A very painful and disabling condition, migraine affects all genders and ages. Since it is recognized as a widespread ailment by medical experts, why is it so tremendously under-diagnosed?
“Of people with migraine in population studies, only about half of the people with migraine have ever been told by a healthcare professional that they have migraine,” said Dr. Richard Lipton.
Lipton is an international expert in headache medicine and seven-time winner of excellence in headache research. He serves with distinction in numerous roles at the Albert Einstein College of Medicine.
There are certain factors that contribute to the under-diagnosing of migraine. Unfortunately, the first one relates to seeking medical advice.
“I think our biggest diagnostic challenge is either because people aren’t going to the doctor at all or because they’re seeking treatment in primary care settings and the diagnosis is simply not made,” Lipton said.
He noted that many people treat themselves with over-the-counter medications very successfully. “Whether you know you have migraine or not, if you’re taking Excedrin or ibuprofen and it rapidly relieves your pain, and you’re not taking it too often, I think that’s okay,” Lipton said.
The biggest problem is that, “A lot of people with undiagnosed migraine don’t have effective treatments and they have high levels of unmet needs,” he said. “Migraine is so common and so disabling.” Seeking a proper diagnosis and treatment plan is critical.
Lipton said, “We know migraine with aura is a risk factor for stroke.”
Migraine with aura is defined by the International Classification of Headache Disorders (third edition), as “Recurrent attacks, lasting minutes, of unilateral fully-reversible visual, sensory or other central nervous system symptoms that usually develop gradually and are usually followed by headache and associated migraine symptoms.” Aura symptoms can include: visual, sensory, motor, retinal, speech, more.
“Preventive medications reduce the frequency of migraine attacks, including attacks of migraine with aura,” said Lipton, who speculates that “effectively managing migraine with aura and reducing the attack frequency could reduce the risk of stroke and the risk of cognitive decline” in one’s lifespan.
While migraine is three times more common in women than men, Lipton said cluster headache “is more common in men than in women.”
Headache medicine involves many conditions and is indeed a complex practice area. If migraine is ineffectively diagnosed, one can only imagine how they would find out they have a different, but significant disorder.
Given the expansive research Lipton has been involved in, along with his solid clinical experience, there are certain conditions that he feels are even more under-diagnosed and under-represented in headache medicine.
“My favorite condition to diagnose is a condition called Hemicrania Continua,” he said.
This condition presents as “continuous one-sided headaches that wax and wane in severity.”
“During severe exacerbations, people often get drooping of the eyelid, or redness or tearing of the eye, or nasal stuffiness,” Lipton said. In addition “to the cluster-like features, [patients] can also have nausea and sensitivity to light and sound.”
Lipton explained that Hemicrania Continua “is sometimes misdiagnosed as migraine; or if the doctor only focuses on the severe exacerbations with drooping of the eyelid or tearing, that condition is sometimes misdiagnosed as cluster headache.”
His passion of diagnosing Hemicrania Continua is based on the positive outcome and improvement in health for the patient, as the condition “responds quite brilliantly to Indomethacin and nothing else.”
Having a neurologist identify the cause of something so debilitating like Hemicrania Continua, and be able to quickly remedy/control it, would be life-changing.
With headache medicine having such broad scope, “Most often [Hemicrania Continua] is mistaken for chronic migraine,” Lipton said.
This condition, while less known, is notably prevalent as, “In adults of everyone who presents with a primary headache disorder with 15 or more headache days a month, it’s about 15% of those patients.”
An example of a significant condition of which awareness appears to be minimal, Lipton said, “It’s not rare.”
In his practice, if Lipton thinks a patient has “Hemicrania Continua and they have spent years with a migraine or cluster diagnosis, I can give them a two-week trial of Indomethacin and either change their life, which is so wonderful, or find out I’m wrong and move on to try something else” to improve their health.
He said he commonly sees patients “with really difficult-to-treat chronic migraine,” and what is satisfying for him is “making the [proper] diagnosis.”
Another set of conditions in headache medicine Lipton is passionate about are under the family of trigeminal autonomic cephalalgias, and called “Paroxysmal hemicrania: Episodic and Paroxysmal hemicrania.”
He informed that these disorders “are more common in women than men, and the headaches are much shorter than cluster headache.” They commonly range from five to twenty-minutes in duration, and on occasion, 30 minutes or longer.
In his practice he said, “If I see a woman with cluster headache, I always ask myself could this be Paroxysmal hemicrania?”
“The pain is agonizing and those disorders don’t respond to cluster therapy, but [like Hemicrania Continua] respond to Indomethacin,” he noted.
Lipton’s experiences with patients have included various scenarios.
“Often times before I’ve seen [a patient], they’ve seen very good [doctors] who have tried really appropriate medicines and then I have to work very hard to be helpful, which of course I’m very happy to do; but it’s so much fun to diagnose diagnostic errors and then be pretty confident that I’m going to make a big difference without putting them through multiple therapeutic trials and without struggling myself to find the combination that works for the patient in front of me.”
When looking at medical conditions, we must recognize the prevalence of migraine in our society. According to The American Headache Society: One in four homes are impacted by migraine.*
On a global level, one billion individuals suffer from migraine, and one in 11 children experience migraine.*
Now understanding how far behind the primary care sector can be in assigning a migraine diagnosis, do we assume those statistics only represent half of the cases out there? While statistics are calculated with the best data available at the time, we are learning that this highly painful, debilitating condition is more prevalent than we would have ever guessed.
To find a top-notch specialist like Lipton is a joy. He is not only eager to solve complicated headache conditions, but is also actively engaged in research studies focusing on cognitive function. He is the principal investigator of the Einstein Aging Study, through which significant findings have been made as to the relationship between chronic pain, stress, illness and early decline in cognitive function.
For those who know someone that suffers from recurring headaches, please share this information and encourage them to seek answers.
Dr. Richard Lipton is the Edwin S. Lowe Professor and Vice Chair of Neurology, Professor of Epidemiology and Population Health, and Professor of Psychiatry and Behavioral Science at the Albert Einstein College of Medicine.
He is a highly-respected headache researcher who focuses on migraine and a five-time winner of the H.G. Wolff Award for excellence in headache research from the American Headache Society and a two-time winner of the Enrico Greppi Award from the European Headache Foundation.
Dr. Lipton is the Chair of the Scientific Advisory Board at Biohaven Pharmaceuticals and a past president of the American Headache Society.
*https://americanheadachesociety.org/wp-content/uploads/2019/03/GENERALMIGRIANE_11x14.pdf
Watch for another article featuring Dr. Lipton in the “Migraine ‘rollercoaster’ may stop with Biohaven’s new drug” installment on thehonestmigraine.com.
If you experience debilitating headaches I highly suggest setting a consult with a respected neurologist in your area.
Coming next: Moving forward is not starting over