By Kerrie Smyres | September 3, 2013
My fingers are crossed that I’m in the postdrome of a debilitating five-day migraine. My entire head throbbed with sharp pain localized above my left eye, my left ear ached and burned, and my teeth were intensely sensitive. I was nauseated and dizzy. I’ve been massively fatigued, my limbs feel weighted down, my mind is barely coherent, my body aches. It was definitely a migraine and, yet, migraine’s most famous symptom, head pain, was only a level 4.
This is my new reality. The pain is much less severe than it once was — for which I’m endlessly grateful — but the migraine attacks still come frequently and can still be debilitating. People who have “silent” (acephalgic) migraines can attest to this, but applying it to my own experience is difficult. While non-headache symptoms have certainly been troublesome in my years with chronic migraine, the screaming head pain has always taken center stage. With pain demanding my attention, I didn’t realize just how much of a toll the other symptoms took. Not only am I regularly astonished by how severe the non-pain symptoms are, I’m so used to pain being my guide that I tend to dismiss the impact of any other symptom.
I keep thinking that migraine, with it’s wide-reaching and varied symptoms, is a weird illness, though I have to wonder if migraine isn’t weird, but that popular understanding of it is flawed. Despite patient advocates and migraineurs yelling, “Migraine isn’t just a headache!,” head pain is the symptom everyone associates with migraine. Even I, one of those people who gets that migraine is a neurological disorder with symptoms that affect the entire body, get hung up on the head pain part of the issue.
I wish we could rename migraine and start fresh. That we could disseminate the current knowledge about migraine without the historical baggage and misunderstanding. That we could focus not on the head pain part, but on the neurological, whole body impact. Maybe then the world of non-migraineurs would have a bit more respect for the major impact this illness can have on a person’s life. Maybe then I could have a little bit more empathy and sympathy for myself when I’m laid up and telling myself, “But this migraine’s not that bad.” Because, while the pain was mild, the rest of it was pretty miserable.
By Kerrie Smyres | August 28, 2013
Baking. Attending yoga classes. Dancing to live music. Traveling with Hart. These disparate activities have a vital common thread: they restore me. How bad the migraines are, money, time, concert schedules, and even which migraine diet I’m on influence how often I do each thing, but at least one of these activities has to be a constant in my life for me to remain emotionally stable. They’re so crucial that I prioritize them unwittingly. Until this summer.
After I went off antidepressants, I was feeling off-kilter. I kept trying to pinpoint why. Was it because I’d stopped the drugs? Was it the weather? Was I homesick? Missing Hart? Bored? Lonely? Grieving my migraine losses? I finally figured it out this past week when, after returning home from Seattle, I went back to yoga for the first time since April and felt a deep calm that’s been elusive: I’ve barely engaged in any of my restorative activities in months.
How I Got Off-Kilter
In April, my yoga studio moved to a newly remodeled building. Even though they used eco-friendly materials to create the beautiful new space, the outgassing was too overwhelming for this sensitive migraineur. I looked for other studios, but couldn’t find another within a 30-minute drive that had frequent gentle classes.
Part of the reason I love to bake is that I love to eat baked goods. There are no “safe” baked goods on my current diet, so I haven’t been baking much. I still bake for others occasionally, but instead of being a relaxing endeavor, it feels fraught with danger.
Funk, world music, and jam bands are pretty rare occurrences in the Phoenix area. Having a band in town on a night I feel up to dancing and playing early enough it won’t wreck my migraine-dictated sleep schedule is even rarer. Hart and I have traveled to shows and festivals in the past, but that’s on hold while we’re launching TheraSpecs.
In fact, all travel is on hold while we’re living on an entrepreneur’s shoestring budget and dedicating all our time to TheraSpecs. Hart did spend a great week with me in Seattle, which was our first vacation in a couple years. Yay for frequent flier miles and friends who let us stay at their houses!
When I was desperately ill, I managed to work at least one of my necessary activities into my life. Now that I’m feeling better and more functional in years, I let them slide. This seemed ironic at first, though it makes sense upon further reflection — I’m no longer constantly craving rejuvenation. But, whether I’m aware of it or not, I still desperately need it. In fact, it may be even more important now that I no longer focus all my energy and attention on taking care of myself.
Unless tickets for this weekend’s Phish shows in Colorado fall out of the sky, yoga will be my revitalizer for the foreseeable future. I’m hoping to rejuvenate and get back into shape. Thankfully, the yoga studio has aired out enough to no longer be a migraine trigger.
What About You?
What activities restore you? Does your headache disorder interfere with them? Do you have to make time for them or do you do so without even realizing it?
By Kerrie Smyres | August 27, 2013
You know that feeling wrung out, spent feeling that follows the pain phase of a migraine attack? It’s technical term is “postdrome,” though “migraine hangover” is far more resonant. Read about common symptoms of the migraine hangover in my latest post on Migraine.com.
By Kerrie Smyres | August 26, 2013
The past two weeks have been filled with major brain fog. I try to write and the words just won’t come together. It’s not that I can only turn out mediocre drafts. It’s more like I’m looking at a puzzle and can’t even determine which pieces might fit together, never mind trying to figure out where they fit in the larger picture. I write words, move them around, delete and rewrite, but nothing makes sense.
That’s when I’m trying to write something from my own mind. Even more difficult is synthesizing information from other sources. I read the words and think I understand them, but can form no cohesive thoughts on them. I start sentences and am at a complete loss on how to finish them.
The pain of a severe migraine is horrible, the nausea can be gut-wrenching, the fatigue is a drag… those are all physical symptoms that, while miserable, are separate from my sense of self. My intelligence and ability to write, however, are critical elements of my personality. When I’m shrouded in a dense brain fog, I don’t feel ill, I feel dumb. And that’s something I don’t think I’ll ever learn to cope with.
By Kerrie Smyres | August 19, 2013
Migraineur: a person who has migraine (according to Merriam-Webster)
I use the term “migraineur” regularly to refer to people who have migraine. I’ve deliberately chosen “migraineur” over “migraine sufferer” in my writing because the latter makes us sound like victims, which I refuse to identify as. I also believe suffering is a state of mind and that one can have an illness without suffering from it. As the Buddhist wisdom says, “pain is inevitable, suffering is optional” — embracing that belief has been a life-affirming, empowering shift in my attitude toward chronic migraine’s role in my life.
Now I’ve learned from Am I a Migraineur? on the fabulous blog Migraine Monologues that “migraineur” has it’s own controversy. Some people believe that calling oneself a migraineur is tying a person’s identity to migraine. I had no idea it carried that connotation and, while I understand the argument, I don’t buy into it personally.
Maybe because I don’t really use migraineur as an identifier (I rarely say “I am a migraineur,” preferring “I have chronic migraine” instead), but to refer to someone or a group of people who have migraine — such as, “…anything that helps families better comprehend the plight of migraine is a boon to all migraineurs.” For me, “migraineur” is a less wordy way to say “people with migraine,” not an identity.
Or maybe I’m so opposed to “migraine sufferer” (and am not thrilled with “migraine patient”) that I have no room left to be offended by the alternatives!
What do you think? Do you have a preference for “migraineur,” “migraine sufferer,” “migraine patient,” “person with migraine,” or some other description?
By Kerrie Smyres | August 15, 2013
Migraine Guided Visualization, my latest post on Migraine.com, walks non-migraineurs through the symptoms of the pain phase of a migraine. What would you add to this “guided visualization”?
By Kerrie Smyres | August 14, 2013
“Wearing sunglasses indoors actually worsens your photophobia,” my headache specialist warned me when I wore my polarized sunglasses to my appointment. The effect is not unlike medication overuse headache — you use a product because it helps, but by using it too often (or indoors instead of out), you actually became more susceptible to the problem you were trying to solve. That appointment was the last time I wore sunglasses indoors or after dark. Now, whenever I see migraineurs recommend wearing sunglasses to deal with fluorescent lights, computer monitors, TV screens, or any other bright light (like here and here), I want to yell, “Please, please don’t wear your sunglasses indoors or after dark! It can make you even more sensitive to light!”
But I can’t because I’m a co-owner of TheraSpecs, so anything I say makes readers think I’m trying to market my product. In a way, I guess I am, but only because the tint on TheraSpecs provides a better alternative to sunglasses indoors and won’t increase a person’s light sensitivity. The same neurologist who warned me against wearing sunglasses indoors or after dark is the one who told me about the precision tint that filters out the painful wavelengths of light. He has no financial ties to a company that sells glasses with this tint, he just knows it’s a better alternative than wearing sunglasses indoors. Because his suggestion helped me so much, Hart and I decided to make light-blocking frames with this special tint readily available to anyone with light sensitivity.
Now I’m in this bind of wanting to share the information that I have — information that could help migraineurs avoid exacerbating a major symptom and potential trigger — while being silenced because some people may think it’s marketing. Yes, TheraSpecs makes great products that help a lot of people, but that’s beside the point. Migraineurs are potentially worsening their photophobia by wearing sunglasses indoors and are encouraging others to do the same — and because of my affiliation with TheraSpecs, I can’t warn them of this risk. It’s so frustrating!
By Kerrie Smyres | August 13, 2013
Just the thought of being vulnerable makes most people recoil. Open yourself emotionally to the whims of others? No, thank you! But when you’re sick, you have no choice. You must rely on others to take care of you or the responsibilities you cannot deal with; you have to repeatedly reveal your deepest agonies to health care providers (who may not be understanding) and hope they’ll give you the treatment you need; you have to let others see you at your worst, when you have absolutely no strength to keep up airs.
The vulnerability inherent in illness feels like a weakness, when the truth is actually the exact opposite. Vulnerability is a sign of strength and courage, as well as a powerful tool that allows us to connect deeply to others and live wholeheartedly, according to the research of social work professor Dr. Brené Brown. Her TED talks provide an inspiring look at vulnerability and shame (another major emotional factor in chronic illness).
I highly recommend watching both. In The Power of Vulnerability, Brown discusses her research and personal aversion to vulnerability, as well as how important vulnerability is living fully. Listening to Shame addresses the power of vulnerability as well, but looks at the epidemic of shame in our culture and the difference between guilt an shame — an important distinction for those of us with chronic illness.
Brown’s talks aren’t proscriptive, but provide insight into the power and strength of vulnerability. Although I didn’t realize it, I’ve been applying the principles she discusses as I’ve become increasingly open about the true impact of chronic migraine on my life. In letting people see me when I was at my sickest, in reaching out for help when Hart and I were alone in a new city, in not hiding the magnitude of my pain or degree of disability from friends, my connections to others are so much deeper and richer than in all the years I tried desperately to pretend I wasn’t as sick as I am.
By trying to hide chronic migraine, I was putting a wall between myself and anyone who tried to connect with me. Because of my shame over being sick, I wasn’t living honestly or authentically. No one could know me, not even myself. It’s not coincidental that I lost my sense of identity at the same time I was attempting to be invulnerable.
Vulnerability is frightening for everyone. To be open about an illness that is heavily stigmatized and often dismissed as inconsequential or made up is even more terrifying. And, yet, Brené Brown’s research shows that being vulnerable is the key to living wholeheartedly and authentically. It is also a sign of tremendous strength. As she says in her talk on shame, “vulnerability is our most accurate measurement of courage.”
By Kerrie Smyres | August 12, 2013
Everyone with chronic migraine knows it takes a massive toll on romantic relationships and families, but there’s little research on the topic. Here’s your chance to help remedy that. Karen Bacher, a migraineur and family studies PhD student at the University of New Mexico, is recruiting couples to complete an online survey to study the impact of migraine on the families of women with chronic migraine. By sharing her findings, she hopes to raise awareness among health care providers, counselors, and patients’ families.
Participants need to be married or cohabitating heterosexual couples between the ages of 21 and 55. The female must have chronic migraine, while their male partner must not have migraine. Partners will complete an online survey separately, which takes about 45 minutes per person. At the end of the survey, participants will have the option of entering a drawing for a $100 Visa gift card.
Couples interested in participating may contact Karen at firstname.lastname@example.org for full eligibility criteria, benefits of participation, and the survey link.
Although I haven’t seen the survey, I’ve been emailing with Karen and am really excited about this research project, which is for her dissertation. I believe Karen “gets” the severity and impact of migraine and genuinely wants to do her part to improve the lives of chronic migraineurs. In case you’re not sure, it may help to know she’s had migraine for 29 years and gets no relief from medication, while her sister is disabled due to migraine.
I’m unable to participate because Hart has episodic migraine, but I urge you to do so if you fit the criteria. Understanding the weight of chronic migraine on families and romantic relationships is one crucial element in de-stigmatizing this illness. It could also improve our care from doctors and therapists. And, of course, anything that helps families better comprehend the plight of migraine is a boon to all migraineurs.
By Kerrie Smyres | August 10, 2013
Another migraineur has taken her life. I have few details, but those I do have paint a heartbreakingly common picture: She wasn’t taken seriously by doctors and did not receive proper care despite being in massive pain. She’s the second person I know of who has taken her life because of migraine in the last two months. I have to wonder how many others have done the same, but their deaths haven’t made the migraine news circuit.
I could rail against the medical system that knows so little about migraine, the lack of funding for research into this disabling condition, the majority of society who thinks we’re faking migraines to get out of making dinner, the stigma of migraine, people who can’t open their minds enough to even consider migraine as a debilitating illness….
There are plenty of reasons to be angry, but right now I’m just sad. Sad for all the people who are so desperate in their struggle with chronic migraine to consider or attempt taking their lives. It is such a lonely, terrifying emotional place to be. I know because I’ve been there myself.
There are a few things I want everyone with chronic migraine to know:
You are not alone. Connect with migraineurs on a forum like Migrainepage.com or the one on Migraine.com. Forums are the best place to find people who who understand the toll of chronic migraine and can help you cope with it. Talking with people who understood this lonely and stigmatized illness helped me through my worst days.
There’s always hope, hope for better health and hope for learning to live well despite chronic illness. I tried more than 36 preventives before finally finding some effective ones. I still have migraine attacks most days, but the pain is so mild that it feels like an entirely different illness. I am not “cured,” but I am grateful for every single day. Mindfulness techniques were a tremendous help in coping while I was still mired in daily pain of level 7 and higher. Start with How to Be Sickby Toni Bernhard; if you want more, see my recommendations in Migraine & Mindfulness on Migraine.com.
If you aren’t getting adequate treatment or feel like your doctors are dismissive, see a headache specialist. General neurologists get mere hours of training in headache medicine; you have the best chance of finding someone who truly understands migraine and its impact by seeing a headache specialist. Find specialists on the Migraine Research Foundation’s list of doctors certified in headache medicine, the National Headache Foundation’s physician finder, or the American Council for Headache Education’s provider search.
A therapist is a necessary health care provider. Chronic illness is a drag and migraine has its own infuriating stigma. This is a hard life to live and no one should have to navigate it on their own, nor should any romantic relationship or friendship have to bear the weight of it alone. Ask your doctors for recommendations, ask for suggestions on forums, or check Psychology Today’s therapist finder.
If you are considering suicide, contact the National Suicide Prevention Lifeline at (800) 273-8255. Trained staff will receive your call and help you sort out what’s going on. Even if you’re not at immediate risk of suicide, they will help you create a safety plan to keep you safe in case you ever reach that point.
Hang in there. The bad spell will not last forever. It may not feel like it right now, but you will get a break.
I fear that advice is oozing cliches, but each one is abundantly true. Keep in mind they’re coming from someone has had such severe, unrelenting chronic migraine that death has sometimes seemed a better alternative. Someone who is thrilled to be alive and experiencing what every day has to bring, both good and bad, after finally finding helpful preventive medications.
As my husband once told me, life with chronic migraine is way harder than any life should be, but that doesn’t mean it’s not worth living.
By Kerrie Smyres | August 9, 2013
The Migraine Research Foundation has released updated lists of doctors certified in headache management, including a list of doctors who treat children. Anyone can hang a shingle saying they are a headache specialist, even without any special training. MRF’s lists only include doctors who have passed a certification exam verifying their knowledge of headache medicine. Check out this excellent resource if you’re looking for a specialist to treat your (or your child’s) migraine or headache disorder.
- Migraine Research Foundation Directory of Diplomates in Headache Medicine (PDF)
- Migraine Research Foundation Directory of Children’s Headache Doctors (PDF)
By Kerrie Smyres | August 8, 2013
Wondering how to take care of your kids when you’re laid up with a migraine? 40 Ways to Entertain Your Kids While Lying Down has some great for suggestions. Some may not be feasible depending on the severity or symptoms of the migraine, but maybe you’ll find some suggestions to keep your kids happy when you’re out of commission. Check the comments for even more ideas.
By Kerrie Smyres | August 7, 2013
Being in Seattle this summer has brought emotional turmoil. I love it here and am grateful to get to spend time away from the Phoenix storms. But, I love it here and am angry that migraine is the reason I don’t live here. The grief from not being able to live in the city that feels like my home is immense.
In My Favorite City, Another Migraine Loss, published today on Migraine.com, I wrote about my immense grief and the anger it triggered after I visited my old neighborhood:
“The tears flowed, not out of nostalgia for the times I had here, but grief for how much I love this place I do not live and that migraine is the reason I do not live here. … I’m also angry that migraine has made this choice, and so many others, for me. I didn’t invite migraine into my life, and yet it weighs in on every single decision I make.”
I wrote that post a few weeks ago and my emotions have settled down a bit. The grief is no longer acute and I don’t feel quite as connected to the city as I once did. Perhaps that’s because Seattle has changed a lot in the last four years; perhaps because Hart just visited for a week and I realized that, more than any particular location, he is my home. Or maybe it’s just the ebb and flow of grief.
By Kerrie Smyres | August 6, 2013
After writing about the loss of identity that I experienced with chronic illness, I wanted to give some suggestions for rediscovering one’s sense of self. Most of the recommendations are time-intensive and arduous — like finding a good therapist, practicing mindfulness, and learning about Buddhist psychology — but there’s one little gem that brought me rewards far greater than it’s $15 price tag.
It’s called Strengths Finder 2.0and is marketed as career guidance, but that’s beside the point. It’s a book, but it’s mostly a personality quiz that you access online using a code in the book. As the title indicates, the quiz results focus on a person’s unique strengths, something that I had trouble doing after years of migraine and depression. Instead of reminding me of the weaknesses I’d spent years dwelling on, the quiz refocused my attention on my strengths, which was invaluable in regaining a sense of my true self.
I took the Strengths Finder quiz two years ago, when I was too sick to put the findings into any practical use. I still haven’t applied them directly to my percolating career goals, but I have benefited enormously from the reminder of my core characteristics, which remain untouched by chronic migraine. The peace of mind of remembering who I am was well worth $15.
By Kerrie Smyres | August 5, 2013
“Because of my illness, my faults are in plain view. It’s simply too hard to hide that I’m selfish with my time, can be terribly insecure about the most bizarre things, and have great intentions with little follow-through.”
This excerpt from Friends, Family & Illness, a January 2007 post, hit me hard when I re-read it. I stand by the assertion that my faults are in plain view because chronic illness takes all the energy that might otherwise go toward hiding them. What I take issue with is the list of my “faults.” These are not faults, nor are they inherent to being me. They are all the factors of having debilitating chronic migraine.
Six-and-a-half years ago, migraine had completely obscured my sense of self. What I called selfish was me desperately trying to take care of myself and reduce the ravage of migraine on my life. Insecurity about bizarre things? That was keeping the pretense of health when I was terribly ill. Not following through? Following through on promises to others is hard to do when you’re so sick that getting to the bathroom and feeding yourself are your main priorities in a day.
My health had been in steady decline for, oh, 20 years before I wrote that original post and in free fall for at least five. I was a few months from adding constant, severe nausea to my list of symptoms. I hadn’t yet reached my worst, most debilitating years of migraine, but they weren’t far away.
At the time, I was aware that I was floundering in search of my identity, which I thought was buried under migraine. Now I see that I was trying so hard to retain a semblance of self that didn’t include migraine that I perceived myself as someone I wasn’t, nor had ever been. I was trying so hard to pretend I was normal despite the constant seismic activity in my body that I completely lost sight of who I was.
Identity loss. Now that’s an aspect of chronic migraine that doesn’t even make the other migraine symptoms lists, but it caused as much upheaval as the pain and nausea ever did.
By Kerrie Smyres | August 2, 2013
Curious about nerve stimulation for chronic migraine and what the research has to say? For Nerve Stimulation Research, my latest post on Migraine.com, I pored over all the published research, hoping to summarize it neatly, but the findings are too ambiguous to do so. Instead, I explain some of the reasons why older published studies aren’t generalizable and summarize findings from recent large-scale studies with control groups.
By Kerrie Smyres | August 1, 2013
The outside world either thinks writing is my job or that I don’t work at all. In truth, I work constantly. When I’m lucky, that work is writing; most of the time, that work is chronic migraine. I never leave work. Never. I never have downtime and I don’t get to leave my work at the office after a long day. My work wakes me up in the night and I check on it first thing in the morning. I imagine it’s not unlike the tireless, thankless work of a stay-at-home mom, without the rewards of giggles and kisses from an adorable little one.
When I was at my sickest, I expended all my physical and mental energy just to keep myself going. It may have looked like I was lying in bed, but I was giving it my all just to ensure I’d wake up the following morning. That may sound melodramatic to some, but any migraineur who can imagine being chronic will understand it’s not.
Now that I’m doing a little better, I work constantly to try to maintain or increase the improvement, monitoring my diet like a hawk, building up my physical strength, avoiding triggers, researching potential comorbidities, considering other treatments, attempting to maintain balance so I don’t push myself into a severe attack, working through the deep well of grief wrought by spending much of my 20s and 30s disabled.
I keep talking about how much better I feel these days. At my current peak, I function at 70% physical or mental capacity (not both) for a couple hours in a day. Most days I’m thrilled with a few hours at 50%. A so-called good day means I don’t have to focus all of my attention on my health and can instead tend to normal things of life, like cooking, doing laundry, paying bills. I’m tremendously grateful to have this much ability, while simultaneously angry that I work so hard for only partial functionality.
I may not have the money, social stature, or outwardly visible accomplishments associated with hard work, but my effort is commensurate with that of a self-made multibillionaire.
By Kerrie Smyres | July 31, 2013
Although migraine and cancer are very different, there’s a common thread in the idea of envisioning illness as a “gift” — an opportunity for personal growth or recognizing our blessings or making us a stronger. Is Cancer a Gift? reflects on this mischaracterization of illness.
Yes, illness can make us aware of the goodness in our lives and highlight all we have to be grateful for, but any hardship in life can have the same result. Putting a happy face on a life-threatening disease like cancer or a life-altering one like migraine sidesteps the harsh realities of illness and minimizes the tremendous grief and loss a patient endures.
These words of Lisa Bonchek Adams are particularly poignant:
“A gift is something you want to share.
“Something you want to give to someone else.
“Something [about which] you say ‘Next time I need to give a special gift to show someone I care, this is what I want to give.’
“Cancer is not that thing.”
Neither is migraine. I would happily trade all the insights I have gained from chronic migraine for living with the blissful ignorance of a healthy 20- and 30-something.
By Kerrie Smyres | July 30, 2013
There are several particularly horrible experiences in my time with chronic migraine that stand out vividly in my memory. Instead of pushing them down and trying to hide them away, I hold on tightly as a reminder of my incredible strength and fortitude. Read about those memories and the lessons they have taught me in Migraine Strength on Migraine.com, in which I say to all migraineurs currently in a place of despair,
…[P]lease believe that you are enormously brave for hanging in there. You are not weak because you are sick, but are instead stronger and more courageous than you can possibly imagine. Keep waking up each day and continue to try new treatments. You will eventually find relief.
By Kerrie Smyres | July 29, 2013
Exciting news: I’m off all antidepressants for the first time in eight-and-a-half years! Going off them has been s-l-o-w going because I haven’t been willing to put up with any withdrawal symptoms, which even my doctor’s modest titration schedule resulted in. While I would never advise anyone to adjust their antidepressants without a doctor’s supervision, I’m sharing how I avoided withdrawal symptoms in case it helps anyone in a similar situation.
Wellbutrin was the easiest. I was taking four 100 mg tablets each day and cut back 100 mg every few weeks and had no symptoms.
Lamictal was next. I had a backlog from a mail order prescription, so instead of getting a prescription for a lower dose, I cut the tablets into smaller and smaller pieces as time went on. If I felt withdrawal symptoms, I’d take another small piece, effectively increasing the dose. It took me a couple months before finally stopping.
Cymbalta was the difficult one. With a starting dose 60 mg, even reducing by 10 mg was too much for me. My solution was inelegant and imprecise — and not medically recommended: I opened the capsules and counted out the pellets inside, subtracting a greater amount each week. Having a pharmacist divide the meds or, at the very least, using a scale would have been smarter, but I had another accumulation of meds from a mail order prescription, was impatient, and didn’t want to buy a scale just for this purpose.
It took some fiddling to determine the right amount to decrease by and how frequently to do so. There were about 220 pellets to begin with. By the time I got to 120, I was opening each capsule and counting up instead of down. I’d drop by 10 pellets every week. When I was down to about 50 pellets, I started dropping by five pellets every five days. The whole process took more than six months, but I did it with no increase in depression-like symptoms and no other withdrawal effects, like brain zaps, wooziness, or dizziness.
After a week being off all the drugs, I wrote: “I’m a little more teary — both sad and happy tears — though I find it hard to believe that five pellets of Cymbalta can really make a difference. Maybe I’m more emotive because of the work I’ve been doing in therapy. Or maybe my emotions are no longer dulled by drugs.”
Now that a couple more weeks have passed, I’ll admit that I definitely feel more non-specific sadness, a sort of generalized depression, than I did when I was on the meds. This could be a recurrence in depression symptoms or withdrawal symptoms. Again, it seems strange that going from only five pellets of Cymbalta a day to none could be the culprit in either case, but even just five pellets are the difference between some and none.
According to this Harvard Women’s Health Watch newsletter, if you take a dose of the medication and the symptoms stop immediately, it’s withdrawal and not a recurrence of depression. I finally gave in and tested this today. With only five pellets, the generalized sadness that’s been plaguing me lifted within a couple hours. So I may go back to taking a few pellets a day. I’d prefer to be off it entirely, but I’d much rather be on the drugs than slip into another depression.
Lest you’re worried about me, know that I’m being vigilant, tracking my mood carefully, and am keeping my therapist/naturopath updated on my symptoms, so I don’t relapse. I’ve been on antidepressants most of my adult life and really want to know what I’m like without them, especially now that I have tools for dealing with emotions that I’ve never had before. Still, I’m not willing to risk a slide into depression to find out, so I’m being extremely cautious.
By Kerrie Smyres | July 26, 2013
When my chronic migraine was at its worst, I did not feel like I was living a life, but was barely clinging on to survival. Now that I’m coming out of more than a decade of severe chronic migraine, I see not only how much I lost, but how full my life was despite the nearly constant severe, disabling migraine attacks. Read about in Coming to Terms With the Losses of Chronic Migraine on Migraine.com.
By Kerrie Smyres | July 25, 2013
Exercising outside is one of the most enticing parts of summer in Seattle. To avoid triggering a migraine attack, I wanted to keep my exertion level about the same as it has been on the treadmill at home, so I downloaded some pedometer apps for my phone.
How demoralizing! These apps are designed to encourage healthy people whose only obstacle is a lack of motivation to get moving. They aren’t intended for someone who desperately wants to exercise more, but has to be very careful not to overdo it. The app I used first has a preset goal of 10,000 steps a day with a scale indicating what my level of fitness is.* After 2,200 steps, that scale still declares me “sedentary.” Trust me, I KNOW I’m sedentary and that walking a 20 minute mile doesn’t constitute impressive exercise. I don’t need an app to remind me that the best I can do right now is substandard.
Instead of feeling good about the one mile that I walked — and the beautiful view of Lake Washington that I glimpsed — I came home nearly in tears. I want to be physically fit. I want to walk 10,000 steps a day. I want to leave a yoga class with my muscles aching. I want to run for miles. Yet, what I want and what my body can currently handle are not in alignment.
Couch-to-5k? A hardcore seven-minute high-intensity interval workout? I’m there. Well, I would be if my body didn’t react with a migraine that would lead to at least three days on the couch. Trying harder, exerting more is a perfectly fine option for a lot of people. For me, it’s counterproductive.
I’ve (mostly) let go of the belief that having chronic migraine means my body is broken. Carrying around that sense of betrayal constantly highlighted what was lacking in my life and my body. Rather than dwell on what I can’t do, I try to revel in what I can do. That works most of the time. Then I use an app that reminds me that even though I’m exerting myself at my current maximum, my effort — and perhaps my very self — is deficient.
*I know these apps are intended to count one’s total daily steps and I’m only using them for active exercise. If I carried my phone around with me constantly and saw the steps around the house add up, I’d either be pleasantly surprised or even more dismayed. I choose ignorance.
By Kerrie Smyres | July 24, 2013
Migraine treatment is sparse and woefully inadequate, in large part because research is severely underfunded for this disorder despite the fact that 36 million Americans have it. Less than 1/20th of 1% of the National Institutes of Health’s budget is allotted for migraine research. That’s about $16 million; $260 million is the amount that would accurately represent the prevalence and magnitude migraine.
The 36 Million Migraine campaign, sponsored by the American Migraine Foundation, seeks to remedy this disparity. If every single American with migraine donated just one dollar, they could raise $36 million for migraine research. If you reached a little deeper in your pockets or encouraged your loved ones to donate for migraine research, just think of the impact we could have.
Learn more about the campaign in this brief brochure (PDF), on the AMF’s website, and in the campaign kick-off interview with spokesperson Cindy McCain. Then make your donation of any amount online or by texting 36mill to 50555 to donate $10 today. And encourage your loved ones to kick in a few bucks, too. We desperately need the research!
By Kerrie Smyres | July 23, 2013
Clouds, not barometric pressure or weather changes, seem to make my pain and other migraine symptoms worse. It doesn’t track with conventional wisdom on weather triggers for migraine, but the correlation couldn’t be more obvious for me.
These past two weeks in Seattle have been marvelously illustrative. I’ve felt best on the few totally clear days. More common is a solidly overcast morning sky with clouds that burn off in the early afternoon. I feel worse when there are clouds and better when they clear. Period.
I wake up in the morning and know it is overcast based on how my head feels (I’m sleeping in a basement, so I don’t have the light as an obvious clue). The pain starts to let up and I look outside to discover the clouds are clearing. Within an hour of the clouds clearly completely, I’m back to my baseline pain or just above it and have more energy and less brain fog. The same is true when the morning starts out clear and clouds roll in later in the day.
My mood and food cravings also track with the clouds and my pain levels. I feel generalized depression (rather than sad about a specific event or thought), have free-floating anxiety, and worry more; I also crave sugar and carbs. I’m guessing these are symptoms that kick into gear when the migraine is more severe. They are definitely symptoms I experienced regularly when my migraines were more severe on a daily basis than they’ve been in the last year. While I’m well aware of seasonal affective depression, I understand it to be a longer term phenomenon than just a cloudy few hours.
One day last week did fit the belief that weather and/or pressure changes trigger migraine attacks. A thunderstorm, a rare event for the Seattle-area, brought a level 6 migraine, the worst mine get these days (knock on wood). WeatherSpark tells me there was also a dip in barometric pressure that day. Otherwise, the barometric pressure variations have been minimal and the migraines, while annoying and moderately painful, haven’t been too disruptive.
It seems weird that clouds could have such an impact, but I’ve been practicing listening to my body and tracking very carefully. I have no doubt there’s a correlation for me. Anyone have enough atmospheric science knowledge to speculate a connection? Anyone else experience this seemingly odd phenomenon?
By Kerrie Smyres | July 22, 2013
You must watch The Faces of Migraine! This incredible six-minute video illustrates the startling statistics of migraine and the profound impact it has on patients’ lives.
Patient advocate Ellen Schnakenberg, her son, and a team of volunteers put together The Faces of Migraine. They’ve done a wonderful job of depicting the harsh realities of migraine. Please watch and share with your loved ones to help spread the word about migraine.
Go to the Faces of Migraine website to share your story or suggest future video projects.
By Kerrie Smyres | July 19, 2013
The stigma of migraine and society’s perception of illness, as well as the internal voice that judges me during a migraine attack have all been swirling around in my mind lately. The topics came together in Internalizing the Stigma of Migraine, which quickly became my most popular post on Migraine.com. I’m both saddened by the number of people who identify with this experience and honored that I can give voice to the torrent of emotions that accompany migraine.
Here’s a short excerpt from Internalizing the Stigma of Migraine:
I have to wonder if I and so many other migraineurs berate ourselves not only because other people regularly distrust that migraine is a true physical illness, but because we have internalized those same doubts.
This is where the stigma of migraine is especially damaging. Dealing with people who don’t understand — and don’t seem to want to understand — what we’re going through is frustrating and infuriating. Believing it ourselves is way more harmful because it demoralizes us and causes us to question the legitimacy of our own experience.
By Kerrie Smyres | July 17, 2013
I’m writing this with a level 6 migraine. That’s the most painful a migraine has been for me in the last 11 months. Although I remember the years when the pain didn’t drop below a 7, regularly hit 8 and 9, and was sometimes so severe I tempted fate and rated the pain a 10, I don’t remember what the pain actually felt like. That’s one of the courtesies of the human body — an inability to remember severe pain. So when I rate my pain a 6, I know it hurts a lot, but also recognize that it can be, and has been, much worse.
In some ways, level 6 pain is more difficult for me to endure than higher pain levels because I’m still fully present. At level 7 and higher I dissociate; I stop being present with the pain. It’s like I leave my body and numb out for a while. I also become less coherent, sometimes even incoherent.
It’s strange to me to be writing a post when I’m at my current maximum pain level. I’m used to associating maximum pain with an inability to think. My thoughts aren’t entirely clear and I’ll likely find mistakes in this post when I read it when the migraine has let up. Still, the words make sense, the sentences are logical. I’m not writing “refrigerator” when I mean “shoe” and I can complete thoughts. That’s partially a function of reduced pain and part that this particular migraine isn’t causing too much cognitive impairment.
In fact, this is what I’d call a “pure pain” migraine. My other symptoms are minimal, but my head is screaming. That classic symptom of migraine pain being exacerbated by movement is also on display. Pain is bad and difficult to ignore, but pure pain migraines are much easier for me to put up with than the energy-depleting, mind-draining ones.
I’m not sure why I’m sharing a stream of consciousness about this migraine attack, other than it’s interesting to step back and examine the experience. I want to be aware of and remember it so I can go back to being grateful that level 4 is my typical max pain level.
I’m also feeling grateful for the efficacy of my current preventives. The migraine attacks are still daily, but a level 4 is nothing compared to even a 6 and is infinitely better than higher levels of pain. Someday, though, the preventives could stop working, a reality that’s never far from my mind. This migraine reminds me what my days could return to. I’m fearful and also furious.
Furious that migraine is highly stigmatized and research is massively underfunded, that every preventive medication was created for another illness and efficacy for migraine was an incidental discovery, that only one novel drug class (triptans) have ever been developed to treat migraine. Worldwide, 18% of women and 6% of men have migraine; 36 million people in the US alone have migraine. The World Health Organization ranks migraine in the top 20 most disabling illnesses on the planet.
Where’s the effective treatment? Where’s the funding to train headache specialists? Where’s the research that will mean my 16-year-old niece isn’t debilitated by migraine 20 years from now? Who decided there’s no value in my quality of life?
- American Migraine Foundation: Facts About Migraine
- Migraine Prevalence and Incidence
- The Migraine Trust: Key Statistics
By Kerrie Smyres | July 16, 2013
Before our COBRA coverage ended last month, Hart and I spent months scrambling to find health insurance to cover us until the pre-existing condition coverage of the Affordable Care Act goes into effect in January 2014. Our experience was even more complicated than expected and brought home just how faulty the current health care system is.
Having been denied coverage by every health insurance company in Arizona, private health insurance isn’t an option. We couldn’t even get a high-deductible plan.
After tons of research, it looked like we were down to two options: joining a small business organization’s group plan and spending more than $1,000 a month for a plan with a $10,000 deductible per person and high co-pays or enrolling in classes at a community college and paying for student health insurance.
The first option tied our stomachs in knots. That’s a major financial burden even if we are both perfectly healthy for the next six months. And spending that much money for mediocre coverage wasn’t palatable.
The student health insurance is far more appealing, but coverage doesn’t begin until August. Hart and I both like to have our ducks in tidy rows when it comes to this sort of thing. The thought of going even a month without insurance would have us both losing sleep. Even though the chances of getting injured in an accident, having a stroke, or having a heart attack are small, they risk is enough to worry both of us.
More distressing is that the plan is being rewritten to comply with the Affordable Care Act and details have yet to be released. We have no idea how many credit hours we’d have to take, what the coverage would be, or how much it will cost. All we know is that it will look different than previous years’ plans.
Then an entrepreneur Hart knows mentioned that she had short-term health insurance that didn’t cover pre-existing conditions, but does cover new diagnoses or accidents. We didn’t qualify for some plans, but did find one company that would provide us six months of coverage at less than $250 a month. Migraine’s not covered for either of us, of course, but we’re less likely to go bankrupt if one of us has a catastrophic health problem in the next six months. It isn’t an ideal solution, but it is way less expensive than the alternatives (and than what we paid for COBRA) and, fortunately, Hart and I both currently have prescriptions for only generic drugs.
We’re now on the short-term insurance, so we’re covered until four days before Obamacare goes into effect — assuming politics don’t derail it. (We’re planning to spend the last four days of the cooped up at home, doing nothing so dangerous as using a ladder.) Some sort of health coverage is guaranteed come January, though we won’t know until October what our coverage options will be or how much we will have to spend.
Last June, Hart and I both fretted while we waited for the Supreme Court’s ruling on the Affordable Care Act. Then we worried that if Romney won the presidential election and succeeded in repealing Obamacare, we’d have to abandon TheraSpecs so Hart could get a corporate job with health insurance. Whatever your politics, its undeniable that a system that won’t provide health coverage to people who are willing to pay through the nose for it is defective. Especially considering that, while we aren’t in perfect health, neither of us has a disease that’s particular expensive to treat. Triptans aren’t cheap, but they cost pennies compared to chemotherapy or $15,000-a-month injections for MS.
The costs and benefits of the Affordable Care Act/Obamacare won’t truly be known for years. It may not be an ideal solution, but the system that’s concentrated in for-profit companies and ties health coverage to employment is way out of whack. The next few years — or even decades — could be rocky, but I’m hopeful we’re on the way toward improving the impoverished approach we currently have.
And I’m grateful that Obamacare’s existence means we can keep TheraSpecs, a company that seeks to improve the lives of people in pain, going.
By Kerrie Smyres | July 15, 2013
TheraSpecs Classic, our newest, lightest, and most affordable frame style is now available! As you can see, this timeless style looks great on both women and men, whether worn indoors or out. Plus, they weigh in at only 22 grams. Classics are only $99 for indoor lenses and $129 for polarized outdoors lenses. Classic frames can also be ordered with prescription lenses for a slightly higher cost. Email us for details on Rx orders or on sending in frames for totally custom TheraSpecs at email@example.com.
Wondering why I’m advertising migraine glasses? TheraSpecs is the company my husband, Hart, and I started after my neurologist told me that wearing sunglasses indoors was increasing my photophobia. He told me about a special tint that reduces light sensitivity, but I had trouble ordering glasses with that tint. Hart used his product management background to source frames that fit all my requirements and I loved them so much that we decided to start a company to make them readily available to anyone who is sensitive to light. You can read about our journey to start TheraSpecs in Big News for Relief From Photophobia & Sensitivity to Fluorescent Lighting (CFLs) and learn more about TheraSpecs on our website and by following us on Facebook and Twitter.
By Kerrie Smyres | July 12, 2013
“Ear plug connoisseur” is not a title I strove to achieve, but I’ve become an expert nonetheless. My requirements are fairly simple: cylindrical foam without a flange at the end, which makes them too long and applies pressure when I lie on my side. Seems easy to find, but it isn’t.
Flents Quiet Please! are my gold standard. Though even they have diminished in quality in recent years and no longer last as many wearings as they used to. I blame it on the recession. At less than $20 for 100 pairs from Amazon, at least they’re affordable, even though my internal environmentalist cringes whenever I throw them away.
I’ve been fooled recently by CVS’s version that looks to be identical. They are more rubbery than foam, which means they expand and hold their shape great. Unfortunately they expand so much that they exert enough pressure to make my ears sore, even when I don’t have a migraine. During a migraine, when my left ear often hurts, the earplugs make that pain excruciating. Also, they are so tight and impermeable that they cause moisture buildup in my ears even when I don’t have migraine night sweats. Ew.
Rite Aid, however, makes an excellent look-alike that I might even prefer to the latest incarnation of Flent’s Quiet Please! Unfortunately, they don’t sell them online and they have no stores in Arizona.
Because I wear ear plugs every night and often when I’m running errands — and I’m an environmentalist at heart — I’ve often considered custom-molded ear plugs, but Hart had a pair for a previous job and they never fit right, even after multiple adjustments. The potential hassle has kept me from pursuing this option.
Do you have a favorite ear plug or an experience with custom-molded ear plugs? Please share — I can’t be the only unintentional ear plug connoisseur with a story to tell!
By Kerrie Smyres | July 11, 2013
While time management for accomplishing daily tasks on schedule despite chronic migraine still eludes me, I’ve found a system that works for me for big activities, like a party, travel, or even attending an important work function with Hart. I have to budget my time very carefully. I plan out everything I need to do, break it down into small tasks I can reasonably expect accomplish each day, and allow for a few extra days in case I have to take a day off. I always give myself way more time than I think I need and work in time to rest as well. I focus all my energy on these specific tasks and set aside everything non-essential.
I’ve just arrived in Seattle where I’m house sitting for the rest of the summer to get away from Phoenix’s monsoon season. Getting here has been convoluted. My mom, who lives outside of Portland, OR, is lending me her car this summer. Monday I flew there and spent the evening with my family. Tuesday I drove to Redmond, WA, to stay the night with a high school friend. Wednesday I picked up groceries (I’m still on an über strict diet that requires making all my food super fresh and freezing it) and moved to the place I’m house sitting for three weeks. This was all after spending last Thursday to Saturday in Flagstaff, AZ. I did some packing for Seattle before Flagstaff, then dedicated Sunday to finishing that up.
A healthy, energetic person wouldn’t find this schedule taxing; I found it stressful and exhausting. I’m more than a little embarrassed about that. Most of my years with chronic migraine, I have pushed myself constantly, pretending that I had a healthy body that could withstand a normal schedule. In admitting that I don’t and I can’t, I’m able to manage life and cope with the migraine attacks a lot better. I am mostly happy with it in my day-to-day life, but writing about it publicly is uncomfortable.
Admitting how much effort I expend to accomplish so little is humiliating. I hear the voices of all the people who have told countless migraineurs (and those with many other chronic illnesses, I’m sure) that we’d get better if we only tried harder or worked at it more. Despite knowing that method is not only fruitless, but counterproductive for me (and probably for most people with chronic illness), I still feel ashamed to share the unimpressive minutia of my daily life. I know intellectually these naysayers are wrong — and I’m even beginning to believe this in my heart — but I nonetheless feel defective in the eyes of society.
Being sick is really hard work. Those who have never had an extended illness have no idea how difficult it is. And, sadly, many of them are unwilling or unable to step outside their experience to consider what we go through. Still, those are the voices that haunt me as I work my butt of to manage chronic migraine. I want to be well and I want to be a productive member of society. It’s infuriating to know that others refuse to see this and instead pass judgement, assuming their way is the only right way, and that I must be doing something wrong if I’m not getting better.
I’m not one to care much what other people think… unless I fear there is truth to what they believe. Rationally I know they are wrong, but I can’t seem to shake my own doubt. I’m not defective or lazy and I want others to stop thinking that I am. Because if they don’t believe it, maybe I won’t either.
By Kerrie Smyres | July 3, 2013
I’ve done what journalists call burying the lead in this post. If you want get to the heart of body scans, skip on over to Learning to Listen to Your Body, my latest post on Migraine.com. To understand how listening to your body relates to your life, migraine, chronic illness, and society, keep reading.
Spending time with mothers of young children recently, I’ve been struck by how in tune they are with their children’s needs. Even though the child can’t speak, their mothers know that that a certain squirm means “let me down,” while another indicates a dirty diaper, that a particular squeak means the child is hungry.
Imagine being that in tune with your own body. Think how valuable that knowledge could mean for someone with migraine, whether episodic or chronic, or any other illness, for that matter. If you can identify early warning signs of an impending attack or downturn, you can take appropriate medications or avoid overtaxing yourself, resting when needed rather than only when you’re completely exhausted.
This knowledge is particularly valuable in migraine, since the first phase of an attack, called prodrome, causes physiological changes in the body that many of us are unaware of. Some people yawn a lot, feel tooth sensitivity, have a creative surge, get hyperexcited or depressed, or a host of other symptoms. Unless you’re aware of the minute changes in your body, you may not know a migraine is coming on before it whacks you over the head. Knowing your personal prodrome symptoms are crucial, since migraine abortive medications are more effective the earlier in an attack you can take them.
We are all capable of being as aware of our own bodies’ needs as a parent is of their child’s needs. Living in a culture that prizes busyness and activity over any downtime most of us have never learned how to listen to our bodies or take care of ourselves. When we get sick, we continue ignoring what our bodies have to say — sometimes as a coping mechanism, sometimes because that’s the only way we know how to function. We do so at our own peril and, I fear, ultimately worsen the symptoms of illness.
Fortunately, listening to our bodies is a skill we can learn, just as we can learn to play the piano or bake cookies. Meditating is one way I’ve learned to listen to my body. A body scan, which can be part of a meditation practice or done on its own, is an excellent, clear-cut method for learning to hear what your body is telling you. Learning to Listen to Your Body, my latest article for Migraine.com, walks you through a short body scan and recommends some resources for a guided body scan. Like mastering any skill, it takes practice, but the reward is worth the effort.
By Kerrie Smyres | July 1, 2013
There’s an internal critic in my mind, a voice that judges me for lying on the couch and being unproductive during a migraine attack. This critic is a young, healthy person who has never had a migraine. That’s right, I constantly assess myself against a standard that has never applied to me.
Like a 50-year-old who looks in the mirror and berates herself for not looking like she’s a 20-year-old runway model, I evaluate myself against an entirely unrealistic standard. No wonder I’m forever falling short. I am not young and healthy; I never have been. Yet I regularly tell myself I should act as if I were.
I’m not alone in this. I shared a version of the first paragraph of this post with a chronic migraine forum and was shocked to see how many people identified with what I wrote. Not a day passes without a migraineur in my social media sphere saying they’re a bad parent for missing a kid’s sporting event or they’re lazy for letting dishes pile up or they’re weak for not being able to get through the day of work — all because of a migraine attack.
None of these people are stuck in bed because they are self-centered or weak or lazy or attention-seekers, but because they are ill. They aren’t staying home because they don’t want to participate in life, but because they are too sick to do so. Still, they constantly question their own illness, their own bodies, and their own day-to-day experiences. As do I.
Migraineurs are often frustrated by unkind, unthinking comments from the outside world. People who have never had a migraine seem to think they know better than those who live and breath migraine. We’re told that migraine is “only a headache” and “all in our heads.” We’re told that all we have to do is eat less [blank], drink more [blank], do [blank] exercise routine, “calm down,” or abide by some other current pop culture craze and our migraines will disappear.
The voice of the internal critic that I and many other chronic migraineurs possess appears to have developed out of these and other similarly ignorant beliefs about migraine that abound in our culture. We can easily scoff when someone tells us to stick cabbage to our foreheads (yes, this was a “cure” floating around on Facebook recently), but it isn’t so easy to brush of the implied meaning behind these messages. Instead, these insidious beliefs work their way into our self-perceptions until we, too, think that we’d get better if we only tried harder, that we’re somehow to blame for our illness.
It doesn’t matter that migraineurs constantly work our butts off at maintaining a schedule, minimizing stress, eating right, finding triggers, trying treatments, etc. We work tirelessly at improving our health — much harder than most people ever have to and more than they can possibly imagine. As if we weren’t already exhausted enough by the physical experience of migraine, we focus our limited remaining resources on trying to avoid future attacks. Despite all our efforts, we still think that we need to work harder, do more.
I’ve never cared much what other people think, so you might assume it wouldn’t matter to me that society treats illness as a sign of weakness and personal failure. The problem is that I internalized these beliefs long before I even knew they existed, let alone how harmful they are. I am not struggling against an outside force, but against myself. That’s the most painful part of all.
By Kerrie Smyres | June 30, 2013
This letter to people without chronic pain has been floating around online for more than a decade; I’ve even shared it before. It is no less powerful, honest, and important than it was the first time I read it. I’m publishing it again, this time in honor of Migraine and Headache Awareness Month. Raising awareness is also about raising compassion, which this letter does beautifully. I only wish there were a way to thank its anonymous author.
Letter to people without chronic pain:
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.
That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying “You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.
Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?
I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.
By Kerrie Smyres | June 28, 2013
What would happen if, as soon as I noticed a migraine coming on, I took meds and rested instead of pushing until I absolutely can’t do another thing and I’m beyond exhausted before sitting or lying down? “I’d never get anything done,” is my immediate response, and I’m guessing most chronic migraineurs would think the same thing. But what if the behavior I see as helping me cope with chronic migraine — pushing myself — is actually making my health worse?
What if resting at the first warning of a migraine would reduce the severity of that migraine attack? What if pushing myself to the brink actually makes the migraine attack worse? And beyond individual migraine attacks, what if my habit of constantly pushing myself to severe fatigue compromises my body and health in such a way that makes me have more frequent migraine attacks?
These are some of the thoughts floating in my head thanks to therapy and the article about validating pain that I wrote about last week. I have no answers, but asking these hard questions feels like a step in the right direction.
By Kerrie Smyres | June 24, 2013
You know what Cefaly is, now here’s an overview of using the device, what it feels like, and my early experience with it.
Cefaly has three programs: abortive (programme 1), preventive (programme 2), and relaxation (programme 3). Each program slowly increases in intensity for the first 12 minutes, the levels off and remains at that strength for the remainder of the 20-minute session. You can push the button at any point to stop the intensity from increasing any further. However, according to the manual, “The effectiveness of the treatment depends on the power used. It is consequently advisable to work with the maximum power possible.”
With this in mind, and because I had a migraine coming on, I started with the abortive program (programme 1). Both the lead researcher and the manual say the sensation isn’t painful, so I was surprised by just how intense it is. I agree that pain isn’t the best description (especially for someone used to migraine pain), but the sensation is far from comfortable. Initially, it feels like a mild buzzing vibration with a sharpness to it that’s not quite pins-and-needles. As the program intensifies, so does the vibration and a feeling of pressure develops, like someone is pushing hard against my head with the heel of their hand. Then a sort of clenching sensation begins, almost as if the muscles were tightening. Again, none of these sensations are exactly painful (unless I already have allodynia), but I am always greatly relieved when the program is over. Anyone with significant allodynia will probably find this device unbearable to use.
The first time I used the Cefaly, I had to stop before reaching maximum intensity. It was just too uncomfortable to continue. When the 20 minutes were up, the migraine felt unchanged. I started it up again (one touch of the button in the wind-down period returns the stimulation back to the maximum strength for the session and it remains there for the next 20 minutes), as the manual says,
“The standard 20-minute session is generally too short, except for mild headaches. Usually it is necessary to carry out programme 1 several times, and for at least 40 minutes. Generally, 2 to 6 sessions of 20 minutes each are needed, depending on each individual. This is not always the maximum either, since Cefaly can be used all day long if needed.”
An hour at not quite full strength eased the migraine from a level 5 to a 3. Not only was I able to go to dinner with friends, I was chatty and felt good. The migraine came back three hours later, which has since proven to be a pattern. Multiple times since then, using the device at almost full strength continuously for an hour has reduced the pain by two levels and I’ve been able to function for a while, though the pain is always back after two or three hours.
What’s most interesting about this is that not only is the pain decreased, but so is my primary prodrome symptom of tooth sensitivity. For the last nine months or so, sensitive teeth on the upper left side of my mouth are a reliable indicator that I have a migraine coming on. Even before I notice increased pain or other symptoms, I feel the sensitivity in my teeth, often testing them with a drink of water. Before I use the Cefaly, my teeth are sensitive; afterward they are not. This makes me think that the migraine process is actually being interrupted, though I don’t know if the science backs me up.
Since the manual says the device is most effective if used at full strength, I kept trying to get there. If the migraine is bad enough and thus my allodynia high, the sensation is unbearable. When I have gotten it up to full strength, the muscles in my eyelids twitch, I feel spasms in the muscles around my eyes, and I cannot keep my eyes open. As I am a master at not listening to my body, I ignored these sensations by distracting myself with a podcast while the Cefaly was on. I was rewarded with a broken blood vessel in my eye.
Thanks to a phobia for all things eye-related, this was a message I could not ignore. I backed off after that, setting the Cefaly even lower than I did for the first few sessions. And it stopped being as effective. It simmered a migraine down one level on the pain scale, reduced my tooth sensitivity without eliminating it, and gave me an hour of productive time before the pain came back.
My final assessment won’t come for at least a few months, by which time I should know if it is preventing any migraine attacks. In the 10 days I’ve used it, I believe it has already given me multiple hours in which I could run errands, write, make it to appointments, or do chores when I otherwise would have been relegated to the couch. That’s worth $230 and $10 per electrode for this chronic migraineur.
By Kerrie Smyres | June 23, 2013
“[T]echniques based on the Buddhist teaching of mindfulness have reliably been the most effective, helpful coping strategies I’ve used in my 25 years with chronic migraine. While plenty of people approach Buddhism as a religion, I think of it more as psychology; a collection of wise insights to help people live their fullest lives.”
Migraine & Mindfulness — “Bruce Almighty,” my favorite of the posts I’ve written for Migraine and Headache Awareness Month is now up on Migraine.com. No matter what your religious or spiritual bent is, mindfulness is an amazing tool, not only for coping with migraine, but with all of life’s stresses. To make this wonderful technique accessible to everyone, I focus on a secular approach to mindfulness in the beginning of the post, then include links to other incredible leaders who are more religious in their teachings.
By Kerrie Smyres | June 21, 2013
“Writing is easy. You just open a vein and bleed.” I think of this advice so often that I’ve thought of having it tattooed inside my wrist in the abbreviated form of “open, bleed” with an arrow to a vein. The advice came to mind most recently while I was writing about sex and migraine for Migraine & Headache Awareness Month for Migraine.com. In this case, though, I felt less like I was bleeding and more like I’d hung my dirty laundry in the front yard and shined a spotlight on it.
Chronic migraine complicates a person’s sex life, to say the least. Not enough people are willing to write about it openly and honestly, but it needs to be addressed, so I agreed to try. I wrote a draft and put it away, thinking I could go back and take my relationship out of it, make myself feel a little less vulnerable. Revisiting the draft a couple weeks later, I saw that I really couldn’t remove myself and still capture the heart of the message. So I sent it to Hart and asked if he was OK with all that I revealed. I held my breath, simultaneously hoping he’d give me the go ahead and that he would say “no way.”
All this agonizing reminds me of a post I wrote about my homesickness for Seattle when I lived in Boston. I posted it, cringing as I hit “publish.” Even a year later, I couldn’t read it without feeling overly exposed. I saw it earlier this week and thought, “Oh, that’s no big deal.” What felt at the time like baring my soul turned out to be nothing more than truthful, sincere writing. This, I believe, is a sign that I’ve grown as a writer, that I’m willing to dig deeper in the service of my craft.
Opening a vein and bleeding onto the page can be gut-wrenching and cringe-inducing. It also produces the most profound insights and touches readers in a way that holding back never can. Not to imply I do this all for you. I, too, benefit from writing and publishing thoughts outside my comfort zone. But it still makes me squirm. (So much so that I can only link to the aforementioned post about sex and migraine by writing about how awkward it was to write!)
By Kerrie Smyres | June 20, 2013
Cefaly, an electrical nerve stimulation device that is worn like a headband across the forehead and stimulates the nerves through the skin, is my latest experiment in preventing and aborting migraines. There’s a ton of information to share, so I’m breaking it up into several posts, starting with the basics. If you can’t wait to read about the study, here’s Medscape’s writeup: Neurostimulation Effective in Migraine Prevention. (You can get a login from Bugmenot.)
First off, what the heck is Cefaly? It is basically a TENS unit with an electrode shaped to cover the peripheral branches of the trigeminal nerves in the forehead. Instead of being able to adjust the settings freely as you do on a TENS unit, Cefaly is pre-programmed with three therapeutic settings, one for aborting migraine attacks, one for preventing them, and one for relaxation.
According to Cefaly’s website,
Cefaly treats migraine pain with neurostimulation. A stimulus that limits pain signals from the nerve centre by working on the trigeminal nerve where migraine headaches start. The patented Cefaly treatment changes the trigger threshold of migraine headaches. As the pain threshold becomes harder to reach, migraine headaches are less frequent, less painful, and simply disappear. Cefaly offers patients suffering from migraine pain and headaches an efficient electrotherapeutical system delivered via an extremely comfortable, ergonomic and simple-to-use medical device.
An easy-to-follow marketing video:
Harder to follow without knowledge of scientific terms, this video provides a high-level explanation of the science behind the device:
While the marketing materials focus on migraine (and that’s what my experience represents), the manual recommends its use for tension-type headache, cluster headache, and trigeminal neuralgia. It also claims to reduce stress, promote relaxation, and ease the symptoms of sinusitis, though it does not treat the underlying sinus infection.
Cefaly has not been approved for sale in the US and is is not available here. It is available in Canada, Australia, and Europe. I ordered mine from Costco Canada for $230 USD and had it shipped to a friend in Canada who sent it on to me, though I’m not sure this is strictly legal. My headache specialist said his US patients have ordered it directly from Roxon.ca for $299 USD and Oximetry.ca for $340 USD. Although not inexpensive, $230 is reasonable considering the cost of various preventive and abortive meds.
Replacement electrodes come out to $10 each when shipping is factored in. The life of electrodes is listed at 10 uses in the manual, though reviewers on Costco.ca list various strategies for extending their usefulness. I wash my hands and forehead well before applying the electrode and store it in a Ziploc bag with a cotton ball soaked in alcohol next to it. At 11 uses, my original electrode still seems to be working fine. Even if it costs $1 in electrodes each time I use it, that’s still a savings over what I pay for triptans.
There’s enough hype about Cefaly on the internet that I wouldn’t have even tried it had by headache specialist not recommended it. It just seems too good to be true. At the time I saw my headache specialist in May, he had suggested it to 20 of his patients with intractable chronic migraine and half reported at least some relief from it. One had just written him a letter saying the results were close to miraculous for her. Because I trust my headache specialist immensely, I went for it.
Writing this post, I discovered that headache specialist Alexander Mauskop questions whether Cefaly provides advantages over readily available $50 TENS units. While I could have done with saving some money, I derive comfort from the pre-set programs and am not sure if I could have found the right therapeutic settings on my own. If you already have a TENS unit, it might be worth trying it out on your forehead!
I’m still sorting out the kinks and it is too early to establish any preventive effect, but the device has definitely aborted migraine attacks for me. In Monday’s post, I’ll detail my first week with it.
By Kerrie Smyres | June 19, 2013
“Short and simple, Validating Your Pain is the First Step to Getting Stronger by Danielle LaPorte is astonishingly powerful in its approach to pain,” I wrote yesterday. My first instinct was to tell you it is an absolutely must-read article for anyone with chronic illness. I even wrote, “Read it now. Right now. Really.” Then I let the ideas simmer for a while and began to question how they could realistically apply given the constraints of chronic illness and pain.
Head on over and read the post. It’ll only take a couple minutes and the ideas are intriguing. Then come back to read what I’m thinking about it and share your impressions.
I love, love, love the thought that people with chronic migraine, including me, might stop denying the reality and severity of this illness to everyone around them, even themselves. Pushing through despite our debilitating symptoms, pretending we feel better than we do, brushing off others’ concerns. . . These strategies seem like the only way to survive, to have some semblance of a life while also having chronic migraine. But they also lock us in a battle against ourselves, where we’re constantly denying how we truly feel physically and emotionally.
“Validating your pain is the first step to sanity, strength, and healing,” LaPorte writes. My therapist has expressed a similar message. I’m listening. And I really want to buy into what they’re saying. Yet, I cannot help but wonder how to follow their lead and still get anything done. Three of LaPorte’s points tied my mind in contradicting thoughts of “That would be amazing” and “How is that possible?” They are:
Endurance can be a very unwise choice. As inevitable as emotional and physical suffering is, it doesn’t always serve to make us stronger — sometimes it just wears you right down. Sometimes, the test of strength is to say “This isn’t working,” the millisecond it’s not working.
Believe your pain. It’s not a friend you want to invite over, but when it does show up, it always — always — brings you precious information about what’s best for you.
Dare to be high maintenance. I bet you’re invincible in many areas of your life. But when you need it, ask for special treatment.
It is a good time to note that LaPorte does not have chronic pain, but extreme sensitivity to dental work. She’s talking about validating her pain a couple times a year. Applying her ideas to the daily life of chronic illness is so seductive. Imagine recognizing (and stopping) every time you’re wearing yourself down by trying to push through, listening to your body’s signals and resting accordingly, asking for special treatment. Sounds blissful. And utterly inconceivable, a life-sentence of confining yourself to bed.
Still, I want to believe that these concepts can apply to some degree and improve life with chronic migraine. I want to validate my pain and listen to my body, ask for help when I need it. For LaPorte, honoring her body and her needs leads to an effective treatment for her pain. Many chronic migraineurs don’t have the luxury of surefire way to manage their pain, nausea, dizziness, vomiting, photophobia, and numerous other migraine symptoms. Admitting our pain doesn’t get us a numbing agent, it just takes us away from living our lives.