Several things happened this week that had me thinking about this question. The first thing was hearing about the release of a new study that looked at medical misdiagnoses. It appears that one out of ten people will have a major misdiagnosis sometime in their lifetime. One of the solutions was for the patient to ask more questions, and I certainly agree with that.
On that same day, I saw a patient who had seen the who’s who of headache medicine from coast to coast. She has had the most intense treatments from the most experienced headache specialists in the world. Nonetheless, she still suffered from fairly severe daily headaches. She was not bitter. She did not hate the medical community. She has a very realistic view that headache disorders are complex and can be devastating if left untreated. She knows that it is a horrible disease with no simple cure.
She commented that I probably hate seeing patients like her. Nothing could be further from the truth. This kind of patient is my favorite. They are challenging and give us the opportunity to shine and try to be better than anyone else they have seen. Her attitude was perfect for someone who has faced so much suffering. She also respected the science of headache medicine, and while there are many things we don’t know yet, there are a lot of things we now do know.
This patient had many good questions and I was happy to answer those that I could. She was respectful of the answers that I gave, knowing that I have attended virtually every major scientific meeting about headache in the world for the past fifteen years and I read every research journal.
The next thing that happened in my week was reading a report about a patient I saw a while ago. This patient, a teenager, had typical chronic migraine. The diagnosis was easy. However, which happens far too often with teenagers, his parents didn’t believe it. With each visit, they spent the entire time, plus the time of subsequent patient to argue with me. They didn’t believe anything I said. They questioned, not in a good way, every treatment suggestion that I made. It was emotionally draining for me as dealing with the parents of teenagers can sometimes be. As a parent of five children, one who had a period of serious illness, I understand the fear and frustration. But there has to be a point of realism.
These type of patients have often seen every type of complementary and alternative practitioner you can think of. These practitioners give them simple and confident answers that are easy to understand . . . even if they are wrong. I have never seen a patient who saw a chiropractor and wasn’t told that they don’t have the normal curvature of their neck, or their atlas bone is twisted and that is certainly the cause of their headaches. I’ve never met a headache patient who saw a massage therapist who wasn’t told, “You carry all your stress in your neck and shoulders and that is why you have headaches.” I have never met a patient who visited with a naturopath who was not told that they have a food allergy and that was causing their headaches.
I always ask patients if they have tried these things first before we try medications as I think these CAM providers have something to offer. However, the “causes” mentioned above have absolutely no support in true headache research.
So then they come to see us and we tell them the honest truth. Researchers know a lot more about headaches than they did even ten years ago, however, headaches are extremely complex neurological problems that involve processes that you couldn’t even begin to fully understand unless you have a Ph.D. in neurophysiology. We try to tell them, but they come expecting a simple test that will reveal a very simplistic and easily fixable problem. That is rarely true in real life.
So this later patient’s parents don’t have respectful and honest questions like the first patient that I mentioned. If we don’t do tests to find that imaginary simple and fixable cause they become very angry and direct their anger at us as their enemy, not their comrade and coach. It is very sad because we had 80% chance of helping their child but when they are so frustrated and closed to our ideas, our hands become quickly tied.
These angry patients often go from healer to healer trying all kinds of treatments that have no basis in what we do know about headaches, but which sounds liked what they are looking for, simplistic and easily solved.
In the cases of the teenager, they recently saw the adolescent headache specialist who is considered the best adolescent and child headache specialist in the world. I have worked with him and he is extremely kind and compassionate and very smart. Yet, the parents were enraged at him and demanded to see someone else. The person they ended up seeing was a new graduate neurologist who has never darkened the doors of a headache meeting and who had simplistic answers about stress being the cause of their child’s headaches (a simplistic view from the 1970s).
There is a great difference between honest questions and arguing because you refuse to accept reality. We all wish that we had diseases that were simplistic and fixable. But that is not the world we live in.
That teenager’s headaches will eventually go away, as most do (so we hope) and they will believe whatever magic treatment they were doing at that time was what “cured them.” But they could have had fewer years of suffering if their parents had honest questions and not argumentive ones.