I remember feeling defeated when I read that article a year or two ago. My goals were sitting on a shelf, put aside when getting out of bed and feeding myself were all I could manage in a day. They did not inspire me, but filled me with despair over all I had already failed to accomplish and everything it seemed I would never be able to do. Even though I felt better than I had in at least five years, I was still so sick. Goals did not feel like inspiration, but a reminder of defeat. What was the point in having goals, I wondered, when migraine demanded all my energy and attention?

That despair was temporary. Try as I might to pretend I had no dreams beyond finding an effective migraine treatment, my ambitions cannot be sublimated. As frustrating as it was to believe my dreams would never be fulfilled, it was even worse to imagine that my only role in the world was sitting on the couch in pain. The sentiment of that headache specialist whose name I cannot remember in the article whose location I cannot find were so true. Having goals keeps me believing that migraine will not forever dominate my life and that, even if I am, I will somehow contribute meaningfully to society. When my life feels unbearably small and worthless, these aspirations give me a reason to strive, even if getting out of bed will be my biggest accomplishment of a day (or week or month).

While the previous sentence would be a fine place to end this post, a reader asked me to share my goals with you. She said that reading about my aspirations inspires her to keep dreaming and believe in the possibility of fulfilling goals despite illness. Doing so has taken me months. Thinking privately about everything I hope to achieve in my life is hard enough with chronic migraine grinding me down. I have often felt like I would never even be able to begin pursuing my goals, much less achieve them. Declaring these dreams publicly feels like I’m committing myself to them, and that if I do not attain the goals I share, I will have failed. Because I know at least one person will benefit from my sharing, I will plunge in and trust that you will understand if I’m never well enough to follow through.

*Deep breath* OK, here goes.

Help people with the emotional turmoil of chronic migraine. In the last year, I’ve come to believe that my experience with and understanding of the emotions of chronic migraine is the most important knowledge I can share with other migraineurs. How I plan to do this, whether through writing, coaching, or even getting a counseling degree, depends on the day. Writing will likely prevail since it reaches the largest audience and I express ideas best in writing. I’m already doing this to some extent on The Daily Headache and Migraine.com, but I want to reach even more people.

Help non-migraineurs understand how serious and debilitating this condition can be. I’ve begun to see this as an extension of the previous goal. The facts about migraine are astonishing (my headache specialist shared some with me yesterday that literally made my jaw drop), but tugging at heartstrings is often more effective than facts. I want to write about migraine in a way that will touch those who believe migraine is just a headache and publish those articles in places that aren’t specifically focused on migraine (like Real Simple and O magazine for starters).

Write a book about couples’ communication and chronic illness. Since my background is in human communication (with a love of interpersonal communication), this screams “dissertation” to me. While the coursework for a PhD would be wonderful, the thought of negotiating university politics and slogging through comprehensive exams and writing with a committee makes me want to scream. Still, I’d learn so much from published research along the way and could gather excellent data for the book. I could massively edit the academic dissertation to make it palatable for the general public. Or I could skip the school stuff and do it myself. Compared to getting a PhD, writing a book looks easy.

Teach people how to bake. There are two “tracks” I’m thinking of: how to make typical boxed goods from scratch with little extra effort and how to make sublime cookies. The first is for folks who think baking is too hard. I’d teach the very basics of making cookies, cakes, and brownies, plus the tricks to make them turn out (like that over mixing after you add flour makes for tough cookies). Nothing overwhelming or complicated, just easy recipes and simple steps. Sublime is where the involved, time-consuming (though not necessarily complicated) recipes come in. These cookies are so good that even people who don’t like sweets are taken in by their delicious addictiveness (like my chocolate chip cookies).

Cook for people. “Love people, cook them tasty food” says the Penzey’s bumper sticker stuck to my recipe notebook. It is an eloquent summary of one of my life philosophies. I imagine it mostly as bartering, as I’m doing with a friend who is working part-time for TheraSpecs. She hates to cook and has a family to feed. I love to cook and want to do something when I have energy but am mentally foggy. I recently spent 28 hours over five days and made at least six weeks of dinners for her family. It was so much fun and I’m happy to know I’m nourishing the bellies and taste buds of people I love. Unfortunately, a week later I’m still paying for all that time on my feet and cheating on my diet as I tested recipes.

How heartening it is to see that I’m already making progress on some of these goals. Until writing them down just now, they all felt big and nebulous and way out of reach given my current health. Big goals are made up of tiny steps after all. I’ve been working toward my dreams without even realizing it. Migraine isn’t holding me back, just slowing me down.

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?

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?)

Some important points I must address before continuing.

1. 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.
2. 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.
3. 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?

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.

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.

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.

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.

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.

TheraSpecs Stella‘s on-trend styling and dark tortoiseshell finish look great while providing maximum protection from light with TheraSpecs’ therapeutic tint. I’ve been wearing the prototype around for a couple months. Not only have I gotten tons of compliments on the prototype, my sensitive head loves how lightweight and flexible they are. Check out Stella Indoor, Stella Outdoor, or the discounted Stella Combo.

For people who wear prescription glasses and want maximum coverage at minimal cost, TheraSpecs Over-Rx frames are an excellent solution. We worked extra hard to find the perfect material so they’re comfortable and lightweight even when worn over glasses. I wear them daily whenever I’m wearing  glasses instead of contacts. Available in Over-Rx Indoor, Over-Rx Outdoor, and a discounted Over-Rx Combo.

I woke up this morning with my pain at a level 2, my tummy growling and my energy off the charts. “Ha!,” I thought, “maybe magnesium is the ticket.” I ate breakfast while cleaning the kitchen, then got ready to shower. Yeah, my nausea grew as I cleaned, but I told myself it was just the magnesium, not a migraine. I was about to climb into the shower and could no longer deny that my energy was gone and my head pain had increased. I pleaded (with whom? my head? the migraine gods?), “Please don’t do this, please don’t do this,” but I had to acknowledge that showering would knock me out completely.

So now, 30 minutes after getting out of bed, I’m sitting on the couch, waiting to see what’s going to happen and trying to decide if I should take a triptan.

That morning was nothing but a typical variation in a day in the life of a chronic migraineur, and another example of wishful thinking after trying a new treatment. This blog is filled with my treatment ups and downs — the anticipation and anxiety beforehand, the tentative belief it is working, the disappointment when it doesn’t. Reading old posts was heartrending before I found helpful preventive meds.

Now I can acknowledge what other people have said they see in me — tenacity, bravery, a positive attitude — but it is like I’m reading about someone else. These characteristics are precisely the reason I survived and yet I can’t fully grasp how I persevered. This excerpt from Anna Quindlen’s Lots of Candles, Plenty of Cakeis the best explanation I can come up with:

And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it’s happening to you.

If you’re still in the daily slog, take heart. You will make it through and will one day be amazed by your own strength.

Upon finishing that post a few weeks ago, I wasn’t sure if the weight gain was worth the trade off. Then I asked this hypothetical question: Would I stop cyproheptadine tomorrow if it meant I’d lose the weight within a week and my daily pain would return to a level 7? No freaking way! Ten or 20 pounds is an absolutely fair price to pay for level 5 pain.

Avoiding and Coping With Migraine Medication-Related Weight Gain by Diana Lee has some excellent tips if you’re struggling with weight gain from a preventive or inactivity due to migraine.

Throughout the two-hour initial appointment, I kept mentioning things I wrote about last week. Like that the emotional toll of chronic migraine is enormous. That almost all my emotional and physical strength goes into taking care of myself, thus continuing my isolation from others. That I’m envious of successful women my age because I believe I, too, should be able to support myself and pursue my dreams. That for the first 10 years of chronic daily headache, no one believed I had a physical illness. Although I told the naturopath repeatedly that I’m so much better off emotionally now than I was a few years ago, the fact that everything I just mentioned was so fresh in my mind that I felt the need to write about it just last week indicates I’m not as “over it” as I thought I was.

I’ve been to therapists in the past, some of whom have been helpful with other issues, but no one seemed to really get what it means to for a young, intelligent, ambitious woman to be rendered housebound by a debilitating chronic illness. (The last one I saw thought I needed help setting goals and following through with tasks. If only it were that simple!) I’d thought this was a failing of the therapists, but now I wonder if the problem was in how the appointment was structured.

Every time I see a new therapist, I introduce the role of migraine in my life by describing all the ways I try to live a good life despite chronic illness. I always came out looking strong and motivated. I wasn’t misrepresenting myself, but was focusing on the positive — because who wants to meet anyone new and tell them all the bad stuff right off the bat? Besides, unless I’d just had an acute emotional crisis, the hard parts are rarely at the top of my mind. Usually such a crisis would spur me to make the appointment, but by the time I saw the therapist three or four weeks later, I’d moved on.

Meeting with the naturopath was more like a standard medical appointment. I started describing my symptoms and what my life looks like with migraine as such a large component of it. Because I wanted to convey the gravity of the physical experience (though I made sure to tell her that I’m so much better than I used to be), I was willing to address unpleasant aspects I’ve held back from therapists in the past.

I’ve long advocated for people with chronic illness to see a therapist, though I readily admit finding someone who understands the complexities of it is difficult. The best advice for finding a good therapist I’ve been able to give is to ask your doctors. But I’ve also always assumed the therapist sets the tone for the sessions. Maybe the person who is receiving counseling is responsible for determining the conversation’s course.

Based on my very recent experience, I’m going to change my recommendation. Yes, ask your doctor and check Psychology Today for therapists who specialize in chronic illness, but also keep a running list of issues that are bothering you. Perhaps write in a journal and see what comes up — I often don’t know what’s eating at me until I see the words written on the page. The most intuitive therapists may be able to figure out what you need to talk about all on their own, but you’re the only one who truly knows what’s bothering you.

I’m writing this advice as much for myself as for anyone seeking guidance on getting the most out of talking with a therapist about chronic illness. I’ll let you know how it works out after a few sessions.

The isolation gave me a sense of physical emptiness. It was as if I wasn’t even there — like my essence (or soul, if you please) was missing. Like I was in this experience of migraine entirely alone and not even the people closest to me could touch me physically or emotionally. (Read the whole post here.)

My friend visited last Thursday. Although I haven’t felt isolated like I did that night again since then, the memory of when my migraine attacks were at their worst has continued to haunt me. In those days, I felt disconnected all the time. Like the constant companion of severe chronic migraine wrapped me in a layer of insulation that kept anyone else from reaching me. No one, not my friends, family, or even my husband, could get through it.

Much of this time was when I lived in Seattle. In my bedroom there, the closet took up one long wall, but the doors were a regular closet door width. This left a nook that was difficult to access. I used to lie in bed and fantasize about curling up in that tight space, where I could be comforted by the darkness and the enclosure. I don’t think I ever did it — it seemed a desperate move, like doing so would mean I was millimeters away a psych ward — but I do remember sitting on the floor in the tiny spot between the bedside table and the wall. Even there, migraine wouldn’t leave me, and the sense that I was disappearing from the world was magnified by the knowledge that I took up so little physical space.

Thankfully, those days are behind me. I say this not only because I’m on some preventives that reduce the severity of the migraine attacks, but because I don’t think I will be able to disconnect like that again. Since those days, I’ve allowed my friends to be around me when I’m in a bad migraine attack. I’ve let other people see what it can be like and have spoken about it more openly. I used to close off as soon as someone asked me about migraine, as if acknowledging it would make it more real. Now I answer questions readily and have described the experience to non-migraineurs. I have written about those times and how close I was to suicide.

Then again, it is easy to say I won’t get to that point again on a day I’m feeling better. Last Thursday night was scary both for the emotions I felt and how reminiscent they were of worse days. I am far more connected than I was a few years ago, but, truthfully, I’m still detached. I haven’t returned to calling friends and family for no reason and am nowhere close to being as social as I once was. I’m not in massive pain all the time, but I still have a migraine nearly every day. I’m physically and mentally exhausted much of the time. My emotional and physical strength are stretched taut in  support of myself; my ability to care for others comes in small, unpredictable bursts.

Even the most sympathetic, empathic friends and family cannot understand what it is like to live inside chronic migraine. Despite all the explaining and writing I have done, I still cannot capture the bleakness and alienation I have felt. The physical sensations of chronic migraine are horrendous, but the emotional torment may be even worse.

“Trust yourself” is the best migraine (and life!) advice I’ve ever received, and it is what I’m trying to do with this diet. Trusting that I know what I feel like on a baseline diet of chicken, unenriched white rice, and gluten-free oatmeal. Not just an overall pain rating, but where the pain is located and what it feels like, how much energy and stamina I have, how dizzy and nauseated I am not. And trusting that I can identify how those things change when I test foods that don’t agree with me.

Last week I tested short grain brown rice. Within 24 hours, I had the most painful migraine I’ve had in months. While it seems impossible that brown rice could trigger a massive migraine, there were no other obvious variables at play, not even weather. This is insufficient evidence for any scientific trial, but I know how I felt. I’m not going to swear off brown rice forever, nor am I going to preach to the world that it is evil. I’m simply going to be aware of how my body seemed to react and avoid it for now.

This diet is a wacky experiment with variables that are impossible to isolate. Part of me wants to say it is all crap and move on. But I cannot deny how much better I have felt on it. I’m a poster child for intractable chronic migraine. If something decreases my head pain and isn’t going to hurt me (once I improve my nutrition), then I’m going to stick with it and slowly reintroduce foods to test them, rather than ditching it all and eating whatever I want.

I’m not going to declare that the Failsafe diet is be the solution for everyone (nor am I sure it is the solution for me), but maybe there’s something to it for some of us with refractory migraine. Scientific studies show that some people have trouble processing lactose or gluten. Is it too far-fetched to believe that other components of our food could be difficult for some bodies to process?

I’m still skeptical, but I’m also still on the diet. I’m the only one who knows how I feel — that makes me the expert here. I have to trust myself on this one.

How Chronic Pain Has Made Me Happier, a recent Lifehacker post, has some great points about the enriching lessons of chronic pain. Unfortunately, they are couched in bumbling terms that minimize the struggle and oversimplifies the relationship between psychological and physical health. It frames illness as opportunity — a characterization that always raises my hackles — and leans toward the “just think positively” self-help meme. (Keeping these points in mind, it is still absolutely worth a read.)

All these complaints are minor in comparison to the glaring reason why this article does not apply to migraine: migraine is not a pain disorder, nor is chronic migraine a chronic pain disorder. Migraine is a complex neurological condition that affects every system in the body. Migraine ain’t just a headache and it ain’t just pain.

Everything the writer talks about, all that he’s able to overcome, while not simple by any means, only represents one piece of migraine. Pain may be the most obvious, debilitating feature of migraine for most of us, but the nausea, fatigue, dizziness, mental fogginess, mood swings, and heightened sensory awareness can be just as debilitating. And that’s only a smattering of the many under-recognized symptoms of migraine.

Treating migraine as either a headache or a pain disorder perpetuates the myths that surround this illness. It also trivializes how debilitating migraine attacks are, whether acute or chronic. According to the World Health Organization, during a migraine attack a person is as disabled as a quadriplegic. Now think about what a chronic migraineur must endure.

Please think carefully about how you describe migraine: whether you call it a headache or head pain, a pain condition or a neurological disorder, a disease or not. These may seem like insignificant differences, but research abounds that the words we use shape the reality we see. And the reality that non-migraineurs believe.

Though my doctors and I think the fatigue is a migraine symptom (it is far worse during a migraine attack) I’ve searched for other causes. My thyroid’s been scanned an biopsied, I’ve taken supplements after tests indicated low vitamin D and B12 levels, my internist has probed a variety of possible causes… and yet the fatigue lingers.

Then, a bright light bulb suddenly switched on. I’ve taken an average of two Midrin each day (some days none, other days four or five) for the last three years. The drug is a combination of acetaminophen (Tylenol’s active ingredient), a vasoconstrictor, and a mild sedative. Though I don’t feel sleepy when I take it, I wonder if the sedative could have an additive effect that’s left me worn out after three years of a continuous dose. (Not to mention I could have medication overuse headache, a.k.a. rebound, from daily acetaminophen.)

I am so careful with the medications that I take. I research them well and track whenever I take an abortive, but somehow the frequency with which I was taking Midrin didn’t register. I’ve been off it two weeks and both my fatigue and migraine frequency have lessened (though the roof debacle has muddied my results). I’ve taken plain acetaminophen three times each of the past two weeks, but am going to try to go without it completely this week.

The number of different migraine triggers, the possible effects of medications on migraine frequency and severity, and the variety of symptoms that can be present during a migraine make for a complicated juggling act. I never intended to join this circus.

With my super-sensitive nose, I was reluctant to get an asphalt roof. After reading as much as I could find (not much) and talking with air quality experts, I was finally convinced that I wouldn’t be able to smell the roofing materials indoors. This was convenient because any changes to our roof would require special approval from the city’s historic preservation office, a fight for which I have no energy and Hart has no time. Also, another material would cost at least twice as much, which isn’t possible considering that we’re a year into starting a new business.

Demolition day produced an alarmingly strong odor in the house, which, of course, triggered a migraine attack. The odor — and the migraine — got worse each day. Although I kept the bedroom door shut and ran a medical facility-quality air filter in there, even the bedroom reeked. Not only were we woken up at 6:30 each morning by men tramping across and pounding on our roof, I was awake throughout the nights, convinced we’d just made an expensive decision that would worsen my migraine attacks.

Today, the roof is finished. It looks great, and, even better, doesn’t leak. Leaving the house open all night and a special $40(!) air conditioner filter diminished the odor greatly, though the smell is worsening as the day warms up. An hour ago, I believed I didn’t make a terrible decision that will exacerbate my migraine attacks. Now I’m not so sure. We’ll see how the house smells in a few hours. Let’s hope I have a good report that can reassure migraineurs and odor-sensitive people everywhere that asphalt roofs won’t worsen the condition.

Even though I felt pretty good migraine-wise last week, something else always seemed more important than writing. It wasn’t until Saturday when I read a novel in which a teenager who was taking a creative writing class was continually surprised by what her writing revealed that I realized I was avoiding something. That truth I didn’t want to see? Ritalin is not the amazing get-your-life-back pill that it was the first week I was on it.

My migraine brain is not impervious to cloudy days. The mental fog has returned. I still have a migraine attack nearly every day. Sometimes I’m so fatigued it feels like sandbags are weighing down my body. I do not pop out of bed raring to go after seven or eight hours of sleep, nor do I go nonstop all day like the Energizer bunny.

While I mourn that lost energy and mental clarity, I also feel like an ungrateful brat. After a month on Ritalin, the pain tops out at a level 4 and I’m fairly productive even though I have to push myself hard to get going. Reducing my highest pain level by a full point and being able to get out of the house more? That’s a migraine preventive triumph.

Except that the losses continue to obscure the wins.

Despite my freakout, I don’t think Ritalin is directly making the migraines worse. I’m pretty sure the five-day migraine was the result of unwittingly (or half-wittingly) reintroducing salicylates to my body. Since then, the weather has been erratic. My sleep is off, too, which could definitely be a Ritalin side effect.

On top of those issues, whenever one migraine dissipates, I have enough oomph to do something that triggers another migraine. That energy is a positive effect of the Ritalin that I have yet to figure out how to manage. I unintentionally over-exert during yoga or on the treadmill as I try to find the balance point of good exercise without triggering a migraine. Or I go to a place that I don’t know will be perfumed. Or I have sex (damn those orgasm-triggered migraines!).

Could it be that if I went two days in a row without a migraine, the next attack would be less debilitating? As if I need to recharge between migraines to get back that lovin’ feeling even when I have an attack. I also wonder if my body is acclimating to the medication and it is becoming less effective.

Ever a romantic, I still believe Ritalin and I can work through these difficulties and create a loving, supportive long-term relationship. Maybe we’re not meant to see each other every day, but would be better off having fun together a few times a week. I’m sticking with daily for now as I try to manage all the other triggers. That’s always hard work, but not as exhausting as it was before Ritalin came into the picture. Every relationship has its tradeoffs, but the good ones are worth the effort.

A group visit can have as many as a dozen patients and last for as long as two hours. Every patient is asked for his or her concerns and can ask questions and provide input to other patients. The doctor acts as a facilitator and answers questions, often covering more topics than they could in a shorter visit. A physical exam, if necessary, is still done in private. Studies indicate that patients treated in groups actually have better outcomes than those who see their doctors in traditional appointments.

These appointments sound like a hybrid doctor’s visit and support group with the added benefit of a trained medical professional who can correct misunderstandings. Unlike a support group, I doubt there’s much exploration of the emotional burden and quality of life issues associated with illness. It would, however, introduce patients to others with similar struggles in their geographic area, thus possibly promoting support groups that gather spontaneously. It might also bring home to doctors just how much an illness impacts their patients’ lives.

I wonder how it works for patients who are in different stages of their treatment. Would a migraineur who has tried dozens of preventives benefit from being in a group with someone who had only tried two, and vice versa? I’m not ready to give up my one-on-one time with my headache specialist just yet, but the idea of a group visit is fascinating.

Would you attend a group medical appointment, whether for migraine or another illness? If you already have, what did you think and would you do it again?

Drowning

Hanging by a thread

At the end of my rope

Clawing my way up

Gasping for breath

Every writer knows to avoid cliches. They are trite and boring and rarely describe a situation effectively. However, these cliches don’t come to mind when I am writing, but when I am living—living with chronic migraine. Every one of these overused phrases has felt like literal truth at some point.

What cliches feel like truth in your struggle with migraine or headache?