Five Reasons Some Headache Patients Don’t Get Better–Part II

3. Unrealistic Expectations. At Pacific Rim Headache we see some of the most complex headache patients in the world. We have many patients who have spent years struggling with their headaches, traveling the country, seeing many different types of experts, including other major headache centers, and yet are no better. These patients will often say, “I bet you hate seeing someone like me.” Actually nothing could be further from the truth. We actually enjoy caring for these difficult patients. The reason is, they have a very realistic understanding of the disease of headache and expectations about treatment. They are no longer looking for a quick gimmick. Migraine, the main one of many different headache disorders, is a horrible disease. It is very complex, far more complex that many other diseases, such as asthma or MS. Even our most gallant attempts to help patients get better, only work about 75% of the time. Therefore for about 20-25% of patients, very little helps.

When a patient is new to having headaches, or their headaches suddenly get worse, they can have unrealistic expectations. In my opinion, I believe it is because they are follow society’s low esteem of headache disorders, not respecting migraine for its seriousness and complexity. They instead may believe that they are having headaches for very simple, and easily fixable, reasons.  We only wish that could be true.

There are many mythologies about headaches causes and treatments. There are also providers who use misleading marketing promotions of, “We treat the cause and they (meaning us) just only treat the symptoms.”  I can say with the greatest of confidence, (having attended virtually every headache research meeting in the world for the past 30 years), that no one on this planet knows the full cause of headaches, including migraine, and there is NO simple cure.  Healthcare fads come and go, and virtually all of them list curing headaches on their long list of magic cures. Unfortunately, none of them work better than a placebo.

Very smart people are studying headache disorders now, however, the progress is slow. Headache researchers, speaking metaphorically, are now standing on the beach looking out to a vast sea. No one knows the entire sea but at least we now know the shore quite well for the first time. Someday we will know most of the complexities of headaches and treatments will be precise and effective.

One of the main reasons that patients don’t get better is that they come in on the first day saying, “I don’t want medications to just treat the symptoms, I want to find the cause and cure it.”  While I certainly understand this motive and desire—and it is a noble aspiration—I also find this very disheartening.  From my experience, I know that these people rarely do get better and often get angry before it is over. They get angry at us for not doing more tests to “find the cause.” The American and International Headache Societies, representing the brightest minds in headache research, support the fact that medical tests rarely helps headache patients. We know, most of the time, how to get patients well and this endless search for the “cause” becomes a distraction that can ruin a person’s life, because it keeps them from getting the help they need and deserve.

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:

Sinus problems

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 that no one has found yet

Toxins in the colon or anywhere in the body

Arnold Chiari Malformation

Gluten intolerance

“Pinched Nerves”

Needing glasses

Vitamin or mineral 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

Chronic Lyme Disease

4.   Anxiety. Anxiety is the most common mental illness. More than 18% of Americans have been diagnosed with significant anxiety disorders. Among sufferers of headache disorders that rate is even much higher. There are two ways that anxiety can sabotage a headache patient’s opportunity to get better. The first way is by irrational fears of the cause. The second is by irrational fears of treatment.

“Cause-phobia.” This point is somewhat related to number 3 above, but with anxiety taking it to a higher level. Some patients with anxiety disorders have an irrational fear of the cause. Almost every time their head hurts they start to worry about brain tumors, MS, aneurysms or whatever comes to their mind . . . or they read online. Most of the time an experienced headache specialist can rule out dangerous causes on the first visit. It is reasonable to have a brain MRI if the headaches have become daily and to have a MRA if the headaches come on suddenly. But once those tests are done, there is very little reason to do further testing or further worrying. The greatest real fear of headaches should be is that the pain from them can ruin your life, not that something life-threatening is being missed.

The way this interferes with treatment is that if a patient is over-worried about having serious illnesses, their subconscious minds will start to make them “sick.”  They will develop more symptoms and go to more and medical appointments, being distracted from focusing on getting better.  They start to go doctor shopping looking for that one, horrible diagnosis (other than migraine) that explains all their symptoms.

Pharmacophobia. This is the irrational fear of medications. Like arachnophobia (the irrational fear of spiders), this fear has very little basis in reality. Sure, there are spiders that can hurt you, but people with arachnophobia are fearful of all spiders and often of just places that look like good places for spiders to live. Arachnophobia exist, most commonly, in geographic locations where no dangerous spiders live.

I have practiced medicine in many parts of the world and I can say I have never seen the level of pharmacophobia that we see in the Pacific Northwest. There are several reasons for this negative view of medications here, but that discussion is beyond the scope of this simple posting.

When treating headache disorders, we always advise patients try the non-pharmacological treatments first, or at least along with pharmacological treatments. No one is happier than us when something like magnesium, biofeedback or boswellia takes care of the problem. But the reality is that those “natural” treatments are rarely enough for people who are the victims of serious headache disorders.

When a patient has the belief that medications are dangerous, have unknown long-term harm, or are toxic, it is very difficult to persuade them to try them. Many patients feel that it is immoral to take medications. This fear is not based on reality. While side effects do sometimes occur from medications, serious harm from medications is extremely rare, far rarer than the inherent danger in driving on the highway for any distance, such as driving to the health food store.  We try very hard to use the medications with the greatest possibility of helping and the least risk of side effects. Most of these medications have been taken by millions of people for decades with no reports of serious harm.

Most people are familiar with the “placebo effect” where you believe that something will work and then, due to psychological factors, it does appear to work. There is an equally powerful psychological effect called the “nocebo effect.”  In this scenario, the patient is very fearful of side effects or harm from a medication and then when they are talked into to trying them, they will, due to psychological factors, have the very side effects that they fear.  Then they stop the treatment prematurely.

It becomes almost impossible to help a patient with such anxiety and pharmacophobia.  The reason is, for those with serious headache disorders, medications have the best hope of helping. If you fear the only thing that can help and you see the provider who is giving you that medication with suspicion, then the treatment always fails.

5. Financial Restraints. Forty four million Americans don’t have any health insurance. That means about twelve million Americans suffer from headache disorders and don’t have health insurance.  This makes it very difficult for them to get the care they need or deserve. They usually don’t have health insurance because they are under employed (part time) or not employed at all. That means these same people don’t have the funds to pay out of pocket for medical visits or medications. I would estimate that an uninsured patient is at least a 50% less likely of getting well because they are uninsured. It isn’t that medical providers won’t see them, but that they can’t afford to go very often and thus they can’t get the routine care they need. The Affordable Care Act has helped this situation.

The other financial reasons involve those who do have insurance. Insurance pays for basic headache treatment okay. However, when patients fail the basic treatments and need to move into the more complex therapies, it is often not covered. The reason for these denials is that the medical advisers to insurance companies (usually non-headache trained physicians and pharmacists) don’t know a lot about headache treatment besides the simple basics. So when you start using medications off label, and there are only three medications approved for headache prevention, they don’t want to pay for them because they don’t understand what we are doing.

The other issues it that a treatment, such as acupuncture, which has shown to be helpful is not covered at all. This also hinders the patient.

I will add a third reason that financial restraints interfere with headache treatment is on the providers’ side.  Headache clinics are not money makers. The reimbursement is low and the cost of maintaining the medical practice has become extreme.  No headache specialist takes care of headache patients to earn money, but must do it for a personal loss. It takes a lot of time to help patients get well. Good headache treatment doesn’t involve a lot of expensive procedures. The way that insurances are set up at the present time is that they pay well for procedures but not time and compassionate listening planning complex strategies for getting better.

Therefore there is a huge under-supply of headache specialists in the country and those headache clinics that do exist have to have bare-bones practices and the problem is getting worse. The reason that it is getting worse is that under the Affordable Care Act because as insurance companies participate with that program, they are drastically cutting payments to small practices.  Headache clinics have borne the pain of these cuts more than other clinics because insurance companies don’t understand the depth of the headache problem or the need for specialized treatment. In Washington State the ratio of the population to headache specialist is 1:2.2 million.  It has been well documented that patients have a much better chance of getting better if they are under the care of a headache specialist, rather than a primary care provider or even a general neurologist.

Sorry for any typos as I had to write this quickly without adequate time to proof-read.  J. Michael Jones, MPAS-C