Why Some Headache Sufferers Don’t Get Better

I wrote a paper about this years ago, and I’ve done several talks on the topic. However, the topic came up again this week with a patient.

Virtually all major headaches have the same statistics of significantly helping about 75-80% of patients who come to them. But what about the other 20%? I will list some of the most common reasons patients don’t get better.

  1. Bad Genes.  Chronic headaches are related to a genetic disorder that occur across a spectrum of severity. On the far (bad) end, some people just have horrible headaches. It’s not their fault. Some of these patients try very hard, do all the right things and still they have bad headaches almost every day. They shouldn’t feel guilty for having such bad disease.
  2. Denial. This is an especially common reason that younger people (teenagers and in the twenties) don’t get better.  They don’t realize, yet, how horrible a disease migraines can be, nor the complexities of it.  They assume that something very simply is wrong and it can be fixed easily and they will live happily ever after. They have watched on TV shows that Dr. House always finds the simple problem, fixes it, and the disease goes away.  They keep asking for more tests and sometimes get mad at the provider because fails to find a simple cause. Because they have these false expectations they don’t want to do the hard work it takes to get better.  I’ve follow some of these patients for years (with me never giving up) until they finally realize that there is no simple cure and it is time to work hard to improve their quality of life, then they do get better.
  3. Irrational Fear of Treatment. I strongly advocate minimally invasive treatments first. I talk to every, single patient about dietary measure, triggers and so-called “natural” treatments.  However, these often fail.  Scientific research has proven that prescription medications work the best to prevent headaches from coming.  Once that the patient has exhausted all the non-pharmacological treatments, they should be willing to move on and try things that could work much better. Many are not. Some people have a fear that the medications will hurt them.  Medications are real, not just placebos, so they do have real risk of side effects.  The vast majority of those side effects are a nuisance at best and we try very hard to use the safest medications.  But the law now requires all potential side effects to be listed even if the odds are less than one in a thousand. This really scares people and that is a shame.  It is very rare that someone is significant hurt by a medication, while millions are helped. I would never prescribe a medication that I wouldn’t take myself or give to my own family and I know more about the medications than the patient. I call the fear “irrational” because it concerns them much more than far more dangerous things, like driving, smoking, obesity and elevated cholesterol.
  4. Failing to Stop Rebounding Medications. We have known since the early eighties that some medications make headaches get gradually worse over time and if they are continued to be taken frequently, will likewise keep the headaches from getting better.  If the following medications are taking more than two days a week, they could be preventing the patient from getting better; over the counter combination pain medications (Excedrin), decongestants (Sudafed), prescription and pain medications. Sometimes you must get worse (allowing these things to get out of your system) before you can get better. This point becomes a barrier to some patient, beyond which some patients are not willing to venture.  There are good medications (which treat the disease) and bad medicines, which simply cover up the symptoms. These rebounding medications are often only covering up the symptoms. When we use medications, we use the good ones, which treat the underlying disease.
  5. Failing to Address Triggers. There are some triggers that can be eliminated or helped through behavioral changes. These things include issues as insomnia and stress but can also include things such as diet and taking estrogen. For example, exogenous estrogen (that which comes from outside the body) can make headaches worse.  The only way to know is to go off for three months.  You  have to look at the whole patient and if the estrogen is needed for another problem, then they can decide to stay on them. But some patients (post-menopausal) do not want to stop the estrogen because of hot flashes and continuing to take them could make the headaches harder to treat.
  6. The Headache Provider Not Knowing Enough About Headache Treatment or Not Listening to the Patient. Medical care in general is far more complex than it was just a couple of decades ago. Headache Medicine, just like any other field, has advanced rapidly. What was taught in medical school just a few years ago, we now consider out-dated. The provider must stay up-to-date on headache treatment. The premier source for staying up-to-date is being participating members with the American Headache Society and/or The International Headache Society. The vast majority of research and information comes through those organizations. Lastly, even if we headache providers know a lot about headaches but fail to listen carefully what patients are saying, we can make the wrong diagnoses and offer ineffective treatments.  There are more than thirty distinct headache types and the treatment varies between the types.