Loss in the Quality of Life, Intrinsic and Imposed

Intrinsic Factors Impacting the Quality of Life

In my previous post, I alluded to one study, titled Quality of Life in Primary Headache Disorders. It appeared in the January issue of the journal Cephalalgia, An International Journal of Headache. The authors reviewed eighty prior studies, which looked at quality of life issues for headache patients. While the World Health Organization has listed headache disorders as one of the top reasons people become disabled, the sufferers of headache are often discriminated against as having something that is not that important.

One of the errors that the study exposes, is that many measurements about quality of life for headache sufferers, focuses on the actual pain. While the pain is very important, it is only one facet to the disease. Other facets include, nausea, light sensitivity, dizziness and the fear of headache.

Another overlooked aspect is that when you have a disorder that randomly attacks and ruins your day, and since there is no way to predict the timing of that ruin, it can cause a significant impact on your life. That impact goes beyond just measuring pain or any physical symptoms. First of all, how do you plan? We are not just talking about picnics with the family in the park, (which is also important), but things like holding down a good job.

Many headache sufferers are under-employed and are never allowed to fulfill their professional aspirations or potential. Of course it is not fair. They may be brilliant, talented and well-trained individuals, but when an employer can’t count on them for important projects (and some employers even doubt the integrity of the employee’s reasons for missing) they don’t get the promotions, pay increases or praise that they deserve. Many, in fact, lose their jobs completely. This doesn’t even include other social losses, such as losing a husband, boy or girlfriend for the same reason.


Imposed Impact on Quality of Life

I also wanted to talk about the “imposed” impact on the quality of life. These are the things that we do to ourselves, that influence our quality of lives. These can, in my opinion, be avoided.

Headache, as a disease, has a huge P-R problem. The problem is the commonality of it. Everyone gets a headache now and then (almost everyone) so when they hear a serious headache sufferer talking about their headaches, they imagine that they are talking about the same thing. They are not. For this reason, everyone has a remedy for the patient . . . one that “works every time.”

Headache Medicine, as a research science is not new. There is still much to learn, but we have come a long ways since the 1960s. We have learned what works and what doesn’t work for the general patient. Every day I see patients torturing themselves with things that someone, who has never studied headache disorders, says will cure their headaches. The problem is, we tried most of these things in the 80s (or before) and they did not work. It is not that we do not care, that we are not “up-to-date” on the latest fads, but that we have had decades of experience doing this.

I could point to a variety of things, but I will focus on the largest one, and that is diet. I must hear every day that patients talk about giving up all the things they use to enjoy, for the sake of their headaches. This is a serious quality of life issue. But do they really have to give those things up?  Can they not find some pleasures still in this life?

In the 1980s we put patients on miserable, restrictive diets. Usually it was an elimination diet, where we started by eliminating everything. Then, over time, we reintroduced item by item. We stopped doing that because it subtracted from the quality of life and did NOTHING for their headaches.

In those days, before we knew better, we published our diet lists (which had very little scientific evidence at the time).  These diets included avoiding all cheese, chocolate, MSG, nitrates, caffeine, alcohol (especially red wine), tyramine-containing foods,artificial sweeteners, sugar, bread and the list goes on and on. Some patients were reduced to soy and water. If these diets made a major impact on the headaches by reducing their frequency and severity, it would have been worth it to some people. But the evidence was not compelling that it made any difference.

Now, thirty years later, people who know almost nothing about headache disorders and the years that we have spent in research, pick up our old diets, the things we published, and promote them as the latest headache cure. These are fads and are distracting. Just like the fads (and huge business) of weight-loss fad diets. They almost never work because they are not based in reality (things like Weight Watchers are different).

If you are a “glutton for punishment” and your headache suffering alone is not enough loss in your quality of life, then go for it. Go gluten free, paleo diet, Atkins Diet, “Whole Foods Diet.” Give up the things you really like, like caffeine, chocolate, alcohol. But in my opinion, headache sufferers already suffer enough and why do we need to add more misery?

Of course there are healthy and unhealthy diets. The Mediterranean diet is a wonderful diet for our general health, but so far we have not seen any help from it for headaches.  Avoiding refined sugars or simple carbohydrates is a great way to avoid weight again. In the long run, it is possible that by losing weight the headaches might get better (studies are in progress right now to determine if this is really true). No “anti-inflammatory diet has been shown, so far, to help headaches.

I want to add, at this juncture in the research of the really smart scientists, there is no evidence that a food allergy causes headaches. Then what about food triggers? It is possible, but not clear, that some foods might be a trigger for some patients. MOST PATIENTS HAVE NO FOOD TRIGGERS. The only food trigger that effects the majority of patients is if you drink high qualities of caffeine and suddenly withdrawal, this likely would trigger a headache.

It is an honorable pursuit for a patient to try and do things for themselves to help their headaches. There are plenty of behavior things that patients can do that might help. Trying one fad diet after the other is probably not one.  Listening, even to health care providers, who have zero training in headache disorders (eg. Dr. Oz), is not helpful. We are constantly looking for supplements and diets that might help but so far the results have been disappointing. The follow is a list of things that a patient can do that might help:

  • Regular exercise,
  • Biofeedback (not neuro-feedback, which has no scientific support so far),
  • Avoiding and managing stress,
  • Practice good sleep hygiene (if you want to know more I recommend the book No More Sleepless Nights),
  • Stay hydrated but don’t become obsessive-compulsive about it,
  • Stop smoking,
  • Acupuncture (there is limited scientific evidence that this might help),
  • Take the supplements that have some scientific evidence of being helpful (magnesium, riboflavin, Co Enzyme Q 10, Boswellia, Butterbur—but only the form that has not been associated with liver toxicity).

Now back to food triggers. How do you find them?  This article is already getting long so I will link this discussion to a well-written article by the American Council for Headache Education here.

If you want to know what studies have been done with foods and supplements I will try to link a comprehensive study here.  If you want some general guidelines, I will link a brief overview here.

J. Michael Jones, MPAS-C