Headlines
A Publication of the East Bay Headache Support Group
a member of the American Council for Headache Education (ACHE) support group network
VOLUME 6, ISSUE 1
January 2001

January 9th Meeting: Managing Headaches With Biofeedback Therapy

The East Bay Headache Support Group is pleased to welcome Ellen Place, RN, as its guest speaker for the first meeting in 2001. Ms. Place has been a biofeedback therapist for more than 20 years. She has expertise in treating various disorders using biofeedback techniques, and specializes in treating headaches.

If you have ever wondered about biofeedback and if and how this therapy can help to prevent or relieve your headaches, join us in the Ball Auditorium at John Muir Medical Center from 7:30 to 9:00 p.m. on Tuesday, January 9th. For more information, call (925) 938-5252.

Fifth Anniversary Celebration

The East Bay Headache Support Group celebrated its fifth anniversary with an awards banquet to honor its volunteers. The festive event was held at the California Cafe in Walnut Creek on December 11, beginning with a delicious meal and concluding with the presentation of plaques and certificates to the group’s hard-working volunteers.

As a non-profit organization, the East Bay Headache Support Group is dependent on donations from individuals and corporations, and on its volunteer organizers. At the awards ceremony, Julie Wong, sales representative for Glaxo Wellcome Inc, was presented with a plaque to thank her for her work in obtaining two generous grants from her employer to help fund the support group’s activities. Michael Stein, MD, and Leslie Davis also received plaques in recognition of their volunteer work for the organization; and Certificates of Appreciation were awarded to Janet Young, Reg Fong, Joan Kelley, Richard Tomchalk, Donna Johnson, and Chris Sanfilippo for their dedication as volunteers. Also, Dana Giese, who was unable to attend the banquet, was presented with a certificate later.

At the awards presentation, Dr. Stein and Ms. Davis gave a narrative of the support group’s history since its inception five years ago:

In December 1995 Dr. Stein and one of his headache patients, Leslie Davis, co-founded the East Bay Headache Support Group. Their goal was to create a place where people who suffer from frequent and/or debilitating headaches could come together for support and education about living with and treating problematic head-aches. More than 120 persons met at John Muir Medical Center for the first support group meeting on January 9, 1996, which affirmed their belief that there is a need for such an organization in the community.

Several persons stepped forward to volunteer at that first meeting, and a planning committee was created. Dr. Stein is President and medical advisor for the organization, Richard Tomchalk is Vice President and bulk mailing expert, Leslie Davis is Secretary and writes the newsletters and meeting notes, and Donna Johnson as Treasurer worked to obtain non-profit tax status for the support group and keeps track of donations and expenses. Chris Sanfilippo answers the phone for the group, and Reg Fong, Joan Kelley and Janet Young help find speakers, mail newsletters, and set up for the meetings.

Three years ago Dana Giese volunteered as Webmaster and created a Web site for the support group, which includes news-letters, notes from meetings, and links to other sites offering support for headache sufferers. See wwwheadachesupport.org.

Support group meetings, usually with guest speakers, were held one evening each month from January 1996 through December 1999, and then the planning committee switched to a bi-monthly format. Meetings are now held six times per year and almost 300 newsletters are mailed to interested persons prior to each meeting (our database currently lists 694 names). Participants come from all parts of Contra Costa County, and from as far away as San Francisco, Alameda, Solano, and San Joaquin counties.

The East Bay Headache Support Group is one of approximately fifty support groups under the auspices of the American Council for Headache Education (ACHE) in Mt. Royal, New Jersey. ACHE has acknowledged the Walnut Creek group as one of its largest and most active support groups for headache sufferers in the U.S.

Others who offered their volunteer assistance over the years were Dave Flohr, Tracy Titus, Karen Henderlong, Jeanette Honeyman, Jeanie Wakeland, Barry Harrington, and Meg Johnson.

In addition to honoring our volunteers, the East Bay Headache Support Group would like to publicly thank the pharmaceutical companies (Glaxo Wellcome, Merck & Co, and Novartis) and the many individuals who have donated generously over the past five years. And thank you to our many speakers who have, without remuneration, shared their time and expertise with the group. John Muir Medical Center has also provided a centrally-located comfortable meeting room at no charge for which we are grateful.

At the conclusion of the awards banquet, Richard Tomchalk, charter member, shared some thoughts he had as he reflected on the past five years:

"The EBHSG (East Bay Headache Support Group) is, without a doubt, the best support group in the USA... Here we are, five years after our first meeting, and we are still going strong." Then Richard surprised Leslie Davis and Donna Johnson with a special award honoring their exceptional dedication to the group, and declared that both women exemplify the following attributes:

Enthusiasm - Perseverance - Communication skills - Innovative ideas - Determination - Friendliness - Compassion for migraineurs - Writing skills - Follow up - Follow through - Desire to share one’s time and energy.

Have your headaches improved to the point where you can volunteer a little time and energy to the East Bay Headache Support Group?  

Though we have a dedicated group of volunteers, more are welcome to bring in new ideas and share the load of organizing meetings, mailing newsletters, etc. The Planning Committee meets one evening every other month in Walnut Creek.   Consider writing a personal profile of your struggles and/or successes in dealing with your headaches and submit it for the next newsletter. * Contribute ideas for meeting topics and speakers. Call Leslie Davis at (925) 228-1084 or send e-mail to ladavis98@aol.com

Happy New Year!

New Light Shed On Migraine Causes - Believed To Result From Unique Electrical Disorder of Brain Cells

The pain of a migraine can be so intense it’s disabling. Your head pulses, usually on one side, for hours or even days. Moving worsens the throbbing. You’re nauseated, sensitive to light and sound. Sometimes you have an "aura," seeing pinpoints of light or other visual disturbances before the headache hits.

Some 28 million Americans suffer this pain, yet half don’t realize that migraines —and not some other headache—are to blame, and millions go without treatment.  That’s particularly disturbing to experts because, in a revolutionary shift, scientists are discovering that migraines are caused not by the abnormal blood vessels once blamed but by a unique electrical disorder of brain cells.

The findings open new avenues to attack these tenacious headaches, and suggest that treating migraines is important because people who suffer very frequent attacks seem vulnerable to physical changes inside the brain that could lead to chronic pain.

"We should probably be treating very quickly," Dr. K. Michael Welch of the University of Kansas Medical Center in Kansas City, whose neurological research is spurring this new view of migraines, told a recent meeting at the National Institutes of Health.

One-fifth of sufferers are candidates for medicines that can cut frequent attacks by half, yet fewer than 1 million get preventive therapy, said Dr. Richard Lipton of New York’s Albert Einstein College of Medicine. Once a migraine hits, only a fraction use the most powerful prescription treatments.

Why? Too many primary care physicians don’t know how to treat migraines, specialists say. At a recent seminar, only 45 percent of family physicians shown migraine symptoms got the diagnosis right. Plus, only one-third of patients have that classic aura before an attack—yet many doctors erroneously think no aura means no migraine, Lipton said.

How Do They Really Work?

Scientists once thought migraines were caused by abnormally dilated blood vessels. Hence, many pain relievers work by constricting blood vessels. But new imaging devices allow scientists to watch patients’ brains during a migraine attack, and they’re discovering sufferers have abnormally excitable neurons, or brain nerve cells.

When something triggers a migraine, those neurons suddenly fire off electrical pulses at the back of the brain, firings that ripple across the brain’s top and then back down to the brain stem, where important pain centers are located, Welch explains. This electrical "wave" spreads like water ripples when you throw a pebble in a lake. In minutes, blood flow jumps, until the wave passes and blood flow sharply drops. The resulting pain comes from either the brain stem activation or blood vessels inflamed by the rapidly changing blood flow—or both.

Experiments in which scientists used a powerful magnet to stimulate neurons provided startling evidence that some people’s brains are predisposed to hyperexcitability. When people prone to migraines were stimulated, they literally saw spots similar to a migraine’s aura. One even went into a migraine as spellbound scientists watched. But when people who don’t get migraines were stimulated, their neurons weren’t affected.

In real life what triggers these neurons? Too much or too little sleep, hunger, bright lights, certain foods, women’s fluctuating estrogen levels.

Adding to the push for treatment, very frequent migraine attacks seem to physically change the brain stem’s pain centers, sometimes leading to constant headaches, Welch says.

Medicines Already Available

While scientists use the findings to hunt better treatments, helpful medicines are already available. Most notably, some drugs that fight epilepsy by suppressing abnormal neuron firings—Depakote and gabapentin—also prevent migraines, says Dr. Stephen Silberstein of Thomas Jefferson University Hospital in Philadelphia. The four most powerful prescription treatments, called "triptans," shrink inflamed blood vessels. And women often are helped by adjusting birth control or hormone therapy to stabilize estrogen levels.

The treatments aren’t perfect. But too many patients never see a doctor, or see one who follows the outdated practice of trying less powerful drugs first, Lipton says. His advice: Don’t give up—if one drug doesn’t help, demand another.

By Lauran Neergaard, Associated Press, June 13, 2000

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