Have you ever been told that you have “complex” or “complicated” migraine? Many often wonder what is meant by these terms. After all, you won’t find either listed in the International Classification of Headache Disorders. They’re not in the ICD-10 either. How can a doctor give a diagnosis that doesn’t even exist?
In a recent conversation with headache specialist, Dr. Jason Rosenberg, he shared this insight, “There are complicated patients and confused physicians, but not complicated migraine.” He went on to state that in complicated cases, sometimes the problem turns out to be something else, and not migraine at all. To brush a patient off as “complicated” without actually trying to determine the problem and offer an accurate diagnosis is a tragedy. It leads to improper treatment which can prolong a patient’s suffering and possibly lead to a worsening of the underlying condition.
The diagnosis reveals a doctor’s qualifications
Some doctors will use these terms when either aura or stroke-like symptoms are present. Yet even that isn’t enough because there are at least 7 or 8 different migraine diagnoses that present with some symptoms that can be considered an aura or “stroke-like.” When doctors use these descriptive terms instead of offering an actual diagnosis, it tells me a few things.
- This doctor is probably not a board-certified headache specialist.
- He or she has not stayed current on the latest information about the diagnosis and treatment of migraine or other headache disorders.
- I wonder why the doctor chooses to use such an outdated description rather than honestly tell the patient that he or she does not know enough to offer a proper diagnosis
- I question the ability of the doctor to properly treat the problem if he or she can’t get the diagnosis correct in the first place.
- If it’s my doctor, he or she just got fired. Do you think I’m kidding? No, I really have fired neurologists who claimed to be headache specialists because they gave me a diagnosis of “complex” migraine.
Patients deserve better.
An accurate diagnosis is absolutely necessary. It sets the foundation for treatment. Without the right diagnosis, how can you possibly expect to get the right treatment? Hemiplegic migraine is treated differently than migraine with aura or migraine with brainstem aura. Any one of those migraine diagnoses can be labeled “complex” or “complicated” by healthcare professionals who are not truly qualified to treat headache disorders.
Available migraine diagnoses
The International Classification of Headache Disorders is the diagnostic manual used by headache specialists to diagnose headache disorders, including migraine. The diagnostic codes in the ICD-10 are based on those listed in this manual. Nowhere in either manual will you find any code for “complex” or “complicated” migraine. It simply does not exist.
Take a look at the official list of migraine diagnoses.
- Migraine without aura
- Migraine with aura
- Migraine with aura without headache
- Migraine with brainstem aura
- Familial hemiplegic migraine type 1 (mutation in CACNA1A gene)
- Familial hemiplegic migraine type 2 (mutation in ATP1A2 gene)
- Familial hemiplegic migraine type 3 (mutation in SCN1A gene)
- Familial hemiplegic migraine, other loci
- Sporadic hemiplegic migraine
- Retinal migraine
- Chronic migraine
- Probable migraine without aura
- Probable migraine with aura
Have you been diagnosed with “complex” or “complicated” migraine?
You deserve to have an accurate diagnosis. Ask your doctor what he or she means by these terms. Get familiar with the diagnostic options in the ICHD-3. Question why you were not given an appropriate diagnosis. If necessary, ask for a second opinion, and a third or fourth if that’s what it takes. A qualified headache specialist can certainly offer you a diagnosis that falls within the established options. Please, don’t accept outdated or descriptive terms in lieu of a true diagnosis.