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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.

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What kind of help during a migraine attack do you want?

help-during-a-migraine“I’m really worried about her and wonder what I can do to better support her before, (especially) during, and after an attack.” The boyfriend of a woman with migraine sent me this. Since different people want different kinds of help during a migraine attack, I recommended asking her directly. But it prompted me to create a list of the kinds of help that people with migraine actually want during an attack.

I need your help. Here are the questions I’d like to address. Please leave your responses in the comments (or respond to this message if you receive posts by email). Answer as many or as few as you’d like.

  • What can someone do to help you in the early stages of a migraine attack?
  • During a migraine attack, do you want someone with you or to be left alone? If someone’s with you, what do you want them to do? If you’re alone, do you want someone to check on you?
  • What would help you when you’re recovering from a migraine attack (postdrome)? Do you need to take it easy for a while or do you resume life as if the attack never happened?
  • Between migraine attacks, is there any way someone could help you make your next attack easier?

In my dual migraine household, we have a different routine depending on who is having the attack. When Hart has one, I put water, ear plugs, an eye pillow, and the remote control for the light/fan beside the bed while he takes his meds. I smooth the bedding, arrange his pillows, and turn on the air filter for white noise. I make sure he has his phone and that my ringer is on so he can reach me if I’m out of earshot. Then I leave him alone. After the worst of the attack, I make sure he’s fed and we usually do something low-key, like watch TV or a baseball game.

My migraine attacks are so varied that we take a case-by-case approach. Sometimes I only need help getting my meds. Sometimes I need help to bed, with gathering my migraine supplies, or finishing up something I was in the middle of doing (which usually means having Hart put food away). Depending on how severe the attack is and if I can sit up, I either spend it alone or watching TV. If I can think clearly (which is rare), we play a game. Same goes for postdrome.

I’m looking forward to hearing your thoughts!

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Talking About Migraine at Work: Your Thoughts?

migraine-at-workWhat’s your take on this statement?: “The key to managing migraines and work is communication. It’s important to let coworkers and managers know about your condition and educate them about it.”

That comes from Migraine at Work on UCLA Health’s migraine information page. The article’s recommendations for “initiating effective communication” include (paraphrased):

  • Educate your coworkers—because they don’t know what migraine is, they don’t know how disabling an attack can be. The article recommends getting pamphlets from your doctor to share with coworkers.
  • Talk to your manager—to reduce triggers by modifying your work environment and gain access to a dark, quiet room during an attack.
  • Be honest—say that migraine attacks can be disabling and you hate to miss work. Tell coworkers that you miss out on fun activities, too, not just work.

I haven’t worked in an office in 13 years, but these recommendations strike me as idealistic and tone-deaf. Other than the suggestion to be honest that you don’t like to miss work because of a migraine attack, this advice raised more questions for me that it resolved: Is it really a good idea to tell your coworkers and manager that migraine attacks can be massively debilitating? Is a person with migraine responsible for educating coworkers? Will pamphlets be fodder for gossip? Do coworkers even listen to attempts at awareness-raising? Are managers receptive to requests for accommodations? Do coworkers care if your migraine attacks prevent you from enjoying leisure activities?

I’d love to know what you think. Please leave a comment below (or if you get posts by email, reply to the email with your response).