The Day-to-Day Life of a Chronic Migraineur
By Kerrie Smyres | January 20, 2012
At Christmas-time, Hart and I made plans to see friends from Montana who were visiting family in a Phoenix suburb. I offered to make the 30-minute drive to where they were staying so their kids could sleep while we talked. They got a babysitter and came to our house instead. I thanked them, saying that since I didn’t have to go anywhere, I was able to take a shower. They laughed, assuming I was joking. These are close friends who know I’m quite ill and their laughter showed me that no one other than Hart really knows the affect migraine has on my day-to-day life.
This has been a typical bad week. The migraines haven’t been horrendously painful, but the conglomeration of symptoms, particularly fatigue and nausea, has really drug me down. (I should interject to say that by “not horrendously painful” I mean that the pain hasn’t exceeded a level 7 on a scale of 1 to 10 — I forget that my perception of pain is skewed.) It was the perfect opportunity to catalog my activities to show what my days are like. I’m now trying to figure out how to share them with you in a way that isn’t tragically boring.
Tuesday
I stayed in bed reading news on my phone for two hours after I awoke. I usually feel worse after I get out of bed, so I like to linger if I feel OK so I can savor it. I used to plan my days while still in bed, but I stopped after noticing that the plans usually collapse because I usually feel so much worse within 15 minutes of getting up.I felt well enough when I got up to shower, which has been unusual the last eight weeks.Showering often depletes my energy and Tuesday was no exception. It took two hours of playing Words With Friends and mucking about on my phone to gather enough strength to go out for a few groceries.
When I got home, I was grumpy, weak and very spacy, all indications of an impending migraine. I took a Maxalt melt and a Zofran and watched an episode of Dr. Who while the drugs went to work. Afterward, I was able to clean up some veggies and roast them for roasted vegetable stock. That was it for my energy, though, and I was in bed by 9 p.m.
Wednesday
I had an 11 a.m. appointment, so I set the alarm for 9:30, knowing how slow mornings can be. It took an hour for me to get up, dress (in the previous day’s clothes) and put in my contacts, during which time I had Hart cancel my appointment because the migraine was too bad. I had to sit down several times while getting dressed, then crawled to the door so I could grip the frame to pull myself up. I walked the 10 steps to the bathroom and sat on the floor to rest before putting in my contacts.I spent most of the day watching Dr. Who, though I got up and walked around after every episode to see if I felt well enough to do something. By 5:30 p.m. I was able to pile the roasted veggies in a pot and fill it with water to make the stock, but I was trembling so violently that I had to lean on the counter to hold myself up. Severe trembling is another sign that I’m in the early stages of a migraine, so I took an Amerge, pushed through what I needed to do in the kitchen and watched another Dr. Who. It halted the migraine pain, but I never did regain enough energy to do anything else.
Also, I was too cognitively impaired all day to be able to play Words With Friends, which has become a source of pleasure and connection for me.
Thursday
I felt good enough that I thought I’d be able to take a shower and not have to wait for a recovery period. Nope, the shower wore me out and another migraine hit. More Dr. Who while I waited for the Maxalt and Zofran to work. They did, though not in time for me to make it to my dental appointment.I napped and by 3 p.m. was in good enough shape to drive myself to Whole Foods. Not only that, I started chicken stock on the stove while I sent some emails that I’d been too sick to deal with, and heated up dinner to eat with Hart. We ate, then I cooked some more and cleaned the kitchen. And, for the last hour, I’ve been writing this post. This qualifies as a good day.
I noticed when I got into bed that my entire head, including the roof of my mouth, was pounding. Four hours and two Midrin later, I was finally able to go to sleep.
I am not a lazy person. Chronic migraine is not an excuse for me to be a couch potato. I am forever asking my body to allow me do more than it wants to do and take advantage of nearly every decent moment I get. Knowing how little I accomplish even though I try so hard is disheartening. Acknowledging how long it takes to get out of bed or the devastation a shower can cause unsettles me.
Simultaneously, I am proud that I make the most of my limited life. The smallest achievements are exciting and I enjoy every task, even cleaning the toilet, because I’m thrilled to be able to do them. I never know how long a good spell will last, so I don’t take any of it for granted. Carpe diem is my motto because it has to be. If I didn’t seize the day, I’d likely wither away.
A friend recently told me that my day-to-day life seems pretty awful. Compared with a normal life — and with the grand, world-changing life I expected to live — it is. But these are the circumstance that I have to work with and I’m growing accustomed to the limitations. I get angry and frustrated at times, but I also revel in the joy of a perfectly crafted chicken broth, indulge in the wonderful fiction of audiobooks and television series, and appreciate when I’m able to write something that helps others with chronic daily headache or migraine. Considering how small my life appears on the outside, I feel like I live pretty large.
Topics: Coping | 10 Comments »
Migraine Musings, Bedhead & Social Media
By Kerrie Smyres | January 16, 2012
Horrible migraine last night. Can’t tell if it has let up temporarily and is going to resurge or if I’m in an ugly postdrome. Not up to writing much, but I’m excited about the posts I’m working through in my mind. A preview: My additions to Ellen’s excellent list of The Migraine Dirty Dozen – Things Not to Say to a Chronic Migraineur on Migraine.com and a summary of Head Agony, Science News’ fantastic article on current understandings of the physiology of migraine, which reader Timothy sent me.
Also wanted to let you know that The Daily Headache is on Facebook and Twitter. As a special “treat” for Facebook friends, I’ve posted a picture of today’s impressive migraine bedhead!
Topics: Coping | 1 Comment »
Migraine Research Foundation Announces Recipients of 2011 Grants
By Kerrie Smyres | January 12, 2012
The Migraine Research Foundation, which raises funds to research the causes and mechanisms of migraine, improve treatments, and find a cure for this little-understood but debilitating illness, has announced the recipients of their 2011 grants. From the MRF:
This year’s grantees will explore ground-breaking inquiries in the areas of chronic migraine treatment, genetic sequencing and basic science. In addition to these research projects, MRF has awarded a grant to award-winning filmmakers Jacki Ochs and Susanna Styron to help fund their feature-length documentary, The Migraine Project.
The four grants were selected from 34 proposals submitted from around the world and represent innovative approaches to unraveling the mysteries of migraine in different ways.
MRF’s 2011 research grantees are:
Andrea Antal, PhD and Walter Paulus, MD
Georg-August University,Göttingen, Germany
Transcranial Alternating Current Stimulation for the Acute Treatment of Migraine
Studying the effects of inhibitory transcranial alternating current stimulation as an effective non-pharmaceutical acute treatment for chronic migraine.F. Michael Cutrer, MD
The Mayo Clinic, Rochester, MN
Whole Exome Sequencing as a Strategy for Gene Discovery in a Large Well Characterized Family with Migraine
Using the newest sequencing technology for gene discovery in migraine.Michael S. Gold, PhD
University of Pittsburgh, Pennsylvania
Calcium Activated Chloride Channels as a Novel Target for the Treatment of Migraine
Determining the molecular identity of the ion channels that underlie pain receptor sensitization and blocking them as a first step in the development of a novel target for migraine treatment.Jacki Ochs and Susanna Styron
Human Arts Association, New York, NY
The Migraine Project
A feature length documentary designed to increase awareness and understanding of migraine for a world-wide audience.
Topics: Biology, News, Treatment | 2 Comments »
No One is Strong Enough to Handle Chronic Illness Alone
By Kerrie Smyres | January 11, 2012
“People cry, not because they’re weak. It’s because they’ve been strong too long.” The National Headache Foundation posted that on Facebook last week, right when I was wondering how much more I could possibly endure. I’d had five weeks of nearly perpetual migraine and I was well beyond the end of my wits.
Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours. My sweet husband held me and told me that even if I was too exhausted to fight, he was not. He told me not to underestimate my own strength. He told me that even if my life is harder than it has any right to be, it is a life worth living. With his kind words and solid grasp, Hart reignited my courage and determination.
My illness has changed Hart’s life nearly as much as it has altered mine. He married an equal, yet now finds himself supporting us financially, running our household and taking care of me. Instead of spending evenings at concerts, movies or with friends, he makes popcorn and we watch Netflix. I try to minimize the impact of my illness on him. I’m honest with him about how I feel, but when I’m in ruts like I was last week, I tend to stop talking about it. Since I isolate myself from everyone else when the migraines are bad, Hart’s my lifeline.
Sunday’s emotional implosion was not only because I’d been strong too long; it was because I did not allow anyone else to ease the burden. I don’t know how I will overcome the desire to isolate myself when I am sick, but I can’t keep trying to manage this life on my own. Though strong-willed is one of my defining characteristics, no one can carry the weight of chronic, debilitating illness alone.
Topics: Coping | 8 Comments »
Extreme Migraine Diet: Eliminating Tyramine & Tannins
By Kerrie Smyres | January 2, 2012
After purposefully not making any resolutions for 2012 (I’ve decided to embrace my flaws instead of constantly trying to fix myself), I find myself on the second day of the new year plotting the most extreme migraine diet I’ve ever done. The diet will be guided, in part, by Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain, a book whose author’s attitude I find offensive. I have long thought food triggers for migraine are overrated and I’ve never had relief with long-term migraine diets, yet I’m cross-checking lists of triggers and wondering if bland will be the flavor of the next four months. Desperation is powerful motivation.
I’m using Heal Your Headache as a basic starting point and also avoiding other foods that are high in tyramine (including those that are listed as OK in moderation) or tannins. Science hasn’t found a clear correlation between particular foods (or particular chemicals in foods) and migraine, so I’m relying on anecdotal evidence I’ve heard and read over the years. That’s right, there’s not much logic to my diet plan, just the stories from people who read this blog and the overwhelmingly positive reviews on Amazon. Have I mentioned that I am desperate?
I’ve included some links to previous posts I’ve written about food triggers, but I had to stop looking at them for fear that I would discourage myself from trying again. Instead, I’m telling myself that maybe this time will be different. Maybe I’ll be more disciplined, maybe I’ll get enough cooking help from family that I’ll have adequate nutrition, maybe climate was a factor in previous attempts and I’ll be more successful in the relatively steady barometric pressure of Phoenix. Maybe, maybe, maybe it will be different this time.
Please, migraine gods, let it be different this time.
Topics: Coping, Treatment | 11 Comments »
Mediation & Self-Compassion: Suffering is Optional
By Kerrie Smyres | December 29, 2011
I keep talking about how my migraines have improved, though my migraine diary for December appears to tell a different story. I had at least a level 7 migraine 17 of the first 18 days of the month. Those can be explained by bad weather, Botox injection aftermath, and more bad weather. Just when the weather stabilized, I came down with some lingering low-level virus that has kicked up the migraines, made me nauseated, and drained all my energy. That appears to have finally lifted, so I hope I’m on the upswing. All this and I still say I feel better. Partly this is relative — it doesn’t take much to improve on the migraine hell I was in — but it is more that I have learned how to limit how much I suffer from migraine.
“Pain is inevitable. Suffering is optional.” Through meditation, the simple truth of this statement has woven itself into my life: Suffering is not in the pain itself, but in how we react to pain. Understanding these words and truly embracing their meaning take much practice. I have only just begun this practice, but the relief it has brought me is tremendous.
Since I began meditating in earnest in April, I’ve learned to just be with my illness instead of constantly thinking about it and evaluating it. I’ve learned to turn off the critical internal dialogue that has always accompanied migraines, the one that tells me I’m faking it for attention and letting other people down. I finally learned that I am worthy of the love and understanding I so readily give others; that self-compassion is, in fact, a necessary foundation for caring for others.
To figure all this out, I set aside my aversion to all things spiritual/religious and listened to guided meditations and Buddhist teachings and read about applying Buddhist concepts to chronic illness. (So far, Buddhism feels more like psychology than religion to me.) I’ve culled resources from all over the internet and from multiple libraries. The most accessible and helpful (for me) include:
- Guided Meditations for Self-Healing
, by Jack Kornfield
- Radical Self-Acceptance
, by Tara Brach
- Meditations for Emotional Healing
, by Tara Brach
- How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
, by Toni Bernhard
I recommend the first three as audiobooks. I have listened to each one multiple times, often during a migraine. They are calming and easy to fall asleep to. I like to think that my mind is mulling over the concepts while I sleep. Those are good general approaches to healing. How to Be Sick is an invaluable resource for learning to minimize the suffering of chronic illness. It includes detailed examples of how to apply different principles to particular difficult situations common to people with chronic illness (like losing friends and feeling isolated or dealing with the disappointment of failed treatments).
Have you found meditation to be helpful in dealing with your own migraines or headaches? What other techniques helped you accept your illness?
Topics: Coping, Treatment | 4 Comments »
Why I’m Doing Better, Part 2
By Kerrie Smyres | December 29, 2011
I’ve changed my promised follow-up to Why I’m Doing Better, Part 1 because the format felt wrong. I have plenty to write about the strategies that have made me feel better, but I want to do so in descriptive individual posts instead of a couple all-about-me lists. I think my new approach has far more value to you than my original plan. Expect posts on exercise, meditation, finding my “third space,” lifestyle changes (like diet and sleep), and special glasses. I’ll let you know when a post is related to my improved health.
I’ve never been more aware that there’s no one solution to chronic migraine. It has taken an assemblage of treatments and tweaks for me to feel better. The tendency is to search for one total treatment, but, much like diabetes, migraine is an illness that has to be managed on many fronts.
Topics: Coping, Treatment | 1 Comment »
Migraine Research Foundation Donations Doubled This Week
By Kerrie Smyres | December 28, 2011
The Migraine Research Foundation raises funds to research the causes and mechanisms of migraine, improve treatments, and find a cure for this little-understood but debilitating illness. Until December 31, 2011, all donations will be matched dollar-for-dollar thanks to a generous anonymous donor. Because all of the foundation’s costs are underwritten, 100% of your donation will go to research. Even a $5 donation, which will be doubled to $10 this week, helps further important research into this complicated neurological illness.
Learn about research the Migraine Research Foundation has funded and donate here.
Topics: News, Treatment | No Comments »
You’re Doing Everything Right
By Kerrie Smyres | December 23, 2011
“You’re doing everything right,” a friend wrote to me two years ago when my migraines were at their very worst. That sentenced has sustained me through many difficult patches. It has been so helpful for me that I want to tell you that you, too, are doing everything right.
The next 10 days afford many opportunities to talk with (hopefully) well-intentioned friends, family or co-workers who will tell you about the person they know whose horrible migraines were cured with a sun lamp/energy cleansing/daily enema. Maybe you’ll be lucky enough to encounter someone who tells you that all you need to do is think positive thoughts and your health will improve. Before you explode, try to take some deep breaths and remind yourself that this person probably means well but doesn’t understand the magnitude of your illness. Then, instead of jumping on the guilt and self-doubt train that awaits folks with chronic illness (“I’m letting people down” or “I need to seek new treatments more aggressively”), remember that you are doing everything right.
That’s really the only truth that matters. Whether or not you live up to someone else’s judgements, real or perceived, is irrelevant. Maybe you cancel plans or show up at the party without the requested potluck dish. So what. As long as you get up every day and try to live your life around your illness, you are doing everything just right.
Topics: Coping | 9 Comments »
The Lure of a “Miracle Cure”: Green Smoothies
By Kerrie Smyres | December 21, 2011
I had migraine for 10 years. Two children, husband and full time job. I had headache twice a week it was horrible. I couldn’t live without medication.Tried all natural things, herbs, acupuncture massages, diet. Doctors not helping in this case only can give you medication so you can use it all your life.
6 moths ago my coworker gave me book GREEN FOR LIFE (Victoria Boutenko). This book changed my life. I drink green smoothies every morning and don’t have headaches anymore. I am free of pain and can enjoy my life again.
I saw this comment on Today I Am Mad and Sad as I was getting ready for bed last night and had to look up the book immediately. Green for Life has 301 reviews on Amazon, most of which are glowing. The book itself sounds pseudoscientific at best, with a lot of unsubstantiated claims and testimonials as proof of over-the-top claims. However, the basic idea is that consuming more leafy greens, in the form of a “green smoothie,” can improve one’s health. Green smoothies are basically smoothies that combine leafy greens with fruit or are made entirely with vegetables, kind of like gazpacho. I’m a pretty skeptical consumer, but it is easy to get behind the idea of using quick, easy-to-make recipes to add more vegetables to my diet.
I was quickly convinced. I stayed up far too late, scouting for recipes on my phone and plotting my trip to the farmers’ market. So far, I’ve made one smoothie, a combination of spinach, frozen strawberries, ginger, and water, and it wasn’t bad. The feeling of virtuosity that accompanied consuming two cups of spinach made up for the unusual flavor.
Angels did not come down and whisk my migraine away, but I’m willing to try this out for a few weeks. I put the book on hold at the library — it doesn’t sound useful enough to actually buy — and have been searching the internet for recipes that don’t have a zillion hard-to-find ingredients. If you’re seduced by this potential “miracle cure” (said totally tongue-in-cheek), check Green Smoothie Community (some simple ones are here), Vitamix, and Got Greens? for recipes.
What “miracle cures” have you been seduced by?
Topics: Coping, Treatment | 6 Comments »