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Searching for a Concrete Diagnosis

“My doctor seemed angry with me for not responding to treatments.” “My doctor couldn’t find a diagnosis and just gave up on me.” “If I know what’s wrong, then maybe something can be done to treat it.” Everyone with a headache disorder probably says something along these lines.

Headache disorders are difficult to diagnose. MRIs, blood tests, lumbar punctures…. If one of these turns up something, then there’s a high likelihood of being diagnosed with something concrete. Usually, though, they only rule out possibilities. It may seem like your doctor has given you a diagnosis by default. And that’s usually the case! Some disorders are only diagnosable by process of elimination. Migraine and chronic daily headache are two of those. (I think cluster headaches too, but am not sure). They just don’t show up on tests.

With a diagnosis based on vague information, we keep searching for what’s wrong. If nothing shows up on tests and it can’t be treated effectively, then how can it really be the right diagnosis? No reason to stop looking, but the search can overwhelm you. Also, fixating on one aspect may make you lose touch of other important factors or possible illnesses. I’ve been focused only on migraine for the last six years and I’ve begun to wonder if I’m missing another problem.

You know what patients think when they can’t find a clear diagnosis. What’s it like for a doctor to not really know what’s going on? This New York Times article includes a glimpse into the answer.

“Why do doctors and patients often approach the diagnosis of disease so differently?” Barron H. Lerner, MD asks in When the Disease Eludes a Diagnosis:

But what happens when [severe] conditions are ruled out? In such cases, doctors proceed to search for less dire (and, it must be said, more mundane) diagnoses. The trouble is that at this stage, some physicians, busy with other patients and duties, lose interest.

[non-contiguous paragraphs]

Part of the problem with these conditions is that existing treatments are not nearly as effective as those for, say, heart attacks and pneumonia. As a result, doctors may grow irritated when patients continually complain of symptoms that cannot be “cured.”

Speaking of a current patient, he wrote:

While trying to be as sympathetic as possible, I find myself reminding Lucy of the limits of certainty in medicine. Despite enormous advances in technology, some diagnoses may remain elusive. I also told her that it was highly unlikely her doctors missed diagnosing a disease that could have been successfully treated. But she remains convinced that she deserves to know exactly what she has.

So we will continue to search.

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Is One of Your Medications a Placebo?

Almost half of doctors use placebos to treat patients, but only 4% are up front with patients about it, according to an American Medical Association article. Having doctors admit that they dance around the truth to get patients to agree to a medication they don’t know is a fake is troubling. It also poses ethical questions about patient-provider relationships. But…

Placebos have an important role in medical treatment. I’d be thrilled if one did the trick for me. Telling the patient that they’re getting a placebo undermines the placebo effect, thus negating the potential benefit. I wouldn’t want to know if my doctor prescribed a placebo for me — at least not at first. However, I also expect my doctors to be honest with me.

The phrases physicians used were:

  • “[It is] a substance that may help and will not hurt. “34%
  • “This may help you, but I’m not sure how it works.” 33%
  • “It is medication.” 19%
  • “It is medicine with no specific effect.” 9%
  • “It is a placebo.” 4%

The article Doctors Use Placebos But Don’t Tell Patients describes the study and the American Medical Association’s response to it.

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Is Seeing a Specialist Always Best?

When people ask me about finding a doctor, I almost invariably tell them to see a headache specialist. Seeing someone with headache-specific knowledge is important because headache disorder education isn’t widespread. But is seeing a specialist always the best idea?

Dr. Aniruddha Malpani of The Patient’s Doctor writes:

Most patients want to go to the doctor who has special expertise in handling their particular problem. They will spend a lot of time and energy tracking down the “biggest name in the field” – and then leave everything up to the doctor. This can often be a short-sighted approach, because specialists are biased, and it’s important to be aware of this bias.

While it’s true that an expert has a lot of experience in dealing with a particular problem, this extensive experience also introduces all sorts of bias in the way he handles this particular problem. There are many reasons for this.

Because he is used to seeing complex cases which have been referred to him, he often cannot deal with simple bread and butter problems ! He also sees life through a distorted lens, and may not be able to see the big picture. Because he cannot afford to make mistakes, he often overtests and overtreats. He often asks for esoteric and expensive (and painful) tests, to differentiate himself from the other ordinary doctors. He also usually bad-mouths alternative options of dealing with the problem – after all, this is his competition! He is reluctant to refer cases which he cannot handle, because this would damage his aura of omnipotence and omniscience.

Often, in the pursuit of narrow goals, he loses objectivity; and is more interested in doing research rather than treating patients. Many experts are so used to seeing only sick patients, that they often cannot recognize a normal variant!

What do you think? Let us know in the comments below or on the online support group and forum.

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Prescriptions More Common Than Explanations

I always tell you to talk to your doctor before taking any medications or supplements or latching on to a diagnosis. As well-intentioned as these pronouncements are, I sometimes feel like I’m doing the same CYA that drug companies do in ads. Really it’s that I want you to be safe and hope that a doctor’s input may help.

I know even that may be a long shot, a belief backed up by a recent study. The findings indicate that many doctors prescribe medication without explanation of the drug’s purpose and side effects or even it’s name. According to the New York Times article on the study:

“Although there were variations, depending on the type of medicine
prescribed, 74 percent of the doctors mentioned the trade or generic
name of the medicine, and 87 percent stated its purpose. Sixty-six
percent said nothing about how long to take the medicine, 45 percent
did not say what dosage to take and 42 percent failed to mention the
timing or frequency of doses. Physicians mentioned adverse side effects
only 35 percent of the time.”

So you can’t always rely on your doctors for information on drugs, is there anyone who can help?

Check with your pharmacist. They are trained to know drugs inside and out. Many enter the field with a goal of helping people, but the reality of the job doesn’t involve much of that. Most pharmacists I’ve met are more than happy to explain medications — even if they are over-the-counter — and answer questions. If the pharmacist at your local Walgreens is a dud, try the Walgreens that’s two blocks down the street!

Talk to a friendly person in your doctor’s office. Maybe you get along great with the nurse who takes your blood pressure; it can’t hurt to ask for clarification that you don’t get from the doctor. In some offices, a physician’s assistant or nurse practitioner returns phone calls for the doctor. You may find that they have more satisfactory answers to your questions. If you get along well with the PA or NP, why not consider making your next appointment with him or her? Or if you’ve always seen the head honcho of the practice, you might consider seeing some other doctors in the practice. They may be less harried and, thus, have a more patient-friendly demeanor.

A naturopathic doctor is another option. By focusing on the person instead of the patient, much of the appointment is about addressing the person’s questions and concerns. Licensed NDs are trained to integrate their treatments with those of western medicine — understanding pharmalogical treatments is a vital component of this practice.

Last but not least, ask your doctor! Yes, it seems like the job should require such explanations, but it’s also a high pressure job. Haven’t you ever forgotten to explain things to your co-workers, employees or clients? Being a recipient of information is as big of a job as being the giver of that information. You aren’t a passive recipient. You’ve got to ask your questions to have them answered. Of course, if your doctor consistently comes up short, it’s probably time to look for a new doc.

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An MD’s Suggestions for Effective Advocacy

Dr. Christina Peterson, headache specialist and founder of HEADQuarters Migraine Management and Migraine Survival, commented on the Effective Advocates post with great advice for all of us:

There is no excuse for doctors or other health care providers to be jerks. However, please be aware that under current HIPAA laws we are somewhat restricted regarding how much information we are allowed to release to anyone who is not the patient without the patient’s written permission. If you are in the room, obviously there is a level of implied consent–unless there is reason to suspect an abusive relationship, which we are also obligated by law to report. And…between 1/5 to 1/3 of women reporting to Emergency Departments have been victims of some sort of sexual or domestic violence or abuse. So–it becomes complicated.

In today’s deteriorating health care environment, the Emergency Department has become something of a war zone, inundated by trauma victims. And with the general lack of awareness and poor attitude regarding the headache sufferer, we tend to fare poorly in the Emergency Department and are treated, at best, as a nuisance, and more often, as a drug seeker. This is why I try to give my patients the tools they need to manage their headaches on their own without resorting to Emergency Department treatment unless they have become dehydrated and require IV hydration.

If you do go to an ER, take an advocate who can remain calm but persistent, while keeping these points in mind–and someone who can educate regarding headache/migraine wouldn’t hurt!

Another point: if you think you might be too impaired to call your physician’s office during a headache, and you are going to want a family member to call on your behalf, please sign a consent form for that person to talk to the physician when you are in the office. We really are not trying to be difficult about this–it’s federal law intended to protect your confidentiality.