U.S. HEADACHE ASSOCIATION
Almost 1 in 5 women and about 1 in 20 men get Migraine.
About half of the people with Migraine have never seen a doctor for their condition to get a proper diagnosis. They do not realize their headaches are migraines, and they have been desensitized by ever-present adds for analgesics that headaches are just part of the human condition. Of the other half of patients who do see a doctor, half of them are misdiagnosed. The most common misdiagnosis is sinus headache. So, only about 25% of patients who have migraine have been diagnosed. 75% are out there not knowing that there are treatments that can help them.
It is a misconception that Migraine is a "really bad headache". Actually, patient experiences vary in terms of Frequency, Intensity, Duration and exact Symptoms (F.I.D.S). The most common differentiation is related to frequency. Chronic Migraine Patients are those with at least 15 headache days per month, or at least 8 headaches days per month associated with Migraine. For them, Migraine is like a constant companion. Episodic Migraine is when patients get a Migraine periodically. It may be once a week, once a month, twice a year, and the like. Regardless if Chronic or Episodic, their pain may be mild, moderate or severe. We often use a 5 or 10 point scale. They may last anywhere from hours to days. Symptoms may include head and neck pain, nausea, vomiting, diarrhea, sensitivity to light, noise, smells and touch, visual symptoms, called Aura, and other symptoms. But, not every symptom is experienced by every patient. And, while most patients have a "typical" migraine pattern, they can vary from one migraine to the next.
Migraine affects men and women, adults and teens, even children. Both internal and external forces affect Migraine patients. Some of the external forces include: Foods, Medications, Hydration, Weather, Biological Weather (TM), Microbial Exposure, Pollution, Heat, Cold, Injuries and other factors. Some of the internal forces include: Inflammation Responses, Allergies / Histamine Responses, Cellular Metabolism, Metabolite Elimination, Blood Pressure, Arthritis, Genetic Predispositions, Stress, Sleep Quality and other factors.
Migraine and other Headaches are among the top causes of disability. Estimates range from them being the 6th leading cause of disability to them being in the top 10 to top 20 causes of disability. Of course, we usually think of work disability, but during a moderate to severe migraine, often, neither work nor social activities are realistically feasible for the migraine patient.
Migraine is often a lifelong condition, meaning that most Migraine patients will be contending with Migraine from the time that they first begin getting Migraines for the remainder of their lives. Some patients have reported cessation of Migraine. It is unclear how often patients "outgrow" the condition, especially with such high rates of misdiagnosis and so many not diagnosed.
While we are admittedly generalizing, it has been our experience that many doctors are not especially excited to treat migraine patients. Truthfully, migraine can be very difficult to treat. Migraine patients differ from other patients in that, long term, with the treatments currently available, they can really never be cured. It is understandable why some doctors might find treating Migraine patients frustrating work. The struggle with treating migraine can last for years. It is a process of trial and error with different drug combinations for both prevention and treatment. The portfolio of drugs include: NSAIDS, anti-seizure, antihistamines, decongestants, antidepressants, blood pressure meds, triptans (vasoconstrictors) and others, as well as the most recently added anti-CGRP drugs (Calcitonin Gene-Related Peptides). While doctors get the gratification of curing many other kinds of illnesses, most often, the best you can hope for in a Migraine patient is to reduce their Frequency, Intensity and Duration.
There are two approaches to migraine treatment, prevention and rescue medicines. Most patients utilize both approaches. Preventive medicines are used to reduce migraine frequency and intensity. Rescue meds are taken as soon as the patient realizes that a migraine is coming on to stop the migraine. Not all drugs work for every migraine patient, and migraine patients often report that a drug initially worked for them, but lost its effectiveness over time.
Only recently was a drug approved that was developed from its inception to treat chronic migraine, Aimovig, an anti-CGRP therapy. Prior to this, and still for all of the other portfolio of medications, migraine preventives and rescue meds were all originally developed for other conditions and subsequently found to also benefit migraine patients.
Migraine affects virtually all aspects of a patient's life: work and career decisions, school, sports participation, exercise, social opportunities, availability for work, friends and family, the patient's mood, their personality development and many other areas of life. While patients try not to be defined by their migraine, for many, it is a fixture in their life that will influence, shape and mold their life and life experiences for the remainder of their lifetime.
Despite the millions of people affected by Migraine and other Headaches, and all the complexities associated with treating these patient populations, NHO and Research dollars provided for Migraine and other Headaches is a tiny fraction, less than 0.1%, of what is given to other health causes, dwarfed by Heart, Cancer, Diabetes, Arthritis and others. The few headache non-profit organizations in the U.S., Europe and other parts of the world are very small organizations, starved for resources.
U.S. Headache Association is changing all that. We are making sense of this vast web of complexity, using the latest technologies for research and decision-making and taking advantage of our ability to organized vast and disparate people who make up our community of patients and related parties. We are especially excited about the latest developments in Artificial Intelligence. This is a key component of our fresh approach, which promises to yield an abundance of new insights, information which we can act upon to design new treatments, perhaps a true cure. We also disseminate information, and advocate with Industry and Government, again, based on the insights gleaned from mountains of data, not doing this in a test tube, but doing this with the participation of thousands of volunteers who opt-in to our community and all it has to offer.
Our promise is transformational innovation, which helps transform the lives of millions of migraine patients, not only in the U.S., but around the world. We need your help to realize the full potential our approach promises to yield. First, we need funding. So, step one is to donate. Then, for all those members of our community, we will have opportunities for you to participate in research that will teach you a tremendous amount about your own condition. And, by combining the data and anecdotal experiences of thousands of participants, the findings will be extraordinary, transformative. Please join us and take the first step to Donate, now!