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Your Stories: Catie, a College Student With Chronic Migraine

What’s your story? Send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

Catie, a college student with chronic migraineCatie is a 20-year-old college student who has had chronic migraine her entire life. She remembers her first attack at age three, but was not diagnosed until she was five. In writing how migraine shapes her life, she said, “Because I have been dealing with this for my entire life I have no idea what normality feels like, but I also have no idea what kind of person I would be today without it. Having to push through the pain has made me a diligent student and a more empathetic human being, and it has also taught me the value of self-care. Additionally, migraine has given me direction as a student of public health, and in the next few years I hope to do research on the relationship between chronic disease and mental health.” It was a pleasure getting to know this vibrant young woman.

Do you feel like you’ve missed out on school experiences because of chronic migraine?

I don’t necessarily feel like I’ve missed out on anything, but there are definitely certain college experiences that I can’t have as a migraineur. For example, I know that if I want to take care of myself I can’t drink a ton of coffee and pull an all-nighter or go out drinking and partying, because these situations all involve triggers for me. And while I don’t exactly long to partake in these activities, I often feel that I have a difficult time relating to my friends whose lives seem to revolve around them.

How do you manage school with chronic migraine? Do you have any tricks for making it easier? Do you manage differently in college than you did in high school?

I’ve found that managing college with chronic migraine is surprisingly doable so long as I keep in mind that life has not afforded me the luxury of procrastination. Because I have no way of knowing when a particularly bad attack will come on, I always make sure my work is done a few days in advance of the due date. Doing this helps prevent migraine from affecting my grades and holds me to the same standards as everyone else, which is important to me.

In my opinion, college is a much easier environment to navigate as a migraineur than high school. One reason for this is that college assignments are always given far in advance of the deadline. In high school, one bad attack could be enough to affect my grades since homework was due just a day or two after it was assigned. Additionally, college gives me the autonomy to decide if I’m feeling well enough to go to class or if I need to leave to take my medication. In high school, I didn’t get to make these decisions for myself, and that often resulted in delayed medication and worse attacks. Finally, in college all the course material—including PowerPoints and often lecture recordings—is posted online, so I am at less of a disadvantage if I do need to miss class.

What coping strategies do you use to deal with chronic migraine?

The most effective coping strategy for me is to think of all the positive ways migraine has impacted my life. Sure, migraine has caused me incredible amounts of pain over the years. But it has also profoundly influenced who I am. Migraine has helped shape me into a diligent student and a resilient, empathetic human being. I don’t know who I would be without migraine. So every time I have an attack, I have to tell myself that I’ll come out of it a little stronger. I hope that one day I won’t have to live with migraine. But I also have to accept the likelihood that it will always be a part of my life, and I have to be okay with that.

What symptoms bother you the most?

The pain is by far the worst part. It honestly feels like a thunderstorm in my head. I know how little sense that makes to most people, but I don’t know how else to describe it. I can feel the throbbing just by placing a finger on my temples, and the pain gradually centers above my right eye and becomes increasingly intense. It really feels as if the pain has no limit, and it’s very frightening.

What do you wish people knew about migraine?

I wish more people understood that migraine is a chronic disease that can affect a life as profoundly as diabetes or epilepsy. I think people tend to see migraine as a singular event, and that just doesn’t match up with my experience. So much of my life is centered on trying to avoid the pain. So when people who have had a few bad headaches claim that they “know exactly what I’m going through,” that feels really unfair to me.

What else would you like to share?

I would just like to share this photo of myself and my boyfriend, Nick. Nick has been phenomenal in helping me cope with migraine over the past couple years. He is known for spending entire Friday nights lying next to me in a dark room and for reminding me that my migraine attacks are not my fault—not even the ones that follow a moment of weakness involving a Starbucks latte (my biggest and most tempting trigger). I’m so grateful to have that kind of support.

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Doing the Impossible With Chronic Illness

For context: I wrote this on January 30, when I had a couple decent hours between migraine and constant dizziness. I just got to the edits this week, but still wanted to share it even though it is no longer timely.

January has come to be my month of self-reflection. In the last 13 years, it has brought major health-related highs and has also been when I’ve hit some of my lowest lows. Combined, these divergent experiences mean January represents both devastation and elation for me. It is odd to spend one month each year in intensive thought about some of the best and worst times of my life. The last couple years, my reflections have filled me with enormous gratitude, especially this January as I reflect on what an incredible year 2014 was for me. Prior to late 2012, when the first January high happened, they were heartwrenching.

In this state of reflection, I’d already been thinking about the last time I truly wondered how I would get through another day. After a Migraine.com reader’s comment, I looked up what I wrote about that day. From January 2012:

“People cry, not because they’re weak. It’s because they’ve been strong too long.” The National Headache Foundation posted that on Facebook last week, right when I was wondering how much more I could possibly endure. I’d had five weeks of nearly perpetual migraine and I was well beyond the end of my wits.

Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours. My sweet husband held me and told me that even if I was too exhausted to fight, he was not. He told me not to underestimate my own strength. He told me that even if my life is harder than it has any right to be, it is a life worth living. With his kind words and solid grasp, Hart reignited my courage and determination.

It’s hard to believe that was only three years ago. It feels more recent and also much farther away.

I received a mass email yesterday that said, “Think you’re past your prime? Think again! According to this infographic, more than 90 of these 177 innovative minds created their masterpieces or made their discoveries between the ages of 30 and 40 years old.” Great! I’m not past my prime yet, but I better get moving because I will be in less than two years. The email was not directed at me personally, nor did I take true offense, but it has me thinking about time and perceived social value. I essentially lost a decade of productivity and career-building in the so-called prime of my life. Given that, I’m proud my writing has had an impact on some people’s lives, but I still feel like my masterpiece is in the planning stages.

I wasn’t out taking on the world in my 20s and 30s, I was taking on the more pernicious and potentially devastating foe of disabling chronic illness. To have survived that, to have found effective treatments when I thought there were none, to have created a sense of peace and happiness when I could barely move, I have proved myself far more capable at taking and transforming whatever life has to bring than I would have in any career.

As another January of reflection draws to a close, after having felt better in the last year than I thought possible, I’m amazed at what I have accomplished. I found an effective treatment. I kept going day after day through years of severe pain, mind-numbing cognitive dysfunction, bone-leaden fatigue, nausea so strong I couldn’t keep weight on, and numerous other types of physical disability. I fought to find any semblance of joy in that life. Those accomplishments won’t put me on any infographics or have anyone calling me an “innovative mind,” but they compose a pretty stunning masterpiece.

Well, one of my masterpieces. I have more in the works and have no doubt I’ll succeed. I’ve already shown myself capable to doing the impossible.

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Chronic Migraine and the Changed Brain: Will it Ever Go Back?

It’s interesting to think of what my doctor told me about the brain changing during a migraine attack in the context of chronic migraine. The longer I go without having a migraine every moment of every day, the less invasive my day-to-day symptoms are. Smells don’t always trigger migraine attacks (though most still smell too strong), I’m not bothered by sounds as much, I’m able to take my TheraSpecs off when I’m at home and not looking at a screen. It’s more than just not being in a migraine at the time—it’s that my brain finally gets to experience what it is like to not have a migraine.

“Migraines beget migraines” is a saying that used to give me a chill. The idea is that the more time you spend in migraine attacks, the more your brain learns that migraine is the place to be. If you have frequent enough attacks, your brain decides it’s supposed to be in a migraine state and that becomes the new normal. (Yes, I’m anthropomorphising the brain. It’s the clearest way to explain this complicated topic.) I always worried that my brain would never revert, that I’d never been migraine-free again. Fortunately, I’ve learned that’s not necessarily true.

Just like the brain can learn a pattern of migraine, it can unlearn it. Whatever slows down your migraine frequency helps this process along. This happens in a variety of ways, though preventives are a big part of it. When most people think of migraine preventives, they think they’ll need to stay on them for the rest of their lives. In reality, most people only need to be on them for a little while. (The length depends on how severe and frequent your attacks are, how long you’ve had them, and how your symptoms shake out, among other things.) Once your brain learns frequent migraine isn’t the place to be, it stops churning them out. It’s like a boot camp for your brain, a intense short-term training session.

Chronic migraine is stressful enough without adding worries that your life is irrevocably changed. Although it’s hard to keep those thoughts at bay, I hope my story is a little reassurance that it can happen. My brain is a long way from unlearning migraine, but it continues to forget more and more of the migraine pattern. With as severe as my migraines attack were for so long and with the presence of so many food triggers, I don’t expect I will ever be migraine-free, but I can finally see how I might one day have episodic migraine rather than chronic. That’s nothing short of amazing.

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Dietary Supplements: Does the Bottle Contain What the Label Says?

Do store brands of dietary supplements contain the ingredients the labels claim?, asked scientists from The New York attorney general’s office. In analysis of supplements from Walmart, Target, GNC, and Walgreens, they found that only 21% of the supplements did contain the ingredients listed and that “most” contained ingredients not included on the label. The resulting response has included furor over the attorney general’s testing methods as well as people claiming that these results support what they knew all along. Amid all the outrage, some interesting points have caught my eye. Here’s what I found most interesting:

How Not to Test a Dietary Supplement in The New Yorker examines whether DNA barcode testing is an accurate way to assess the ingredients of supplements. (Tammy Rome, an herbalist and writer for Migraine.com, argues that it is not.)

Your Vitamins May Be Lying to You: Why Big Herba is Out of Control, in Salon, carries important information far beyond the sensational headline: “The very same mega-companies with gigantic chemical labs that make drugs are cooking up vitamin and herbal supplements labeled with sunny terms like ‘natural’ and ‘wholesome.’ Pfizer, Unilever, Novartis, GlaxoSmithKline and other big pharmaceutical firms make or sell supplements. Procter & Gamble Co. and Arm & Hammer are also in on the action. Wall Street is getting in on the game, too: the Carlyle Group, a private-equity titan, owns NBTY (formerly Nature’s Bounty), whose brands include Nature’s Bounty, Sundown Naturals, Puritan’s Pride, and Vitamin World.”

People take herbs and supplements for a variety of reasons, only one of which is distrust of the pharmaceutical industry. Still, if that’s important to you, then you’ll want to do careful research to find out if you’re supporting Big Pharma when purchasing supplements. Other people will seek out supplements sold by pharmaceutical companies, assuming that they have more rigorous scientific and safety standards than smaller, less known companies.

In Be Careful Where You Buy Your Herbal Products!, headache specialist Alexander Mauskop, M.D., discusses the supplements he recommends and says that his preferred brand is Nature’s Way.

As so often happens, I’m left with no answers, just more questions. First, what about non-store brands? Does Nature’s Way, for example, contain the DNA of the listed ingredients? If so, it supports the idea that store brands could be lacking, though even that raises additional questions. If not, we’re still left to wonder if the testing methods were inaccurate or if all supplements or bogus or something in between. Also, if the pharmaceutical industry plays a large role in the supplement industry, does that make supplements more or less reliable, or does it make no difference? From my reading today, it appears that how you answer that question depends on your beliefs about Big Pharma. Finally, does this even matter? Will it change consumers’ purchasing behaviors? Will it just increase the divide between those who think supplements are the best and those who believe they’re hogwash? Will people become even more invested in their existing opinions, as studies have found happens when people who are anti-vaccination are shown pictures of children with the disease they aren’t vaccinating for?

What’s your reaction to the news? Will it change the way you think about supplements or where you buy them?

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A Health Insurance Rant

health-insurance-rantTearing up over a headline on the cover of People magazine, which I happened to glance at when I walked past it at the pharmacy, was the telltale sign that depression symptoms had returned. I was already pretty sure they were back, it’s why I was at the pharmacy.

Although I was perfectly mostly happy with Wellbutrin, I had to reduce my dose because, thanks to a migraine attack, my brain is now so sensitive to Wellbutrin’s side effects that I am massively dizzy on the dose that manages my depression. Cutting my dose back, the dizziness finally became manageable (though still present) on Monday… at the same time it stopped keeping the depression at bay.

I’m already frustrated by the needs of my ever-changing brain, but I was hopeful a new antidepressant would help me balance all my competing needs. Or I was until my insurance denied coverage. Now my doctor has to jump through constantly moving hoops to prove that, yes, this is the drug I need.

While I wait to see if her appeal will be approved, I can either be so dizzy that I can’t move my head and can’t look at the computer or I can let my depression symptoms build so that I have no motivation to get out of bed and cry at everything. Either way, I can’t work, can’t run errands, and can’t do anything around the house. I could try another yet another generic antidepressant, though I’ve already tried many, and would have to decide which I prefer, potentially gaining a ton of weight or losing interest in sex.

I don’t have much faith in my doctor’s authorization being accepted. Since the first of the year, Hart’s been working on a getting a doctor’s authorization approved for a drug that I was told would definitely be covered under our plan. It’s a drug he’d been taking for months, paid for by the same insurance company, until the rules changed with the turn of the calendar page. Now he’s without a drug he needs. There is a replacement, a replacement that he’s already tried. Last time it increased his migraine frequency so much that I lost sleeping worrying that he was developing chronic migraine.

I miss the days when my doctor and I got to weigh all the relevant medical factors and decide which medication was right for me. Yes, I could pay for these drugs out-of-pocket (assuming I could afford them), but I already pay a small fortune for health insurance each month. Being told a service will cover what I need, tethering myself to that service for a year, and still having to wheedle and cajole to get what that service supposedly includes is absurd. Especially when all that time spent on the phone and submitting paperwork is unlikely to result in me getting the coverage I thought I was paying for. Tell me up front whether the treatment I need will be covered so I can make a fully informed decision, don’t lock me into something then change the rules.

That’s what I’m angriest about. I understand why insurance companies don’t cover certain drugs or treatments. Yet I did everything I could possibly do to make an informed decision, including 17 hours of research, questions for my insurance broker, and hours on the phone with the insurance company. Now I have a yearlong commitment to a health insurance plan that’s not providing the coverage I was assured they would provide.

I get that health insurance is a mess right now. I get that companies are scrambling to make a profit now that they have to provide coverage to people like me. And I am grateful to be able to have any insurance coverage for my entrepreneur/freelancer household. But how is that companies are able to provide only basic information for a consumer to use to choose a plan, give half-truths (or lie outright) when asked questions, then delay coverage for months? I can’t think of another consumer service that operates this way successfully. Certainly not one that requires a commitment to paying thousands of dollars over the course of the year, then telling the customer, “Oh, wait, we’ve changed our minds.”

How is this OK? How can that happen without repercussions?