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The Physical & Mental Roller Coaster of Chronic Migraine

Sometimes you don’t hear from me for awhile because I’m in a horrible spell of migraine attacks. Other times it is because the migraines have let up enough that I’m racing around, trying to accomplish everything that falls to the wayside when the migraines overtake me. I continue to expect the migraines — and thus my life — will even out. Silly me.

The last week of April I had a cold, a mouth full of cold sores, and storm-triggered migraines. A down week. Last week I felt great even though I discovered I had an indomethacin-induced ulcer. The migraines were mild and I had a ton of energy. I went to the dentist, the doctor, yoga and physical therapy, had coffee with an old friend, got a magnesium infusion, cleaned the house, hosted a Cinco de Mayo party, was swamped with TheraSpecs work, and more I won’t bore you with. I was exhausted by the end of each day, but woke up the next morning ready to go. Clearly an up week taking loops at high speeds. This week I’m struggling to keep my head up through severe migraines. And the roller coaster plunges back down.

Maybe I’m now paying for overexerting last week. Or maybe this is a new week with unrelated migraine triggers. The amount of time I spend second-guessing my health-related decisions is dramatically less than it was, say, a year ago. Still it feels like far too much time and energy. Balance continues to elude me. Not just in deciding how much to do and when to rest, but also in how I think about migraine and my role (if any) in exacerbating the illness.

In theory I know migraine is a disease and I am not at fault for having it. In practice, though, when “stress” is a commonly cited trigger for an illness, the patient is inherently blamed for worsening their own health. So I always wonder what I did wrong and what I can change next time.

I’m stuck on a ride I can’t get off of even though I didn’t want to be on it in the first place. I never did like roller coasters, but am willing to make the most of the ride since I’m already here. If only I could figure when to throw my arms in the air and scream with joy and when to hunker down and hold on tight.

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Adjusting to Life WITHOUT Constant Migraine

I always imagined that if I found relief for my migraines, I’d be over the moon and ready to take on the world. Instead, I am cautious and disoriented. It is difficult to believe the magnesium will keep working — or even that my current good spell is the magnesium at all. I wake up each day having no idea if I will have a migraine or a headache and, if I do, what level of pain I will be in. Migraine has been entirely dependable and I’m a bit lost now that I can’t count on it to always be present.

When I awoke around 5 a.m. yesterday to a level 5 migraine, I felt not exactly relieved, but sort of comfortable. Like, after a week of the uncertainty of different head pain and unusually low migraine levels, I was in a familiar place again. Not that I was happy to be there, just that there’s comfort in a well-known situation.

But even that comfort wore off as I realized I didn’t know what to expect from the migraine. Will it worsen? What symptoms will I experience? Will pain be a major factor? These are not questions I typically ask, but I have felt so much better the last few days that I was acutely aware of every aspect of the migraine and concerned what it might mean. The most worrisome question plaguing me was: Am I back to the place where migraine is my default state?

Before I began the mindfulness for health course I took four years ago, I met with the instructor privately for biofeedback. She mentioned that she had just gotten good news on medical test results, but didn’t want to get swept up in thoughts about the results. She said she “didn’t want to be tied to that outcome.” I was puzzled by this and didn’t really understand what she meant. As I have become more familiar with the practice of mindfulness, I have revisited that conversation, never more so than the last week as I attempt to grasp magnesium’s effect on my migraines. The idea is that the teacher could celebrate that she’d gotten good news, but didn’t want to assume that the news would always be good in the future or that her happiness was dependent upon the news always being good.

Not being attached to the outcome relates to the Buddhist idea of impermanence — a concept that I was heavily invested in just last month when the migraines and depression were wearing on me. I kept telling myself that although it felt like the misery would never end, it would eventually lessen. I reminded myself that my migraines had been better as recently as November and that they would lessen again. Now I’m working with the flip side of impermanence. Just because magnesium is helping me now, it may not always help. The fact that my migraines have lessened significantly in the last nine days does not mean I am out of the woods forever.

A friend asked if I was floating around the house in bliss when my pain was at a level 2. Well, I was cooking and dancing and marveling at how little pain I was in, but I was doing so with great care. I don’t trust that I’m going to continue feeling this good. I’m still afraid I’m going to discover that this good spell is an unrelated fluke and the magnesium isn’t really helping at all.

Please don’t think I’m ungrateful or that I’m not thoroughly enjoying this respite. I am uncertain is all. I’ve learned to live with severely debilitating migraine. The possibility that it might no longer limit me so much is overwhelming and seems a but suspicious. I don’t want to get too excited for fear of being let down. Though I dread being wishy-washy, the phrase “cautiously optimistic” captures my attitude exactly.

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The Day-to-Day Life of a Chronic Migraineur

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 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.

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Mediation & Self-Compassion: Suffering is Optional

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:

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?

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Treating Pain With Meditation

I’ve dabbled in mindfulness meditation as a pain reduction strategy for a few years. A study released in April, which showed significant reduction in pain intensity and “unpleasantness” with meditation, spurred me to undertake a regular practice.

“This is the first study to show that only a little over an hour of meditation training can dramatically reduce both the experience of pain and pain-related brain activation,” said Fadel Zeidan, Ph.D., lead author of the study and post-doctoral research fellow at Wake Forest Baptist Medical Center.

“We found a big effect about a 40 percent reduction in pain intensity and a 57 percent reduction in pain unpleasantness. Meditation produced a greater reduction in pain than even morphine or other pain-relieving drugs, which typically reduce pain ratings by about 25 percent.” [emphasis mine]

I checked meditation CDs out of the library and found podcasts of guided meditations as well as talks given at meditation centers. I listen to an hour or two of talks each day and try to spend at least 30 minutes in active meditation. I’d say I the most relief I’ve experienced is about a 1 percent reduction in pain intensity and unpleasantness.

In the study, the pain was induced by a device heating a portion of the participants’ skin to 120 degrees. I have to wonder if the results only apply to acute, not chronic, pain.

I wish my results were better. Not just for the obvious reasons, but also to provide general support to the practice of meditation. Though it doesn’t directly improve my pain, I do feel calmer overall. I enjoy the practice and will continue with it.

Have you had success controlling pain through meditation, mindfulness, or otherwise?

Recommended guided meditation CDs: