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The spectrum of migraine: Barriers to our care - Gaps in diagnosis, treatment and knowledge of individuals with CM in the US


"Awareness is the greatest agent for change." - Eckhart Tolle

Migraine is a debilitating neurological disease characterized by migraine attacks that are divided into episodic (EM) and chronic (CM) by the number of headache days (EM</= 15 days per month, CM>/= 15 days per month). The disease affects about 38-39 million of us in the US. 

We need to be aware that as our attacks increase in frequency, so do a host of other problems that can complicate our treatment and contribute to our headache-related disability. In an effort to help us have a better understanding of the challenges we may face and offer suggestions on ways to overcome these burdens and receive optimal care, this article addresses: 

  • the spectrum of migraine and associated characteristics, and
  • results of a new (CaMEO) study: gaps in diagnosis, treatment, and knowledge of individuals with chronic migraine. 


To begin with, let's review what happens as we progress from episodic to chronic migraine in relation to our diagnosis; comorbidities; sociodemographic, disability, and employment characteristics; and, risk factors for progression of episodic to chronic migraine (CM).


In a study that estimated remission rates of subjects with CM, identified predictors of CM remission, and assessed the influence of remission on headache-related disability, (Manack, Buse et al, 2011), our migraines were classified as follows: 

  • Episodic migraine (EM) includes a range of attack frequency with headache days 0-14 per month. If we have headache days 0-9 days per month, we are believed to have low-frequency EM (LFEM). If our headache days occur 10-14 days per month, we have high frequency EM (HFEM). 
  • CM is defined by attack frequency with headache days greater than 15 days per month.

Comorbidities and Sociodemographic, Disability, and Employment Characteristics  

We need to be aware that, as we progress along the spectrum from LFEM to CM:

  • our comorbidities (obesity, heart disease, angina, high cholesterol, high blood pressure, stroke, circulation problems, arthritis, chronic pain disorders, pulmonary disorders, anxiety and depression) and our individual, family, and societal burdens increase.
  • some psychiatric comorbidities, including depression, are associated with worsening disease progression and disease outcomes, including suicide attempts (possible these comorbidities may be related to shared biological, environmental or genetic risk factors), (Buse, Silberstein et al, 2013).  
  • people with HFEM are thought to share characteristics similar to CM.
  • people with CM are significantly more disabled than those who have EM, have higher levels of unemployment, lower personal and household incomes, increased psychiatric and medical comorbidities, and have a greater impaired quality of life both inside and outside the home (Lipton, Serrano, et al, 2014).
  • studies have shown that each year about 2.5% of those of us with EM develop CM.

That said, returning to the study by Manack and Buse, results showed:

  • CM remitted to EM at a 2-year transition rate of 26%.
  • patients with allodynia ( neurons are abnormally excited leading to a reduced pain threshold and hypersensitivity to stimuli); highest frequency of migraines (25-31 days); and, those using preventive medications were less likely to remit (authors mention preventive medications may also increase remission rates but in the study the effects may have been offset by factors like high headache frequency, wrong medication or dose, and poor compliance with regimen).  
  • persistent CM demonstrated increases in headache related disability.
  • remitted CM demonstrated decreases in headache related disability.  

Given this information, it would seem that, as the study authors propose, an accurate diagnosis is necessary to determine where, as individuals, we fit in the migraine spectrum. Once our position is established, the goal of our treatment can be directed toward reducing attack frequency so that:

  • LFEM does not progress to HFEM or CM
  • CM remits to EM.

Risk factors for progression of EM to CM

In line with this approach, a review defining the differences between EM and CM, (Katsarava, Buse, et al, 2011), outlined non-modifiable and modifiable factors that are believed to increase our risk of progression from EM to CM. This is important for us to know because once we identify our personal risk factors, we are able to work with our doctor to improve or eliminate our modifiable ones, decrease the frequency of our attacks and, if we have CM, increase our chances for remission.

Non-modifiable risk factors are reported as:

  • age,
  • female sex,
  • Caucasian race,
  • low education level,
  • low socioeconomic status, and
  • head injury.

Modifiable risk factors are listed as:

  • obesity,*
  • depression,*
  • anxiety,
  • sleep disorders like snoring and sleep apnea
  • other chronic pain disorders,*
  • stressful life events,
  • medication overuse, and
  • caffeine use/misuse.

*As mentioned above, these risk factors may be comorbid with migraine. Here, it is beneficial for us to know that along with directing treatment towards our personal comorbidities and individual risk factors, preventive pharmacological and non-pharmacological treatments and strategies have been shown to help decrease the frequency of our attacks.  


Now, let's look at CM. About 3-7 million people in the US are believed to live with CM. In an effort to bring more awareness to the individual, society and the health care systems about the burden of CM, a recent study (CaMEO) examined self-reported headache diagnosis rates, health care consultation patterns, and knowledge and use of preventive treatments among a large, US population-based sample of individuals with CM (Buse, Lipton et al, 2014).

Gaps in diagnosis, treatment and knowledge

In this instance, headache types were classified as migraine, CM/transformed migraine (TM), or CM/TM/chronic daily headache (CDH). Results demonstrated:

  • rates of headache subtype diagnosis and consultation for headache were low among individuals with CM (most CM respondents did not receive a diagnosis of CM, even among those consulting  "headache specialists"). This is a barrier to care as diagnosis is necessary for designing an optimal treatment plan, which may include diagnosis-specific treatments.
  • those meeting CM criteria who did seek care from a "headache specialist" were more likely to report being diagnosed with CM, but also with migraine, TM and CDH.
  • awareness of daily preventive medication for headache was high, especially among those currently seeing a "headache specialist", although awareness of injection was low in the same group, and even lower among those who reported they were not under the care of a "headache specialist".
  • knowledge and use of empirically and guideline-supported non-pharmacological treatments for migraine prevention was low among those under the care of a "headache specialist" and very low among those not under the care of a "headache specialist".

Awareness of preventive treatments and strategies among all respondents with CM was as follows:

  • avoiding things or activities that trigger my headaches - 62.7%
  • taking a daily prescription medication - 53.0%
  • receiving injections every few months - 17.4%
  • vitamins or herbs - 33.5%
  • biofeedback - 16.8%
  • relaxation techniques (meditation, visual imagery, diaphragmatic breathing) - 47.5%
  • cognitive behavioral therapy (CBT)/psychotherapy - 12.9%
  • acupuncture - 33.5%
  • yoga - 29.2%
  • exercise - 48.8%
  • weight management/dieting 34.6%
  • not aware of any ways to prevent headaches or reduce their severity - 17.9%
  • don't remember - 1.9% 

The authors conclude these data demonstrate gaps in the diagnosis, treatment, and knowledge of individuals with CM in the US and offer opportunities for improvement in care.

Opportunities for improvement in care

"The natural healing force within each of us is the greatest force in getting well." - Hippocrates

Another finding in the CaMEO study showed more respondents who were under the care of a "headache specialist" consulted a "nonprescribing" health care professional for a headache than those who were not under such care. These "nonprescribing" health care professionals included: chiropractors, massage therapists, acupuncturists, physical therapists, psychologists or other health care professionals, naturopaths, and occupational therapists.

A recent article addressed the use of complementary alternative medicine, "CAM in the Real World: You May Practice Evidence-Based Medicine, But Your Patients Don't," (Cowan, 2014). The author suggests "that until such time as the body of scientific literature adequately addresses non-conventional approaches, physicians must acknowledge and understand, as best as possible, CAM approaches which are in common use by patients." 

Given this information, it is important to know that even though more research is necessary to establish evidence-based guidelines for some non-pharmacological therapies, many of us use these treatments and strategies because along with quieting our minds, calming our bodies, combating feelings of hopelessness and despair, and decreasing the frequency and severity of our attacks, they give us a feeling of empowerment. As well, because medications alone do not work for a number of us and lead to medication overuse headaches,  (MOHs) they give us a viable option for therapy.  

3 ways to help us overcome barriers to care are: 

  • receive an accurate diagnosis within the migraine spectrum, including CM,
  • work with our doctors and other health care professionals to identify and manage our comorbidities and risk factors, and
  • as research continues to unfold, increase our knowledge as we share and explore pharmacological and non-pharmacological treatment options with our doctors and other health care professionals to improve our care.

For me, effective communication with my doctor facilitated my diagnosis of CM and MOHs. And, even though they were foreign to me at the time, non-pharmacological therapies like biofeedback, acupuncture, meditation, diaphragmatic breathing, and healing touch, became instrumental in my remittance to EM. As well, along with trigger management, regular exercise, and a healthy diet and lifestyle habits, they continue to be the foundation of my remission.


Cowan, R.P., M.D., F.A.H.S., F.A.A.N. (2014). "CAM in the Real World: You May Practice Evidence-Based Medicine, But Your Patients Don't." Headache Currents.  April, 25. DOI: 10.1111/head.12364.

Buse, D., C., Lipton, R., et al (2014). "Barriers to Chronic Migraine Care: Results of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study" Neurology. April 8, 2014 vol. 82 no. 10 Supplement I9-1.004.

Buse, D., C., Lipton, R., et al (2014). "Barriers to Chronic Migraine Care: Results of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study." Poster presented at the 66th annual Academy of Neurology Annual Scientific Meeting. Philadedelphia, PA. April 26- May 3.

Buse, D., C., Silberstein, S., D., et al. (2013). "Psychiatric comorbidities of episodic and chronic migraine." J Neurol.  Aug;260(8):1960-9. DOI 10.1007/s00415-012-6725-x.

Lipton, R., Serrano, D., et al. (2014). "Sociodemographic, Disability, and Employment Differences Between Persons With Chronic and Episodic Migraine: Results of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study". Neurology. April 8, 2014 vol. 82 no.10 Supplement S41.002.

Katsarava, Z., Buse, D.C., et al. (2012). "Defining the Differences Between Episodic Migraine and Chronic Migraine." Curr Pain Headache Rep. February; 16(1): 86-92.

Manack, A., Buse, D.C., et al. ( 2011). "Rates, predictors and consequences of remission from chronic migraine to episodic migraine." Neurology.  Feb 22;76(8):711-8. doi: 10.1212/WNL.0b013e31820d8af2.

Sharron Murray MS, RN is an author and coauthor CaMEO Study, "Life With Migraine". Currently, Sharron is active in the migraine community as a writer, advocate, American Migraine Foundation Partner, moderator for the American Migraine Foundation "Move Against Migraine" Facebook Group, and member of the National Headache Foundation Patient Leadership Council. 

Follow Sharron on twitter @murraysharron, her Facebook page: Sharron Murray, MS, RN

This article is not intended as a substitute for medical advice. If you have specific concerns about your health or nutrition, please contact a qualified professional. 

Copyright 2014  Sharron E. Murray

Updated February, 2019

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