Finding good headache care for adults is very difficult, since trained specialists are few and far between. Finding good headache care for children is even harder, as most headache clinics don’t see anyone under the age of 18. We, at this time, do see children as young as age six.
Headache disorders in general, are some of the most disabling conditions that people face. They account for more disability than all other neurological disorders combined. Of the top six reasons for disability, headache disorders are clearly the most under treated and misunderstood disorders.
Working with children and teens who have significant headache disorders is even more challenging than working with adults, and that is why most headache clinics elect not to see children. The reason it is more challenging treating children and teens isn’t due to the disorder itself being more complex or the treatments being more challenging, but because of the psycho-social complexities which are unique with that population group. When a bad headache disorder is intrusive into the life of a previously healthy child, they often lack the emotional maturity or the knowledge to get past the first phases of denial and frustration. It is hard to keep them from getting bogged down and discouraged, if not frankly depressed, and to move on to a healthier approach aimed at getting better.
Let’s Start with the Basics
Headache disorders are common. The most common form of disabling headaches, by far, are variations of migraine. Migraine is a disorder of the brain’s natural alarm system. It is no longer the Middle Ages where we are simply guessing about the causes. Our new understanding of migraine is the result of decades of research by intelligent people who care deeply about finding the real cause and the best treatments. The internal alarm system that we all have is supposed to only cause disabling pain, and the associated symptoms of misery that accompany headaches, when something is seriously wrong, like meningitis. However, in migraine disorders there is nothing seriously wrong that sets off the alarm. Instead, the alarm system itself is faulty. This is most often caused by genetic flaws. Scientists have discovered five genetic errors that cause migraine. There are also rarer forms of headache, such as New Daily Persistent Headache, that are not as well understood as migraine headaches.
In the adult population, around 18% of women experience migraine and 15% of men experience them. As many as 4% of the American population have headaches on most days. This makes headache disorder far more common than more disabling diseases like MS or other chronic illnesses.
Children mirror the adult headache population. However headaches in boys are even more common than in adult men. The cause of children’s headaches are basically the same as adults. The vast majority of children with headache symptoms have what is called a “primary headache”, where there are no other causes other than just a malfunctioning alarm system.
The Social Complexities
As parents ourselves, we understand the love and concern a parent has for a child who is suffering. Some of us at PRHC have had children who have suffered from chronic illnesses. The love and concern that a parent has for a sick child is admirable. However, when parents or the child become too anxious or frustrated, it often becomes counterproductive and those children have less of a chance of getting well as a result.
It is a common misconception that if a child is suffering from severe and/or frequent headaches, then there must be something seriously wrong and someone better find that simple root cause. However, there are only a handful of bad things that can cause severe headaches as a symptoms, beside migraine. These includes things like brain tumors, increased spinal fluid pressure and infections around the brain. The diagnosing process is usually more a simple process of ruling out these things. It all starts with a careful exam in the office.
I personally see about a thousand new patients a year, and out of those, one may have a serious cause such as a brain tumor. After thirty two years of headache work, I’ve never seen a patient with a brain tumor for whom I did not first find an abnormality in their initial neurological exam. However, it is possible that the handful of really bad causes could eventually be determined as the root cause even though the patient appeared to initially have a normal office exam. This is why a brain MRI is sometimes required as a diagnostic test. Rarely, a spinal tap is needed to rule out increased spinal fluid pressure or infection. Blood tests, allergy testing and the like are almost never helpful.
It is often difficult for parents to rest in the assurance of a normal exam. They continue being anxious thinking that something horrible is wrong and that it is being missed. They want to find a provider who is able to quickly identify a very simple cause for their child’s headache. And they want to see that when that cause is eliminated, the headaches are cured forever. People have seen too many TV shows or heard tales from friends where this scenario has happened. But unfortunately those stories are usually unreliable and just not a representation of reality.
Rather than focusing on treatments that can help migraine sufferers to get well, these well-meaning parents start a long and fruitless search for the simplistic “cause.” Not only is this search a distraction, it often starts to sow distrust between the parent and the provider who has the best chance of helping them. Of course we here at PRHC are devoted to treating the real cause and not just treating the symptoms. But our success in being able to do that begins with understanding that the real cause, as described above, is complex. It requires patience and trust to go through a process of trials, which will eventually lead to finding the most effective solution for each unique patient.
Continued . . .
J. Michael Jones, MPAS-C