Common Questions the Public Has About Migraine
The public wants to hear narratives of personal experience coping with migraine.
Many want to know what kind of doctor they should see if they think they might suffer from migraine.
Employers may be concerned about the accumulating missed work by employees with migraine.
A couple of nights ago, I gave a book reading and discussion around my anthology on migraine and literature, focusing on the five themes around which the book is organized:
Woman in Middle of of Migraine Pain
The Experience Itself
The Invisibility of the Disease
It’s Just a Headache?
It’s a Full-Time, Lifelong Job
When It’s Gone
I presented with my physical therapist, Jenni Tuller, who, for the past 15 years, has worked almost exclusively with chronic migraine patients.
After the presentation and reading, we opened up to questions from the general audience. What I found interesting and significant were the kinds of questions asked. For the most part, the attendees were not people suffering from migraine; they were friends and family of those who do. Some of the questions were:
For Jenni, the physical therapist/owner of Physical Therapy Services of Rochester:
What type of treatment do you offer those with migraine?
How do you know if you can be helpful to each patient who comes to you?
How helpful do you think the new treatments are?
How many patients do you treat for migraine?
For me:
You mention you are a chronic migraineur: what does that mean?
When did you get your first migraine, and are you getting a lot fewer now with the newer treatments?
What do you do if you are an employer, and you have an otherwise good employee who misses a fair amount of work due to migraine?
What kind of doctor do you see first?
What if someone can’t get into a headache specialist?
What kinds of support can I offer my friend who suffers from migraine?
As a patient and professor of literature, I obviously deferred certain questions to Jenni and also to Dr. Joseph Mann, my retired headache specialist, who remains very active in the migraine studies for the Rochester Clinical Research Program in Rochester, New York, and who was in the audience.
In responding to the number of questions directed to Jenni, she shared the three components of migraine:
Mechanical
Environmental
Chemical
In terms of her expertise, she offers hands-on mechanical work of the cervical pathways, assists with postural positions and advice for computer work, and provides exercises that patients should be doing several times a day, particularly if they are working in a sedentary position, in front of a computer.
While she employees several other physical therapists in her practice, she has, for the past 15 years, worked primarily with migraine patients (about 85%). She also acknowledged that the new treatments that started coming out in 2018, primarily the CGRPs, have had dramatic results, but pointed out, too, that they do not work for every patient, and take some trial and error—that they work sometimes but not always.
I was able to use my own experience in responding to the question regarding what doctor to first see if you believe you may suffer from migraine. I’ve written in an earlier post for Psychology Today about the shortage of headache specialists and the tremendous need (“Having Trouble Finding a Certified Headache Specialist? You are not alone; too few doctors are specializing in headache/migraine.” posted Apr 13, 2021).
The question one audience member asked about being an employer to an otherwise excellent worker but one who misses more and more work because of her migraine was one I had no direct experience with, but it generated productive discussion.
Other questions
Some points raised by others included:
Colleagues start to question the validity of the absence.
Others must pick up for that colleague, and what is the solution?
What are the rights for the sufferer and for the employer (obviously one I couldn’t answer)?
These are muddy waters and complex issues we need to do more to address.
I was asked about my own experience of migraine and whether I now had fewer than when younger. I spoke to the cyclical and sometimes intractable nature of this illness, my peaks and valleys over decades of coping with this insidious disease, and attempted to show through the works by poets, essayists, and novelists the complexity, individuality, and constant presence (even if it’s a good day but you are fearing the next attack) that migraine is.
In terms of offering support to a loved one with migraine, I suggested many were doing that just by showing up for the reading and trying to be more educated about what migraine really is and what it isn't (just a bad headache) and added that because there are so many triggers and complex symptoms with migraine, to really listen to what their loved one is experiencing and know this is part of the disease.
I closed by acknowledging my blessing in having had for many years a wonderful team of medical professionals as well as a loving and supportive network of family and friends, recognizing that this is not the case for many, who must bear those additional struggles.
"Dear Migraine" (excerpt):
…I’ve given up trying to outsmart you,
and the new thinking says I didn’t invent you—
whatever you were to me I’ve outgrown,
I don’t need you, but you’re tenacity embodied,
tightening my skull, my temple, like plastic wrap.
Many times, I’ve traveled to a dry climate
that wouldn’t pander to you, as if the great map
of America’s deserts held the key to a pain-free future,
but you were an encroaching line in the sand,
then you were the sand. We’ve spent the best years
of my life intertwined: wherever I land
you entrap me… (Mazur lines11-22).