News & Research

Life with migraine in patients’ own words

Online, it’s easy to find people sharing what it’s like to life with migraine and the impact it has on their lives. Take a look at medical literature and patients’ experiences are scarce. In part, that’s by design—medical research largely looks at the pathophysiology and treatment options for an illness rather than focusing on patients’ experiences—but it’s also incomplete. How can health care providers know how to best treat people with migraine if they don’t understand the experience of living with the condition?

There are excellent studies based on surveys of patients responding to questions about life with migraine. That’s how we know the level of disability people experience during migraine attacks, the impact of migraine on the family, and the degree of stigma patients experience, for example. They provide insight, but not in the patients’ own words.

Which is why I was thrilled to find Learning the Full Impact of Migraine Through Patients Voices: A Qualitative Study, published in the July/August 2021 issue of the journal Headache. It shares the experience of living with migraine as told through the stories of people with migraine.

This is significant research because it moves patients stories out of the realm of anecdote and turns them into data with a fairly large number of participants. The idea of stories becoming data may seem off-putting, but it’s incredibly useful for painting a broader picture of life with migraine. Health care providers are trained in science. While the best providers take anecdotes into account when treating patients, they still rely heavily on data. This study provides data in patients’ own words.

The themes that emerged resonate deeply with my experience of migraine and the experiences of others that I’ve heard over 16 years of advocacy work. The six themes and their subthemes are:

Overall negative impact on life:

  • Migraine controls life
  • Migraine makes life more difficult
  • Migraine attacks are disabling
  • Lack of control over migraine attacks
  • Pushing through migraine attacks

Migraine’s impact on emotional health:

  • Isolation
  • Anxiety
  • Frustration/anger
  • Guilt
  • Mood changes/irritability
  • Depression/hopelessness

Migraine’s impact on cognitive function:

  • Trouble concentrating
  • Difficulty communicating

Migraine’s impact on specific parts of life:

  • Work/career (which results in guilt, change of job status, presenteeism, financial impact, school impact)
  • Family life (which results in frustration, guilt, disrupted time)
  • Social life (which results in irritability, altered plans, communication issues)

Fear and avoidance:

  • Assuming the worst scenario for attacks
  • Fearing future attacks
  • Avoiding things to try to avoid a migraine attack


  • Externalized
  • Internalized

Patients stories were gathered as part of research on mindfulness-based stress reduction for migraine. The original intent wasn’t to tell the stories of patients, but to capture patients’ experiences during the research. So they weren’t asked generally about how migraine impacted their emotional wellbeing, but were asked if the intervention being tested in the research impacted their emotional wellbeing. That’s not a flaw, but an exciting opportunity for future research. From years of listening to people with migraine tell their stories, I expect that direct questions would show migraine’s impact on quality of life is even greater than these researchers found.

What do you think? Do these themes resonate with you? Are there other themes you think should be included?

Photo by Mikel Parera on Unsplash

Migraine World Summit
Chronic Migraine, News & Research, Patient Education

Migraine World Summit Starts Wednesday, March 17

The 2021 Migraine World Summit will be March 17–25, 2021. The online virtual summit will include videos from 32 experts, including headache specialists and health care providers, that address new treatments, research, and ways to improve migraine and chronic headache disorders.

Click here to register for the free 2021 Migraine World Summit.

The summit is free from March 17-25 and a new set of videos is available each day. You can also purchase access to watch the videos after the summit is over and other helpful materials.

Each day of the summit, you’ll receive an email with a link to that day’s sessions. They are free to access for 24-hours starting at 3 p.m. Eastern time.

This year’s speakers will talk about:

  • Latest strategies for managing chronic migraine
  • The cause and symptoms of migraine
  • Prevention
  • Why there is no cure for migraine
  • Weather triggers
  • Yoga
  • Medications that can worsen migraine
  • The link between migraine and autoimmune diseases
  • Managing migraine and comorbidities
News & Research, Treatment

SpringTMS, sTMS mini no longer available?

The maker of SpringTMS and sTMS mini, eNeura, filed for Chapter 7 bankruptcy on Friday, August 7. In Chapter 7 bankruptcy, companies liquidate their assets, so this doesn’t look good for short-term access to SpringTMS. I don’t know anything for certain, though—all the information I have is the bankruptcy filing and that eNeura’s customer service is not responding “due to unforeseen circumstances,” as the auto replies say. Despite this, their website is still active.

That’s unfortunately all I can say for certain right now. I have industry contacts keeping an eye out for the SpringTMS to become available to patients again, whether from eNeura or another company that purchases the technology.

I’m sorry to share such bad news. My heart hurts for everyone who relies n these devices for migraine management and wish I had more information for you. I’ll keep you posted if I learn anything new.

News & Research, Treatment

gammaCore for Migraine Received FDA Approval!

The gammaCore is an external vagus nerve stimulator that can be used to treat migraine and cluster headache. It received FDA approval for cluster headache last summer and was approved for migraine today.

It’s also the new treatment I’ve been using since June 2016 and haven’t been able to tell you about it.

Here’s a bit more information:

I’m traveling for work right now and working on my phone is killing my neck, so that’s all I have for you today. Now that I can spill the beans, I’m super excited to share more and will as soon as I can.  I’ll also have a video up on soon and will link to it when it’s available.



News & Research, Treatment

CGRP Drug for Chronic Migraine: Very Promising Study Results

cgrp-drug-for-chronic-migraineAmgen’s CGRP drug provided significant relief to participants with chronic migraine, according to new study results presented at an international conference in mid-September. The drug, called erenumab, was tested at two doses, 70 mg and 140 mg. “Both doses of erenumab were associated with significant improvements in health-related quality of life, headache impact, disability, and level of pain interference, compared to placebo,” according to Amgen’s press release announcing the study’s results.

Here’s a brief summary of the study’s details and it’s findings.

In the 12-week study, 667 participants were given monthly injections of either the drug, called erenumab, or a placebo. The breakdown was:

  • 191 participants received 70 mg erenumab
  • 190 participants received 140 mg erenumab
  • 286 were injected with the placebo

All participants had chronic migraine. At the start of the study, they had an average of 18 migraine days per month and 21.1 headache days each month. The following outcomes were assessed during the last four weeks of the study.

  • Reduction in migraine days per month: Those who were given erenumab (at either dose) had an average of 6.6 fewer migraine days a month.
  • 50% or greater reduction in the number of migraine days per month: 40% of participants who received the drug at 70 mg and 41% who got 140 mg had their number of headache days decreased by at least half.
  • Reduction in use of acute migraine drugs (abortives): Participants who received 70 mg of erenumab took abortives on 3.5 fewer days; those who received 140 mg reduced their medication use by 4.1 days.
  • Reduction in headache hours: Participants who received 70 mg of erenumab had 64.8 fewer headache hours in the month; those who received 140 mg of erenumab had 74.5 fewer headache hours.

Side effects

No adverse effect was reported in more than 5% of the participants. Those reported were:

  • Injection site pain: 3.7% in participants who received the active drug at either dose; 1.1% placebo
  • Upper respiratory tract infection: 2.6% at 70 mg; 3.7% at 140 mg; 1.4% placebo
  • Nausea: 2.1% 70 mg; 3.2% 140 mg; 2.5% placebo

This yet is another promising report on the CGRP drugs that are in development for migraine prevention. All studies so far have found a notable reduction in migraine frequency and improvement in health-related quality of life for a significant portion of participants. Minimal side effects have been reported thus far. This was a Phase 2 study. Phase 3 studies, which are underway now, will include more participants and give us more information on side effects.

(Amgen has also issued a press release about the first CGRP drug Phase 3 results I’ve seen. Participants in the study had between four and 14 migraine days a month. Those given erenumab had an average of 2.9 fewer migraine days per month. With such a wide range in migraine frequency, it’s hard to tell how impressive that number is. But even for someone with 14 migraine days a month, the average would mean about 20% fewer migraine days.)