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Migraine Stream of Consciousness

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?

Resources:

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Showing Others What a Migraine Attack is Really Like

Migraine Awareness Month Blogging Challenge #26: “From the Outside Looking In” — Write about what you think your family, friends and others think a day in life, a day with migraine disease is like.

This is the perfect time for me to reflect on what my life with migraine looks like to others. I’ve just returned from a long weekend in Minnesota, where Hart and I traveled for a wedding and to visit dear friends and family—many of his college friends, his sister, our closest friends from Seattle and my best friend from college. I spent much of the weekend in bed, though I made it out most evenings and managed to see everyone except my best friend from college. What was unique about this trip is that I was stuck in bed even though the pain never got above a level 6.

(Background: The longer people have known me, the less I have let them see how disabled I am. Counterintuitive, I know, but it has only been in the last three years that I’ve really let people see how sick I am. And by “people,” I mean everyone, including Hart. Including myself. There are many reasons for this, but two rise to the top of the list. First, I deluded myself into thinking I wasn’t as sick as I am by hiding from myself how debilitating the migraine attacks are. It was as if admitting how sick I was would somehow make it harder to improve my health. That if I couldn’t push through the attacks as I did for so many years, then something was really wrong with me. Also, I was ashamed of being sick and couldn’t shake the feeling that I was faking it. If being sick was a mindset, as I have so often been told, wasn’t my inability to get better a sign of weakness? Besides, how could a headache make me feel faint, weak and dizzy and make my knees buckle?)

I think most people I know understand that I am in terrible pain during most migraine attacks. I have been much more open about that aspect of the migraines in recent years and even began sharing my pain ratings. They also recognize the burden of nausea, because it is a relatable symptom, and photophobia, because I always wear TheraSpecs migraine glasses. [disclosure: I’m the co-owner of TheraSpecs]

I’m not so up-front about the less tangible autonomic symptoms—they are more difficult to describe and, even now, I’m still skeptical of their validity. Thursday night I was at the science museum with friends when my knees began to buckle and I thought, “Come on. Is this migraine really so bad that I can’t even stand up?” Yes. The answer is YES. Even I, a so-called patient advocate and the one experiencing the symptoms, could hardly believe it.

My college friend and I were scheduled to spend Friday together. It took me 30 minutes to gather enough strength to get out of bed. As soon as I did, my knees began buckling. I literally could not stand up. We rescheduled for Saturday. I awoke Saturday completely exhausted and nauseated, so I rescheduled for Sunday. Sunday I was so weak that I couldn’t even get out of bed. So I didn’t get to see my friend at all. The guilt is tremendous, especially because I still feel like I’m making up for being too sick to fly to go to her wedding three years ago. Also because I find it difficult to believe that the non-pain symptoms of migraine can be so bad that they keep me bedridden.

I’ve been struggling with this the last few months, actually. Even though I intellectually know better, I still tend to think of pain as the primary component of migraine. Since the pain has let up some since starting magnesium and, more recently, beginning to take Amerge at bedtime to reduce the severity of my middle-of-the-night migraine attacks, the autonomic symptoms have been more prominent. I assume they’ve always been present to the same degree, but pain overshadowed them. I can hardly grasp the impact of these symptoms myself—there’s no way I can expect my friends and family to understand them.

To answer the question, my friends and family probably think a day in the life with migraine is full of pull-your-hair-out pain, gut-wrenching nausea and recoiling from light. Some days are like that, though I’ve had far fewer of those in the last six months than the previous 10 years. Other days I physically feel like I have the flu and spend the day reading. Since I adore reading and migraine kept me from doing it for four years, those days aren’t too bad. Cancelling plans is particularly frustrating, though, because I think I should feel well enough to go out if I’m not in horrendous pain. (Should. Now that’s a word I’d like to strike from my vocabulary.)

These are just descriptions of my migraine days. There are similarities among migraineurs, but we’re all different. What are your migraine days like? Do your friends, family and coworkers see them as they really are or do you put on your game face?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.

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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:

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Looking Beyond Illness: Adding Up the Smallest Joys

A few smiles a day can make a big difference in how we perceive pain — and our lives. This occurred to me today as I bought Spike Lee water. (That’s sparkling water to anyone outside my household.)

I was taken aback when my then six-year-old niece asked me for her Spike Lee shirt a few years ago. My sister translated: spikelee means sparkly. I was so amused that the phrase became a fixture of my vocabulary. “Give me sharp knife,” said in a serious and clipped tone, is another favorite from when my nephew was three.

I drink sparkling water and use sharp knives every day. And I remember these funny stories. I also think of the kids I love so much and who make me laugh, intentionally or not. These inside jokes aren’t that funny to anyone else, but they mean the world to me.

Remembrances are only part of the picture. Consciously thinking about the happiness in every day may be the best way to revive joy. I know a woman with bipolar disorder and migraine who writes down the good parts of each day before she goes to bed at night. This reminds her regularly how rich her life is despite illness.

As the migraine that’s been coming and going since Thursday threatened to consume me, I struggled to see the positive aspects of today. Let’s see, I was only 10 minutes late to my appointment this morning, biofeedback kept my migraine at bay long enough to go grocery shopping, I made myself laugh by deciding our house really needs a periscope.

So many cliches say to enjoy the little things in life. A good sentiment — one that can seem impossible to put into practice. The items on my list of what’s good today border on minutia. Had I not seriously thought about and recorded them, any happiness would be lost in a day dominated by pain and exhaustion.

Now, as the pain grows more assertive, I’m grateful knowing I did something more than have a migraine today. I was productive and laughed aloud. These nearly forgotten pieces of each day come together, creating a quilt to wrap around myself when I most need reassurance that my life is beautiful and fulfilling.

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Can Painkillers Cause More Harm By Masking Pain?

Ben’s story in When Is a Pain Doctor a Drug Pusher?, the NY Times Magazine article I wrote about yesterday, brought up something I’d never thought through: Opioids don’t correct the problem that causes pain; they just mask the pain. Couldn’t this cause more harm than good?

Ben, a farmer for whom “. . . years of pushing 800-pound bales of hay wore out his back,” said:

“They [opioids] helped my pain. I could get out and work, use the bulldozer. I was working a 250-head cattle herd. I was doing everything relatively pain-free because of the drugs. They gave me my life back.”

When there is a physical cause of pain, won’t doing activities that the injury made impossible cause further degradation in the damaged area? The same areas of the body are stressed as were before, but the body’s warning system can’t do its job.

Even when pain can’t be traced to a direct physical cause, as with headache disorders and migraine, masking the pain may still be harmful.

Say I have enough pain relief to return to my previous levels of activity. The “lifestyle management” tools I use now — regular sleep, exercise, minimizing triggers, etc. — would no longer seem as important. I’d probably let them slide. Why worry about triggers if they don’t affect my daily life?

But I’d still have chronic daily headaches and migraines, I just wouldn’t feel the pain of them. Getting rid of pain would not keep chronic daily headache and migraine from doing harm in my body and brain. The potential for long-term damage remains. Also, migraine has many symptoms other than pain that a painkiller can’t treat.

On the contrary, some argue that the brain learns to be pain and gets stuck in a rut. If something no longer causes pain, then the pressure on this mechanism could let up and allow the brain climb out of it’s pain rut. If this is the case, opioids make sense.

I’m not arguing that opioids shouldn’t be available for patients who need them. (My stance is the opposite.) However, treating an illness and treating pain caused by the illness require different approaches. Getting closer to the source of the problem when possible seems the logical place to start.

Addiction is the problem child in the realm of opioids. Sometimes the quieter kid really needs the attention.

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