A Publication of the East Bay Headache Support Group
A Member of the Americal Council for Headache Education (ACHE) Support Group Network  

VOLUME 7, ISSUE 1
January 2002

January 8th Meeting:  Dealing with Frustrations—Let’s Hear It From Both Sides 

Do you ever have to miss a family or social event because of a painful headache?  Do headaches keep you from being a cheerful member of your family, able to carry your end of the give and take in a marriage/partnership?  Do your children have to play quietly while you keep to yourself in a darkened room?  Let’s face it.  Debilitating and/or frequent headaches affect more than just the person with the pain—your family or friends can get frustrated also with having to deal with your headache condition.

For the first meeting of 2002 (starting our seventh year!), the East Bay Headache Support Group has planned something different.  We have invited two licensed Marriage and Family Therapists, Mary Waldner and Janeece Dagen, to facilitate a discussion between headache sufferers and their spouses/partners/caregivers.

Encourage your spouse/partner/caregiver to come to the meeting, as this will be their opportunity to air frustrations they have about living with and caring for a headache sufferer.  And ask him or her to read “The Emotional Impact of Headaches” by Kathy Anolick, MFCC, and Erika's “Personal Profile” found inside.  These might help our caregivers to think about their concerns and questions they would like to bring up during the discussion on January 8th. 

Since earning her license 23 years ago, Mary Waldner, MFT, has worked in hospital, agency and private practice settings with adults, couples, families and teens—individually and in groups.  She has worked with issues of depression, anxiety, addiction, abuse, phobias, stepfamilies, communication difficulties, loss/grief, etc. 

Janeece Dagen, MFT, has specialized in relationship work and trauma therapy over the past 20 years.  Her experience includes family, couples, and individual therapy with clients who present with symptoms of depression, anxiety, eating disorders, past trauma, chronic pain, life-threatening illness, work stress or substance abuse recovery.

Mary and Janeece will separate the group, and one of them will facilitate a discussion with the caregivers, while the other one talks with the headache sufferers.  In the small groups everyone will have the opportunity to talk about their frustrations with having to cope with chronic headache conditions.  And then Mary and Janeece will bring us back together for a joint discussion.

Come on your own even if your spouse/partner/caregiver cannot attend.

We will meet in the Ball Auditorium downstairs at John Muir Medical Center from 7:30 to 9:00 p.m. on Tuesday, January 8.  For more information, call 925-228-1084.

Personal Profile by Erika

I was 11 years old in the 7th grade, as we pulled out of the St. Louis Parochial School playground in a stuffy yellow school bus bursting with rowdy classmates.  It was a sweltering autumn afternoon, Indian Summer, in New England.  The green vinyl seats were soft and sticky, emitting a strong, noxious plastic odor in the overwrought heat.  I was in agony, as I was nearly every afternoon at 3:00 pm—behind my left eye was a pain like a dagger being driven into my temple.  The shrieking kids, the swerving bus, the bright fall sunlight, combined with a pain I could not explain to anyone, made my eyes glass over, as I fought back nausea and tears.  My only brother, just one grade ahead of me and distressed by my daily torture, spent most of the long bus ride commanding the students to be quiet because his sister was very sick.  But, his requests were drowned out by their elated cheers at being released from school.  I slipped into a crumpled position, bracing myself, hoping that soon I would be at home in bed in the quiet darkness.

My migraines began when I was very young, 4 years before puberty.  It wasn’t until I was a senior in high school, when I moved to Northern California with my father, that I talked to a professional about my headaches.  At 16 years old, I was popping Excedrin like candy, rotting a hole in my stomach, without much relief.

The headaches were well known to me by then and I knew all their characteristics and qualities like an old friend. 

My migraines always lasted 72 hours.

The searing pain was always behind that left eye; my face muscles would contract and grip to fend off the discomfort, and I would dig my thumb into my skull, simply for a welcome distraction.  The feeling was distinctive and welled up a sick stomach, a helpless panic, a resigned depression that would do me in for 3 tiresome days.

Throughout high school and well into college, I studied like a fiend.  Late nights of extreme fatigue, dehydration, caffeine, and Type A perfectionism often had me laid up in my dorm room with an ice-cold cloth on my forehead, a wastebasket by my twin bed, and bottles of painkillers next to the saltine crackers.  My roommate was a peach and would go to the library to leave me in the stillness with the blinds drawn, in hopes I would be able to eat something in the evening and finish my pressing assignments.  These deadlines loomed in my cranium behind the knife-like pain and only compounded the circular stress...  I must get better to complete my work!  However, I cannot get better unless I forget about my work and relax!  Round and round, the frenzy fed on itself and built increasing momentum.  Angry, fretful tears would stream down the sides of my face and slip into my ears; I did not dare move to wipe them away.  The sound of my own heartbeat hurt inconceivably.

My lifestyle and habits provided a fertile environment to breed and perpetuate my headaches. I tried to make some simple changes to break the cycle.  I made a concerted effort to drink water regularly, avoid foods with tannins, eat frequent small meals to maintain my blood sugar and insulin levels, avoid caffeine, and manage my stress level.  But whom was I kidding?  This was powerful DNA at work! 

I inherited a long family legacy of migraines. 

My father suffered from migraines and cluster headaches since he was a boy.  His sister, my Aunt Margie, endures brutal migraines even now—as did her mother before her.  I was not to be exempt, and my piddly, half-hearted attempts at controlling them only made me feel defeated and victimized.  My father felt punished himself, for passing on to me the genetic material responsible for my pain.

My productivity, physical and emotional well-being, and outlook on the world suffered greatly into my 20’s.  In undergraduate and graduate school, I had been able to plan for deadlines in advance.  My schedule was flexible enough to accommodate a 3-day headache...  I could cram for 24 hours straight to complete a term paper or study for an exam after a long headache had stolen 3 days from my life.  I could push my body and mind to make my work appear well-planned and seamless and then spend an entire day, recouping in bed from the vicious pressure.  But, now, the post-education, 8am-5pm, 5 days-a-week lifestyle presented a whole new set of challenges.

Coworkers and managers frowned upon any absence from the workplace that could not be explained by the presence of blood or an x-ray proving broken bones.  My pain was perfectly invisible to others and widely misunderstood.  I found myself in the world of independent contracting, which offered alternatives including telecommuting and working off-hours.  No one knew I was heavily sedated during the day and up working, groggily and furiously, at 3 a.m.  Perfection became more and more important to me, as I drove myself harder and harder to counteract any perceived criticism (largely my own).  I hid the circumstances from most everyone, realizing the negative stigma migraines often carried. 

Don’t worry, there is a happy ending.  In spite of being denied health coverage, fighting the decision hard and winning, only to be rated by the insurance company with ultra high monthly premiums—all by the ripe old age of 26!—my headaches are now under control.  I’ll be 33 this month and the wild ride has taken me through a labyrinth of treatments and medications, both Western and Eastern in nature.  Beta-blocking drugs, Botox, and hormone therapy have stabilized my internal chemistry.  Massage and stretching assist my body in learning to relax and manage this stressful world we live in. 

Each migraine patient is unique and discovering your own headache triggers, detrimental behaviors and habits, as well as an empathetic circle of supportive friends, family, and medical professionals are key to finding pain relief and regaining a personal sense of control. 

Thank You...

The East Bay Headache Support Group received a heartwarming response to its recent request for donations, and also received many questionnaires back with address corrections and helpful ideas for future meetings.  The Planning Committee is grateful for your monetary gifts, and your kind words of support. 

By the time you receive this newsletter, it should be only a few days before the New Year.  If you’ve been meaning to mail donations to your favorite charities, now’s your last chance for 2001.  Or, perhaps you’d like to get a head start on 2002.  The East Bay Headache Support Group, run by a small group of volunteers, is classified by the IRS as a 501(c)(3) charitable organization and donations are fully tax-deductible.  If you wish to donate, please make out your check to:  East Bay Headache Support Group and mail to Donna Johnson, 402 Kit Fox Court, Walnut Creek, CA 94598.  Upon request, a receipt will be mailed to you for your records.

2002 New Year’s Resolutions by Leslie Davis

In looking through the notes we’ve accumulated over the past 6 years (that’s 60 support group meetings already!), I have created a list of resolutions for the New Year:

 Coming Up...

Since so many of you were unable to come to our meeting on hormones with Dr. Sondra Altman, which unfortunately was scheduled for that infamous day on the 11th of September, the Planning Committee has decided to host another meeting on this most interesting topic.  Dr. Angelyn Thomas, an Oakland gynecologist, will be our speaker on March 12, 2002.

Then on May 14, Richard Tomchalk, retired pharmacist and sales manager for Abbott Laboratories, and charter member of our Planning Committee, will help us to understand how various medications work in our bodies to relieve or prevent headaches.  He will explain the triptans and also advise what new medications to look for in the near future.

HAPPY NEW YEAR!