Good News & Bad News in Last Couple Weeks
By Kerrie | March 2, 2010
Bad news: The migraines have reached a level 8 or 9 nearly every day. Being on the computer has been a huge trigger.
Good news: Although the pain levels have been high every day, I was only laid flat one day. I’ve gotten out by myself several weekdays each week, seeing a therapist and a physical therapist, going to the grocery store and even doing some retail therapy (Buffalo Exchange opened nearby in October!).
Hart and I have gone out at least one day each of the last three weekends, visiting the aquarium, the natural history museum and the science museum. We’ve gotten coffee, crepes and hamburgers. Maxalt, a triptan, has been working for me lately, and I’ve taken it for nearly all these excursions. Even then, I usually wind up taking Midrin, naproxen and sometimes Zofran. (I’m careful to not overuse any of them.) The benefits to my spirits are worth taking meds.
Exercise is becoming a more regular part of my days. I try to walk a couple miles a day, whether on the treadmill or while out and about. Today I jogged on the treadmill for a minute! A yoga therapist has come over for a few private sessions. I’ve learned an excellent restorative pose and a modified sun salutation practice. Moving my body is blissful and my body feels better when I move it.
In my outings, I’ve spent some time in Davis Square, a neighborhood that feels homey. (It’s where Buffalo Exchange is.) Getting excited about a place here is reducing the homesickness a bit, though knowing that Seattle has been in bloom for a month is troublesome.
Tomorrow I head to Phoenix for a week. My sister and I are meeting to help our mom prepare the house to sell in the fall. I’m eager to bask in 70 degree weather while wearing summer clothes. Going through storage sheds and closets should be fun, too - an archaeological dig of sorts.
So the news is mostly good. I still have awful hours every day, but I feel more like I’m living life than I have in years.
Topics: Coping | No Comments »
Migraine’s Life Lessons: Backup Plans, Optimism & Flexibility
By Kerrie | February 18, 2010
Hart and I planned to go to the Harvard Museum of Natural History last weekend, but a migraine kept me from going out. Instead of sitting on the couch or going back to bed, Hart and I worked in the kitchen then watched a movie and the Olympics. We made salsa, hot sauce and cornbread. It wasn’t what we planned to do and I operated at less than full capacity. But it was a lot of fun and we got to spend time together. In the end, I wasn’t even disappointed we didn’t go to the museum. I still had a great day.
People often ask how I can have such a positive attitude about life with migraine. I always thought it was a joke when I answered “I’d be dead otherwise.” I wasn’t kidding. I can’t imagine how I could have gotten this far being this sick without my optimism. I think it is the lack of disappointment that keeps me going. I can be happy whatever I’m doing (if I’m in the right mindset).
In my “I can’t” phase, I lost the crucial ability to make backup plans. I assumed that if I couldn’t make my original plans, then I couldn’t do anything. Admittedly, this was often because I was so sick that I couldn’t do more than lie in bed or sit on the couch. Yet the art of making plans B, C or sometimes D contributes to the optimism and flexibility that allow me to enjoy life despite migraine and depression. I make lemonade through the optimism that I can still have fun and still do something even if it wasn’t what I intended. I need enough flexibility to come up with alternatives when necessary.
I’m not say it is easy or even always possible to have a positive outlook. I’m fortunate in that I was born a Pollyanna, but I also work hard at it. I try to look for the good (or not too bad) in all that I do. Sometimes it is as little as having the energy to put dishes away or enjoying an episode of Ugly Betty. This helps me stay in the moment and feel like I am truly living my life, not letting it go by in a migraine haze.
I often hear people say chronic illness has taught them to enjoy life. I’ve certainly come to that conclusion. What has life with headache or migraine taught you? How do you get through the days?
Topics: Coping | 12 Comments »
Managing Migraine With Music & Dance
By Kerrie | February 11, 2010
“I want music to be like food. A water or wine.” Chinese opera singer Shenyang (whose voice is amazing) describes music as a necessity. It certainly has been in my tangles with migraine. I honestly don’t know how I could have coped, particularly in the last eight years, without the joy music brings. (And I’m not alone in this.)
I’ve found that listening to music I love is more important than choosing a genre typically thought of as relaxing. My all-time comfort album is the first disc of Dave Matthews & Tim Reynolds playing a live acoustic show. That’s when the migraines are really bad. Most of the time I listen to hippie jam bands and afrobeat/funk/soul − anything that gets my head bobbing or hips swaying.
This may sound crazy considering that a primary characteristic of migraine is that movement worsens pain. Sometimes “dancing” is almost imperceptible foot tapping, other times even that is impossible. When I dance, especially at live shows, I let go of myself and my self-consciousness completely. That release is therapeutic even in memory. When I dance at home, in the car or in my mind during a migraine, my body remembers that freedom and loosens up.
Dancing with Pain blogger Loolwa Khazzoom believes so strongly in the power of dance as a chronic pain therapy that she teaches classes in it. What about you? Have you found dancing or listening to music to be effective in managing migraine?
I was going to include a photo of me dancing at a Phish show last summer. I share so much on this blog, but the picture of me lost in music is just too intimate.
Topics: Coping | 3 Comments »
Getting Out & About (and Lessening Migraine’s Hold on Me)
By Kerrie | February 8, 2010
Nudging my limits instead of automatically assuming I can’t do something has already lessened migraine’s hold on me. Not only am I getting to the gym a few times a week and picking up the Kindle when I think I can read, I’ve recognized that I’m never trapped in a situation or place if a migraine strikes. It may be unpleasant to leave a restaurant mid-meal or to get a taxi when I planned to take the subway home (neither of which I’ve had to do), but I always have options.
In the last 10 days, knowing this has given me so much freedom. I’ve gone to a few restaurants, a craft fair and an opening at an art museum. Hart and I met his college lab partner, her husband and their daughter for brunch. I visited a neighborhood I’m interested in living and spent a few minutes at a park with a pond (that’s where Hart took the photo). I was usually loaded with Maxalt, Midrin and/or naproxen, but I enjoyed myself and didn’t ruin anyone else’s time.
I’m still entirely dependent on other people to get out, though. Someone is always with me when I go out. Friends and family have been staying with us most of the time since Thanksgiving. When they aren’t, Hart is by my side. He drives me to appointments, even though he has to leave work at inconvenient times to do so. He also happily explores the city with me, often knowing we won’t get out of the car. I’m so fortunate to have such an amazing husband.
Yet Miss Independent has been down too long. It is time to start exploring the world (or at least going to the grocery store) alone. That’s the next step to getting the real Kerrie back. I plan to take myself to an appointment on Wednesday. It isn’t too far away and parking is easy. I know how to get there. The doctor runs on time and the appointment will only last 20 minutes. I think know I can do this.
Do you have any suggestions for making steps toward independence after illness has kept you down?
Topics: Coping | 3 Comments »
Trying to Find My New “Home”
By Kerrie | January 28, 2010
Home is where I want to be when I have a migraine. Being nearly housebound since I moved to Boston in August, you’d think I’d be all set. Except that “home” is far more metaphorical than literal. In Seattle, my home was on the couch in front of the fire. Even if my apartment here had a fireplace, it wouldn’t be the same. Home is an emotional place, an emotional state. One that is found by feeling it. One I haven’t found since moving to Boston, not in my apartment or in the city.
Driving from the airport into Seattle the first time Hart and I visited, I knew I’d found my home. In fact, when I was 13 and first visited the Pacific Northwest, it felt like home even though I wasn’t aware of what that meant. Now I’m 3,000 miles away and I feel the distance acutely. I know Boston is a great city and there’s a ton to see and do in the Northeast. Enough friends of friends are here that I’m confident we can build a great social circle. The move isn’t intended to be permanent. All this logic doesn’t erase the ache for Seattle and the forests of the northwest.
Hart and I went back at Thanksgiving. The first morning, we went mushroom hunting. My heart sang as we drove through the city, seeing the water and evergreens. The ferns, the moss and the drizzle in the forest felt so good that I turned my face to the sky to soak it in. Then a severe migraine hit on the drive back to our friends’ place. The subsequent migraines were so bad that, except for a massage appointment, I didn’t leave their house until we went to the airport, 10 days after our intended departure. I have to wonder if not wanting to leave my beloved city was the primary migraine trigger.
Over the last month, the migraines have improved steadily. I even went to Hart’s work’s holiday party Tuesday night and had a great, low-pain time. I also met a lot of new people, all of whom were curious about Seattle. Talking about my city was soothing yet heartrending. The next day, I stumbled upon The Place I Love: Songs About Longing, written by someone from Portland who recently moved to New York. Listening to the songs she shared was another bittersweet comfort.
Seattle’s lakes and trees and cranes and Space Needle fill my soul. Even when I didn’t leave the house, the glimpses out the windows cheered me. I didn’t realize how much the city carried me as I struggled with an ever-worsening chronic illness. Moving to Boston was the right choice for Hart and me and I want to make it home while we’re here. But how do I find my place in a city that doesn’t nurture me?
Topics: Coping | 9 Comments »
Finding My Life After Years of Saying “I Can’t”
By Kerrie | January 27, 2010
Telling me not to do something is a surefire way to get me to do it. My mom swears reverse psychology was the only way to keep me in check. So it seems laughable that my motto for the last two years was “I can’t.” There’s no laughter here, just sadness at the realization I’ve held myself down. In trying to not overextend myself and avoid migraine triggers, I have lost myself and my spunk.
I stopped reading in January 2008 when I noticed that it triggered migraines. I also unwittingly handed migraine control of my life. I could only think of it in terms of “I can’t read” and “I can’t work on the computer.” That was just the start. The list of what I couldn’t do grew quickly. I couldn’t go places with bad lighting or loud noises, do any exercise that raised my heart rate (including yoga), go to movies, play Rock Band…. Eventually coming to rarely being able to leave the house.
All along, I thought these were choices migraine made for me, not ones I made for myself. To a large degree they were. These (and many other) activities did trigger migraines. Ceasing all of them, however, didn’t make the migraines go away. I’d eliminate one trigger, then another would pop up. The migraines have only gotten worse.
Now I wonder if giving my power over to migraine worsened the illness. By abandoning activities I love, I crippled essential elements of my identity — an identity already ravaged by migraine and depression. Restricting myself so I don’t overdo it or not engaging in activities I love hasn’t made me feel better. It has curtailed my personality and fed my sadness.
Pushing boundaries is what I do. Actually, charging right through boundaries is what I usually do. When that didn’t help the migraines, I held myself back, playing it safe to a fault. Now I’m practicing nudging the limits, with good results.
- Using the largest font on Hart’s Kindle
, reading no longer triggers a migraine every time. If I want to read, I try it out for 10 minutes. If I feel worse than when I began, it is time to put the book down. (Though I am annoyed that I have to buy books instead of getting them at the library.)
- The migraines aren’t always worse when I walk. Sitting on my couch or lying in bed aren’t my only options. I can stand in the kitchen. It may take an hour to load the dishwasher, but I’d otherwise spend that hour on my butt or back.
- Showering often makes the migraines worse, but, again, not always. Two days last week it did. I had appointments both days so I meditated/napped for 45 minutes to regain my strength. I was able to enjoy the next four hours of both days.
- Raising my blood pressure through exercise always triggers a migraine. Or so I thought. I’ve walked on the treadmill maybe 15 days this month and it has only triggered three migraines. Many days I only last 10 minutes, but yesterday it was 37. Quick I am not, sometimes I’m not even walking two miles an hour. But moving my body feels so good.
I got so scared of the migraines that I stopped doing things that bring me joy. I’m finally seeing the place between too much and not enough. Slowly, gently. I’m coming back to life.
Topics: Coping | 5 Comments »
Asking for Help & Beginning to Heal
By Kerrie | January 13, 2010
Since stubbornness is one of my most prominent traits, I long thought sheer tenacity could snuff out the migraines. If not through willing them away (a useless endeavor), then by relentless pursuit of treatment. Instead, I have spent the last two years feeling like the migraines and accompanying depression had conquered me. Being obstinate wasn’t enough. Only by asking for help has my despair transformed to hope.
“I can do it myself” is probably my most oft-uttered sentence. When it comes to my health, I can’t. Sequestering myself only made it worse. The isolation wasn’t intentional. It started a decade ago with me thinking that talking about my ailment would automatically make me a complainer. It ended in November with me reaching out to my friends, screaming and crying and holding their hands as I fought through the worst migraines I’ve ever had.
Letting people know (and see) how bad the migraines truly are and the havoc they wreak on my entire nervous system lightened my heart. The severity of my depression since Hart and I moved to Boston is more than I wish to revisit. It is far from gone, but I can now see a way out.
People often tell me I’m brave for dealing with illness as well as I do. Asking for help took more courage than anything else I’ve faced. I was convinced I had let everyone in my life down. That canceled plans and unreturned phone calls (and emails and text messages…) made them love me less. Completely untrue.
If you are in a similar place of hopelessness, please, please reach out to the people you love. They love you whether or not you are sick. The rewards of asking for help make the necessary vulnerability worth it.
Topics: Coping, Treatment | 15 Comments »
Kerrie’s Health
By Hart | December 14, 2009
As you can’t help but have noticed, Kerrie has not posted to The Daily Headache in months. Her migraines have been increasing in intensity and duration over the last year, starting in our last months in Seattle this summer and continuing through our time in Boston. Since we’ve moved she’s been largely homebound, only getting out for a few hours a week to take a walk or run a few errands with me. In addition, looking at the computer has become a significant trigger which has made writing posts, responding to comments, or emailing friends almost impossible. Beyond the headaches, which have reached a new severity, she has constant nausea, common bouts of vertigo, muscle pain and stiffness, stomach cramping, and extreme fatigue.
The situation reached a head when we travelled back to Seattle for Thanksgiving. Kerrie has had an unrelenting migraine for more than two weeks which prevented us from going home on three separate tries and sent her to the ER on Friday. We never thought she’d go to the ER for her migraines but the combination of unrelenting level-9 pain and new stomach cramping/convulsions convinced us we needed to do something. They were able to reduce her pain to a 5 and get her a good night’s sleep, but the next morning the pain was back as intensely as ever.
We finally made it home on this past Wednesday by loading her up on painkillers and relaxants and shuttling her through the airports on a wheelchair. We were fortunate to have friends from Seattle willing to travel back with us to help out, and to get a row without a 3rd person in it so that Kerrie could lie down for the whole flight. (Our friends took some pictures along the way… when she’s feeling better she really wants to blog about the ER and flight experiences.)
She’s been suffering for years but I’ve never seen anything like the last few months and especially the last couple of weeks. We are forming a new plan of attack to get her help, and are hopeful for a new headache specialist that we are scheduled to see in January (and hoping to get into sooner.) I’m posting here today to let all of you know what is going on and to ask for your long-distance support. Please add a comment below wishing Kerrie well and I’ll read them to her while she’s working to recover.
Thank you all for your support, and I hope your heads are fairing better.
–Hart (Kerrie’s husband)
Topics: Coping | 34 Comments »
Why, Hello There!
By Kerrie | June 8, 2009
Along with the Seattle sunshine, I’m rejoining the world after a long hibernation. It was another terrible spring for nausea, but my migraines and headaches have been relatively mild. (More on that in a moment.) Whenever I have felt decent, I’ve been getting ready to sell our house and move to Boston.
That’s right, we’re moving to Boston in August! Hart was offered a job he couldn’t refuse. As much as I love Seattle, I’m excited for an adventure. I’m also terrified, but isn’t that a part of every adventure?
I hope better health and more time to write will coincide with the move. Although a change of location is unlikely to spur the change, birth control pills might. My migraines and headaches reduced in frequency and severity after I had taken birth control pills for three months. Unfortunately, they also caused horrendous nausea.
I’ve spent the last few months drugged up and conked out. Deciding I was better equipped to handle head pain than nausea, I stopped the pills last week. Sure enough, the nausea is gone, but head pain and general wooziness are back. I’m seeing a gynecologist tomorrow to determine what to try next. I imagine it will be a brand with different synthetic hormones. I hope I won’t have to wait another three months for them to take effect.
So, that’s what’s been going on in my life. I hope you have been doing as well as possible!
Topics: Coping, Treatment | 22 Comments »
New Migraine Drug Telcagepant on Hold, Perhaps Permanently
By Kerrie | April 24, 2009
Telcagepant, a migraine abortive with much success in clinical trials, is now on hold. It will not be submitted to the FDA for approval this year, as Merck previously announced. Originally studied for intermittent use, patients in an early trial to see if the drug could be used as a daily preventive developed high levels of liver enzymes.
The article doesn’t explain why, but here’s my take: People with frequent migraine episodes often take abortives more frequently than recommended. Even using telcagepant as an abortive, these patients could also develop high levels of liver enzymes.
The bad news for migraineurs is the findings could be significant enough to shelve the drug permanently. Merck, which was banking on the drug, can’t be too happy either.
What are your thoughts on why the drug is on hold?
Topics: News, Treatment | 8 Comments »