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An Unexpected Pep Talk (Following Some Reflections on Wellbutrin, Migraine)

After crying over the royal family, I knew I needed an antidepressant sooner than it would take to convince my insurance company to cover Viibryd. Since the dizziness had almost subsided and I didn’t want to wait to get a prescription for yet another drug, I tried increasing my Wellbutrin dose to what it was before the four-day migraine attack in January. No additional dizziness. In fact, it finally stopped the residual dizziness that had kept me unsteady. I’ve been back at my pre-migraine dose for two weeks and am doing fine.

I’m frustrated with the constantly moving target that is my health, but I’m also fascinated by it. The migraine attack changed my brain and, through my reaction to an unrelated medication, I was able to see my brain change back to it’s pre-migraine state. I knew that would happen, but being able to observe it was unusual.

It’s just one of the many changes I’ve been able to observe in my body now that I don’t have a migraine all the time. I can feel fine, but if my feet are freezing, I know I’m in the early stages of an attack. I can be writing for hours and thinking at full capacity, then notice that constructing sentences has suddenly become difficult. Even when eating doesn’t trigger a migraine attack, it can hint at one for a while and I’ll have to stop working until it resolves, which is usually does within an hour without medication. These are just a few examples of the many new reactions I can see in my body.

It would seem like someone who has had chronic migraine for as long as I have would have figured these things out by now. That was impossible, though, because the migraine attacks never stopped. I didn’t have a clear idea of my prodrome symptoms because I never knew when a migraine was ramping up again. I had experienced the metal fading before, but only recognized it when I was already deep into the attack. Now I notice within a few minutes after the cognitive dysfunction begins.

Despite knowing that identifying triggers and prodrome symptoms would be crucial to managing attacks, it seemed like an elusive, if not impossible, goal for most of my time with chronic migraine. I kept trying, even though it was terribly frustrating and I had a lot of misattributions along the way. I’m glad I did. It’s even more valuable that I imagined it would be. I’m more able to avoid migraine attacks now that I was even a year ago and I can take triptans at the earliest possible moment, which reduces the total time I spend in a migraine attack. At least once a week, I take a triptan and only slow down for 30 minutes before I’m fully functional again. I had a “bad” one yesterday—at least really bad for how they get these days—the pain hit a 6 and I was down for six hours. That’s a Sunday drive compared to how they used to be.

I still credit DAO with most of my improvement and my diet is second, but the benefits of knowing triggers and prodrome symptoms continue to increase. With 40 foods in my diet still and only adding two new foods in the last seven months, I often feel like I’m stuck. Then I remember how much shorter my attacks have become and that my cognitive impairment has decreased so much that I’m able to write through more migraine attacks than I’ve been able to in at least eight years. I’ve changed nothing treatment-wise since September, yet, on average, each month is a little better than the last. It’s a slow, slow climb, but I’m still climbing.

I always worry that I sound like I’m bragging or showing people up when I write about my improvement. I share it so you can know that improvement is possible and that even when if feels like you’re totally stuck, you could be making progress that you can’t yet see. When you feel terrible physically, it can seem like you’re failing yourself by not actively searching for and trying new treatments. Sometimes holding on is the best you can do for a while. I know that’s terribly clichéd, but it’s meaning is exactly what I wish to convey. Know that it won’t always be this bad. Instead of criticizing yourself, try to give yourself some love. You need it and deserve it.

That turned more “rah-rah” than I expected. I won’t delete it because it’s something I wish I’d come across five years ago. Since I’m a cheerleader baring my heart, I want to add this: I may not know you by name, but I do think of you all and wish the best for every one of you. I haven’t been in the exact place that you’ve been in, but I’ve lived through years that I have no idea how I survived. I believe you can do it, too. It may not feel like it, but you can.

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Regular TENS Unit Instead of Cefaly?

Cefaly“Can I use a regular TENS unit instead of Cefaly?” I’ve been asked this questions so many times that I know others are curious and haven’t asked. I can’t give you a direct yes or no, but here’s what I’ve seen headache specialists say about it.

Writing for the American Headache Society, headache specialist Brian Plato, D.O, says, “It should be noted that “regular” TENS units should not be used in place of the Cefaly.” He does not explain why.

Headache specialist Alexander Mauskop, M.D., said in a comment on my Migraine.com post about Cefaly, “My patients haven’t had much success with Cefaly. To save them money, I suggest that they try a regular TENS unit, which can costs as little as $50. It is not as cool-looking or convenient, but it offers more options in adjusting the current, frequency of stimulation and duration.”

Dr. Mauskop wrote on his blog that he was unsure whether Cefaly has an advantage over a regular TENS unit. He speculates that Cefaly could be better because of its convenience and that the current “may have specific frequency, strength and wave shape, which provides better relief. However, an electrical engineer could easily hook up the Cefaly unit to a monitor and figure out and publicize these settings.” (To my knowledge, no one has done this.)

Many patients point out in forums that their doctors and the instructions with their TENS units say not to use them on your head. One said that a regular TENS unit may be too strong for the forehead.

That’s all I can tell you. I cannot give a direct recommendation either way. Even if I could, I don’t have enough information to form a solid opinion. My best advice is to talk to your doctor about it.

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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.