Several things lately have brought this concept once again to the forefront. The first set of reasons has to do with encounters with five particular patients over the last week. The other thing was a bogus ad that got sent to me on Facebook because, somehow, my name is associated with the word “headache.” I don’t know how Facebook works but I must have talked about headaches and now they put me on some kind of list where I get headache ads. The ad I got was slick . . . but deplorable. It was 98% lies about headache and they wanted to sell stuff that was total crap. But now on to my patients.
A Tale of Five Patients
I want to talk about five of the 100 patients I saw this week because there is a message in this story. Patients A and B have a similar history. They, as far as headache sufferers, look horrible on paper. I’ve followed patient A for a while and just met B this week. When I first met A she was having severe migraines almost daily and had for many years, as is B now. They both had been to numerous headache treatment centers, taken a truck load of medications seen chiropractors, naturopaths, acupuncturists, gluten free diets, mega magnesium and vit D IVs and seen many other providers without a lot of help. However, when I first saw each of them, I was quite optimistic they could do much, much better. I actually love working with these kinds of patients. A is much better after six months, having only one bad headache this past month and B will be and I’m confident of that.
So then there are the patients C, D and E. They have in common a less troublesome headache problem, with headaches that are either less severe or less frequent than A and B. They also have had very little treatments in the past. However, I am very pessimistic that C, D or E will ever get well and I’m doubtful that I can ever help them. So what is the difference? It is simply attitude.
Patients A and B, maybe because they have been at this so long, simply accept the fact that they have migraine and treating it takes work and patience. Migraine is a horrible disease state. We know why people have migraine as this isn’t the Dark Ages any more (see my video on What Causes Headaches). Patients A and B didn’t come to see me looking for some secret cause that, when fixed, would solve all their problems. They knew that their disease was bad and they had realistic expectations.
They also weren’t looking for some underlying mystery disease that only Dr. House (from TV) could find. They were respectful of the smart, and in my opinion (having met most of them) humble and caring headache scientist who have spent their careers unraveling migraine and teaching us how to treat it.
Patients A and B were also willing to try and get better and to follow my recommendations. It isn’t that I’m so smart but I’ve been at this full time for thirty years. I’ve set at the feet of the really bright researchers for this period of time. We do know how to get people well, most of the time, if they would just listen to us and follow our recommendations. However, we are not dictators but coaches and cheerleaders. Patients A and B also see us as their friend and coach not their enemy, the headache disease is the real enemy.
Now to patients C, D and E. I’m met thousands of them over the past 30 years and they virtual never get better. I guess migraine isn’t sexy enough of a disease for them. They are convinced that they have some exotic underlying disease state that all the stupid doctors can’t solve. Some kind of weird adrenal problem, toxic metals in their blood stream, thyroid problems, vitamin deficiencies, allergies, secret sinus conditions . . . all of which if cured would solve their problems from now on.
These patients come to us, seeing us in an adversarial role, unless we just happen to find that exotic electromagnetic energy drain in their nervous system that they had read about on the Internet. If we don’t agree with them, that they have some exotic disease, they get really mad at us. So, we can’t help them because they don’t trust us and see us as the enemy.
It is strange to me that us who have worked in headaches for decades, who have seen tens of thousands of patients, who have gone to hundreds of scientific meetings on headache research, have no respect in their eyes. Yet, like the Bozo who sent me the advertisement from Facebook, they believe them instantly. These peddlers of snake oil all say the same thing. “Don’t take those evil and dangerous medicines that only cover up headaches. We know the real cause and we offer the real cure.” They then explain that the real cause is x,y, or z and the cure is something they happen to sell out of the trunk of their cars (or on line).
So patients C, D and E come in like they do every time, doing absolutely nothing I’ve asked them to do, but with a handful of papers of mis-information about headache that they got off the Internet or health food store or some new book of magic cures. The people writing the papers and books have no training in headaches and, to be frank, are greedy, lying, idiots. Many of them were making money a decade ago selling super insulation for your house, or cold fusion for your basement. I don’t like them because they hurt my patients. I have a passion to help patients get well, like patients A and B. Anyone who stands in my way, causing my patients to go on years and years of suffering irritate me.
Everyone wants a quick fix, and I can understand that. I also understand patients who want to avoid taking medications. I don’t like taking medications because I, too, am prone to side effects. But I hope I’m realistic. If you have a bad disease and you avoid medications (which are real, and are safe and proven effective) then you must also accept your disease and live with it.
But it isn’t even about medications. I offer every patient I see the non-drug treatments first. I offer only those that have gone through studies to prove that they are safe and helpful. Yet, patients like C, D and E won’t even follow those recommendations. Instead they go to someone, maybe a clerk at the health food store or some web page, a relative or neighbor and buy a bunch of crap and take that instead. They follow this diet or that diet, which sells books but was disproven in the eighties. They buy crap that doesn’t have a single study to show that it is helpful and the sellers wouldn’t know the difference between a migraine or cluster headache or SUNCT if it bit them on their you know what. And I’ve heard a million times from patients, after I’ve spent hours trying to educate them on what causes headaches, “My (fill in the blank, husband, sister, mother, neighbor, boss) wants to know why you haven’t even tried to find the real cause to my headaches but only want to throw medicines at me to cover it up?” I think my head will cave in if I hear that again. We know the real cause. I tell each patient the real cause in as simple terms as I can . . . but I can’t help it if they choose not to believe me.
I do understand the position that C, D and E are in. I personally have an autoimmune disease and I hate it. It really impacts on my quality of life. As I’ve tried to read about it, I keep coming across “get well, simple and quick” schemes using slick testimonials (which are usually well paid). They are so enticing because, in reality, my disease tends to be hard to treat. I understand that lure.
However, I do have this passion to help people. In all the years I’ve done this, I’ve never misdiagnoses a patient that I know if. I have (rarely) found underlying diseases that were causing the headaches. About once a year I find a brain tumor. Rarely I find things like an autoimmune disease (PM and R), once I found lymphoma. Rarely does a dental problem have anything to do with it. But those things make up < .1% of the patients. Patients like C, D and E, when they get angry at me (because I can’t find that mystery disease they were hoping for) say that they are leaving I always tell them that if they ever find that mystery disease, please let me know. None have so far in the last 30 years.
I would love it if my days were filled with patients A and B. Who have horrible headaches, who feel hopeless . . . but who are willing to try and listen and work to get well. It is so rewarding when their lives changed.
(Sorry for typos, I didn’t have time to proof-read this yet)