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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.

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Migraine Stories: Insights from a Teenager With Chronic Migraine

Having chronic migraine is always difficult, but living with migraine as a teenager is particularly tough. At the age of 17, Sidney already knows how devastating chronic migraine can be. It’s impact reverberates throughout her life, especially in lost friendships and being behind in school. Yesterday she began a stay at a comprehensive pediatric pain rehabilitation center—please keep her in your thoughts as she goes through this intense process. I so hope she finds some relief. She shares her story up to now with you below. She’s also making notes about her stay at the pain clinic and hopes to share the experience with you. 

Here’s how to share your story. And you can read more readers’ stories here.

Migraine Background

My diagnosis is chronic migraine headache with (occasionally) aura, light and sound sensitivity, lightheadedness/dizziness, and nausea but thankfully without vomiting. I am 17. I was diagnosed with episodic migraines when I was about 5 years old. I’ve had them ever since I can remember and my parents say that I started complaining of them as soon as I could articulate what was going on. I find the fact that chronic pain and illness in general is so unknown. But maybe that’s a side effect of such a widespread thing. All the people who experience it are forced to isolate themselves, so we don’t ever see them.

Migraine’s Impact on Sidney’s Social Life, School

This illness has taught me that I’m very comfortable being by myself and that I don’t need a constant companion to be happy. But, it’s a catch 22. I can actually be SO comfortable by myself that ‘alone time’ can stretch on until I’ve isolated myself too much. I will list the affected areas in the order they have been most impacted:

1) My social life. Since my illness started 4 years ago I have moved once. I had already lost most of my friends before I moved but I was able to hold on to 2 really essential people I care about. Since moving, I haven’t been able to make any friends.

2) School. I should be graduating this year, and the two really good friends I mentioned earlier are. But because of my migraines, I have fallen at least a full year behind on school, if not more.

Coping

migraine-teenager-dogsI would have to say that at this period of time, I’m not coping very well, and that my main coping source comes from my pets. My relationships have pretty much been beaten down to my parents. I’ve been surprised by how much closer this has brought me to my Mom, and how it’s made me realize how similar I am to my Dad. My parents show their support by continuing to put up with me. I don’t always (most always) make it easy and I can’t put into words how much I appreciate that simple fact. I have one really good relationship with a health care provider and the others are just okay. I really like my neurologist (who is actually a headache specialist), and the others (like psychiatrist and therapist) are supportive but not really knowledgeable of my illness. They each support me in the ways that they know how, and that’s all I can really ask for.

Nerve Stimulator: Relief… Until it Stopped Working

migraine-teenager-nerve-stimulatorI got the neurostimulator trial in June 2015. The electric leads go from the occipital area in the back of my head and over my ears to my forehead just above the eyebrows. [The leads are external, as this photo shows, only during the trial.] The rechargeable battery is about the same size as a pacemaker and was implanted in my non-dominant shoulder. My scar is about an inch long and is easily covered up. Usually for the first year, the stimulator needs to be readjusted for intensity and duration. This implant is very similar to what someone with chronic back pain would get.

During the trial and for the first few weeks I had the implant, my pain was kept at 5/10 at the most, and 0 pain at the least. I was singing hallelujah! Then after my grandmother died in the beginning of September, the stim stopped working. I don’t know if stress, or grief, or this crazy idea that my body learns to reject any type of treatment provided, but that was a big blow to take.

Now, for any of you that might want to check this out, there are two problems to consider: 1. You have to be referred or seen by a headache specialist. 2. The stim is VERY EXPENSIVE! My co-payment was about $10,000 with insurance paying much more. That being said, I hope there are some of you out there who can use find relief from this treatment.

Sidney’s Advice for Others With Migraine

My advice would be to make sure you like your provider and you feel that they are actually helping you. I’ve found that any Dr. I didn’t like, I didn’t feel was giving me proper support. Also, don’t be afraid to change providers if you’ve come to a standstill in your care. Even if you really like so-and-so, you need to actually feel like they’re helping you and things can get worse if this stops.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.