Why Some Headache Sufferers Don’t Get Better

This is a rough draft of a new handout that I’m working on. I hope to edit it more and even shorten it a bit. But I think this is very important information for patients to have so I’m publishing it here even in its “beta” form.

Introduction: While just about any headache disorder can just go away over time, the disease itself is not considered curable, meaning there is no one technique of treatment that makes all the headaches go away forever.  However, it is usually a very treatable and controllable disorder.  The goal of treatment is that the frequency of the headaches is better by 80% and when headaches do come, they are stoppable within a couple of hours.  While close to 80% of patients can reach this goal, the other 20% remain, what we call “refractory” or resistant to treatment.  I wanted to describe the top five reasons some people don’t get better.

1. Bad Disease.  Most migraine type headaches are based on a genetic predisposition, although environmental experiences, such as trauma, can worsen them.  Some sufferers do everything exactly right to treat their headaches and are wonderful patients but still they don’t respond. It isn’t anyone’s fault, although I feel apologetic that I can’t help them get better.  Someday treatments will improve and even these patients will find success.  There is never a place for hopelessness because headache disorders, unlike many other chronic illnesses, can resolve spontaneously and there are always new things to try.  At PRHC, we never give up hope and are always looking to research for  new and better treatments .

2. Overusing Rebounding Medications. We have known since the late 70s that some medications, when used too often, will make headaches gradually worsen and non-responsive to all other treatments.  These include pain medications, especially narcotics, pseudoephedrine and triptans (Imitrex®) type medications.  If pain medications are used more than two days per week, they often make the headaches un-treatable.  It isn’t so clear with triptans.  We recommend that they not be used more than three days per week except in rare cases when nothing else helps.  Many patients in rebound (or what we now call Medication Overuse Headache) refuse to cut back on their medications and sometimes argue that they are the exception to the rule, or that we are just being cruel. Narcotic addition often becomes part of this quagmire. We do care a great deal about our patients and want them to be well. It can take up to three months to recover from medication overuse headaches.  While we try aggressive measures during this time to help them cope, sometimes things must get much worse before they can get better. In-patient treatment is sometimes needed.

3. Impatience. Preventative treatments can take weeks to be effective.  We must also start at low doses to prevent side effects. Then we slowly titrate upwards. It can take 6-8 weeks before we reach the dose that can really start to help. Headache work, unfortunately involves a lot of trial and error to find the right treatment for that particular patient. It is not uncommon to have 2-3 failures before great success.  Someday we hope to predict better which treatments work for which patients but for now, there is no way to do that but to try different treatments. It is very common that patients give up during this process.  This is especially true if they are used to taking pain medications that give relief in hours if not minutes.  You cannot say that a medication has failed unless you have been on it at a good therapeutic dose for 3-4 weeks. If the patient quits prior to that, it makes it harder to get their headaches better. Non-drug treatments, such as the natural supplements, can take even longer.

4. Endless Search for the “Cause.” Most chronic headache disorders are migraine related. We know this for a fact. A headache specialist will make the correct diagnoses and if it is one of the other, more rare, forms of headache (cluster headache, hemicrania continua, SUNCT, Hypnic Headache, etc.) we will tell you. But even those don’t have a simple cause. While we understand the patient’s frustration and the desire to fix the problem, we also realize such searches bear little fruit and often act as only a distraction and can prolong suffering for many years.
Migraine is a very complex disease and we are discovering more about it each year. There is a very large group of smart scientists around the world who have devoted their entire careers to finding the causes but the whole story still eludes us. At PRHC, we stay on top of the latest research. What we now know is so complex that it is hard to explain to patients in a way that they understand and believe us.  Often patients, their families and friends have the attitude, “It isn’t right for you to suffer so much. Someone has to find the ‘cause’ and all they are doing is throwing medications at you.”  Of course everyone would rather have the cause fixed and be better than to just treat the symptoms. But it is extremely rare that headache syndromes have one simple and fixable cause.  It is a complex interaction between faulty genes that affect how neurons charge up and hold their charge (we have found five genes so far) and other factors.  But many patients spend their whole lives searching for the magic cause as if it were the Holy Grail. They hope that when the cause is found that they will be cured.  So these people continue to be frustrated and sufferer more than most. There is a plethora of misinformation out there that can confuse patients. We focus on treating the source of the disease as research has revealed that source.  

Here are some of the most common “causes” that people search for, but which have absolutely no evidence in science to be the cause for headache.  But science is not static, meaning that new discoveries in the future could change our views.

According to present research these are NOT the cause of chronic headaches:

  • Depression
  • Electromagnetic waves
  • Sleep disorders (insomnia can worsen migraine but never causes it)   Hormones out of whack
  • Atlas bone of the neck or the neck in general being out of alignment  Brain tumors
  • Toxins in the colon or anywhere in the body
  • Arnold Chiari
  • Gluten intolerance
  • “Pinched Nerves”
  • Needing glasses
  • Vitamin deficiencies
  • Having long hair
  • Allergies
  • Thyroid problems
  • Stress
  • Sinus disease (that isn’t apparent on CT scans)
  • One leg being too long
  • Adrenal problems
  • Dental or TMJ problems
  • Black mold

5. Not Seeing a Provider Trained in Headache Medicine. Like in all areas of medicine, the more we know about a disorder, the more complex the disease seems to be and its treatments.  At PRHC we have tremendous respect for primary care providers as they must know a great deal about a wide spectrum of diseases.  But they can only know the very basics about headache management.  It is also falsely assumed that all neurologists are headache specialist by default when really, very few have had special training in headache disorders.  Headache medicine has not historically been taught in neurology residencies.  A neurologist cannot claim an expertise in headache medicine that is much greater than the primary care provider unless they have had specific training in headache medicine. There are now 1 year headache fellowships offered to neurologist, but only about 2-3 in the whole country take that path each year.

At PRHC, Michael Jones had almost ten years of intensive training in headache medicine, first by working with Joel Saper, MD, one of the top headache specialist in the world, and then through years at the Mayo Clinic Headache Division. He continues having one week of training annually through the American Headache and the International Headache Societies and has done so for almost thirty years.  Dr. James Moren spent time in headache clinics and has had the same annual training through the headache societies for the past decade.  Combined with knowledge about headaches, the provider must have a listening ear to the patient and empathy to find success.  We do at PRHC.

6. Being the Captain of Their Own Ship. It is essential that patients take a very active role in their headache treatment. This means giving us feedback of how they feel, keeping records of their headaches, stopping the rebounding medications and doing the positive things that promote wellness.  Some patients however, feel that they must be in total control and do not want to follow the standard plans that have helped millions get well.  Just like with weight loss fad, there’s a huge amount of misinformation about headaches.  It makes more sense to trust someone who has spent their entire careers in headache medicine and research, than someone who just comes up with new fads for treatments. It has been said that the worse health care occurs among the very poor and those of the highest status. The reason that the higher status patients get poor care is that they have traditionally been in control of their lives and business, so they see their medical care as no exception. They want things done their way, rather than the proven way.

7. Pharmacophobia. This is the irrational fear of medications.  This attitude is very common in the Pacific Northwest and it is most unfortunate.  We wish that non-pharmacology ways were found that would treat headaches effectively and we are constantly looking for those.  Virtually all non-drug therapies have been studied and only a few have shown benefit that surpasses simple placebos. We always recommend these therapies, but when they are done alone, especially for the difficult to treat patients, they are rarely more than modestly successful.  Those who say that medications only treatment symptoms and some “natural” treatment really treats the cause is very disingenuous.
 We know for a fact that preventive and abortive medications work best in preventing and turning off headaches by working at the source of the disorder.  We don’t always know how they work. It is most unfortunate that practitioners, who are not trained in or licensed to prescribe medications, have spread the word that taking medications are: a) dangerous, b) only treatment symptoms and not the disease (which is entirely false) and even c) immoral.  We who prescribe medications know more about them than anyone because we are required to if we prescribe them.  You have to trust us that we are trying to help you get well.

Medications are real.  They do real things in the body. So while great benefit can be realized from them, they can have side effects.  We work very hard to avoid side effects and in the blinded studies, most medications have side effects in less than 10% of patients who take them.  However, if a patient is scared of a medication or expects side effects, then about 75% of them will experience them (through a psychological phenomenon what is called the nocebo effect).

We would never, ever prescribe a medication to a patient that we wouldn’t prescribe our own families.  We take patient safety very seriously.  We also take the patients state of wellness very seriously and many patients cannot get well without medications.  To put medications in their proper framework, if it wasn’t for medications, the life expectancy of humans would still be about 30 years old and even those who live to be 30 would have much more suffering than we do know.  I, Michael, have witnessed this personally as I’ve worked in remote places of the globe where there is no medical treatment, only pure and natural foods and water, yet the people suffer needless from treatable diseases and die quite young. We are blessed here beyond what we realize by the advances of modern medicine.

8. Illness as a Lifestyle.  There is a quote in Calvin Miller’s book, The Singer, which says something to the effect of, “For some people you cannot wish health and happiness, because for them, illness and happiness rest comfortable in the same bed.”
We all deserve to be nurtured as children, however, many are not.  Either due to the lack of childhood nurturing, or other reasons, some people develop an insatiable desire to be nurtured even into adulthood. The most socially accepted ways for an adult to be nurtured (like a child) is to be rich and famous . . . or sick.  Some people become entrapped in this habit of sickness; because of the psychological rewards of being nurtured clearly outweigh the desire to be well.

This spectrum of what we call somatoform disorders can span from a slight tendency of not working hard to get well, to embellishment of real illnesses, to total (and often subconscious) manufacturing of illnesses even seizure like spells or blindness, so extreme that the patient them self is not aware that the symptoms are not real. I have never met a headache patient that I know of, who was faking their headaches.  However, I’ve met many whom I am convinced had psychological motivations for not getting better, often on a subconscious level.

This creates a real dilemma for the headache specialist and it is often a lose-lose situation. The patient never gets better and often never even tries the things that we have recommended because psychologically they don’t want to get better.  Part of the syndrome is finding someone to blame (other than themselves) for that failure or what we call, external locus of blame.

While most of us are open to the idea of our mental health playing a role in our physical health, those with somatization tendencies often react in anger to that suggestion.  Sometimes the anger is expressed greatest by the comforter or caregiver if we suggest that somatization tendencies might be the underlying reason they are not getting well.
The hallmark of these individuals is not only their headaches not getting better, but they have a list of many other, unrelated, complaints or illnesses that are not confirmed on any modern tests. They may have many medical providers, many tests done (I’ve seen patients who have had as many as 60 radiological exams in three years), yet they never get well.  They keep looking, as do their families, for someone like House (the TV doctor) who finds some complex physical illness that explains everything. Yet, that rarely happens.  The best way out of this quagmire is through mental health counseling and a support group that doesn’t enable sickness, but encourages wellness.