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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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Mini-Medical School from UCSF’s Osher Center for Integrative Medicine

University of California San Francisco faculty members and other experts discuss current issues in health and science. Presentations from the last five years are available online. Some of particular interest include:

Coping With Stress

Brain, Mind and Behavior

Complementary & Alternative Medicine

UCSF’s Osher Center for Integrative Medicine runs the mini-medical school program.

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Stress, Complaining & Coping (or Trying to Keep My Life Together)

I got home a week ago and have been doing poorly since Saturday. I felt great (compared to usual) when I was in Phoenix but, true to my away-from-home pattern, crashed when I returned home.

Meditating was a fantastic tool when I was in Phoenix. When I felt nausea or a meltdown coming on, I’d meditate with my trusty eye pillow on and be good to go in 30 minutes (90 minutes when I nodded off). Now the nausea simply won’t go away and relaxation is a joke. I can tell my baseline stress level is higher than it was in Phoenix. I fight to meditate, which only makes me more tense.

What’s that you say? Isn’t being at my parents’ house while my dad is sick and my mom is completely overwhelmed more stressful than being at home? I do love to be contradictory. I was actually helping and could see how everyone was really doing, not far away wondering what is really going on. Besides, the four of us had fun and laughed a lot. In my complicated way, it was less anxiety-provoking than living my normal normal life that I can’t keep up with.

I feel like I could mimic a vacation state if I got clutter and meals under some semblance of control. This amounts to thinking of what I should do — or could do if I were able. Hardly a good way to relax.

I have felt too bad and too drugged to blog. As I write I remember yet again that letting the words flow from my fingers is the best way for me to think. I finally believe myself when I say I’m very sick and my life is hard right now. That’s a big step.

I can usually put a positive twist on my struggles without thinking about it. I’ve had to search lately. Today I’m relying on the wisdom of mindfulness meditation teacher: “As long as you’re breathing, there’s more right than wrong with you.”

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Biofeedback Session: “Mindfulness-Based Wellness” & Electromyogram Biofeedback (Sans Hand Warming & Beeping)

I went to my first biofeedback appointment yesterday expecting to learn to warm my hands. I admit I was dubious, even though research supports the efficacy of temperature biofeedback for migraine and other headache disorders. Warming my hands? Is that really all it takes to get my mind off the pain? I was happy to learn my biofeedback provider uses a different type called electromyogram (EMG) or muscle biofeedback.

The Talking Stage
My story was first, then she detailed the nature of chronic pain, including recent studies showing the brain’s involvement in pain. She also gave an overview of mindfulness-based stress release, which her approach is based on. The main tenet is to be engaged in the moment without focusing on pain.

Hooking Up to the Machine
She hooked me up to the machine with electrodes on my jaw and neck, my problem areas. The monitor showed the levels of electricity, which indicates tension, in each area. A green line indicated a good relaxation level; the red line showed what to work on.

Learning to Release Muscle Tension
At first the readings for my jaw and neck were both above the green line and most spiked beyond red. Following the provider’s continuous instruction (given in a low, calming voice), I tried to consciously relax my muscles. She advised me to look at my brain as if it were the sky and the pain was just a passing cloud — the idea was to think of the big picture of my brain and my life, not just the small portion of it that is pain.

What’s Next
The session was interesting and I’m eager to learn more. Turns out the therapist is teaching an eight-week class on tools for mindful-based wellness, including meditation, gentle yoga, recommendations for incorporating techniques into your life, and a lot more. Signing up was a no-brainer! Course concepts are so similar to individual sessions that I’m going to start with the class. I will definitely have an individual class at the end of eight weeks so I can see what I learned and what I should work on

There are far too many components of this to cover in one post. Expect more on mindfulness-based wellness and biofeedback. If there’s an aspect you’d like me to cover, leave your thoughts here or on the online support group and forum. You can also contact me at kerrie [at] thedailyheadache [dot] com.

Mindfulness-Based Wellness and Stress Reduction Classes
Jon Kabat-Zinn developed the techniques that my biofeedback therapist and many others use. Hundreds of providers offer individual sessions or classes. Check the Center for Mindfulness in Medicine‘s website to find a provider in your area. One place even offers online classes.

Interested in the class I’m taking in Seattle? The spring session starts Thursday (yes, this Thursday!); the next course will be offered in the fall. Classes are held at Swedish First Hill. Call (206) 215-6966 for details or to register. Please introduce yourself to me if you take the class — we can get lunch and chat.

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National Headache Awareness Week, June 3-9

As part of National Headache Awareness Week, the National Headache Foundation has identified seven healthy habits of headache sufferers. NHF’s goal is to help headache sufferers reduce headache risk and live a happy life despite headaches.

Seven Healthy Habits of Headache Sufferers

  1. Diet: Eat regular meals, avoiding foods and drinks that are known to trigger headache attacks
  2. Sleep: Maintain a regular sleeping schedule, including weekends and vacations
  3. Stress: Implement stress reduction techniques into your daily life
  4. Headache diary: Keep a headache diary of when your headaches occur, along with any triggers, and share the information with your healthcare provider
  5. See your healthcare provider: Make an appointment with your healthcare provider to specifically discuss your headache
  6. Be a partner in your headache care: Be informed, be a participant in your treatment and be an advocate for your headache care
  7. Education: Stay apprised of the latest headache news and treatment options (by reading The Daily Headache, of course!)

NHF will be hosting three podcasts this week to describe these tips in detail.

Monday, June 4
Lisa Mannix, MD, medical director of Headache Associates in Cincinnati, Ohio and an NHF board member will provide an overview of the seven habits.

Wednesday, June 6
Roger Cady, MD, medical director of the Headache Care Center in Springfield, Missouri and an NHF board member will provide an in-depth focus on the first three of the healthy habits and discuss the importance of diet, regular sleep and stress reduction in managing headaches.

Friday, June 8
Dr. Mannix will conclude the series by focusing on the remaining four healthy habits. She will discuss how to keep a headache diary, making an appointment with your doctor, being a partner in your headache care and staying educated. Judy Brown will also speak from her personal experience as a headache sufferer who has lived with headaches for years.

Adapted from a National Headache Foundation press release. (It’s a doc file, not a pdf)