in a "proper" way.  All the rest showed confusion over the term.

So I say it’s time to throw it out completely.  Stop using it.  Clarify.

It will help people find treatment faster, instead of spending all this time in a maze trying to figure out what they have and what it’s called.

It’s time for the execution.  It’s time to get rid of cluster migraine.  Once and for all.

(For more ranting, see this Treatment Cluster Migraine article)

What’s the difference between cluster and migraine anyway? Find out here…

Surgeries for Trigeminal Neuralgia

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Trigeminal Neuralgia attacks may not last long, but they tend to keep coming back – and they’re incredibly painful!  The pain in the face usually doesn’t last longer than a couple of minutes, but there can be several attacks in succession, totally incapacitating the patient.  Check out this issue of HeadWay for more on the symptoms of Trigeminal Neuralgia.

Surgery for Trigeminal Neuralgia

For patients who don’t respond to medications, surgery is an option.  A recent study from the Netherlands (Erasmus University Medical Center, Rotterdam) showed about 1% of patients trying surgery every year, often with good results.

Three types of surgery were studied:  percutaneous radiofrequency thermocoagulation (PRT), partial sensory rhizotomy (PSR), and microvascular decompression (MVD).

So what worked best for the 672 patients in the study?

Well, the most effective overall was microvascular decompression (MVD).  Risk of having to repeat the procedure was low.  But it’s not that simple.  MVD is also the only surgery that requires and opening of the skull.  PSR and MVD are both performed by neurosurgeons, though the risk of complications was lower with MVD than with PSR.

Percutaneous radiofrequency thermocoagulation (PRT), however, was the most popular – probably because it is the least invasive.  More patients with PRT had to have repeat procedures – but many patients feel it’s worth the risk because it’s a less invasive procedure, usually performed by an anesthesiologist.

In the end, patients may opt to try PRT first.  If PRT continues to fail, MVD may be the next thing to try, because of its higher rate of success.

Remember that different surgeries may be better for you depending on your medical history and on what type of trigeminal neuralgia you have.

Of course, this is after medications have been tried.  Sadly, a previous study of Dutch patients suggested that about 1/3 are not getting recommended treatments, but treatments that seem to be more likely to fail (such as the use of paracetamol/acetaminophen or NSAIDs, which are generally not recommended for facial pain.

You can find the abstract for this 2011 published study here: A nationwide study of three invasive treatments for trigeminal neuralgia.

Is Migraine a “Symptom” of Fibromyalgia?

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I was recently doing some reading on fibromyalgia, and noticed something interesting.  Once in a while migraine is listed as a symptom of fibromyalgia.

Fibromyalgia and Migraine

For example, the National Fibromyalgia Association (USA) (a website which I respect, by the way) says:  Additional symptoms [of fibromyalgia] may include: … headaches and migraines …

Now, to be fair, this statement is under the heading of "Other symptoms/overlapping conditions".  Still, they revert to using just the term symptoms when they actually describe the relationship between migraine (attacks) and fibromyalgia.

Another site writes:  Headaches are an extremely common symptom of fibromyalgia. In fact, more than 50% of people with fibromyalgia suffer from constant headaches or migraines.

However, this site goes on to explain that there may be a common cause or dysfunction for both migraine and fibromyalgia.  Unfortunately, the information on migraine on this site is very out of date.

Two things having a common cause – one thing being a symptom of the other – those are two very different scenarios.  But does it really matter?  After all, if two things have a common cause, isn’t it likely that treating one may treat the other as well, even if one isn’t technically a symptom of the other?

Yes, it’s true that treating one may help with the other.  But I’m afraid simply calling migraine a "symptom" of fibromyalgia may oversimplify the matter.

Here’s what we do know:

  • People with fibromyalgia are much more likely to suffer from migraine attacks.  (Some say "migraine-like" headaches, but I’m not sure that’s a useful distinction)
  • There are many treatments that are common to both
  • There are common co-morbid conditions (conditions that tend to go along with migraine or fibromyalgia), such as irritable bowel syndrome and allodynia
  • Researchers have noticed similar dysfunctions in migraine and fibromyalgia patients (for example, in the serotonergic (serotonin) and adrenergic systems.
  • Not everyone with migraine has fibromyalgia, and not everyone with fibromyalgia has migraine

Although we know there are many commonalities between migraine and fibromyalgia, we don’t know the cause of either, and we don’t know for sure why many people tend to have both.  Could it be that they both are manifestations of the same disease?  Or could it be that there are mechanisms in one that tend to trigger the symptoms of the other?  Though we’ve learned a lot about both in the past few years, we still can’t answer these questions with certainty.

Because of this uncertainty, I think it’s better to call migraine a co-morbid condition, or an overlapping condition.  Treating fibromyalgia alone may or may not take care of your migraine attacks.  We need to be honest about this.  (I’m not suggesting the sites above are intentionally dishonest – I’m just saying that terminology is important in this case.)

That being said, here’s what we should continue doing in relation to the migraine fibromyalgia connection:

  • Continue to research the connection, the related mechanisms of the two.
  • Don’t just treat one or the other – investigate treatments for both.
  • Consider treatments that may be able to treat both.  Be sure your doctor is aware that you’re dealing with both conditions (if you are).
  • Although we still don’t understand the connection, recognize that one could actually lead to the other.  If this is the case, it’s another reason not to put off proper treatment of either migraine or fibromyalgia.

To learn more about fibromyalgia, visit the National Fibromyalgia Association website.

What do you think?  Is this an important distinction?  Does it matter if migraine is a symptom or a co-morbid condition?

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