Category: Chronic Migraine

Chronic Migraine, Treatment

Migraine Medication Detox: Getting Started

Kerrie Smyres

migraine medication detoxI’ve been taking an Amerge (naratriptan) and two Midrin twice a day since April 2015. The medications allow me to function, but have the potential to increase the frequency, severity, or duration of my migraine attacks through medication overuse headache (MOH), which is also called rebound headache. My headache specialist is aware of my medication use. We discuss its potential impact at every appointment and he reiterates that the odds of it being a problem for me are quite low. Although my history showed MOH was unlikely to be a concern for me, I was still concerned. With my doctor’s consent, I persisted taking the drugs because they were the only way I could function.

Since eating anything is my migraine trigger and no preventive medications have been able to address that issue, I feel stuck. Going off the medication is not going to stop eating from being a migraine trigger. But my last visit with my headache specialist got me thinking about the two treatments I’ve been trying this year. One is the ketogenic diet and the other I can’t tell you about yet. Both have helped a small amount, but neither has had a huge impact. They have helped enough that I don’t want to stop either one, but I’m having trouble quantifying the extent of each one. What if MOH is somehow keeping me from realizing the full benefit of either or both treatments?

What if…? When a question like that lodges itself in my mind, I have to learn the answer. My migraine medication detox began last night.

My doctor offered to admit me to the hospital to keep me comfortable through detox. I declined because I don’t think I need it. Instead, I will take Compazine (prochlorperazine) 30 minutes before meals and use an oxytocin nasal spray after the migraine attacks begin. Compazine is known as a nausea drug, but it can also help reduce migraine symptoms. Oxytocin is being studied as a potential acute migraine treatment and could also have preventive effects. If my migraine attacks take a sharp turn for the worse, I’ll add DHE or Migranal to the lineup (assuming they aren’t out of stock). I have the option of starting another preventive at the same time, but think I’m going to wait in an attempt to control variables.

If you’re reading this to learn how to do a migraine medication detox with as little pain as possible, please be aware that my treatment may not be an applicable template. For most people with MOH, going off the medications would result in horrendous pain. My symptoms and situation are different than most. Thanks to my current preventive treatments and dietary restrictions, my pain rarely gets above a 3 on a 0-10 scale. I expect that it won’t exceed a 6 even while detoxing. Fatigue and cognitive dysfunction have been more disabling than the pain for me for the last few years. Those symptoms will be bad, but as long as I can feed myself and plan to limit my work for a couple weeks, detox shouldn’t be too bad for me.

I very much want to discover that MOH has crept up on me and is keeping two somewhat effective treatments from reaching their full potential. But I’m not holding my breath. I suspect I’ll go through migraine medication detox and discover that I still have a migraine attack every time I eat. While the acute medications may be increasing my susceptibility to migraine attacks outside of eating, they are also managing the attacks I get twice a day no matter what. My best hope is that the ketogenic diet and the other treatment are far more effective than I think because MOH is hiding their efficacy. Or maybe oxytocin will provide great relief. Whatever happens, I’ll have at least one more data point to help determine what my next course of action will be.

(Pardon any typos. Editing is beyond me right now.)

Chronic Migraine, Coping

When Migraine Grief Refuses to Be Ignored

Kerrie Smyres

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.

Chronic Migraine, Diet, Triggers

Exhausted and Frustrated By Migraine Diets

Kerrie Smyres

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.

Chronic Migraine, Coping

I Have Given Up

Kerrie Smyres

“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.

Chronic Migraine, Coping

Blindsided By Grief

Kerrie Smyres

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.