What Some Headache Sufferers Don’t Get Better – Psychosocial Barriers

I usually come here to write about new research into headache prevention and treatment. I will continue to do that after I finish this series.  Despite how disappointed we all are in the snail’s pace of bringing new and better treatments to patients, the far more common barrier to good treatment isn’t the lack of good treatments but artificial barriers to the good treatments that are available now.  I want to write a series about these barriers and how we can make things better now.

The Barrier of Anger

This may sound like a strange “barrier” but it is one of the most common reasons that patients don’t get better and I suspect it is the number one reason that kids with bad headaches don’t get better.  The anger I am speaking of isn’t what you are thinking. It is not that someone’s personal anger is making their headaches worse on a psychological level.

At Pacific Rim Headache Center, I think we do our best work with the most complex headache sufferer.  These are patients who have traveled the country and have “seen everyone” and “tried everything” and yet are not better. The reason is, headache specialists usually have far more tools and experience than neurologists, pain clinics or others in headache treatment. When a patient has tried many things from these other providers, and those things have failed, they eventually develop realistic ideas about their headaches. They know that there is not a secret trick or magic herb that will cure them.  They are willing to roll up their sleeves and work, trust our years of experience and guidance and eventually get better.  We have never met a complex and difficult (physiologically) headache patient that we did not like.  We have never told a patient that we are giving up and there is nothing else to try. We have told angry patients or distrustful patients to find someone else to see.

The most difficult patient to work with are those who either never had headaches until recently, or their headaches suddenly became much worse.  This is especially true when it is a child.  Often these patients (or in case of the child, the parents) have very unrealistic expectations.  The tendency is not to respect migraine for what a horrible disease it really is, but start thinking that they must have something else wrong with them (vitamin deficiencies, toxins, neck aliment issues, allergies, needing glasses, brain tumors that were missed by scans and etc.). They come to clinics like our thinking that we will do some magic test and presto the “cause will be found” and they will be instantly cured. When the script of reality doesn’t follow their wrong expectations, they can get very angry quickly.

It is perfectly understandable for people to be frustrated at their headaches. It is a terrible intrusion into their personal lives and it is not fair.  Anger at their disease is honorable. The problem becomes when they turn that anger and direct it towards the very people who care about them and can eventually help them.  There is no one on the this planet who cares more than we do about our patients and wanting them to get well.

The other reality of bad headache disorders is they are not treatable via cookbook medicine. Each person is an individual and there is never two successful programs for treating headaches that are identical. To find that effective treatment, at least at this time in history, it requires trial and error.  A headache specialist will have endless options of trials and in the vast majority of times at least one of them will be effective.  However, it can take weeks and sometimes months to reach that effective treatment. Only a small group of patients are truely resistent to all treatments, yet for them there is hope of new things coming.

I cannot count how many helpable patients I’ve witness quit early in the process out of anger and frustration. Often they give up and are put on narcotics by someone who is not a headache specilist. The narcotics are a quick fix for their pain but do nothing about modifying the disease . . . except to make it worse over time.

J. Michael Jones, MPAS-C