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.

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?

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.

Nudging my limits instead of automatically assuming I can’t do something

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?

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?

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.

“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.

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)

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!

Telcagepant, a migraine abortive with much success in clinical trials

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?

Did you know The Daily Headache is tdhblog on Twitter? So are a bunch of other folks with headache and migraine. Set up a Twitter account and you can follow any of us. All the cool kids are doing it!

This is great news for the many people who have found relief from migraines or headaches with Topamax. Except for the side effects, which many find intolerable, Topamax is often called as a “miracle drug.” I don’t believe in miracle drugs, but one that can help so many people is pretty impressive.

Ortho-McNeil Neurologic’s patents on Topamax began expiring last year.

Related posts:

• Trouble Thinking on Topamax? Study Finds “Language Disturbances”
• Antiepileptic Drugs Linked to Increased Risk of Suicidal Behaviors and Thoughts
• Preventive Drugs Improve Quality of Life for People With Migraine

[via Somebody Heal Me]

The stress, caffeine I drank at the hospital, and messed up sleep schedule has extended Wednesday’s planned migraine into multiple migraine days. The nausea has been unbearable and I’ve been drugged to the hilt. That made yesterday not too bad!

Hart is out of sorts too. He went straight from the airport to the ER after returning from a three-day business trip to Atlanta. Except for constant drilling outside — we have to replace the main water line to our house — things are quiet around here. Baseball season starts Sunday and MLB has free games online this weekend. I imagine we’ll spend a lot of the weekend watching baseball. Sounds perfect to me!

Rereading this post, I’m pleased to see my automatic response is to turn lemons into lemonade. This isn’t the case all the time, but is my default. I don’t know how I would survive migraine life without a positive attitude. I’m so grateful.

After years of constantly overdoing it and constantly being sick, I learned I become terribly ill when I push myself too much. Now I know to hold back; sometimes I think too well. I’m stuck at home with migraines so often. There’s only so much time I can give up because one might come along.

Last year, a friend taught me that I don’t have to shirk anything that might make me sick — even if it is something that I’m absolutely positive will result in at least a day in bed. She showed me I can choose certain times to push myself without doing it every single day. The trick is knowing one day of indulgence can lead to one (or more) days of feeling awful.

When planning yesterday’s trip, I factored in today as a sick day. Other than letting the plumbers in, I made no appointments or plans. I stocked up on easy food and checked out a good audiobook. By intentionally making a trade off, I feel no guilt.

I know I should never feel guilty for being sick, but I rarely do what I should. Today I can see what a reprieve it is to just let myself be as I need to be.

Related posts:

• Balance is Overrated: Choosing Fun Despite Knowing Vengeful Migraine Imminent
• Balance & Illness (and Always Overdoing Pushing Myself Over the Edge)
• A Banner Day
• Walking the Tightrope
• The Spoon Theory of Illness
• Balance? Yeah, Right

The allergist thinks I’m one of about 20% of people who have nonallergic rhinitis. These folks aren’t bothered by typical allergenic inhalants, but by a host of other possibilities, including odors, irritants in the air, weather changes, medications… Mayo Clinic’s definition of rhinitis:

If you do have rhinitis, the lining of your nose swells due to expanding blood vessels. The mucus glands in your nose get stimulated, causing a congested, drippy nose. The symptoms of nonallergic rhinitis are similar to those of hay fever (allergic rhinitis), but there’s no allergic reaction involved.

The treatment is a simple spray of intranasal corticosteroids, like Flonase. Great news, right? Except that a study written up in this month’s issue of the journal Cephalalgia indicates nasal steriod sprays can trigger migraines! I’m going to try it, but nasal irrigation (with a neti pot) might be a better solution. You may have heard of nasal irrigation about a year ago, when Oprah praised its benefits.

Using a neti pot is simple. Basically, you pour a saline solution up one nostril and it comes out the other. I won’t lie — it feels bad and weird at first. It takes patience to put up with the initial unpleasantness. Once you get the hang of it, nasal irrigation actually becomes pleasurable! Here’s how it works:

I’ve never used a neti pot consistently, but am always pleasantly surprised by how my sinuses feel afterward. It’s an easy, inexpensive treatment to try. Neti pots, some of which come with salt packets, are $10-20 on Amazon. Making your own saline solution is simple and much less expensive. The basic recipe is 1/4 teaspoon non-iodized salt to 1 cup warm water. (Distilled or purified water is preferred. To use tap water, bring it to a boil, then let it cool before using it.) You can choose to add extra ingredients. A 1/4 teaspoon baking soda makes the solution more soothing. You can keep your nose from drying out by adding 1/4 teaspoon glycerin.

I’m dedicated to giving nasal irrigation another shot. I’ll do it every day for a week, starting today. If you’re interested, you can track my progress on Twitter. How about you? Does it sound like a good treatment or does it just gross you out?

Check out neti pots on Amazon and help support The Daily Headache!

I’ll still write in-depth posts sometimes, but would rather share them with short comments than not at all.

WebMD’s triptan overview is excellent. Check out specific drug websites for detailed information on each one:

• Axert
• Relpax
• Frova
• Amerge (PDF)
• Maxalt
• Imitrex (available in generic as sumatriptan)
• Zomig

I’m dropping off my Relpax prescription right now!

I’m in my fourth week of birth control pills. I’ve been spotting for the last 10 days, which I assume has contributed to the migraines. I plan to give the experiment a couple more months, but am not sure if I can make it that long.

I’m increasingly certain that allergies trigger at least some of my migraines. You may remember last spring was also horrible for me. Magnesium certainly was a factor. I wonder if allergies were also involved. Taking a Zyrtec yesterday appears to have reduced my agony tremendously. I had to reschedule yesterday’s appointment for allergy tests (for the third time) for later this month. (Please note that although allergies don’t cause migraines, they can be a trigger.)

My outlook is surprisingly good. Especially considering a bad appointment with my headache specialist Monday. The gist of the appointment: I have headaches and migraines that haven’t responded to treatment. With time, headache research will uncover more clues. Until then, why not try some more things in case they help? And I should think about medication to “make life bearable,” like morphine. (That’s a can o’ worms I can’t open right now.)

Back to the good outlook: If I have to live with migraines and headaches, at least I can do it the best way possible. I have a comfortable home; supportive, patient friends and family; and an understanding husband. My insurance covers a variety of treatments. I can stream NPR and audiobooks from the library. I eat good food that I don’t have to make. My life is as good as it can be right now.

I’m sad to not post more on the blog. I want to write about news and research. I want to share resources. I want to write about myself less. I want the blog to be like it was two years ago. Change is inevitable, so I’m trying to not worry about it much. Maybe I’ll get there again, maybe not.

Yesterday I slept while Hart went to lunch with friends. From 3 p.m. on, I sat in my corner on the couch. We had plans with friends for dinner. They came over, we ate pizza. I stayed on the couch.

Today I felt great when I woke up, then I showered and crashed. I slept while Hart went to lunch with friends. After they all left, I moved to the couch. I’ve had several swings of feeling better today. I get up each time, happy to have energy. I keep my activities light, but am always back on the couch within 10 minutes.

I don’t think I’m being lazy, which might be worse than doubting myself. This weekend I’ve seen that nothing I do will guarantee I’ll feel better. I work so hard to feel better. Whenever I feel like I’ve made progress, I’m knocked down again.

I’ll wake up tomorrow morning no longer angry. I’ll still know how easily I can be defeated.

I’d like to end this post with my usual upbeat twist. I can’t do it right now.

Monday morning: As usual, I cried it out with Hart last night and am much happier this morning. I also feel much better physically. Phew!

Then the hormones from the birth control pills I started Sunday morning kicked in and triggered a massive migraine. It eased off today and I’m enjoying the break. My migraines will probably be more frequent as my body adjusts to the hormones. I’m trying to be extra vigilant so I can use abortives as soon into the migraine as possible.

It has been a tough week, but I’m in good spirits. Since this last migraine let up, I’m using my migraine-free moments wisely. I’ve spent four hours organizing the basement, made cookies and cleaned the kitchen. Now I’m working and looking through the picture window at falling snow. I have a pretty good life.

I’m flat on my back in bed, holding my laptop in the air with one hand and typing with the other. Will likely spend the day watching Ugly Betty in a similar position. I plan to give updates through my Twitter account, TDHblog.

First I need to call the doctor to schedule a blood patch.

The generic hasn’t been as effective as the brand name drug for some patients. In Generic Imitrex (Sumatriptan) — Is it as Effective as Brand Name Imitrex, blogger Doc Shazam writes:

…I have taken 2 of “Dr. Reddy’s” generic sumatriptan tablets with almost no relief of headache symptoms, but a plethora of side effects, including aching muscles, nausea, “light headed” feeling and general dis-ease.

Read about other patients’ experiences in their comments on earlier posts on The Daily Headache:

• 11/18/08: Generic Injectable Imitrex (Sumatriptan) Now Available
• 2/4/08: Generic Form of Migraine Abortive Imitrex Available By December 2008

This is particularly frustrating for me because I turned down a well-paid gig for this very reason. It is something I checked for on Wellsphere, but somehow missed. I admit, it was in the fine print, but e-mails with company representatives were murky.

I have requested to have my account with Wellsphere removed and am no longer participating in the health blogger awards. If you are a blogger, please read ChronicBabe’s post on intellectual property rights. You may want to consider cancelling your account as well. In a show of solidarity, registered members without blogs may want to do the same. To do so, email your request to community@wellsphere.com, wellsphere-system@wellsphere.com and dr.rutledge@wellsphere.com. If that doesn’t work, try this method from Kerri at Six Until Me.

[via ChronicBabe]

Update: I realized Wellsphere is the company that created an account for me last year and republished my content without my permission! I had them cancel it in November, then was dumb enough to sign up again this year for the blog awards. Apparently flattery will get you everywhere with me.

I was early enough in the migraine for caffeine to help, so I got a latte next door to the yoga studio and headed to my car. When the music started in the car, I had to turn it off — that almost never happens. I sat in silence, wondering if I could make it to Whole Foods. No, probably not. I went anyway.

I was in a daze, but the pain had lessened. Although it took five minutes to find my misplaced cart (I’m not exaggerating), I made it through the store OK. Cook’s Illustrated and Real Simple magazines were my only impulse purchases. (My impulse control is severely impaired when I’m shopping with a migraine. Does that happen to you?)

Now I’m on the couch. The active part of my day is over, but it isn’t all bad. Reading isn’t make my migraine worse, so I’m grateful for the magazines. I’ll get to listen to my current audiobook, On the Road. I have leftover cherry cobbler. I have a backlog of Ugly Betty episodes. It could be better, but I’m not unhappy.

People with migraine are likely to have mood disorders, like major depression, anxiety and panic attacks

From the current study’s press release (emphasis mine):

Mood Disorders, Migraines Might Be Connected

Migraine headaches can precede the onset of mental disorders, according to a growing body of knowledge that includes a new study in the January-February 2009 issue of General Hospital Psychiatry.

“Together, migraine and mental disorders cause more impairment than alone,” said lead study author Gregory Ratcliffe. “Patients who have one condition should be assessed for the other so they can be treated holistically. Although it is important to know that both are present, treating one will have an effect on the other.”

Ratcliffe is with the department of psychiatry at the University of Manitoba in Canada. He and his colleagues analyzed data on 4,181 participants in the German National Health Interview and Examination Survey. Migraines were diagnosed by a physician and trained interviewers evaluated participants for mental disorders.

Researchers found that 11 percent of participants had migraines. Participants had a variety of disorders: major depression, general anxiety disorder, dysthymia, bipolar disorder, panic attacks, panic disorder, substance abuse disorders, agoraphobia and simple phobia.

The authors considered two theories that might explain the relationship between migraine and mental disorders. The first theory is that a common factor influences both conditions, such as low activity of enzymes that deactivate certain chemical messages sent to the brain. They also considered a causal relationship: This study and others found that anxiety often precedes migraine, which often precedes depression.

Frederick Taylor, M.D., director of the Park Nicollet Headache Clinic in St. Louis Park, Minn., said that migraine co-morbidities — depression, anxiety and other disorders — affect 83 percent of migraineurs and explain 65 percent of their inability to function in life, more than the pain itself.

My bouts of depression show this is true for me. It is also true for other headache bloggers, like Diana from Somebody Heal Me. How about you?