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Making Peace With Pain: Accepting Migraine and Chronic Daily Headache in My Life

Accepting that I may have a migraine or headache every day for the rest of my life is the most effective treatment I’ve had. But how did I get here and what does acceptance mean, exactly? Time. I know, not an encouraging answer, but where I am now is worth all the time it took to get here.

After my occipital nerve stimulator proved ineffective in January 2004, I was devastated. What I thought was my last chance at treatment had failed. Feeling like you have nothing left can suck you into a dark hole. It can also be the motivation necessary to claw back to an enjoyable life even if chronic daily headache and migraine are going to stick around. Most likely, it will be both.

For more than a year, I wrapped myself in the sadness and hopelessness that enveloped me. Mourning losses from my illness was necessary, but I wanted my life back. Even one full of pain and exhaustion was preferable to where I’d sunk. I was finally motivated to find a happier way to be.

Reading The Anatomy of Hope by Dr. Jerome Groopman played a crucial role. He writes: “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

Until then hope was believing I’d find a miracle treatment. Groopman taught me that hope is knowing a happy life is possible even with illness. Finding the joy in everyday life is far better than clinging to desperate desire for a magic cure.

Instant change didn’t follow my aha! moment, but put the process in gear. Now I have days where the thought “I love my life” jumps unbidden in my mind. That never would have happened four years ago. I still have plenty of days that are horrible, but hope lurks even on days I don’t think I can handle it anymore. When I feel OK, I really do try to seize the moment, as the cliche goes. Corny yet true.

The following books have helped me along:

  • The Anatomy of Hope by Jerome Groopman – The first time I read this, it was just an interesting collection of essays; the second time I “got it” and took the messages to heart. That was when I was first beginning to accept headaches as a permanent part of my life.
  • All in My Head by Paula Kamen – A memoir and great information source on chronic daily headache. She recommends Chronic Illness and the Twelve Steps by Martha Cleveland for accepting illness. (Kamen is also a contributor to the New York Times’ migraine blog.)
  • The Chronic Illness Workbook by Patricia Fennell – The same idea as the 12 steps book, but with less of a spiritual focus and is more methodical (for lack of a better word). I prefer this one.
  • Kitchen Table Wisdom by Rachel Naomi Remen – In the self-help/inspiration genre without being over the top pushy or mushy. The thoughts it provokes have been vital to my acceptance of illness. My copy currently has 14 bookmarks in it.

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Physical Therapy: Weak Muscles, Scar Tissue & Posture

Physical therapy looks like a promising migraine/headache treatment for me. We made progress in the first two sessions and my third tomorrow. His take makes a lot of sense to me.

Weak muscles in my back are partly to blame for neck pain. Envision your back as a lollipop stem. The tasty part of the lollipop will be firmly on top if the stem is solid. If not, the candy will flop around on the stick.

When your neck isn’t sturdy on its stem, it also moves around. Muscles and tissue tighten to compensate, moving muscle, tissue and bone out of place. Strengthening little used muscles, which align the neck and hold its correct position, is part of the solution.

Built up scar tissue on the left side of my neck is another culprit. The scars have essentially fused two muscles, keeping both from working properly. Myofascial release from my physical and massage therapists will loosen the scar tissue, although it is so old that some will remain.

Interestingly, the scar tissue isn’t on the right side, where my occipital nerve stimulator wires were. The physical therapist believes it is connected to car accidents I had in high school. No injuries were treated after the accidents because I didn’t notice any. Yet, he said even the most minor accident could have contributed.

I’m working on my posture too. Instead of pushing my shoulders down, which I’ve always thought was the way to correct bad posture, I’m lifting my sternum to be upright. Looking in the mirror, my “corrected” posture looks strange, but it feels great.

My treatment path is promising. Still, I wonder if I’m just searching for a culprit. Time and time again, anything possibly connected to my migraines becomes my focus. After a particular treatment doesn’t work, I move to the next explanation with as much fervor as the last.

I’m fond of this one for now. It echoes what I’ve learned from yoga and massage therapy and repetition is reassuring. My fingers are crossed and my outlook is good.

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Kerrie’s 2007: A Year to Forget

There was a theme consistently underlying my 2007 posts: My migraines were BAD. The year started with five months of being woken up by a migraine nearly every night and ended with more than two months of horrendous all-the-time migraines. I felt more beaten down than I have in the last three years.

Before you get discouraged by the following review, know that I am more optimistic about treating my migraines than I have been since I got my occipital nerve stimulator in December 2003. (Read more on that following the treatment review.)

Acupuncture
I revisited acupuncture, but my superhero acupuncturist told me that more sessions would be a waste of time and money.

Naturopathy/Homeopathy
Shedding tears in the naturopath’s office the first time was enough to keep me from seeing her again. Against my hard fast rule that I not take anything I can’t identify (which I also broke with the acupuncturist), I took the homeopathic remedy, vitamin D and magnesium supplements she suggested. They did nothing.

Chiropractic
I gave the chiropractor two months, which she said was the maximum time to see results. I went five times one week, four the next, three for a couple weeks and so on. Turns out I hold my adjustments very well. Unfortunately my migraines didn’t changed and having my neck adjusted freaked me out. Once she stopped asking about my headaches, I knew she had given up.

Sleep Specialist
Many people with treatment-resistant headache disorders become much more treatable once they have sleep problems resolved. Although my sleep seemed fine, I saw a sleep specialist with a background in neurology. Sadly, my sleep is practically perfect. I sleep eight hours, wake up rested, nap when I need to without having it interfere with that night’s sleep.

New Headache Specialist
I saw a new Seattle-based headache specialist in May. We hit it off immediately. Too bad we focused on my blog, headache patients in general and clinical trials. I left enrolled in a clinical trial for Lyrica (which I quit) and with a potential advertiser for The Daily Headache, but without having discussed any of my questions or other treatment options.

Food Trigger Diets
Food triggers were my obsession, even though I’ve always thought them to hog the spotlight in headache treatment (only about 25% of people actually have food triggers).

Although wheat and dairy aren’t considered headache triggers in the general sense, they were my target for months. My no-dairy foray lasted six weeks — until I discovered that I’d dropped 12 pounds in that time. Testing wheat lasted three months, yet I had no ill-effects when I reintroduced it.

After a couple years of avoiding them, I’m almost positive that beans, nuts and legumes are triggers for me. But berries, squash, sunflower and soy oil, barley, pineapple, onions. . . are all questionable.

I declared that I was going on a drastic food trigger elimination diet. A couple weeks later came this post: Drastic Elimination Diet for Migraine Triggers: What Was I Thinking? You get the point.

Myofascial Release
Finally some good news. In August I started myofascial release and noticed results quickly. The changes aren’t dramatic, but each treatment usually gives me some relief. The effects have never lasted more than two days — and sometimes only a couple hours — but I’m not complaining.

Craniosacral Therapy
Two sessions weren’t enough to judge if craniosacral will be effective. I’ll definitely try again, but it just didn’t work out this time. The woman I saw was wonderful and spent an extra 30 minutes with me each visit. Unfortunately, driving to her practice takes 30 minutes. After spending 20 minutes lost on the way there and another hour on the way home, the negative associations were too strong for me to go back.

What Now?
When the last migraine spell lifted in mid-December I remembered how good I could feel. Thinking about what I love about my life was no longer a reminder of what I couldn’t have, but of how wonderful it truly is. I am happy and getting out of the house more. I even get to see friends!

This year’s list of treatments to try is as long as it was last year. Its like I’ve spent the last 10 years whittling down possibilities and arrived at the most promising therapies. Having had this faith shattered in the past, I am cautious. Nonetheless, I’m positive a brighter path is ahead.

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Newsweek on Chronic Pain Research & Treatment

Pain research and treatment are the topics of this week’s Newsweek cover story. The article centers on chronic pain caused by physical injuries in war, but it has gems for anyone with chronic pain. There’s a great illustration of how opioids and nerve blockers affect pain signals in the Pain and its Pathways graphic.

“‘The public understanding of pain has been that it’s a stubbed toe or a broken bone,’ says Will Rowe, executive director of the American Pain Foundation. ‘But that’s just one aspect of it. Now there’s a growing awareness that pain is a disease of its own.’

“This is far more than a semantic change, Rowe adds: it’s ‘tectonic.’ Docs now know that the brain and spinal cord rewire themselves in response to injuries, forming ‘pain pathways’ that can become pathologically overactive years later. They are trying to sever this maladaptive mind-body connection with a host of new drugs and approaches. Some focus on recently discovered chemical receptors in the brain and muscles. Others pack all the punch of narcotics with less of the specter of addiction. . . . New types of electrical stimulators targeting the brain, the spine and the muscles hit the market almost every year. Fentanyl skin patches, first introduced in 1990, have evolved into a patient-controlled, push-button device called IONSYS, available by the end of this year.”

Later in the article:

“Some of the most promising pain treatments of the past decade have turned out to be disappointments. Studies of some radiofrequency therapies show they work no better than placebos. Spinal-fusion surgery, a recent review found, has ‘no acceptable evidence’ to support it. And if a treatment does work, says Edward Covington, a pain specialist at the Cleveland Clinic, ‘for most people, the effect is temporary.’ There is no cure for chronic pain, period.

“There’s not even any ‘single drug or technology alone’ that can treat all the types of pain, says Eugene Viscusi, director of acute-pain management at Thomas Jefferson University Hospital in Philadelphia. Most people need two or three therapies in combination. Scientists’ new understanding of pain’s broad effects on many levels of the nervous system explains why: a multipart syndrome requires multipart therapy. Viscusi notes that patients under anesthesia still have elevated levels of the pain enzyme Cox-2 in their spinal fluid following surgery. They may not feel pain, but some parts of their brains still think they’re in it. For any treatment to work long term, it will have to address not just the immediate sensation of pain but the other, subtler aspects—and there are surely some of those that scientists don’t know about yet.”

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This Time Last Year, April 9-14 & 2-8

Year_reviewApril 9 to 14

Broadway Play Examines Issues of Illness
An insightful and moving New York Times article describes the blurred lines between wellness and illness shown in the play Well. An excerpt: “‘. . . [W]henever the cause of an illness is mysterious, it’s assumed to come from psychological problems or a moral weakness? And once science finally figures out the medical root of the illness, that assumption disappears.'”

Partnering With Your Health Care Provider
Recognizing your relationship with your health care providers as a partnership is a way to feel empowered and get the most useful information from your doctor.

Too Much Sleep as Headache Trigger
Sleeping in can relieve a migraine for me, but sleeping late without a migraine can trigger one.

Lyrica Aids Sleep
In addition to its role as a chronic pain reliever, Lyrica (pregabalin) may also be an effective sleep aid for people with chronic pain. In turn, better sleep may also help relieve chronic pain

Trapped
For the last few years, we’ve gotten season tickets to the theater. . . . I’m filled with anxiety in the days before each show. What if my headache is bad? What if I’m stuck next to someone wearing too much perfume? What if…?

April 2 to April 8

Inconclusive
X-rays showed that the leads of my occipital nerve stimulator hadn’t slipped significantly, but they would certainly slip more.

A Waiting Game
After meeting with my pain specialist and neurosurgeon left me with the simple decision that I should wait and see.

High Frequency & Severity of Migraine in Teens
A nationwide study of 18,714 adolescents found that headaches are causing a lot of disability for kids 12 to 19 years. Researchers found that adolescents’ migraines often go from one or two times a month to 10 to 15 times a month within a couple years.

Trexima Study Presented at AAN Meeting
I first ask the question I posed last week: If the treatment that most accurately compares to Trexima is Imitrex taken simultaneously with naproxen, why wasn’t the combination studied?
My comments about the patent was based on misunderstanding how the process works. See my latest Trexima post for an accurate explanation how it works.