Migraine Activism: How Do We Make People Care About Migraine?
By Kerrie Smyres | May 14, 2013
“Yoda is wrong. There is only try.” I posted this on my personal Facebook page with a link to my Migraine.com piece in the hope that some of my Star Wars-obsessed friends would be intrigued enough to read the post. I want people to understand that not everyone is healthy and limited by their own perceptions. That for some people, including me, a person most of my Facebook friends care about, trying really is all there is.
The next, unrelated status update in my Facebook feed read, “Are you avoiding talking about race because it makes you uncomfortable or because you just don’t care?” “Huh,” I thought, “I don’t talk about race because I don’t have the mental or emotional energy to do so.” Because I don’t face racism on a day-to-day basis and instead spend my life trying to manage a debilitating chronic illness, the topic doesn’t come up for me much. On the rare occasion I’m having an intellectual debate, race may be mentioned, but it isn’t part of my daily life (nor are intellectual debates these days).
Answered in the frame of my friend’s binary question, I don’t talk about race because I just don’t care. That is so not true.
Everyone has a “cause” they want other people care about, whether it is race, homophobia, autism, or migraine. Yet, every “target” of a movement or campaign has a finite amount of energy and attention. We care most about what has the greatest impact on our own lives. This isn’t selfish or uncompassionate, but a matter of allotting our limited resources to cope with this incredibly difficult task called life.
I want nothing more than for people to understand how severe migraine can be and the emotional and physical toll it can take. I want this not only for patients and their loved ones, but for society as a whole. My friend probably has similarly ambitious desires related to race. Yet, instead of energizing me to action, her comment left me feeling guilty because my daily struggle keeps me from pursing other important problems.
We can’t guilt people into action, nor can we force other people to take up the fight for an issue that doesn’t impact their daily lives. How, then, do we get non-migraineurs to care? This is an issue I discussed many times at the American Headache Society symposium in November and every conversation raised more questions than solutions. I’m working on a list of ideas, which I will share soon.
In the meantime, I want to hear from you: What do you do to help non-migrainuers understand the potential severity and debility of this illness? What other things could be done, whether by you, patients and their families, advocates, or headache specialists? How do we make people care about migraine?
Topics: Chronic Migraine, Community, Friends & Family, Society | 4 Comments »
So Much Work
By Kerrie Smyres | May 10, 2013
“I’ve already done so much work on listening to my body/not blaming myself for being sick/having self-compassion.” I’ve told my therapist some version of this countless times already even though I’ve only had three sessions with her. It sounds even to me like I’m seeking accolades, but that’s not my motivation. I’m protesting that I’ve already done so much work and now I’m being told all that isn’t enough.
I’m tempted to say I don’t have it in me to do more, but that’s not true. After surviving years of horrendous migraine attacks and depression, I believe I can make it through anything. Compared to those years, what the therapist is asking of me is craft time at day camp. But I didn’t know how hard those years would be until I was in them. This time I can see how hard I’m going to have to work and how emotionally and, possibly physically, painful it will be. I don’t wanna do it. Can’t I get credit for all I’ve already done? Maybe test out of some of the requirements?
Also, I have to admit to bring a little surprised that there’s more to be done after I’ve already come so far. In the words of the brilliant David Byrne, “I’m tired of traveling, I want to be somewhere.” I know life’s a journey, not a destination, but I thought I could hang out on the beach for a little while. Instead, I’ve discovered I’m not only at the wrong airport, I’m on the wrong continent.
I’m tired and sick and tired of being sick. I’ve done the impossible to get where I am right now, both physically and emotionally. And still it isn’t enough. How many more mountains do I have to move? And are any of the resulting avalanches going to bury me alive?
(And have I won a record for the number of metaphors crammed into one post?)
Topics: Chronic Migraine, Coping, Mental Health | 2 Comments »
“Do or do not. There is no try.”
By Kerrie Smyres | May 9, 2013
“Do or do not. There is no try.” How could this quote from Yoda, which apparently inspires the world, piss me off? Read about it in There Is Only Try on Migraine.com.
Topics: Chronic Migraine, Coping | No Comments »
Numbing to Difficult Emotions Through Migraine(?)
By Kerrie Smyres | May 8, 2013
Could migraine attacks be my body’s way of numbing itself to strong emotions? “What a load of crap” is my typical response when someone broaches this subject. And yet today I find myself working with my accidental therapist on this hypothesis.
Some important points I must address before continuing.
- Migraine is a neurological condition that is not caused by emotions, repressed or otherwise. If emotions play a role in my migraine attacks, they are a trigger, not a cause.
- An emotional component is unlikely to explain the frequency and severity of my migraine attacks, however it could explain one part of my migraine puzzle.
- If this hypothesis is true, it does not mean that everyone (or, in fact, ANYone) else has an emotional trigger for migraine.
OK, back to the story.
Two weeks ago my therapist noticed that I expressed no emotion when telling sad stories and said she thought I was shut down emotionally. I balked. I cry at everything, how could I be disconnected? A couple days later, I realized she was right. Somewhere in the last year or two, I stopped being devastated by world events. I thought I’d found a healthy way to cope. Coping? Yes. Healthy? Nope.
I’ve listened to enough Tara Brach and Pema Chödrön to know that the only way to deal with an emotion is to feel it. So, over the next few days, when I felt an emotion, I meditated. I didn’t think about the emotion (my usual strategy, in case you couldn’t tell from my writing), but just felt it. It was very scary, but did not devastate me.
When I saw my therapist last Thursday, she was so excited to see that I’d put the pieces together. I not only recognized I was shut down, but knew how to remedy the situation and had already begun doing what needed to be done. I left thinking that the wide world of emotions was right there, just waiting for me to feel. Talk about scary. Less than two hours after the appointment ended, the longest and most painful migraine I’ve had in months came on.
Yesterday I dragged myself to see the therapist despite the migraine that hadn’t abated since it hit on Thursday. As I sat in the waiting room, I marveled at how the pain was “only” a level 6 and yet I felt like I was going to die.
The therapist (remember, she’s also a naturopath) asked me about when the migraine attack started and if I’d encountered any potential triggers. Then she asked me to describe how I felt at that moment. Among other descriptors, I said it felt like there was a veil between me and the world, that I felt disconnected, physically numb.
Ding! Ding! Ding!
She laid it out for me: I’m a highly sensitive person in a culture (and family) that advocates pretending like difficult emotions don’t exist. I don’t have a toolkit for dealing with these emotions that (used to) overwhelm me. Some people numb their emotions with alcohol, food, or other addictions. Instead of making a conscious decision to disconnect, maybe my body forces numbness by triggering a migraine. The migraine that hit last week may have been my body saying, “Whoa! Slow down!” when my intellectual instinct was to dive into feeling emotions I’ve apparently been suppressing for a while.
When the therapist asked what I thought of all this, I said something along the lines of “Screw that bullshit.” But I was willing to keep an open mind and work with the idea.
The migraine lifted within two hours of the appointment’s end. No hangover or anything, just poof! migraine’s gone. (Though another came on a few hours later.)
I want to believe the magical disappearance of the migraine is a coincidence; yet I also want to believe there’s a connection. That maybe there is an emotional component to my chronic migraines I’ve never considered before. That by learning to feel emotions in a healthy way, maybe I can improve both my psychological and physical well-being.
I’m scared and excited and want to get going. The therapist sees the last migraine attack as a warning to go slowly. I’m not sure I agree, but having a raging migraine won’t help me move forward. The plan is to focus on one emotion at a time (this week’s is frustration) and, when it comes up, sit with it for only three minutes at a time before consciously distracting myself with something else. Looks like I’m also working on that elusive skill of patience.
What do you think? Does this sound like hogwash or a possibility? Have you found an emotional trigger for your migraine attacks?
Topics: Chronic Migraine, Coping, Mental Health, Triggers | 4 Comments »
Migraine Jinx
By Kerrie Smyres | May 7, 2013
“The attack is as bad as they get these days (knock on wood) and I’m completely wiped out. While the pain is only a level 4, I feel like my bones are made of wet dishrags and my mind is as muddled as the mint in a masterful mojito.” Ironic that I wrote those words Friday in a post about migraine superstitions. I’ve spent every moment since then in level 5 or 6 pain and with a brain fog so dense there’s no chance of describing it with cute (annoying?) alliteration. My rational mind knows there’s no connection between what I wrote and writing about migraine superstitions and having a migraine attack; my migraine mind suspects this is my reward for tempting fate.
Topics: Chronic Migraine, Coping | No Comments »
Delaying the Inevitable With Triptans (Yet Another Migraine Superstition)
By Kerrie Smyres | May 3, 2013
Do you ever feel like taking a triptan only delays the inevitable? After three days in a row in which I noticed major tooth sensitivity (my current reliable prodrome symptom) and taking naratriptan within 30 minutes of its onset, a migraine has walloped me upside the head (pun intended). The attack is as bad as they get these days (knock on wood) and I’m completely wiped out. While the pain is only a level 4, I feel like my bones are made of wet dishrags and my mind is as muddled as the mint in a masterful mojito.
As I understand the science, triptans do, in fact, abort migraine attacks and each subsequent attack is a separate entity. But as a chronic migraineur, it doesn’t seem like that’s happening. Instead, I wonder if I would have gotten this migraine attack out of the way if I’d not taken the naratriptan Tuesday (and Wednesday and Thursday). Forget the fact that the weather is changing today and that I haven’t slept well all week. And that The Doctors’ description of TheraSpecs was spot on and the TheraSpecs site had great traffic yesterday, thus relieving my anxiety and potentially triggering a “letdown migraine.” These don’t factor into my superstitions.
As I think myself in circles, I wonder how many headache specialists grasp the magnitude of the mental and emotional aspects of migraine. Even though they aren’t trained to help us deal with these components, they should be aware of how deeply migraine affects not only our physical state, but our mental and emotional well-being as well. If I ruled the world, every headache clinic would employ therapists who understand migraine’s reach and can equip migraineurs with a toolbox to manage the non-physical parts of migraine.
I write this from a mental fog, so please excuse me if this meandering post makes no sense. I think it contains at least one important nugget of information, but I won’t know for sure until I re-read it after this migraine passes.
Topics: Chronic Migraine, Coping, Doctors, Mental Health, Treatment | 11 Comments »
TheraSpecs Migraine Glasses Featured on TV Show The Doctors!
By Kerrie Smyres | May 2, 2013
TheraSpecs are featured on today’s episode of the TV show The Doctors! We’re so pleased they highlighted what makes TheraSpecs unique and mentioned that wearing regular sunglasses can worsen light sensitivity. You can watch for yourself:
I’m also glad that the entire segment on migraine has pretty good information. My main quibble is with the statement, “There are always certain foods for some people that will bring on migraines.” Not everyone has food triggers and those who do don’t always get a migraine attack after eating their trigger foods. Also, I believe the audience member’s question is why preventives that once worked stop working, but the response addresses overuse of painkillers and abortives. These issues seem more like unclear communication than inaccurate information. Not bad for covering a huge topic in only three-minutes.
Topics: Books & Products, Treatment, Triggers | 2 Comments »
American Headache & Migraine Association: New Patient Organization
By Kerrie Smyres | May 1, 2013
The American Headache & Migraine Association (AHMA), a new patient-centered organization for people with headache disorders, is now accepting members! Although the organization is in the early stages, it is already providing great opportunities for patients, including a free, daylong patient-focused conference in this November. The conference will feature presentations by some of the top physicians in headache medicine.
Here’s an overview from AHMA (I’ve done a little rearranging and highlighting):
Our goal in establishing AHMA is to: EASE the burden of migraine and other headache disorders, such as cluster and tension type headache and trigeminal and occipital neuralgia, through Education, Awareness, Support and Engagement.
PROGRAMMING
It’s important to everyone involved in AHMA leadership for our members to help direct the course of AHMA programming. By joining AHMA this early, you can have a strong influence on the direction of our efforts and ensure they help meet your needs and desires and those of the other members.
Right now the most significant programs/events we have in place are:
- A members-only support and information forum. It can only be accessed by joining AHMA. New members are sent the link and the password to access it upon joining.
- A free, members-only patient conference, which will be held on Sunday, November 24, 2013, in Scottsdale, Arizona (a suburb of Phoenix). We’re still hard at work planning the conference and finalizing details, but some of the most brilliant physician experts in the AHS have already volunteered to present on topics of special importance to Headache Disorders patients and their loved ones. We’re working hard to make the event as affordable as possible.
- AHMA has already started engaging in social media, so please like and follow us if you haven’t already:
- Twitter: Twitter.com/AHMAOrg
- Facebook: Facebook.com/AHMAorg
- AHMA Blog: AHMABlog.com
MEMBERSHIP/DUES
Membership dues are reasonable. The membership types and respective dues are as follows. (Note: An effort to establish and set dues for a Lifetime Family Membership category is currently in the works.):
- $15 per year: Standard Membership
- $250: Lifetime Membership
- $0: Active Duty Military and Immediate Family; Disabled Veterans and Immediate Family
- $25: Family Membership for two or more members in the same family at the same address
Please visit EaseHeadacheMigraine.com to join AHMA.
BOARD OF DIRECTORS
- Chair: Teri Robert; Co-Chair: Dr. Paul Winner
- Chair Elect: Ellen Schnakenberg; Co-Chair Elect: Dr. Bert Vargas
- Vice Chair: Bob Wold; Co-Vice Chair: Dr. Rob Nicholson
- Treasurer: Julie Zellner McDonald; Co-Treasurer: Dr. Rebecca Wells
- Secretary: Diana Lee; Co-Secretary: Dr. Rob Cowan
For more information about AHMA and to join, please visit EaseHeadacheMigraine.com.
Topics: Chronic Migraine, Community, Patient Education | 1 Comment »
Identifying & Treating Sex- and Orgasm-Related Headaches
By Kerrie Smyres | April 30, 2013
Posts about sex-related headaches are among the most frequently read and commented upon on The Daily Headache. Want more information about these headaches? Here are two must-read articles:
Preorgasmic and Orgasmic Headaches Are Not Migraine explains primary sexual headache (PSH), which are headaches that accompany sex but are not related to a headache disorder like migraine or cluster headaches, and describes treatment.
Sex as a “Cure” for Migraine or Cluster Headache? What’s the Deal? shares the statistics on sex decreasing or increasing migraine or cluster headache pain.
Only your doctor can determine whether your sex- or orgasm-related headaches are a primary disorder or part of another headache disorder. Whether you have experienced headaches in the past or not, it is important to see a doctor to get the correct diagnosis and treatment.
Topics: Biology, News & Research, Treatment | No Comments »
Survey: What Do Others Think of Your Migraines?
By Kerrie Smyres | April 29, 2013
From people thinking they’re playing hooky or trying to get attention to being told to get over their “headaches,” every migraineur has stories of appalling comments or behavior from friends, family, teachers, bosses, coworkers, and even strangers. Here’s your chance to tell your story. Complete this short, anonymous survey to help researchers better understand perceptions of migraine. The data gathered will be used to benefit other migraineurs and the health care professionals who work with us, as well as to educate the public at large.
Learn more about the survey in this writeup by Dawn Marcus, MD, headache specialist and lead researcher for this study: Research Opportunity: What do others think about your migraine?
The survey’s open through the end of April (which is tomorrow!), so submit your response now.
Topics: Friends & Family, News & Research, Society | No Comments »