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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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Opioids for Chronic Pain & Questioning Pain Doctor vs. Drug Pusher

Pain specialist Ronald McIver is serving a 30 year sentence for drug trafficking. The drugs? Opioids prescribed for pain relief. NY Times Magazine looks into McIver’s case and the mess surrounding opioids for pain management.

The in-depth piece definitely supports the use of opioids for pain management. I’ve created a PDF of the article so I could highlight what jumped out at me. I didn’t highlight any details of McIver’s case.

I, too, believe that opioids should be available for people with chronic pain. However, the devil’s advocate in me jumped on a bunch of thoughts that I hope to explore this week:

  • Not feeling the body’s pain signals isn’t necessarily good.
  • The effects of long-term opioid use aren’t well known. Most research has been with cancer patients, who do not use the drugs for extended periods.
  • Building tolerance is not only your body getting use to the drug (called desensitization), but becoming more sensitive to pain overall, not just the pain that you are specifically treating.
  • When most patients (and some doctors) feel like they’ve tried
    everything, they haven’t. Often other treatments should be considered
    before turning to opioids.

Just reading this list may raise your ire. Please give me a chance to write about the topics before jumping down my throat. We’ll be able to have a more thorough discussion that way.

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“Among the Worst Nonfatal Afflictions of Humankind”

That’s what a New York Times article from yesterday says about migraine! (That’s right, the New York Times.) The article begins,

“Everything you thought you knew about migraine headaches — except that they are among the worst nonfatal afflictions of humankind — may be wrong. At least that’s what headache researchers now maintain. From long-maligned dietary triggers to the underlying cause of the headaches themselves, longstanding beliefs have been brought into question by recent studies.”

It just gets better from there. The differences between migraine and a headache are highlighted and little-known information, like the plethora of related symptoms and the severe disability that accompanies a migraine episode, is addressed.

I’m so excited that the illness is being noticed by a major media voice that I’m simultaneously bouncing in my chair and tearing up. It’s currently the most e-mailed article on their website. Perhaps your friends and family (and maybe even co-workers) need to see it too.