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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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Online Tool to Assess What Kind of Headaches You Have

Migraine, tension-type, sinus, cluster. . . . You know what your headache feels like and the other symptoms you have. Seems like finding a diagnosis would be easy, but it can be quite complicated. Consider these factors:

Headache Central, an educational site sponsored by the Michigan Headache Treatment Network, has a tool to help classify your headaches in medical terms. The online program asks questions about your headaches, determining which questions to ask based on your previous responses. After you’ve answered all the questions, you’re given a page with your responses and possible diagnoses summarized in a doctor-friendly format to print and take to your next appointment.

The program is not intended for you to diagnose yourself but to provide your doctor with a more complete view of what you’re experiencing. Of course, many readers will use the information to guide further online research. Arriving at your doctor’s office well-informed is helpful; so is being open to what they have to say. Think of the headache classification tool a starting point from which your doc can ask you relevant questions (and vice versa) to flesh out your diagnosis and find the appropriate treatment for you.

FYI: The program doesn’t work in Firefox.

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Sinus Headaches May Acutally Be Migraine

Throbbing and tenderness in your nose, cheeks and/or eyebrows seem to be clear indicators of a sinus headache. Most likely they aren’t. 90% of what patients think are sinus headaches are actually untreated migraines.

[Headache specialist Eric] Eross and colleagues advertised a free evaluation to people suffering from “sinus headaches.” They signed up the first 100 people, and gave them a rigorous 1.5-hour evaluation. It turned out 90 of the 100 patients were really suffering from migraines.

Sinus headaches do exist, but they are much rarer than people believe.

If you have an active sinus infection, your head hurts. Typical symptoms include fever, swollen lymph nodes, and a green or yellow nasal discharge. But most people who think they have sinus headaches don’t have these symptoms — just pain high in their cheeks. They likely have migraines, Eross says.

Following the study, about half the participants who thought they had sinus headaches became Dr. Eross’s patients. Most of them improved dramatically with migraine treatment.

Sinus headache was one of my early self-diagnoses. I can’t tell you how many allergists, ENTs and ENT surgeons I saw. I underwent numerous tests and scans and tried meds and allergy shots, but nothing showed that I had sinus headaches. That didn’t stop me from having nasal surgery for my headaches, which was completely ineffective.

My migraines don’t fit the symptoms of what most people think of as migraine: I didn’t have a visual aura, one-sided pain, nausea or sensitivity to light. Turns out that this describes “classic migraine” (or migraine with aura) which about 40% of people with migraine have symptoms of. Much more common is migraine without aura, often called “common migraine.”

Because of this, getting the right diagnosis was difficult for me. My experience makes me want to tell everyone who has “sinus headaches” that they could have another kind of headache disorder. Since this is my blog, I will. Please consider that your headaches aren’t sinus-related.

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National Headache Foundation Answers Frequently Asked Questions

In one comprehensive page, the National Headache Foundation responds to common questions about migraine as well as tension-type, cluster, sinus, rebound headaches. The short answers include links to comprehensive information. Questions include:

  • Does weather affect migraines?
  • What are the triptans?
  • What alternative therapies are used to treat migraine?
  • What is biofeedback?
  • Are headaches hereditary?
  • What type of doctor should I see to diagnose and treat my headache?

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Children & Headaches

Nearly every child has a headache at some point. Like in adults, an occasional headache is normal. Although headaches are typically benign, they could signal something serious. If kids have headaches frequently or the headache seems different than usual, it’s time to see a doctor.

Contact a doctor if your child’s headaches:

  • Occur at least once a month
  • Keep him or her out of school
  • Follow an injury, such as a blow to the head
  • Awaken him or her from sleep
  • Feature persistent vomiting or visual changes
  • Are accompanied by fever, along with neck pain or stiffness

Causes of headaches in children include a genetic predisposition (especially to migraine), head trauma, illness and infection, environmental factors, emotional factors, and certain foods and beverages. See the Mayo Clinic article in the above link for details about these causes.

Information comes from the Mayo Clinic. See Headaches in Children: Common, But Sometimes Serious to learn about causes, types of headaches, diagnosis and treatment. The National Headache Foundation also has a guide to children’s headaches, which even has a section for kids to explore.

Your child having headaches isn’t a reason to panic, but it isn’t something to ignore.