By Kerrie Smyres | November 22, 2013
Many thanks to everyone who donated to my birthday fundraiser to benefit the American Migraine Foundation’s 36 Million Migraine campaign! I appreciate your thoughtfulness and everyone with migraine appreciates your support.
You raised 28% toward the $1,000 goal and the fundraiser is still open. If you haven’t joined us yet, please consider donating today. Your donation doesn’t need to be large. In fact, if every American with migraine donated just $1, $36 million dollars could go to migraine research.
Some astonishing facts about migraine:
- Migraine is the third most common disorder on the planet.
- It is the seventh highest cause of of disability globally.
- It is by far the most disabling neurological condition worldwide.
- 36 million Americans have migraine. Most have three or fewer attacks each month, but 3% have chronic migraine.
- Migraine costs the United States more than $20 billion each year in direct medical expenses and indirect expenses, like missed work and lost productivity.
- Less than 1/20th of 1% of the budget of the National Institutes of Health – about $16 million a year – is allocated to migraine research. $260 million would more accurately reflect the prevalence and magnitude of migraine.
By Kerrie Smyres | November 21, 2013
People say that you don’t notice how many pregnant women are in the world until you’re pregnant yourself. I’m finding a similar phenomenon now that I’m depressed again — I barely thought about depression for a couple years, but now that it’s back on my mind, I’m noticing articles everywhere. Three very different, very interesting articles on depression have caught my eye this week.
Why Don’t Antidepressants Work Faster? (Slate)
I’m pretty sure anyone who has taken antidepressants has wondered this very thing. This informative article from a Scientific American writer is easy to understand, but doesn’t skip over important scientific information.
Sleep Therapy Seen as an Aid for Depression (New York Times)
A newly published study found that helping depressed people overcome insomnia with a ”cheap, relatively brief and usually effective” form of therapy could double their chances of a full recovery. The technique uses specialized cognitive-behavioral therapy and sounds kind of like typical sleep hygiene recommendations, but is actually quite different, according to researchers.
Gut Bacteria Might Guide the Workings of Our Minds (NPR)
Researchers are investigating whether the bacteria in our digestive systems could influence our moods and behaviors. Such a fascinating idea.
By Kerrie Smyres | November 20, 2013
Standing up for myself and having difficult conversations is something I haven’t done much of in, oh, 15 years. Doing these things has always been an effort for me, but I managed to do it fairly effectively before migraine overwhelmed me. Since then, all of my energy and emotional wherewithal have gone toward managing migraine. Added to those obstacles is the fact that migraine compromises my ability to think and find the words to express my needs. Simply put, I’ve been too exhausted and brain-fogged for the work of of conflict and difficult conversations.
It’s a big problem. It has reached nearly every area of my life, from store clerks and customer service reps, to coworkers, to friends and family. I’ve berated myself for being a doormat and felt like my place in the world had shrunk to almost nothing. Disappointments and frustrations mount and I feel like I have no voice. It’s not an emotionally healthy way to live, but my physical health has left little room for emotional self-care. I’ve been reconnecting to my emotional self and relearning those self-care skills since April, which has been hard, rewarding work.
I got to put that work into action yesterday by standing up for myself to the massage therapist I’m seeing for craniosacral therapy. My first sessions with her were great, but in the last two, she started some emotional therapy-type work and visualizations that were not OK. She meant well, but her technique left me feeling emotionally violated and unsafe. Instead of canceling my remaining appointments and never seeing her again, which was my instinct, I called her and established new “ground rules.” Confronting her was as much about the need to assert myself as it was about wanting to continue craniosacral therapy with her.
It’s only one step and was a relatively easy one, since I was pretty sure she would be receptive. Still, it’s one more step toward feeling like I’m a whole person who occupies a valuable place in the universe, not a migraine zombie.
By Kerrie Smyres | November 19, 2013
Friday and Saturday are crammed full of sessions at American Headache Society symposium, Sunday is the American Headache & Migraine Association patient conference. I’ve been fretting for days about how I’m going to feel over the weekend and which sessions I’ll be able to attend.
The worrying was initially disguised as planning:
- Which talks do I most want to hear?
- Should I conserve energy for the patient conference or go all out at the symposium?
- Do I go to the Saturday night cocktail hour and mingle or rest?
Those are all reasonable questions but they devolved quickly into worrying:
- I haven’t been able to get out of the house before 1 p.m. in weeks, how can I expect to make it to the meetings?
- Will I even have enough stamina to commit to a few hours Friday and Saturday and all day Sunday?
- The forecast shows rain for the weekend, will I be able to attend anything?
- I hope I don’t waste the money I spent to attend the symposium?
- Will I even be coherent when I meet people at the patient conference?
- Will I even be able to stand at the patient conference?
Stressing out now is not going to improve my chances of having a successful weekend, so I’m practicing mindfulness to keep myself calm and grounded. When I catch my mind churning, I remind myself that I can’t know what will happen this weekend until it arrives and that right now is the only moment that matters. I bring myself back to the present, close my eyes, and breathe for a few minutes.
This strategy kept me from getting worked up yesterday and I’m determined to keep practicing mindfulness throughout the week. Maybe reducing my stress will give me a better chance at being able to attend all the sessions I want to. Maybe not. At least I’ll know I attempted to live in each day this week rather than giving my moments over to fears about something I cannot control.
(And I hope that committing to a mindfulness practice publicly will help me stick with it.)
By Kerrie Smyres | November 18, 2013
I’m so excited about my upcoming blog redesign that I couldn’t wait to tell you about! The new design is easily accessible on mobile devices and also looks great on a computer screen. It’s also easier on the eyes, simpler to navigate and more streamlined the current design.
The redesign has been a couple years in the making as my migraine schedule and brain fog have dictated my ability to work on it. Now that it’s almost ready, I’m thrilled and looking forward to sharing it with you soon!
(Three exclamation points in one post may be a record. Even that doesn’t seem like enough to convey the depth of my excitement.)
By Kerrie Smyres | November 17, 2013
Wondering what to do in Phoenix/Scottsdale while you’re here for the American Headache & Migraine Association patient conference? Here are some highlights within a free shuttle ride from the Hampton Inn.
Food (listed in order of where I’d eat if I were visiting)
- Pizzeria Bianco — This wood-fired pizza place has received rave reviews nationwide, including from Martha Stewart and Oprah. The original location boasts at least two-hour waits, but the new Town & Country restaurant often has no wait, even on weekends. It’s not cheap and the service gets spotty reviews on Yelp – and it’s so delicious that I still recommend it. (And you can walk here from the Hampton Inn.)
- Beckett’s Table — My favorite restaurant in town. On the expensive side (for Phoenix), but well worth the price for perfectly prepared American and comfort food made with local, seasonal ingredients. Dessert offerings include s’mores with chocolate-covered bacon.
- America’s Taco Shop — Excellent, relatively inexpensive Mexican street tacos (and burritos, tostadas and tortas). The meat’s the star here, though I’ve heard the vegetarian burritos are good, too. A casual, order-at-the-counter spot.
- Los Dos Molinos — New Mexican food. Spicy and delicious.
- Chelsea’s Kitchen — With old-growth trees, climbing bougainvillea, and a huge outdoor fireplace, this is one of the best patios in town. Good food, though pricey (part of what you pay for is organic and/or grass-fed meat). Only worth the cost if you can sit outside, IMHO, and the indoor dining space is loud.
- Oregano’s — Calls itself “your neighborhood pizza joint,” but has a variety of pasta dishes, salads, and sandwiches. The decor is quirky and the food is tasty, it’s also fairly loud and there’s usually a wait.
- La Grande Orange — Serves food all day, but breakfast is the best, particularly the housemade English muffins and sticky bran muffin.
- Ajo Al’s — Typical Tex-Mex, fairly heavy and usually cheese-laden. And yummy.
- If you’re a bargain clothes and accessories shopper, check out Nordstrom’s Last Chance. It’s the final clearance shop for Nordstrom and the prices are dirt cheap. Be forewarned: it’s often crowded with long lines.
- Camelback Colonnade, where Last Chance is located, also has a smattering of discount chain stores, including Old Navy and a nice Marshall’s.
- Biltmore Fashion Park is mostly high-end stores and boutiques. It’s a fun place to wander around and has a ton of restaurants to choose from.
- Arizona Biltmore Hotel — Designed by a student of Frank Lloyd Wright, this beautiful hotel was built in 1929. You can wander the grounds, take a guided tour, eat at one of the restaurants, or even visit the “secret” Sunday speakeasy (password required, find it on Twitter @Arizona Biltmore).
If you have a car…
- Desert Botanical Garden — This is a stunning botanical garden that showcases the diversity of desert plants. Even better, there’s currently a Chihuly glass exhibit. Chihuly’s work is always spectacular, but it’s extra-special with desert as the backdrop.
- Hiking — Only a short drive from the hotel, Camelback Mountain, Piestewa Peak/Dreamy Draw, and Papago Park are beautiful places to experience desert landscapes without leaving town. South Mountain is farther, but also a little more isolated and nature-y.
By Kerrie Smyres | November 14, 2013
You’ve heard of a bucket list, but how about a “f*#k it” list? This brilliant idea comes (to me at least) via the story of a woman in her late 80s who is no longer working on a list of things to do before she dies, but is now focused on her “f*#k it” list — a compendium of things she’s ready to let go of.
Why wait until your 80s to start such a list? Life is short and it’s so easy to get bogged down in trivialities that don’t really matter. Letting go of unnecessary worries, heavy thoughts, and should-haves and could-haves would lighten the load for the rest of your journey.
As the good ideas always do, a “f*#k it” list strikes me as a particularly clever tool for someone with a chronic or life-altering illness. Our day-to-day lives are already laden with frustrations and limitations and many headache disorders are exacerbated by stress. Letting go of the unwanted, unneeded strain is good for both emotional and physical health.
Like with a bucket list, accomplishing the items on a “f*#k it” list might seem difficult or even impossible. But you can’t start letting go of something if you’re not aware that you’re holding onto it in the first place. Writing them down at least gets you started on releasing your grasp.
Already on my “f*#k it” list: shoulds, self-blame, self-hatred, self-doubt, judgements about myself and others. That’s certainly a tall order, but I work on each of these nearly every day. Maybe by the time I’m in my late 80s, they’ll no longer occupy space on the list.
(I apologize if you’re offended by the language. The title is just too good to resist.)
By Kerrie Smyres | November 13, 2013
Ever wonder why migraine sometimes has an S on the end sometimes and sometimes doesn’t? Migraine or Migraines?, my latest Migraine.com post, explains why this is and when each one is correct. Here’s an excerpt:
Which word is correct, migraine or migraines? The answer is both, though the two words have different meanings. Migraine without an S means the underlying neurological disorder. With an S on the end, migraines refer to the individual attacks that a person who has migraine experiences. A parallel without the confusing verbiage is epilepsy and seizures — a person who has epilepsy has seizures, a person who has migraine has migraines.
By Kerrie Smyres | November 11, 2013
I resisted going off the supplement that was causing depression-like symptoms, then I resisted starting antidepressants when I realized the depression hadn’t lifted. I told myself I didn’t want the side effects of antidepressants or to complicate my migraine variables. Those excuses are partly true, but mostly I didn’t want to acknowledge that I’m depressed enough to require medication.
The day I started back on Wellbutrin, my mood lifted. The antidepressant medication didn’t change my mood in a single day; the decision to take care of myself did. I don’t want to be depressed, but wishing it away is a fruitless endeavor. Instead of continuing to hide from the truth, I both recognized and accepted the depression and chose to treat it in the only way that’s ever been effective for me.
I am not out of the woods. It will take weeks to ramp up to a full dose of Wellbutrin and could take even longer to know how well it’s working for me. If it doesn’t, I could spend months trying to find the right medication (or medications) and dose. As I’m figuring all that out, I can take comfort in my decision to start taking antidepressants.
Self-care often falls by the wayside when a person is depressed. It doesn’t help that depression saps one’s motivation and hope. Overcoming all these factors makes for a gigantic first step. I’m proud of myself for taking it.
By Kerrie Smyres | November 8, 2013
If your headache disorder tends to flare up during the holidays or you get so stressed about getting everything done that you wind up harming your health, it may be time to rethink your holiday traditions. Start planning now to scale back the stress and fatigue of holidays while still honoring your most important traditions so you can join in the revelry instead of curling up alone in a dark room.
Read my suggestions in Holiday Traditions on Migraine.com.
By Kerrie Smyres | November 7, 2013
Maybe the 5-MTHF was the depression trigger, but it was presumptuous to conclude the supplement was the only factor for my depression. I felt great for a few days after discontinuing 5-MTHF, then the depression returned, building each day until I awoke at 4 a.m. Monday morning to suicidal ideation. Don’t worry, suicide is not on my agenda and I’m fully aware these are not my own thoughts, but are fueled by depression. I’m not going anywhere, but it’s still terrifying to have these thoughts pop into my head.
So, after slowly tapering off antidepressants over three years, I’m back to them. I haven’t started any yet, but I’ve requested a Wellbutrin prescription from my therapist/naturopath (fortunately, naturopaths have full prescribing rights in Arizona). I chose Wellbutrin because it has fewer sexual side effects than other antidepressants, it has been effective for me in the past, and it’s relatively easy to taper off when I’m ready to stop taking it.
Even yesterday I was resistant to starting another antidepressant. It’s not that I’m against medication, but I don’t look forward to adding any more side effects to my life and I’m already juggling so many migraine-related variables that I’m reluctant to add one more factor to the mix. Still, the constant teariness and feelings of hopelessness, not to mention suicidal ideation (which hasn’t happened since Monday morning), aren’t doing me any favors.
I’m a little quieter than usual and now you know why. Contrary to my typical depression pattern, I’m still writing a lot of drafts, though getting them to a publishable state is beyond my current ability. I’m sad and frustrated and in a mental fog, but I’ll be OK. I’ve been through much worse depression before and feel fortunate to have caught this one fairly early. I’m also grateful to have an excellent therapist to help me this time around. Please don’t worry about me, though I always welcome your good thoughts, positive energy, prayers, or whatever it is you offer to others in times of need. I really will be OK, I just need some time — and some drugs — to get there.
By Kerrie Smyres | November 4, 2013
Imitrex manufacturer GlaxoSmithKline has recalled pre-filled Imitrex syringes from from lots C637078 and C632842. Syringes from these lots have a packaging defect that could make them non-sterile, thus putting patients at risk of infection.
Do not use medication from either of these lots! If you have unused medication from lot C637078 or C632842, return it to your pharmacist or call GlaxoSmithKline at (800) 387-7374 for more information.
By Kerrie Smyres | November 1, 2013
Planning on attending the American Headache & Migraine Association patient conference in Scottsdale, AZ on Nov. 24 and haven’t booked your hotel room yet? The Hampton Inn’s special rate of $85 (plus tax) per night is only available through tomorrow, Saturday, Nov. 2. Rooms include two double beds, a refrigerator and microwave, plus complimentary breakfast, a free shuttle within a three-mile radius, and transportation to and from the conference on Sunday.
This is a great rate for a nice hotel in a convenient part of town — tons of great restaurants and shopping are nearby, and there are even a few grocery stores within walking distance. Be sure to book today (or tomorrow) to secure this rate.
Looking to share a room with other conference attendees? Check the members-only AHMA forum to find roommates. Members are also planning outings while in Arizona, like a trip to the Grand Canyon — check the forum to join up.
By Kerrie Smyres | October 31, 2013
All that gnashing of teeth about my diet? Turns out it was fueled by depression-like symptoms caused by a supplement called 5-MTHF (methyltetrahydrafolate), which I started six weeks ago. Yes, the diet still sucks. It sucks that I continue to feel worse whenever I introduce a new food. And it sucks that I have to choose between malnourishment and having more severe, more frequent migraine attacks. But, since stopping the supplement, I’m no longer reduced to tears thinking about it and I no longer fear I’ll forever be trapped in this dietary mess. Even better, I have hope for the data gathered through this experiment and the possibilities of treatments that are on the horizon.
Depression of any provenance is miserable, but being able to stop the depression symptoms just by not taking a supplement is better than the best gift I’ve ever received. Depression that stops within days of stopping a supplement, no antidepressants or their side effects necessary? That feels like a miraculous recovery.
P.S. I’m working on a post about 5-MTHF and my reaction to it — which is particularly relevant because it is part of the vitamin combination Australian researchers are testing as a treatment for migraineurs with a certain genetic mutation — but I don’t have the mental ability to edit it right now. That’s mostly due the the nasty migraine that struck last night… only a few hours after I finally got a reprieve from a six-day-long migraine. The great news is that despite these migraines, my mood is good and my outlook is positive.
P.P.S. Speaking of fabulous gifts, check out these bear rug coasters Hart gave me for my birthday. Perfect for anyone in need of a smile. It helps to say “splat!” whenever setting a glass down on one.
By Kerrie Smyres | October 28, 2013
“Sometimes the accumulation of his silence seamed to heap upon him, as slowly as snow, until he felt he could no longer be seen.” –Mr. Panicker (a character in “Aerogrammes,” by Tania James)
And sometimes I lose my breath when lines in a story are so applicable to life with chronic illness. Whether a person withdraws from others due to devastating physical symptoms, a lack of understanding from others in our lives, the clinical depression that’s comorbid with so many illnesses, or yet another of the myriad factors for social withdrawal, chronic illness is incredibly isolating.
I cut myself off when my attacks are severe because it takes more physical and mental effort than I’m capable of giving.Unfortunately, that’s meant years of silence in some cases. Even when I feel “better” (my version of better being far sicker than a healthy person’s idea of well), my energy is so limited that I often spend it all on the minutia of daily life rather than socializing. While I’d very much like to reconnect with my loved ones, the day-to-day tasks feeding myself, seeing doctors, doing laundry, wrangling with health insurance, and working have to come first.
Just like Mr. Panicker’s silence accumulates, so do the symptoms of chronic illness. As the symptoms pile on, a patient can become unrecognizable to even ourselves. How can a person connect to others if they don’t even know who they are anymore? I used to dread having to talk about my life. I had nothing to talk about other than illness, the severity of which I was unwilling to acknowledge. My days were solely dedicated to survival and not in an exciting I-defeated-a-grizzly-bear kind of way, but of the can-I-go-to-the-bathroom-now-or-does-it-hurt-too-much-to-move, I-must-feed-myself-so-hunger-doesn’t-trigger-a-migraine variety. Now, I’m more willing to talk about illness and I’m more aware of how much work I do every single day, but I still often think my life must look terribly boring to other people.
The stigma of chronic illness imposes yet another kind of silence. Some people don’t feel like they can talk about their illness without sounding like a complainer, so they just don’t say a word. Others always have to put a positive spin on it, focusing on some miniscule change or possible new treatment. (I’m guilty on both accounts!) Then we encounter the numerous healthy people who are afraid of chronic illness or think they have the answers, forcing their beliefs or cures or stories on us. In these ways and many others, those with chronic illness, like Mr. Panicker, are unseen.
It’s not that people with chronic illness want that illness to be at the forefront of every interaction. We don’t want to be singled out or pampered or treated any differently, but we want to be seen. We want to have all the aspects of ourselves recognized and illness is one part of who we are. When someone tries to deny our realities and experiences or forces a “cure” on us, they aren’t seeing us for who we truly are. For me, that’s what hurts the most — when a person can’t be bothered to see all of me, chronic migraine included, and see what an amazing feat it is that I get out of bed every day.
It took me many years to accept that the people who tell me I’m brave are right. I am courageous and strong for trying to live a full, happy life when I have a debilitating chronic illness. I can dismiss the people who call me weak because I am sick because I know they are wrong. It’s the people in-between, the ones who don’t blame me, but also think I would get better if I tried harder or the ones who gloss over the role migraine plays in my life that I get most frustrated with. Those who make the effort to see me for who I truly am, who are not afraid to acknowledge my illness, are the only people to whom I feel deeply connected.
Again, I don’t want to be only seen as a person with chronic migraine, but to have all the aspects of my identity — good, bad, messy, complicated — to be acknowledged. Illness isn’t all that I am, but it’s a huge part of me. A part that makes my life difficult and my triumphs noteworthy. Denying or ignoring the role of chronic illness in my life invalidates the tremendous achievements, the emotional fortitude, the unbelievable strength I display every single day.
By Kerrie Smyres | October 23, 2013
The American Headache & Migraine Association’s first patient conference is just a month away, on Sunday, Nov. 24, in beautiful Scottsdale, AZ. Attendees will hear presentations from top headache specialists, learn about treatments and coping methods, and meet other patients and advocates. If you’d like to attend, but can’t afford the travel costs, AHMA is offering eight $500 scholarships to help cover transportation, lodging, and meals. Hurry, though — this Friday, Oct. 25 is the scholarship application deadline!
Wondering how to make $500 stretch to cover your costs? The hotel’s group rate is $85 a night for a room with two double beds and there’s a thread on the AHMA forum to arrange for room-sharing. In addition to providing a free breakfast, the hotel has refrigerators and microwaves in each room so you can store snacks procured at the nearby Trader Joe’s, Fry’s grocery, or Whole Foods. Lunch is included in the $25 conference registration fee. The hotel also offers a free shuttle within a 3-mile radius, free transportation to and from the conference, and an airport shuttle for $10 per room. Other than airfare, it’s possible to make this trip on a shoestring and still have a great time!
Learn more about the conference and the scholarships on AHMA’s website:
- Patient conference agenda and details
- Travel scholarship details
- AHMA membership (you must be a member to attend the conference and to receive a scholarship)
By Kerrie Smyres | October 22, 2013
After being featured on the national radio show Dream Big America this morning, TheraSpecs is in the running for a Kauffman Foundation grant that will help us get TheraSpecs to more people who need them. We need your vote today! To vote, text DBA to (612) 223-7326 or vote online. You can hear Hart’s short radio segment, read some Q&A about the business, and vote for TheraSpecs on the Dream Big America website.
Voting is only open until 2 p.m. Eastern tomorrow, so please vote now and spread the word! Thank you.
By Kerrie Smyres | October 18, 2013
What’s the likelihood that the content of the community college meditation class I’m taking in order to qualify for student health insurance would infuriate me? Almost inconceivable, I would have thought, just as I would have thought it impossible that a PowerPoint could cause me to literally shake with rage. The first slide says:
“If you don’t want to be ill… Speak your feelings.
Emotions and feelings that are hidden, repressed, end in illnesses as: gastritis, ulcer, lumbar pains, spinal. With time, the repression of the feelings degenerates to the cancer. Then, we go to a confidante, to share our intimacy, ours “secret”, our errors! The dialogue, the speech, the word, is a powerful remedy and an excellent therapy!”
And it goes on slide after slide with similar explanations after each of the headings, “If you don’t want to be ill…”
- “make decisions”
- “find solutions”
- “don’t live by appearances”
- “do not live life sad”
Really? All I have to do is think the “correct” way and I won’t have chronic migraine? Gee, sure wish I’d known how easy it is to erase a neurological disorder. And I bet my doctors haven’t told me about this quick fix because they’re shilling for pharmaceutical companies.
Our thoughts do not cause illness. In case that’s not clear: OUR THOUGHTS DO NOT CAUSE ILLNESS!
As with so many widespread misguided notions, there’s a grain of truth in the connection between thoughts and illness. Stress, which is often intensified by thoughts, can exacerbate many already existing illness, including migraine and other headache disorders. Chronic stress can lead to ulcers, heart disease or adrenal failure. Still, stress is not solely perpetuated by thought, but also by circumstance. Furthermore, a genetic predisposition to a particular illness is usually present in those who develop so-called stress-related illnesses, and environmental factors can also contribute to illness. In other words, the connection is not as simple and clear-cut as this PowerPoint states.
Illness is fickle and cruel. It cannot be controlled, despite our greatest wishes. It can’t even always be treated. Our thoughts can make illness easier to bear (read How to Be Sickfor fabulous guidance on this), they can inspire us to keep trying, but they cannot, cannot cure us. Perpetuating this belief comes at the great cost of further alienating the sick from the healthy. People with illness do not need judgment and righteousness, but understanding and support.
Plenty of people are brimming with negativity and hatred, but are perfectly healthy. Many others are fonts of optimism and hope, yet are mired in chronic or life-threatening illness. We are not to blame for being sick, our thoughts are not to blame. No matter how many people, how many teachers, how many PowerPoints by doctors with unspecified credentials may tell us otherwise.
By Kerrie Smyres | October 16, 2013
Self-compassion is something I’ve been trying to develop for a while. I’ve definitely made progress — Toni Bernhard’s suggestion to imagine what you would say for a friend in your situation has been invaluable — but I still slip back into self-criticism.
When a friend was sidelined by severe back pain this summer, pain that wouldn’t let up no matter how faithfully she went to physical therapy, did her exercises, used her TENS unit, or applied ice, I got an interesting perspective on Toni Bernhard’s advice. Instead of criticizing my friend, thinking she needed to exercise or rest more or work harder to feel better, my immediate response was to think how unfair it was that she wasn’t getting better even though she was following all the rules.
Based on my experience with migraine, if I’d have had that same back pain, I would have been overwhelmed by self-criticism, wondering what I’d done wrong, thinking I’d be able to overcome it if I tried hard enough, thinking I was lazy and weak. Why is it so much easier to have compassion for others than for oneself?
Read more in Compassion for a Friend Far Exceeds Compassion for Myself on Migraine.com.
By Kerrie Smyres | October 11, 2013
TheraSpecs is one of two start-ups selected to represent Arizona at the national Tech Cocktail Celebrate, now we need your votes to present on stage at the event. It takes about 5 seconds — just click here, scroll down to the green buttons, and click TheraSpecs. No registration required. Thanks!
By Kerrie Smyres | October 11, 2013
Thank you for the outpouring of support after my diet update. The comments and my email and Facebook have been overflowing with kindness. Assuming that the concerns of those who have contacted me represent those of many who haven’t spoken up, I want to tell you all that I’m not suicidal and am nowhere close to giving up a search for treatment.
The thought of returning to debilitating migraines again is scary and sorrow-filled. I don’t wanna go back! and I’m kicking and screaming about it, but it’s the only choice right now. Despite a generally positive outlook, sometimes I need to talk about how much it sucks to have chronic migraine. Getting my life back a little bit the last few months has been wonderful. Letting it go again is the last thing I want to do, even if it is the right decision. Not telling you how painful it is would contradict my desire to write honestly about how harrowing chronic illness can be.
Analogies leap through my mind as I try to put this experience into words. The best metaphor I’ve come up with is that of a wild animal in captivity. In my months of malnutrition, I haven’t been roaming my natural habitat freely, but I’ve been in a spacious enclosure that’s built to mimic nature. It’s exposed to the elements and the sunlight is plentiful. I haven’t been on the loose, but I’ve been pretty well off. Expanding my diet means being confined to a small cage enclosed with chain-link fencing. The floor is concrete and there’s no natural light.
More than anything, I want to be free, but the well-designed artificial habitat was exponentially better than a tiny cage. But I know what the sunshine feels like on my face and how the wind feels in my hair. I know firsthand it’s possible to get relief from chronic migraine. There’s no way I’m giving up now.
By Kerrie Smyres | October 8, 2013
After years of eagerly awaiting the Affordable Care Act’s insurance marketplace, technical glitches weren’t going to deter me from finding out which plans would be available to me next year and how much they’ll cost. Tips for Accessing HealthCare.gov’s Federal Insurance Marketplace on Migraine.com outlines how I finally succeeded in reviewing health insurance plans after literally spending hours each day last week trying to access HealthCare.gov.
The most important tip? Use Internet Explorer! Despite trying Firefox, Chrome and Safari, Internet Explorer is the only browser that allowed me to access and complete the application and review health insurance plans.
If you’re chomping at the bit to learn what your health coverage might look like next year, check out all my suggestions on Migraine.com.
By Kerrie Smyres | October 7, 2013
After my eagerness to meet with a dietician, you might have expected an update on how the appointment. I intended to write one. It was to be about the foods she recommends people with headache disorders avoid (histamine, tyramine and benzoates) and her interesting schedule for reintroducing foods. I was so excited to tell you all about it… until I tested my first food and the frustration returned threefold. Since then, I haven’t been able to talk — or even think — about my diet without crying.
Frustration is no longer even close to an adequate representation of my emotions. I can’t sort out if a food is a trigger or not, if my symptoms are connected to a particular food or to eating in general. I can’t tell if I would have gotten a migraine if I hadn’t eaten a certain food or not. I can’t identify how much of a role other triggers are playing in all of this. It’s like I’m constantly banging my head against the wall.
What I do know is that I always feel worse on days I test foods. That eating ANYTHING, even my “safe” foods of chicken breasts, white rice, and oats usually makes me feel worse. That the issue doesn’t seem to be certain foods, but food itself. My naturopath’s hypothesis that I have a inherited metabolic disorder is sounding more and more plausible. I won’t if that’s the case until I get the results of genetic tests. (Check out WebMD overview of inherited metabolic disorders for an excellent short introduction to the topic.)
I also know that I feel trapped. Trapped between getting good nutrition and feeling horrible all the time. Testing foods has already increased the frequency of my migraine attacks as well as the severity of all my symptoms. My head pain is back to a level 5 or even 6 almost daily. Violent bursts of nausea shock me out of sleep at night. My equilibrium is distorted enough that I have trouble standing up and walking straight. I’m weak and shaky. My knees occasionally collapse when I walk. The effects are mitigated somewhat by only testing foods every other day, but the severity of the symptom is steadily increasing. I wonder how much longer it will be before the drenching night sweats and nightmares, which accompany my severe nighttime migraine attacks, return.
I fear the enormity of the pain and discomfort that are creeping up, preparing to overtake me. Malnutrition appears to be the only way I can keep them at manageable levels, but that’s taking too great of a toll on the rest of my body. I don’t want to give my life back over to chronic migraine, but I can’t continue starving my body of nutrition.
Debilitating chronic migraine’s return appears imminent. It’s breaking my heart. These last few days, it feels like it’s breaking my spirit, as well.
By Kerrie Smyres | October 4, 2013
Legally, law enforcement or an “officer of the court” — which includes private attorneys in some states — can subpoena your health records, according to an NPR report on digital information. Even under HIPPA, health care providers “may disclose protected health information” in response to subpoenas. Think this doesn’t apply to you? Your health records could be subpoenaed for legal disputes with an employer, insurance company, or former (or soon-to-be former) spouse, for example. The NPR story tells of a father whose mental health records were used against him in a custody case.
When asked why health care providers provide records willingly, an attorney interviewed for the story said, “The companies generally want to comply with the law in the way that’s least expensive to them. They don’t want to have to hire lawyers; they don’t want to have to send doctors or other representatives to depositions or court hearings. They just want to give you the records and move on.”
While the law has always allowed for the subpoenaing of health care records, electronic records typically turn up more detailed information and cover a longer time span than paper records, according to the NPR story. Logistically, it’s also easier and faster for the office staff to print or send electronic records than it was for them to dig through and copy paper files.
Despite the unlikelihood my medical records will ever be legal fodder, the thought that they could be is chilling. As soon as I heard the story, I wanted to share it so that you all would be aware of it, as well. I’m relying on the accuracy of NPR’s report, since I have no legal background. If you can share a legal perspective, please leave a comment with your insight.
By Kerrie Smyres | October 3, 2013
When someone asks how you are, how do you respond? It’s a tough question when you have a life-altering illness — should you shrug it off with an “OK” and deny your own experience or be truthful and risk scaring off the other person?
My response varies depending on the person, how I feel in that moment, how much energy I have, and if I really want to get into it. It’s usually along the lines of “I’m still here,” “I’m alive,” “I’ve been better,” or “OK right now, though it’s been a rough week.” If I don’t want to talk about it, I immediately follow my response by turning the question around. Most people love to talk about what’s going on in their lives and are thrilled to have someone who is ready to listen.
100 Ways to Answer the Question “How Are You?” (PDF) is an excellent new resource from ChronicBabe that’ll help you answer that difficult question. There’s bound to be a suggestion that will help you no matter how you’re feeling on a particular day and how much you want to talk about.
I particularly like the section on authenticity where she points out that answering the question honestly can establish intimacy and trust, leading to a deeper connection between you and the people in your life and, thus, greater support. Need more encouragement to open up? Check out The Power and Strength of Vulnerability.
By Kerrie Smyres | September 30, 2013
The zooming, sliding, parallax and other features of the new iPhone and iPad software could worsen your migraine or headache disorder symptoms. The British newspaper the Guardian reports that iOS 7 is making people with vestibular and some neurological disorders sicker. Unfortunately, I learned this firsthand when I upgraded my iPhone. The dizziness, nausea, and increased headache when I use my phone means I went from loving my phone and using it constantly, to no longer even wanting to look at it. And that’s after changing the accessibility settings to “reduced motion” (Settings > General > Accessibility > Reduce Motion).
If you haven’t upgraded yet, spend some time on someone else’s upgraded device before you commit to it on your own. Once you upgrade, there’s no going back! I was very careful to backup my phone before the upgrade, thinking I could restore it if I didn’t like the new operating system. When I tried to restore it, I discovered that iTunes forces the iOS7 upgrade along with the restore, thus rendering it an ineffective solution. Some Googling revealed that Apple no longer allows such downgrades.
If you’ve been made sick by the new animations on iOS 7, you can send a short email to firstname.lastname@example.org to explain which animations are problematic for you and request directions for disabling them. Or if you’ve decided not to upgrade because of the potential of worsening your symptoms, email them at that same address to request accessibility accommodations so you can use their software in the future.
By Kerrie Smyres | September 27, 2013
- Migraine is the third most common disorder on the planet.
- It is the seventh highest cause of of disability globally.
- It is by far the most disabling neurological condition.
- 36 million Americans have migraine. Most have three or fewer attacks each month, but 3% have chronic migraine.
- Migraine costs the United States more than $20 billion each year in direct medical expenses and indirect expenses, like missed work and lost productivity.
- Less than 1/20th of 1% of the budget of the National Institutes of Health – about $16 million a year – is allocated to migraine research. $260 million would more accurately reflect the prevalence and magnitude of migraine.
If each of the 36 million people who have migraine donated just $1 each to migraine research, researchers could make enormous strides toward understanding and treating this disabling disorder. Imagine how much we could raise if all the people who love us also donated a $1. It’s not fair that we have to fund migraine research in addition to living with the burden of it, but if we don’t fund the search for a cure, no one will.
Please donate what you can to support the 36 Million Migraine campaign. Maybe you do so as a birthday gift to me as a thank you for how The Daily Headache has helped you, maybe it’s in honor of a loved one who triumphs over migraine every day, maybe it’s so your children or nieces and nephews won’t have a life devastated by migraine, maybe it’s for your own sake. Whatever the reason, please donate what you can to help find a cure for migraine.
Thank you to everyone who has already donated through Crowdrise!
By Kerrie Smyres | September 25, 2013
A Sick Stigma: Why Are Cancer Patients Blamed for Their Illness? is yet another article about cancer with a message that rings true for headache disorders. It examines the ways in which healthy people blame patients for illness, why they do so, and how patients internalize these messages and beat themselves up. The following paragraphs particularly spoke to me:
“Judgments about behavior not only unsettle and stigmatize the patient, but reflect the interrogator’s own insecurities. Frequently, those disease detectives are attempting to regain a sense of control amid the inherently random and sometimes unjust world that we all reside in, according to researchers who have studied stigma.”
“’I think that in one part there is a fundamental assumption in our society that the world is a just place, and that bad things don’t happen to good people,’ says Gerald Devins, a stigma researcher and senior scientist at the Ontario Cancer Institute in Toronto. ‘And I think when bad things happen to good people, it’s threatening to everybody.’”
‘Secondly, you can say knowledge is power in a sense,’ Devins says. ‘If we feel like we understand something, it gives us the illusion of control.’”
These are similar to arguments I made in It’s Not About You on Migraine.com, with the bonus of being rooted in academic research, rather than personal experience. Illness — whether curable or chronic, life-threatening or not — scares people. Blaming the patient is a way to allay these fears and allows the currently healthy person to believe they have the power to avoid illness.
By Kerrie Smyres | September 24, 2013
HealthWarehouse, a licensed U.S. pharmacy based in Kentucky, charges even less for sumatriptan than Inhouse Pharmacy Europe, which I told you about last week. Bonus: it’s entirely legit and there’s no question if it’s legality, though you’ll need to send them a prescription.
I’ve ordered other meds from Health Warehouse and have been pleased with the service. The prices are low and shipping is prompt. The only drawback is that they don’t take manufacturer’s coupons.
Wherever you buy sumatriptan, you can try to simulate the effect of Treximet by taking naproxen sodium (Aleve) along with it. (See paragraph five of Save Money on Sumatriptan (Imitrex/Imigran/Treximet) for details.) Some people find mixing their own medication cocktail is as effective as Treximet, others swear by the all-in-one Treximet. It’s worth a try to save money, but be sure to let your doctor know what you’re up to — safety is even more important than frugality!
Thanks to The Daily Headache reader on Facebook who told me about HealthWarehouse’s price on sumatriptan. And thanks to Timothy who suggested asking your doctor for triptan samples at every visit and thanking them profusely for them. He also pointed out that if you take a low dose of a medication, you can ask your doctor to write a prescription for a higher dose and split the pill in half. This doesn’t work with every medication (some have a time-release coating, others aren’t tablets, others don’t come in a dose that’s easily halved, etc.), but it’s something to ask your doctor about.
If you know any other sources for good prices on sumatriptan — or any other meds! — please leave a comment. Your help is invaluable to me and to other readers as well.
By Kerrie Smyres | September 23, 2013
Many of you have expressed a desire to buy me a cup of coffee as a thank you for my work on The Daily Headache. My 37th birthday is coming up and there’s no greater gift I could receive than for The Daily Headache’s readers to further migraine research by donating to the American Migraine Foundation’s 36 Million Migraine campaign.
Whether you can only spare the couple dollars you’d spend on a cup of coffee or your budget will allow for a larger donation, every contribution helps further migraine research. That’s the gist of the campaign — if each of the 36 million Americans who have migraine donated just $1, we’d have $36 million to investigate the causes of and treatment for this life-altering disorder.
Of course, not all 36 million migraineurs read The Daily Headache, so I’ve set my birthday fundraising goal at a modest $1,000. Please consider donating whatever you can spare to better the lives of everyone who lives with this poorly understood, debilitating illness.
I’ve set up a 36 Million Migraine via The Daily Headache donation page on Crowdrise so we can see how much The Daily Headache readers contribute toward the goal. If Crowdrise’s $10 minimum donation isn’t in your budget, you can donate through the American Migraine Foundation. I’m using my birthday to drum up support, but it doesn’t matter where you donate or if you mention The Daily Headache or me — it’s all about raising money for migraine research.
P.S. Click on the orange “Optional Processing Fee” text on the Crowdrise donation page if you do not wish to pay an additional amount for processing (or if you wish to pay more in support of Crowdrise!).
By Kerrie Smyres | September 20, 2013
People who have episodic migraine that is not adequately treated are three times more likely to progress to chronic migraine than those who have an effective treatment for episodic migraine, according to a recent study. In Keep Episodic Migraine From Progressing to Chronic on Migraine.com, I beg everyone with episodic migraine to see a doctor and also dispel some myths and misunderstandings about migraine treatment. Episodic migraine is bad enough, but chronic migraine is hell. If you have episodic migraine that’s not well-managed, please, please seek better treatment — no one should have to live with the misery of chronic migraine.
What I don’t mention in that Migraine.com post is how close the topic is to my own heart. My 16-year-old niece has had chronic daily headache since she was 11 and has episodic migraine attacks all her life, which have gotten more frequent as she’s gotten older. Whenever I see news about episodic migraine progressing to chronic — or chronic migraine worsening over time — I wonder how my niece’s migraine will progress. Everything I know about this illness points to the likelihood of her symptoms worsening without effective intervention. The thought breaks my heart.
Imagining my bright, driven, kind niece as sick as I have been makes me weep. I’m hopeful that her early diagnosis and the advances of migraine treatment in the last 20 years will mean she never has to endure what I have. I’d like my experience to be a cautionary tale that leads her and her parents to treat her migraines aggressively before they spiral out of control and become even harder to corral. There’s no guarantee her migraine trajectory will be the same as mine, but there’s also no guarantee it won’t. I’m afraid the odds aren’t in her favor.
By Kerrie Smyres | September 19, 2013
I’ve been debating posting this for months. I hesitate because I doubt getting triptans without a prescription from another country by mail order is legal, even though the drug is available over-the-counter in that country. On the other hand, knowing of a resource for inexpensive triptans and not sharing it seems unfair to readers who delay or avoid treating migraines because of the high cost of abortive drugs. I’m sharing this with the caveat that the legality is fuzzy, so you’ll have to make that ethical decision for yourself. Here’s the FDA’s stance on drug importation.
Imitrex (Imigran in the UK) and Treximet are expensive. Even though sumatriptan, the main ingredient in both, is available as a generic, it’s still tough to find it for less than $3 for a 50 mg pill. Prices for higher doses or injections skyrocket from there. If you’re looking to save on Imitrex or Treximet, check into pricing at Inhouse Pharmacy Europe, which has 50 mg tablets of sumatriptan for $1.10 each. Higher doses and injections are also available for less than in the US. Because sumatriptan is available over-the-counter in the UK, which is the jurisdiction this pharmacy operates under, you don’t need a prescription to order it.
I can’t vouch for the company directly because I don’t use sumatriptan and haven’t ordered from them myself, but this recommendation comes from a friend and longtime reader who has been ordering from the company for at least five years without a problem. She says the company is very reliable and medications are never close to their expiration date. In fact, the website tells you the expiration date of the meds they are currently shipping. Shipping is free to the US and they provide package tracking information.
If you use Imitrex, you can substitute these directly according to the strength you are usually prescribed. They are the same thing.
If you use Treximet, you can try taking sumatriptan with 500 mg of the OTC painkiller naproxen sodium (Aleve) to approximate the drug. Treximet contains 85 mg of sumatriptan, while sumatriptan only comes in 50 mg and 100 mg, so you’ll have to choose which you prefer. GSK’s marketing materials say that having the two drugs combined into one tablet is more effective than taking each one separately. But if you’re holding off on taking triptans because they’re too expensive, you may be more likely to take them early in an attack (when they’re most effective) if they don’t cost an arm and a leg.
Not needing a prescription is a double-edged sword, of course. You still need to take them judiciously and watch out for medication overuse headache. Be sure you tell your doctor how frequently you’re taking them, even though you can get them without a prescription.
If you place an order with Inhouse Pharmacy Europe, please leave a comment letting readers know what your experience is. I hope it turns out to be a helpful source for helping readers afford these pricy meds.
By Kerrie Smyres | September 18, 2013
Eight vials of blood, one fainting spell, and three pages of lab results later, and I’m seeing just how much harm my months of malnutrition have caused. Year after year, my blood work is unfailing perfect other than showing slightly elevated cholesterol. I didn’t really think my “diet” would throw things too far out of whack. Boy, was I mistaken.
After five months of living on chicken, white rice, and gluten-free oats, and four months of compromised nutrition before that, my liver enzymes and thyroid hormones are elevated, my blood sugar is low, my folic acid is deficient, my cholesterol is through the roof, and I have a host of other alarmingly elevated or depleted levels. None of the damage is permanent and most of it can be reversed through diet, but the results are alarming nonetheless.
I knew I was taking a risk, but I didn’t expect to see evidence of it so quickly. I should be grateful that my body recognized it was starving and is working to protect itself, but mostly I’m angry at myself for thinking that malnutrition was a wise choice even though it reduced the frequency and severity of my migraines.
While going back to a well-rounded diet would be the quickest route to getting my body back on track nutritionally, I’m waiting until I get guidance from the dietician (tomorrow!) to figure out how to reintroduce foods in a way that tests whether certain food chemicals are triggers. Until then, I’m eating three servings of nutrient-dense foods each day. My brain fog is much better and my fatigue has changed from a body-filled-with-sandbags sensation to more of an achy feeling. The migraines haven’t drastically increased in severity or frequency so far.
Most notably, I’m not longer thinking of every food as a potential migraine trigger, but as an unknown. I’ve also recognized that my migraine symptoms vary throughout the day whether or not I eat a trigger food, so I’m not scrutinizing every symptom and connecting it to foods unless the reaction is obvious. These may seem like imperceptible shifts, but they allow me to feel freer and less afraid of food.
It’s astonishing to think I went from not believing food triggered my migraines to being so suspicious of food that I starved myself of nutrition to feel better. As if I needed more proof that the desperation of intractable chronic migraine messes with the mind.
By Kerrie Smyres | September 17, 2013
Anyone who pays for health care in the U.S. should watch this excellent explanation of the complicated, nuanced reasons health care costs are so high here. It’s making the rounds on my Facebook feed from people all across the political spectrum.
By Kerrie Smyres | September 12, 2013
I’m so excited to finally be able to announce that TheraSpecs Pilot, an aviator frame with a curved lens for maximum light protection, is now available. I’ve been wearing a prototype for months and love them so much that I’ve been dying to tell you about them!
Although Pilot looks like a classic aviator from the front, the lenses are curved for a wrap effect, so they block light really well. The golden metal alloy frame compliments the rosy hue of the TheraSpecs tint, plus it is very lightweight. Add in soft silicone nose pads and spring hinges and this eyewear is super comfortable in addition to looking great. Although aviators aren’t usually my style, I like Pilot so much that I wear them almost exclusively as my indoor frame.
Even better, we’re offering a 30% introductory discount off the regular price of $99 for indoors and $129 for outdoor polarized lenses. Order your Pilots this month and you’ll automatically receive the discount — that’s $69.30 for a pair of indoors and $90.30 for outdoors.
By Kerrie Smyres | September 11, 2013
“Pretending to be happy when you’re in pain is just an example of how strong you are as a person.” A migraine group shared this on Facebook this morning and I’m so upset that I’m shaking. I’m not dissing the group, they’re doing great work and share a lot of helpful information, but I completely disagree with the idea that putting on a happy face is a sign of strength. Having the courage to be vulnerable, showing people how much you’re struggling, being honest about what you’re going through is the truest show of strength.
I’m very experienced at putting on a happy face and pretending like everything’s OK when I’m in massive pain. I did it for years, thinking it was the only way I could survive life with chronic migraine and not be labeled a complainer. Those were the loneliest, scariest, hardest years of my life. This pretending was a five-foot thick wall separating me from everyone in my life — I couldn’t connect with anyone, even my husband, because I wasn’t being honest about the greatest struggle in my life. I wasn’t even honest with myself.
Believing that putting on a happy face would make everything better constantly invalidated my everyday experience. I questioned my own fortitude and perseverance and the severity of my symptoms. I lost my identity, not just to illness, but because I couldn’t see my true self underneath all the pretending I did. I never allowed myself to process the tremendous grief that came with the quality of life I lost due to migraine. I sunk deeper and deeper into depression.
Only by acknowledging the depth and breadth of my illness to myself and others, have I begun to rise out of depression. I didn’t actively choose to show others how sick I was, but became too sick to function without the help of loved ones and too sick to pretend that I was OK. It’s been a slow process and I’m still learning the appropriate level of openness (see Migraine & Empathy for suggestions on how to gauge disclosures). Sometimes I overshare and worry that others will think I’m weak or complaining, but most of the time I’m able to say “I have chronic migraine” as if it were just another demographic fact, like that I grew up in Phoenix or lived in Seattle for six years. I am continually surprised that people do not think I’m weak, but are awed by what I’ve been able to endure and accomplish.
Our culture’s denial of the realities of illness teaches us that pretending you’re happy when you’re in pain is strength, but it’s actually cowardice and fear. True strength comes being your authentic self and acknowledging all the complex, messy intricacies of real life. It’s not easy, especially considering all my years of cultural conditioning and buying into misguided beliefs about illness, but I’m learning that living a rich, authentic life with strong connections to others is far more rewarding that hiding behind masks of artificiality.
By Kerrie Smyres | September 10, 2013
“Congratulations.” Of all the responses I anticipated before publishing An Almost Normal Life Thanks to an Extremely Unhealthful “Diet,” being applauded never occurred to me. When that congratulatory email arrived in my inbox, I was floored. Having had a prior email correspondence with the sender, I knew they were coming from a place of desperation. To them, any sort of improvement, even at the cost of malnutrition, was a tremendous gain. To me, it was reminiscent of people who made jealous remarks about my weight loss when I was gaunt from such severe nausea that I could barely eat. In both cases, the outcome — whether fewer migraines or (unwanted, unnecessary) weight loss — the price is too high.
Serendipitously, I saw my therapist/naturopath the afternoon I received that congratulatory message. She listened as I expressed my dismay that my malnutrition could be a reason to celebrate. She let me rant about how frustrating it is to track down food triggers when Every. Single. Thing. I eat seems to be a trigger. She handed me tissues when I cried about how much I miss food, baking and cooking, and sharing meals with my loved ones. She recommended a bunch of lab tests to check the nutrient levels in my blood. She got the ball rolling on metabolic testing. She explained the hormonal impact of starving my body.
Starving. That was the first time anyone had spoken that word aloud. I’m getting enough calories, so I’m not technically starving, but I’m getting about as much nutrition as I would drinking soda all day. I am starving myself nutritionally so I can pretend to live an almost normal life. The body needs high-quality fuel to run efficiently, and I’ve been running on fumes for months. It’s no wonder I’m in a constant brain fog and my limbs are so heavy it feels like my bones have been replaced with sandbags.
“Congratulations” was intended as a show of support and, in a roundabout way, that’s exactly what it was. It was a wake-up call — no, more like a slap in the face. Starving myself of nutrition relieves the migraine symptoms temporarily, it does not eliminate them or their cause, and it has potential for long-term harm. These months of operating at 50% much of the time have been amazing, but I will no longer trade my overall health for temporary relief of migraine symptoms.
Please cross your fingers, send good vibes, pray, or whatever it is you do that I’ve gathered enough information from this absurd “diet” that my dietician, naturopath, and doctors can investigate some previously unexamined issues, like food chemical intolerances, enzyme deficiencies, and mast cell and metabolic disorders. My greatest hope is that I will not only find some answers for myself, but that my discoveries will help others with headache disorders find the missing pieces of their treatment puzzles.
By Kerrie Smyres | September 6, 2013
“Why don’t we have our own walks and sassy tee-shirts?,” reader Juli recently asked. It’s a great question — there’s a plethora of fundraising runs and walks for every other condition or illness, so why not migraine? Miles for Migraine, an organization I recently learned about, is exactly that, a race dedicated to raising awareness of migraine and headache disorders.
Annual Bay Area Run
Next Saturday, September 14, Miles for Migraine will host the sixth annual San Francisco 5K/10K run and two-mile walk in Golden Gate Park. If you or your loved ones live in the Bay Area, please participate in this fundraising and awareness-raising event! Check the Miles for Migraine Facebook page today for a code that will save you 20% off the registration fee — hurry, though, the code expires tonight.
Nationwide: Miles for Migraine in Your Town
Don’t live in the Bay Area? Miles for Migraine has just launched Miles for Migraine in Your Town in a bid to spread the awareness nationwide. With this program, anyone anywhere in the US can use their participation in any scheduled race to raise awareness about migraine and headache disorders. Alternatively, they will work with volunteers who want to organize races specifically for raising awareness and money for migraine and headache disorders.
In addition to providing fundraising support, Miles for Migraine in Your Town will provide participants with virtual training resources and “cool swag,” including T-shirts to wear in the run. Money raised will be donated to a local headache clinic or, if there’s no local clinic, into expanding dedicated Miles for Migraine races across the country.
The first Miles for Migraine in Your Town is underway for the Philadelphia Marathon on November 16th and 17th. Details are available at M4M in Your Town – Philadelphia.
I had the pleasure of learning about this exciting nonprofit in a call with the race director. It started with the bright idea of Eileen Jones, a migraineur and nurse, who joined the Alliance for Headache Disorders Advocacy’s 2007 visit to Congress to request funding for migraine research. After legislative aides told AHDA representatives that they needed to raise awareness about migraine and drum up support from the general public before funding would increase, Eileen decided a race would be a good way to do just that.
The first Miles for Migraine race was held in San Francisco in 2008 with the goal of eventually expanding nationwide. With the launch of Miles for Migraine in Your Town, they’re in the process of spreading awareness throughout the country. Please support their tremendous effort, either by participating in a run yourself or encouraging your loved ones to do so. With increased awareness comes less stigma for migraine an all headache disorders.
By Kerrie Smyres | September 5, 2013
In April, my migraine frequency and severity finally decreased enough that I began to feel like I had a normal life again for the first time in more than a decade. The pieces have been falling into place for a while: the move to Phoenix, wearing TheraSpecs, starting a high dose of magnesium, taking cyproheptadine, attempting a low-histamine and low-salicylate diet, starting Ritalin. I’ve been feeling better than at my worst for a while now, but it wasn’t until April that I began to feel like I could have a consistently almost normal life. The change? I took my diet down to nothing but gluten-free oats, chicken breast cooked in safflower oil, and unenriched white rice. I felt even better after cutting out the chicken and safflower oil a few weeks ago.
I haven’t written about this “diet” — what I eat isn’t healthful enough to constitute an actual diet so I have to use quotation marks — because it is unhealthful and I do not recommend it to anyone. It is an untenable solution and I worry about my nutrition all the time. Yet, I can’t let go of the life that eating this way has given me.
On this limited “diet,” I wake up each morning and know I can probably do what I have planned, rather than knowing I’ll be lucky to mark two items off my list. It enables me to have engaged and interesting conversations with my husband, make plans with friends actually be able to follow through, write regularly for Migraine.com and The Daily Headache, make meaningful decisions for TheraSpecs, exercise most days, go to yoga classes, attend therapy appointments…. In other words, subsisting on oats and rice is the difference between living a fuller life than I have in more than a decade and spending most of my time on the couch, in the unpredictable throes of a migraine.
I know I need nutrition and I don’t plan to eat this way indefinitely. It has yielded some important clues that I hope will further my treatment — I have an appointment with a dietician experienced in food sensitivities in a couple weeks and my naturopath is going to test me for metabolic disorders. While waiting for those appointments and results, I’m slowly testing high nutrition foods to see how I react. I do so with great caution. It’s hard to willingly return to the migraine cage I’ve lived in for so long.
By Kerrie Smyres | September 4, 2013
Thinking about trying a nerve stimulator to treat chronic migraine? Ask tons of questions beforehand to help ensure you’re making the most informed decision possible. I’ve brainstormed questions to ask your doctor, other patients, and even yourself in Nerve Stimulation: Questions to Ask, my latest post on Migraine.com.
You can learn about my experience with occipital nerve stimulation and what the research says in my posts on Migraine.com from earlier this summer. If you’re curious what I had to say when I still thought mine worked, check out the archive of my nerve simulation posts on The Daily Headache.