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When Migraine Grief Refuses to Be Ignored

Migraine grief: Chronic Migraine keeps calling Grief and inviting it over to visit.Grief barged in at 3:18 a.m. It wasn’t too surprising—I’ve been slamming the door in its face for a week.

Facebook shows me Spanish tortilla with red peppers and peas. I want to read how the Cook’s Illustrated staff iterated to create the perfect dish, but know it will fill me with unbearable longing. I do not click through. Slam!

A character in a book mentions traveling to Ireland. Unbidden images of rolling green fields and castles fill my thoughts. Slam! The door is closed before I even realized it had opened.

But Grief keeps pushing its way in. Australia, New Zealand, Patagonia, Iceland—all the places I long to go, all the places I’ve been trying to avoid thinking of—scroll through my mind. Slam!

I throw my back against the door to prevent it from opening again.

Still, scones, chocolate chip cookies, and multigrain bread work their way into my thoughts. Slam! I cannot staunch these visions quickly enough. Not only can I not eat these foods, I cannot bear to bake them. The double loss threatens to invite Grief to become my roommate.

My efforts aren’t enough, so I erect a more permanent barricade in front of the door.

My therapist asks me to rate how severely I am grieving on a scale of 0-10. “Seven, when I let it in,” I say. After some back and forth, she tells me I am responding to my emotions skillfully. That to see Grief pounding on the door and choose to leave it on the doorstep because I can’t deal with the imposition is a healthy reaction.

The barricade works. What a relief.

Grief slips in through the forgotten crack at the bottom of the door.

Attempting to add pomegranate to my foods-I-can-eat list, I am rewarded with six hours of a migraine attack. I go grocery shopping when the attack lets up. Grief climbs into the cart and fastens the seat belt.

I try to push Grief aside as I fill the cart with the foods I can eat: romaine lettuce, butter lettuce, asparagus, red peppers, green peppers, watermelon, chicken breast, cream, butter. That’s it. Grief laughs. It reminds me over and over how fucking unfair it is that eating is my migraine trigger. It tells me I will never again eat peaches without paying in pain. It says that all my work to determine my triggers won’t actually result in fewer migraine attacks.

Grief hangs out for several hours. I feel boring and needy as I register the same old complaints with Hart. I have nothing new to tell him on this front. Grief keeps coming back for the same reasons it did last month, last year, last decade. No matter how much great work I do in therapy, Chronic Migraine keeps calling Grief and inviting it over.

Talking to Hart makes me feel better. I choose to change the subject and toss Grief to the curb again. Slam! I put the barricade back up and shove a towel in the crack under the door.

I find Grief lying in bed beside me when I roll over at 3:18 a.m. I’m too tired to try to kick it out. We talk for a couple hours, then Grief lets me go back to sleep. I suspect the reprieve will be short.

I awake in the morning to see the door hanging by its hinges. I can no longer deny Grief entry into my home. It is adamant that I entertain it right this second.

Grief and I have spent so much time together that I know exactly what to expect. Grief will detail everything I have lost to migraine, it will predict a future based on past scenarios, it will remind me that my actions have been futile thus far. I will cry until I am spent. Grief will ignore my exhaustion and overstay its welcome. (To do otherwise would be impossible; we both know it was never welcome.)

After Grief has its say and I regain some strength, I will tell it to leave. I will have to repeat myself multiple times before Grief finally complies. I will rehang the door and shut it gently. I will sigh in exhaustion and relief, hoping to have at least a few days of peace before Chronic Migraine summons Grief to my door again.

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Exhausted and Frustrated By Migraine Diets

blank menuI narrowly avoided bursting into tears at a Thai restaurant last night. Hart and I are in San Diego with a dear friend for the American Headache Society conference. I wanted to spend time with them and (inexplicably) thought watching them eat one of my favorite cuisines wouldn’t be a problem. The wonderful smells hit me half a block from the door. I lasted long enough to snag a table while Hart and our friend ordered, then jumped up and nearly ran to get away from the reminder of how much I’m missing with these endless migraine diets.

Similar incidents have become more frequent in the last year, though this was the worst one. I usually stay home to avoid them altogether. After three-and-a-half years on restricted diets, being around food became agonizing. That was a year ago. Now I’ve been on restricted diets for four-and-a-half years and everything I eat or drink other than water has been a trigger for 15 months. Nearly every day I wonder how much more I can bear.

One of my favorite things—which is also required for survival—is a minefield. I worked for years to determine my migraine triggers. I did exactly what doctors and patient advocates and every migraine book say to do. The task felt impossible, but I finally found my very worst trigger. And learned that while my health care providers are compassionate and apologetic, they don’t know how to help. I become overwhelmed by the injustice of this if I allow myself to think about it.

I’m not trying to hold back the grief, but am trying to experience it without increasing my anger and sadness by dwelling on the unfairness. But both grief and a sense of unfairness are always lurking. Thinking about food fills me with dread. I don’t join my friends and family for meals. I rarely bake and don’t enjoy it when I do. I no longer express my love by feeding people. I am sacrificing an essential part of myself (my self) to satisfy the migraine gods. In my most frustrated moments, I am convinced the migraine gods scoff at my offering.

I have felt like I’m on the verge of breaking for months. I want desperately to stop the diet, but feel like I can’t. The ketogenic diet continues to keep me somewhat functional. I want nothing more in the world, so I keep eating this way. For now. I know that every other food-based intervention has eventually quit working. This one will almost certainly expire, too. I haven’t broken (whatever that would look like) because I can imagine the future. I would be furious with myself for throwing away low-migraine days when they were possible.

People often assume the only reason I can stay on these diets is because I don’t care about food as much as they do. I so wish they were right. Food is one of my core values. Figuring that out with my therapist last summer was illuminating. All my grief and frustration aren’t about not being able to eat what I want without having a migraine attack. They are about having an essential part of my being eclipsed. These diets are technically a choice, but the other option is being eclipsed by more frequent and severe migraine attacks. I’d be trading a bad situation for an even worse one.

Tenuous and fragile are the adjectives that have dominated my year. The current incarnation of my diet is allowing me to function somewhat, but for how long? This is the last diet on the list for me to try, so what happens if/when it stops working? (That’s a rhetorical question. Please don’t give me suggestions, they will only inflame me right now.) What treatment is next? Where do I go for guidance when medical knowledge has reached its limit? (That’s another rhetorical question. No suggestions, please.)

Even my parenthetical statements show how fragile I am right now. I know I’ll figure something out. I’ll find more information and more treatments to try. I am not defeated, just exhausted. And so frustrated.

I’m in San Diego for the AHS conference, but am unlikely to be up to attending any of the sessions. I’ll still try, but self-care is my backup plan. I’ll read and enjoy the cooler air. I’ll take a look at the ocean. Maybe I’ll book a massage. I’ll spend whatever time I can with loved ones. As long as it’s not while they’re eating.

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I Have Given Up

“Research is finding new treatments, but nothing is available to help you now,” my headache specialist said. “You’re the same age as my daughter. I would want her to have relief while she waits for better medicines.” This is how the doctor announced that he’d reached his limit of treatments to try for me. He then prescribed Opana, a long-acting opioid. As kind and compassionate as he was, the prescription combined with the conversation to reverberate through my mind: YOU WILL NEVER FEEL BETTER.

This was in June 2009. It kicked off The Worst Year of My Life. I spent that year in horrific pain and housebound in a city where Hart and I had no support system. When I did get out of the apartment, the weather was miserable, the city was overstimulating, and people were aggressive (especially compared to Seattle’s friendly superficial social interactions). All those factors contributed to a terrible year. But the worst part was that I had given up hope of ever finding an effective treatment.

The future I saw before me was an interminable hell: days of vicious pain with no possible relief, nausea so severe I could barely eat, going to bed in tears each night wondering how I could survive another day. Even reading, which has been my escape since I learned to decipher written words, was impossible. For months, suicide seemed like the only alternative to this future.

I began writing this story after three readers responded to Blindsided By Grief by telling me they have given up hope. My heart aches for them because I know what it’s like to feel desperate and helpless. I’m also worried that I inadvertently made them feel worse. What I should have written was “I will never, never, never again give up trying to feel better.” Because I have given up before. My hopelessness multiplied already terrible physical symptoms to the point that they became nearly unbearable.

I don’t see my determination to never again give up as a sign of some superhuman strength. When my options came down to die, live in misery, or believe in a better future, the latter felt like my only reasonable option. If I stop trying to get better, I stop wanting to live. I will do everything I can to avoid feeling that way ever again. I must believe in the possibility of a better future—and that it’s my job to find the most effective treatment for me—to keep the helplessness and hopelessness at bay.

I did not realize until today what a pivotal role my former headache specialist played in my loss of hope. I have never faulted him before. He was truly sorry he could not help. But he didn’t say *he* was out of ideas, he told me that nothing existed that could help me. He told me to hang on until science caught up with me. It’s as if he took lessons in how to destroy a patient’s spirit. And to think that I found relief three years later with cyproheptadine, one of the oldest migraine preventives available.

Telling someone else to have hope won’t automatically instill it in them. Instead, I’m sharing my story to show that it’s possible to find hope again even when it feels lost for good. For me, hope came back even stronger and more realistic than it was before. Sometimes hope doesn’t feel like enough, sometimes it feels like the despair will gobble me up. But most of the time, it’s a life preserver that I cling to so I won’t drown.

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Blindsided By Grief

plant sprouting in sandAs I checked my blood sugar, my heart fell to the cold tile bathroom floor and shattered. I was doing something to bring myself delight, to distract from the frustrations of the ketogenic diet. Instead, I was blindsided by grief while watching a Dave Matthews Band video.

Last year I told the friend I used to see shows with that I was done. I said I loved the music and dancing, but the obnoxiously drunk frat boy crowd was more than I could deal with. Until 30 minutes ago, I believed this to be true. I believed not going to shows was a conscious decision. When grief walloped me upside the head, I discovered that migraine had make the decision for me.

My grief is not about a band. It’s not about going to concerts. I’m grieving the release of throwing myself into music and dancing for hours. It’s a high that carries me for days when I see any band play live, and for months when it’s my favorite band. Dancing at shows is not just an activity, it’s a vital part of my happiness.

Despite what I told my friend and myself, I haven’t moved on. Saying otherwise was an attempt at self-preservation. I miss going to shows so desperately that I’d convinced myself otherwise so I wouldn’t have to face the loss. How do you move on from losing a fundamental part of what makes you who you are?

This kind of grief is so hard. It’s a reminder of all that I’ve lost and a realization that I may never get it back. It makes me wonder what else I’ve convinced myself of, what other grief will tear into my chest unexpectedly. It makes me wonder how many other fundamental parts of myself migraine will consume. It makes me wonder….

OK, Kerrie. Time to stop ruminating. What are you feeling in your body?

My chest is tight. It’s so hard to breathe that I feel like I’m on the verge of hyperventilating. My stomach twists, pulling me down so I’m curled in a ball.

It hurts so much.

How do I move on from losing a fundamental part of what makes me who I am? I will do it by remembering that losses aren’t forever, even though they feel like it at the time. I will remind myself of the four long years in which I couldn’t read. Now, four years after I started reading again, I still cry when I think about how much I missed it. I will think of all the treatments, technology, devices, and drugs I have left to try. Most importantly, I will keep trying—trying new treatments and trying to do the activities I love.

When a band I like announces a local concert, I put it on the calendar. The day of the show, I take it easy and try to minimize food triggers. I do this despite missing every show since January 2015. My heart hurts each time I confirm that I won’t be able to go out, but I keep making plans. I have to. To stop would mean believing I will never feel better. And I refuse to believe that.

The first time I “got” meditation, lyrics from my a Dave Matthews Band came to mind: “Honey, honey, come and dance with me.” A song about living and loving wholeheartedly, it has always felt like it was written for me. For better and for worse, I live voraciously. My grief is so intense because my joy has been so great.

Dancing, traveling, practicing yoga, baking, eating, laughing with my friends, and spending time with my family bring me such great pleasure that I will never, never, never give up on trying to feel better. Even if I have to sweep up my shattered heart and piece it back together from time to time.

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The Dance of Chronic Migraine Treatment: Optimism Peppered With Despair

“Your optimism is so inspiring,” a reader tweeted last week. I saw the tweet on Monday after a weekend of desperation, frustration, anger, exhaustion, helplessness, and hopelessness.Sunday culminated in a sobfest. Optimism was in short supply. My attempts to control the hypoglycemia weren’t working. Once again, it looked like I’d have to give up on the diet.

Hart and I went to Tucson for the weekend to watch our niece play softball. My blood sugar hit a low on Friday night and I spent Saturday trying unsuccessfully to increase it. Hart went to the softball game; I watched it via webcast. My spirits were low, but the tears were fleeting. When we decided to go home early, I could no longer hold the tears in. I had talked to my niece for five minutes on Friday and gave her a hug. That was it. I won’t see her for another year. Yet again, migraine was to blame.

I’m sick of how much control migraine has over my life. I want to make plans without an eternal asterisk. While the ketogenic diet has made me a little more functional, it requires even more attention than any other diet I’ve done and it’s results are ever-changing. Just when I think maybe I’m onto something good, another piece shifts and it’s back to looking like I’ll have to stop the diet. The fluctuating highs and lows have worn me out.

Monday brought another change to the diet. I’m not counting any chickens (except for weighing the amount of chicken breast I eat with each meal), but it’s going a bit better. This lower ratio may enable me to eat without triggering a migraine attack chronic-migraine-treatmentand avoid hypoglycemia. If it doesn’t, I really think I’m at the end of the line with the diet.

Just a few days ago, that last sentence would have brought me to tears. Today it makes me sad, but not heartbroken. When I responded to the reader’s tweet that I wasn’t feeling too optimistic, she said, “Optimism is like happiness—can’t have it all the time, but it’s whether you can find it again after its lost!”

So that’s where I am—in an ongoing dance of optimism peppered with despair. Chronic migraine pulls me onto the dance floor for this number far too often.