Many prominent figures in the world of migraine insist that “migraine is a disease”. One book author actually claims to know how to live well with migraine disease. Even the Director of the Headache Clinic at Stanford—a neurologist and migraine patient himself—speaks of migraine as a genetic disease. This raises the question:
What is it, that makes migraine a disease?
The educated solution to such a question is to get advice from a reputable English dictionary. The usual suspects—Collins, Merriam-Webster, Oxford dictionary—explain that disease is “any departure from health“—just like ailment, illness, sickness or malady. So, why then do these aforementioned migraine advocates not say that “migraine is a malady”? The alliteration makes it sound so much nicer, doesn’t it?
We know that migraine patients—on average, in general, as a group, blablabla—struggle with
- the shame of not being believed
- the hurt of not being recognized as truly suffering
- the fear of being seen as a malingerer
- the guilt of seemingly exaggerating a mere headache.
All these feelings are perfectly understandable in a world that is madly accelerating, increasingly superficial, often impersonal and annoying; a world, in which critical remarks, cool attitudes and dismissive responses are fashionable; a disappointing world for those who are longing for understanding, kindness and compassion, isn’t it?
And so it appears to be an act of resistance when migraineurs assert that their condition is a “real disease” and not “made up”. Almost legendary is the statement “migraine is physiological, not psychological” as if these were mutually exclusive categories. Fact is that every thought and every emotion is the result of neurons (nerve cells) in the brain sending messages to one another.
There is no psychological process without its physiological counterpart. The same is true the other way round, but we’re not always aware that our subconscious mind influences the physiology of our body.
Obviously—in some minds—physiological stands for true, serious or just. In contrast, psychological apparently expresses something like
- “lonely, unloved souls who pretend to be in pain in order to get at least some attention” or
- “notorious malingerers aiming for disability benefits”
- or even “delusional fruitloops who think they were in pain, but in reality they’re not”.
In short, psychological means fake or crazy to them and a discussion of the psychological factors of migraine is off limits.
My educated readers will quickly recognize that those odd, occasionally petulant phrases result from serious errors in categorization and generalization. Unfortunately, severe migraine goes hand in hand with dysfunctions in the prefrontal cortex and so cognitive distortions and fallacies are typical for migraine brains. Sorry.
Why migraine is not a disease?
People usually don’t say
- Attention Deficit Disease
- Mood Diseases, Anxiety Diseases
- Major Depressive Disease
- Bipolar Disease, Panic Disease
- Post Traumatic Stress Disease (PTSD)
Instead, the commonly accepted terminology is
- Attention Deficit Disorder
- Mood Disorders, Anxiety Disorders
- Major Depressive Disorder
- Bipolar Disorder, Panic Disorder
- Post Traumatic Stress Disorder (PTSD)
The term disease is typically used for ailments caused by an infection. In contrast disorders are usually health conditions that are not caused by an infection. This is not an official rule and there may be exceptions here and there (cancer, degenerative diseases), but most people would pretty much agree. One more example: Sleeping disease is a parasitic infection transmitted by a Tsetse fly, whereas sleep disorders are not caused by an infection: Sleep Apnea, Insomnia or Restless Leg Syndrome don’t get transmitted from person to person.
Migraine too is not an infectious disease but a neurodevelopmental brain disorder, an imbalance between inhibitory control (prefrontal cortex) and neuronal excitability. In this regard migraine is similar to ADD/ADHD or PTSD, both of which are also frequent comorbidities of migraine. Actually, all the listed disorders above are comorbidities of migraine. Isn’t that interesting?
How the treatment of diseases is different from therapies for disorders
The treatment of infectious diseases is the responsibility of physicians, period. Patients have no say, because the doctor’s first priority is to stop the infection from spreading. Unsurprisingly, there is
- no Acupuncture for Measles
- no Chiropractic for Tuberculosis and
- no Psychotherapy for Malaria.
- Also, no self-help books offer advice as to how to “live well with Creutzfeld-Jakob Disease“.
In contrast, the therapy of disorders is the responsibility of the affected patients. They can freely choose between a wide variety of therapies. In the case of migraine disorder, physicians make sure that the crippling head pain isn’t caused by some wicked tumor. They also write prescriptions for attack drugs to help with some of the symptoms. Beyond that, it lies in the hands of the migraineur to make the best of it, because medicine can’t “cure” disorders, only diseases.
Disorders need more than medical treatments (like surgery or medication). Therefore it is more appropriate to talk about therapy and rehabilitation. The word treatment suggests that the patient is the passive object of the procedure. That is appropriate for diseases where the medical treatment is supposed to kill the offending bug.
The fundamental mistake—for which many patients pay too high a price—is to “treat” disorders, as if they were infections, or at least similar to diseases. In migraine land, many patients and doctors behave as if migraine triggers were the offenders, essentially taking the position of bacteria or viruses. So the headache diary and trigger avoidance become the equivalents to hygiene and disinfection in the fight against Cholera.
Whilst there is a medical cure for Cholera, there is none for migraine. As a disorder, migraine needs therapy and rehabilitation. In a catchy phrase: Drugs don’t end the tyranny!
What should be done for migraine disorder?
Disorders affect body, mind and brain. Many of them are comorbid to one another, which means that having one makes it more likely to get another one. Migraine sufferers frequently have digestive problems (e.g. Irritable Bowel Syndrome) or Mood Disorders (e.g. Anxiety and Depression).
Disorders are typically caused by a multitude of factors (Not every soldier comes home with Post Traumatic Stress Disorder, but amongst those who develop PTSD, many also start having migraine attacks. Isn’t that interesting?). Therefore it might be a smart idea to address all the underlying glitches in body, mind and brain in a spirit of targeted rehabilitation.
In such a truly integrative approach, “Body” represents biochemical requirements, for example deficits in vitamins, minerals and trace elements or imbalances in natural hormones. “Mind” stands for the need to address bad thinking habits, learned helplessness, passive-avoidant coping strategies, maladaptive schemas and emotional traumas. “Brain” obviously expresses the necessity to improve the stability and the function of the central nervous system, which is best accomplished with Neurotherapy.
Official European treatment guidelines for migraine (set forth by mainstream neurologists!) at least urge patients and doctors to apply Behavioral Therapies, possibly, but not necessarily, complemented by medication. Inpatient rehabilitation programs are typically multi-disciplinary, which means that a team of doctors, psychologists, exercise physiologists and other professionals collaborate collegially and the patient profits.
In contrast, American doctors
- neglect to motivate migraineurs for Exercise Therapy
- are rather dismissive of Behavioral Therapies and
- completely ignore Neurotherapy, clearly the strongest instrument in the toolbox.
American treatment guidelines recommend drugs only. The question is: Who is the one who profits? Certainly not the patient.
The hope must be that some of the opinion leaders in migraine land come to their senses, get a grip on their peeved feelings, start to question their own illogical preconceptions and unhelpful beliefs and guide their followers into a new and more reasonable direction. In other words, it’s their responsibility to start a Migraine Revolution.
Why migraine should NOT be called “a disease“?
The majority of migraineurs already fear that they will have to live the rest of their life with migraine. What they don’t need is a disempowering concept of migraine as
- a genetically pre-determined, incurable disease,
- which can only be treated by physicians,
- preferrably by “headache” doctors
- who are also migraineurs themselves.
Yet, that is (in condensed form) what patients with Episodic Migraine currently hear from the greatest experts in the field: Patients with a long history of Chronic Migraine and an abundance of comorbid conditions. With all due respect, with a lot of sympathy and under the assumption of best intentions: Chronic migraineurs should recognize that their own attempts to overcome their migraine problems have failed, for whatever reason.
And whilst their vast experience and knowledge, as well as their care for others is highly appreciated, the danger is that chronic migraineurs (unintentionally) “infect” others with “migraine disease” by “transmitting” inaccurate information and unhelpful beliefs. If you still believe that “migraine is a disease“, then you should consider going into “quarantine” in order to prevent a “migraine epidemic“—unless, of course, you live well off other people’s “migraine disease”.
Perhaps, now is
- the time to say “Enough with this nonsense!”,
- the time to start discussing solutions,
- the time for a change,
- the time for The Migraine Revolution.
What do you think?
- Is it time for a more reasonable approach to the rehabilitation of migraine disorder? Or do you think that migraineurs should content themselves with drugs?
- Do you think migraine bloggers should be aware of their responsibility? Or is it sufficient if they tell others how much they are suffering?
- Is it your opinion that chronic migraineurs in leading positions should be more responsible? Or is it okay when they (accidentally) guide their followers towards chronification? Leave your well considered comment below!
If you find this article thought-provoking, controversial or simply interesting, then share it with others!
If you liked this article and want to learn more, have a look at our Scientific Patient Guide for migraine patients!
And consider joining The Migraine Revolution!