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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.

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Ketogenic Diet and Hypoglycemia

ketogenic-diet-and-hypoglycemiaGrief had me wide awake at 3 a.m. on Saturday, I was trying to figure out which chores I could cram into the 14 hours before I returned to the land of migraine disability. I had admitted defeat with the ketogenic diet. One more meal was all I had left on the diet; dinner would take me back to migraine as usual.

Ketogenic Diet and Hypoglycemia: Cause and Effect

Frustratingly, even though the ketogenic diet reduced my migraine attack severity and enabled me to be more functional, it also caused hypoglycemia—which is in itself a migraine trigger. Despite a month of various fixes, I couldn’t get it under control. (I’ve actually been wrestling with it for two months. That awful nausea I attributed to dehydration was actually hypoglycemia. The wrung out feeling I woke up with each day was the fallout from hypoglycemia-triggered migraine attacks that came on while I slept.)

How I Discovered Hypoglycemia Was the Problem

After increasing to 2500 calories to gain some weight back, I woke up each day ravenous and shaky. This seemed odd—how could I be hungrier than when I ate 1700 calories a day? Knowing that a ketogenic diet could cause hypoglycemia, I began researching. Not only did I discover that it was likely I had hypoglycemia, but the nausea and accompanying symptoms of the previous month fit the pattern of reactive hypoglycemia perfectly.

Reactive Hypoglycemia

Reactive, or postprandial, hypoglycemia occurs two to four hours after eating. It’s usually a crash after eating a meal high in carbohydrates. Although I wasn’t eating many carbohydrates, my blood sugar was so low the rest of the time that I’d crash after my meal each day. It would start two hours after the meal, but I’m so used to ignoring vague physical symptoms that I didn’t notice until they got bad. Which they did like clockwork six hours after eating every night.

Treating Hypoglycemia

The treatment of mild hypoglycemia is relatively easy: eat small, frequent meals and eat a dose of carbs whenever your blood sugar dips too low. The latter was obviously out (it’s hard to dose up with carbs when you are limited to 15 grams a day). The former didn’t work for me either, since I still had a migraine attack every time I ate, so I could eat no more than two meals a day.

Desperately Searching for Fixes

I spent a month trying every possible fix I could imagine: increasing from one to two meals a day, eating the same ratio with less protein and more carbs, a lower ratio, 100 calorie snacks that didn’t seem to trigger migraine attacks (they did, the attacks just built slowly), eating more in the morning, 1 gram doses of sugar, more calories… Nearly everything worked for a day, then became ineffective. I tested my blood sugar so often that my fingertips developed callouses.

Magical Thinking

An idea came to mind a couple weeks ago that sounded like pure magical thinking: What if I increasing my ratio to 4:1 (that’s 90% fat) made the diet more effective and enabled me to eat small meals without triggering migraine attacks? I ran it past Hart and my naturopath. They both agreed with the magical thinking hypothesis.

Going for Broke

I didn’t give up on Saturday. I was clinging so desperately to the good hours that I decided to give the 4:1 ratio a shot before calling it quits. I began yesterday by cutting my protein in half so I could keep a relatively high carbohydrate content for the transition period. By evening, I felt remarkably good. I managed three 114 calorie snacks in less than three hours without a migraine attack. A migraine attack didn’t even come on in the night.

Today’s meal plan increased the protein and decreased the carbs some. Four 114 calorie snacks later, no migraine attack ensued and my blood sugar was fine (still on the low end, but manageable). Things went downhill when I ate an actual meal—it triggered a migraine attack and my blood sugar tanked. Several small snacks helped me recover and I’m up and thinking again.

Research Soothes My Worries (a Bit)

Today I learned that a person’s blood sugar range tends to be lower on a ketogenic diet than it normally is. Anything below 70 mg/dL is typically considered hypoglycemic, but 55-75 mg/dL is typical on a 4:1 ketogenic diet. This isn’t a cause for concern as long as the person doesn’t have hypoglycemia symptoms. Also, it can take a full week for one’s blood sugar to stabilize when starting on or changing a ketogenic diet. That means all my dietary tweaks have probably done just the opposite of what I intended. (I am not a medical professional—PLEASE don’t take my word for any of this information. If you’re struggling with a ketogenic diet and hypoglycemia, work with health care professionals to determine the best approach for you. I’m being very careful and consulting with doctors and dietitians as I attempt this unorthodox experiment. Still I worry my low blood sugar is causing long-term harm to my brain. I’m seeing an endocrinologist next week and am going to try get yet another opinion from a neurologist at an epilepsy clinic. Maybe then I’ll find peace of mind.)

Optimism

Obviously, there are a lot of kinks to work out, but I feel like I’m getting closer to getting them sorted. Although most of my earlier fixes didn’t last long, they were all focused on increasing my carbohydrate content. Eating more frequent meals is a far more sustainable option—and one that seems like it could work. I’ve come close to admitting defeat countless times in the last two weeks. I have shed so many tears that I’m distrustful of possible indications of success. But the signs are promising, so I’m still hopeful.

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Migraine Stigma: The Paris Review’s Infuriating Contribution

“Everyone relishes a migraine. They have a literal aura! Migraines foster the sort of pure narcissism that only intense, essentially benign pain can. We sufferers (that’s how it’s described, “migraine sufferer”) feel it is meet and right that the migraine should be dramatized in films like Pi or White Heat; this strengthens the perception that migraines are the hallmark of geniuses, or at least psychopaths.

“[Joan Didion wrote,] ‘My husband also has migraine, which is unfortunate for him but fortunate for me: perhaps nothing so tends to prolong an attack as the accusing eye of someone who has never had a headache.’ I disagree. What migraine sufferer wants to share the limelight? After all, we all know in our hearts that no one in the history of the world has ever experienced basically unserious pain like we have.”

This excerpt from an article called Head Case appeared on the Paris Review’s blog. The first reading left me furious, but I thought I must have misunderstood the post. I read it repeatedly, trying to identify the satirical angle. I sent it to Hart to see if I’d missed something. Because the Paris Review wouldn’t publish something so trivializing of a disease that can be disabling. Right? Wrong!

My first reflections on Head Case overflowed with expletives and name-calling. That’s not my style, so I set the topic aside to revisit. Here’s what I came up with.

Writers write what they know. The writer includes herself among the “sufferers,” so I can only assume she’s writing about herself—that she relishes the attention she gets from migraine, that she thinks her pain is the worst in the world. Instead of owning her feelings, she projects them onto everyone who has migraine. Of she does. It’s far easier to claim everyone with migraine has such nasty thoughts than to admit that you alone are being a jerk.

Some people probably do relish the attention they receive when talking about migraine. Some do engage in one-upmanship (though I’ve only witnessed this on the internet, never in person). But these represent a tiny slice of people who have migraine. Most of us are nothing like this. Most don’t share our stories to get attention or prove our “genius.” We share our stories to show how incredibly difficult this disease can be to live with. We share our stories because so few people understand how disabling migraine can be.

Migraine stigma is so strong that some people, like the writer of the Paris Review post, internalize it. Instead of believing the severity of migraine attacks, they think they are exaggerating or lazy, that they’re making a big deal out of nothing. My personal experience has shown me this all too clearly. In July 2013, I wrote in a Migraine.com article called Internalizing the Stigma of Migraine:

“No matter how much I write about the needs of migraineurs and work to reduce its stigma, that very stigma has insinuated itself into my self-perception. It will continue to haunt me whenever I have a migraine attack until I accept in both my mind and heart that I am not deficient or lazy, but have an illness that is in no way a reflection of my personality, desires, or attitude.”

I wrote those words almost exactly 10 years after migraine rendered me unable to work and eight years after I started this blog. I didn’t apply migraine stigma to anyone else, only to myself—and did so for years after I knew intellectually it wasn’t true. I have finally shed that internalized stigma, but cannot forget how how fervently I once believed it.

After my initial draft of nastiness, I began to pity a person who would publish such hateful things about herself. I’m still angry and find her pitiful, but it is tinged with compassion and sadness. I feel for someone who turns on herself because she has internalized this stigma. I’m sad that so many of us have done just this. But my empathy only goes so far. I cannot forgive someone for furthering that stigma by publishing such vitriol on the website of a revered literary journal.