An Unusual Perspective, Courtesy of Chronic Migraine
By Kerrie Smyres | May 16, 2012
I’m finally in migraine hangover after 24 hours of level 7 pain followed by 12 hours of level 6 pain. I was uncomfortable and eager for the migraine to end, but mostly I was astonished. Astonished that just a couple years ago, level 7 pain was often my low for weeks at a time. You read that right. For weeks at a time, the pain would not drop below a 7, 8 or 9 was the norm, 10 wasn’t uncommon.
Despite the severe pain of this migraine lasting far longer than it has in recent months, I’ve spent the last couple days in a curious sort of gratitude. I wanted to be somewhere other than my body, somewhere I couldn’t feel the pain. At the same time, I rejoiced that this is no longer the norm.
It is always difficult to answer when people I haven’t talked to in awhile ask how I feel. I am better for sure, but am far from well. With a constant headache and at least five days a week where the pain hits at least a level 6, I’m still on the “very sick” end on the continuum of people with migraine. And am thankful to have improved this much.
Topics: Coping | No Comments »
You (Yeah, YOU!) Are an Advocate for Migraine Patients
By Kerrie Smyres | May 14, 2012
“How do you create awareness about migraine disease and headache disorders as a regular patient with a life full of other obligations?” was the question for the May 2012 Headache & Migraine Disease Blog Carnival. Though I didn’t get a post written in time to be included in the carnival, I have been mulling the question over. I was surprised to discover myself coming back to a very simple answer: talk about migraine.
Advocating for folks with migraine doesn’t require a fancy degree, having a blog, or devoting tons of time to the cause. All it takes is for people with migraine — and those who love us — to speak up about what migraine really is whenever the opportunity arises. This means not dismissing a migraine as “no big deal” and not shrugging off when someone says migraine is “just a headache,” but explaining that this is a neurological disorder that affects the entire body.
Explaining that the autonomic nervous system — which is responsible for all the processes the body does without obvious input from the brain, like breathing and digestion — goes haywire and that all five senses are on super-high alert are illustrative for non-migraineurs. The list of little-known migraine symptoms and weird migraine symptoms help, too.
How do you talk about migraine to raise awareness of the disease?
Topics: Community, Coping, Society | 2 Comments »
The Physical & Mental Roller Coaster of Chronic Migraine
By Kerrie Smyres | May 10, 2012
Sometimes you don’t hear from me for awhile because I’m in a horrible spell of migraine attacks. Other times it is because the migraines have let up enough that I’m racing around, trying to accomplish everything that falls to the wayside when the migraines overtake me. I continue to expect the migraines — and thus my life — will even out. Silly me.
The last week of April I had a cold, a mouth full of cold sores, and storm-triggered migraines. A down week. Last week I felt great even though I discovered I had an indomethacin-induced ulcer. The migraines were mild and I had a ton of energy. I went to the dentist, the doctor, yoga and physical therapy, had coffee with an old friend, got a magnesium infusion, cleaned the house, hosted a Cinco de Mayo party, was swamped with TheraSpecs work, and more I won’t bore you with. I was exhausted by the end of each day, but woke up the next morning ready to go. Clearly an up week taking loops at high speeds. This week I’m struggling to keep my head up through severe migraines. And the roller coaster plunges back down.
Maybe I’m now paying for overexerting last week. Or maybe this is a new week with unrelated migraine triggers. The amount of time I spend second-guessing my health-related decisions is dramatically less than it was, say, a year ago. Still it feels like far too much time and energy. Balance continues to elude me. Not just in deciding how much to do and when to rest, but also in how I think about migraine and my role (if any) in exacerbating the illness.
In theory I know migraine is a disease and I am not at fault for having it. In practice, though, when “stress” is a commonly cited trigger for an illness, the patient is inherently blamed for worsening their own health. So I always wonder what I did wrong and what I can change next time.
I’m stuck on a ride I can’t get off of even though I didn’t want to be on it in the first place. I never did like roller coasters, but am willing to make the most of the ride since I’m already here. If only I could figure when to throw my arms in the air and scream with joy and when to hunker down and hold on tight.
Topics: Coping | 6 Comments »
The Clock Goes TICK! TOCK!
By Kerrie Smyres | May 8, 2012
“Breathe in deeply and exhale fully.” Inhale… Ugh, did that woman bathe in coconut sun oil? OK, Kerrie, focus. “Slowly move your head to the side on your out breath, inhale to center, exhale and move to the other side.” Whoa, that was quite the stabbing pain in my head. Every step the teacher takes sounds like Velcro peeling apart. Focus! “Inhale to center…” I wish this guy would stop sniffing. And the sun is so bright. “On your next exhalation…” TICK! TOCK! TICK! TOCK!
The clocks at my yoga studio are curious. Sometimes they are completely silent. Sometimes they demand I pay attention to their continual work. In reality, of course, the clocks tick at a perfectly consistent volume. Whether my brain is in migraine high alert determines if I hear them or not. Phonophobia is not subtle.
After a severe migraine yesterday, I spent today not knowing if I was being haunted by a hangover or if another migraine was coming on. Hearing TICK! TOCK! as I tried to settle into a yoga class this evening put an end to my questioning. Another migraine it is.
Topics: Coping | 3 Comments »
Surgery for Migraine: Is it Worth the Risk?
By Kerrie Smyres | April 26, 2012
Stories on a plastic surgery technique used to treat migraine made the rounds this month. Most articles present the surgery as a miracle cure, though Philly.com’s article Surgery for Migraines: Help or Hokum? provides a well-balanced look at the procedure. It notes that neurologists “generally remain not just skeptical of surgery, but disapproving.” In fact, the American Headache Society issued a statement urging patients be cautious in considering surgical treatments. The statement reads, in part,:
In light of recent news reports about the growing use of surgical intervention in migraine, the American Headache Society® is urging patients, healthcare professionals and migraine treatment specialists themselves, to exercise caution in recommending or seeking such therapy.
In our view, surgery for migraine is a last-resort option and is probably not appropriate for most sufferers. To date, there are no convincing or definitive data that show its long-term value. Besides replacing the use of more appropriate treatments, surgical intervention also may produce side effects that are not reversible and carry the risks associated with any surgery. It also can be extremely expensive and may not be covered by insurance. Most importantly, it may not work for you at all.
Since the occipital nerve stimulator I had implanted in 2003 proved ineffective, I swore I wouldn’t try to find a surgical solution again. (The nerve stimulator was my third migraine-related surgery, including TMJ surgery in 1997, sinus surgery in 2000.) The nerves of a migraineur are so sensitive that anything that mucks with them seems a bad idea.
That resolve lasted until earlier this spring when I found myself wishing for a hole in my heart (which I do not have). In a comment on that post, Drew shared his story of being diagnosed with a PFO and considering having it closed as a treatment for his NDPH (new daily persistent headache). Drew wrote,
“The research on this subject has led me and my doctors to one simple reasoning of thought. The proceedure is just not worth it. There is no garantee that closing the pfo will stop the headaches in the short term or long term over your life time. There is also the very possible chance that you could suffer even more complacations from the surgey, by no means is this surgey a fix it. Remenmber it still intails your heart and messing with the bodies system.”
The wisdom of Drew’s comment resonated when, days later, I saw the stories about plastic surgery for migraine. I must admit that initially my hopes were raised as I read about the surgery — I felt pretty bad and was wooed by the thought of relief. Then I remembered Drew’s comment and my own resolve and saw the AHS’s statement. No surgery for migraine has good evidence for efficacy and any surgery has potential complications and impacts the body in many ways.
I have re-resolved to avoid any surgical “fix” until it has strong support from scientific studies. The potential problems just aren’t worth the risks. What do you think of surgery for migraine? Have you had any (and was it effective)?
Topics: Nerve Stimulation, News, Treatment | 6 Comments »
Call for Entries: 2012 Putting Our Heads Together Poetry Contest
By Kerrie Smyres | April 23, 2012
Flex your creative muscles and enjoy the catharsis of putting migraine to words by entering the 2012 Putting Our Heads Together Poetry Contest. Entries will be accepted until midnight, Friday, May 4.
Whether you write a lot of poetry or have never attempted it before, please enter. You could surprise yourself — one year’s first place winner had never written poetry before. This year’s judges will be migraine patient advocate extraordinare Teri Robert and the Migraine Research Foundation.
Learn more about the contest and find the entry form and see last year’s entries at Help for Headaches and Migraines.
Topics: Community, Coping, News | 5 Comments »
Balancing Caution and Fear of Migraine
By Kerrie Smyres | April 19, 2012
“I’m going to be angry if I don’t get a migraine tonight,” I told Hart Friday night. Those are words I never thought I’d say, but I’d been looking forward to that night’s local music festival for months and I didn’t want to have missed it because I’d guessed incorrectly about an impending migraine.
I stayed home because I was feeling “off” and a storm was rolling into town, which is a pretty reliable migraine trigger for me. Usually I’d go anyway, especially if I’d been doing OK most of the day, like I was Friday, but the tickets were expensive and I loathed the thought of fighting through the crowd to leave and then riding in the car for 30 minutes with a migraine.
I’d done the math and the dithering all afternoon and made what I thought was the right decision. When the migraine didn’t come Friday night, I felt like I’d cheated myself out of a great time because of fear. I wanted to embrace my choice with confidence, but the doubt remained: Maybe I was taking care of myself and being appropriately cautious, maybe I missed out by giving into fear.
I’ve been running my mind in circles, trying to figure out how I could have made a better decision Friday (and by “better decision” I mean one that would have gotten me to the music festival). Then Tuesday came along and I felt pretty good, so Hart and I went to a baseball game. At the game I realized that I had used all the available information to make the best decision I could on Friday. There’s no way to make perfect decisions with an unpredictable illness.
Sometimes I’ll got to the show and get a migraine, sometimes I’ll feel just fine. Sometimes I’ll stay home and feel OK, sometimes I’ll have a migraine. Sometimes I’ll go to the game and catch my first foul ball, like I did on Tuesday.
“Like” The Daily Headache on Facebook to see a picture of Hart and me with my foul ball.
Topics: Coping | 6 Comments »
TheraSpecs FL-41 Glasses Now Available
By Kerrie Smyres | April 12, 2012
TheraSpecs, the company Hart and I have started, is now open for business selling precision-tinted therapeutic glasses! Clinical research shows they can reduce the frequency of migraine attacks, relieve sensitivity to light during a migraine, protect you from light-triggered migraines (especially from fluorescent lights and CFLs), and reduce headaches and eyestrain. They are available in both an indoor tint and a darker polarized tint for outdoor use.
Learn more or order your own pair at TheraSpecs.com.
Topics: Community, Coping, Favorites, News, Treatment | 2 Comments »
Finding (and Missing) My “True Sanctuary”
By Kerrie Smyres | April 11, 2012
Though my migraines have been better in the last couple months — except for last week, when I accidentally halved my dose of magnesium — I’ve been feeling kind of blah. Not depressed, but not motivated or energetic either. This, I’ve discovered, has in large part been because I haven’t been able to practice yoga, which generally boosts my health and my mood. Beyond providing exercise, yoga occupies the all-important third space for this migraineur.
Migraine didn’t keep me away this time, at least not directly. Instead, I developed joint pain as a result of my sedentary life. After a year of taking only gentle yoga classes, I moved to all-levels classes. I felt like I’d developed some stamina and was ready to start building some muscle. I expected a lot of muscle aches — the good, I-can-tell-I’ve-been-working-out kind of soreness. It never came even though I was going all-out in class. It turns out that my natural flexibility (which hasn’t waned) was working against me. My muscles aren’t strong enough to support me when I’m splayed out in a pose, so my joints took the brunt of my workouts. I kept going to classes for awhile, thinking I’d work through it. Nope. So I tried only gentle classes, but the pain persisted. I had no choice but to stop and heal.
I bought an ancient treadmill so I could exercise without leaving the house. I’m one of those weird people who doesn’t mind exercising on a treadmill, but “exercise” and “yoga” are not synonymous experiences for me. Walking on a treadmill and listening to podcasts is fine; yoga classes are a time of (almost) pure enjoyment for me. I’d rather follow my bliss. Engaging in a third space, which is a meaningful activity outside of work or home, can reduce stress and social isolation. In A Third Space for Migraine Patients, headache specialist William Young writes:
I think that finding a good third space can be very hard for a person with bad migraine, but that finding something is truly important. I think it works best when it requires interacting with people outside of work or home and consumes someone in such a way that it becomes very hard to focus on pain. I don’t think it needs that much time, and if an hour a week is all you can find, that is fine, if you have found a true sanctuary. Find something, try it on and if it doesn’t fit, keep trying until you find something meaningful. Fight for one tiny, special activity that takes you away from the places in your life that the pain resides. Keeping a seed of contented normalcy somewhere in one’s world is critical, and provides hope in the darkest times.
I will spare you the poetic waxing. Suffice it to say that classes provide me with much pleasure, which I have missed. While I don’t talk to a lot of people at the studio (how outgoing I am depends on how migrainey I am), I appreciate seeing different people than my friends and family. The studio I go to has a strong community feeling and I like the support implicit in that. People notice when I’m gone and ask how I am when I return.
I have described yoga as a lifeline before. Until this forced hiatus, I didn’t know how true that was. I’ve been back for a few gentle classes and have felt great emotionally and migraine-wise afterward. My joints were OK with one class, but they are complaining a bit after classes on consecutive days. Next week I will get suggestions from a physical therapist/pilates instructor/massage therapist for improving muscle tone and protecting my joints.
The work required to regain muscle strength is daunting, especially knowing that migraine will continue to interrupt my attempts to exercise. I fear that I will never come out ahead. At which point I have to remind myself to be mindful of the present moment, not lost in the past or anticipating the future. One step — whether forward or back — at a time.
Topics: Community, Coping | 4 Comments »
FL-41 Precision Tint Glasses Photo & Update
By Kerrie Smyres | April 10, 2012
Several people have asked me what the wraparound FL-41 glasses that Hart and I are making look like, so here is a picture of them on on yours truly. One of the comments I’ve heard frequently (and so did testers) is people like that they can see my eyes when we talk, unlike when I wore sunglasses all the time. So I feel less cut off from the world, too.
Upon arrival from Italy, the frames were held up in customs for a few days. After they were finally delivered at noon on Friday, Hart took them straight to the optical lab that makes the precision-tinted lenses. We hope they will be ready sometime this week. The website and shop will be up and running as soon as they are!
So exciting! So scary!
Topics: Coping, News, Treatment | 2 Comments »