Headache Sufferers Form Fellowship of the Afflicted
In the prison where these women live, Volkswagens are verboten. As are air-conditioners, cheese, dancing at weddings, sleeping too late or waking too early.
In the prison where these women live, subsistence means drugs, not food. Tablets, syringes, tongue-dissolving caplets. Stored in cabinets, tote bags, knit purses, stacked in the fridge next to the kids’ lunches.
In the prison where these women live, life is squeezed--so tightly that it cannot move or grow--into a tiny, dark airless room where the walls shake with pain.
“When you have a headache like this, it’s worse than anything else,” said Trudy Martin, who has had a migraine a day for the last 28 years. “You can’t think. It’s in your head. You can’t escape.”
These women, plus an occasional man, make up Los Angeles’ only Headache Support Group, a fellowship of the migraine-afflicted who meet to share experiences, empathy and the most recent scientific guesses as to what this impenetrably mysterious illness might be.
They get together every month in West Los Angeles because living with chronic headaches is hard work. The various kinds of headaches one can get--cluster, TMJ, migraine, rebound--leave them curled up in fetal positions in darkened rooms, nauseated, unable to read, watch TV, talk, or tolerate light or noise. The pain can last for hours.
Some headaches can be halted by on-the-spot medications, but some don’t respond to anything. To prevent them or stop them mid-pound, the patients take drugs that sometimes slowly poison their kidneys, livers and hearts.
After saying for years that migraines are caused by relaxed blood vessels, scientists discovered that it’s more complicated than that. They know, for example, that some headaches are linked somehow to the change of hormones, which is why women have so many more of them.
So these patients are left largely to their own devices. Frustrated by the unyielding bureaucracies of HMOs, tired of hearing “just take two aspirin and you’ll be fine,” they have formed a dense subculture of survival.
On Wednesday nights, they drive in from the Valley or Mid-City or Newport Beach to a converted garage. Upon arriving at 7:30, they immediately dim the lights, whip out wraparound sunglasses and ice packs and let the horror stories flow.
”. . . So Kaiser tells me that they don’t have anyone for headache relief here,” says Douglas Jones to the support group at a recent meeting. Nodding heads and mutters show the group’s assent. Everyone speaks in softened voices, like shell-shocked soldiers, scared of noise.
“You know, Douglas, I hope you get back in that HMO and fight them a little bit,” Susan Schuster tells Jones. She directed a school for disabled children until a car accident left her unable to work and cursed with migraines.
It was Schuster who formed the support group. She missed working and helping people. Her migraines are exertion-related, a very rare form. Unable to run upstairs, stretch her back or carry too-heavy grocery bags, she says she misses dancing the most. She threw caution to the wind once at a cousin’s wedding, got out on the dance floor--and got a migraine that lasted three days.
“After that, you ask yourself, ‘Is dancing worth it anymore?’ ” she says.
One of the most noticeable traits of chronic headache sufferers is bizarre habits. Carol Parvizyar totes sandwiches around all day because if she is hungry for more than 15 minutes, the migraines come. Trudy Martin can’t ride in buses or Volkswagen Beetles because of the jarring ride.
“God, I miss wine,” says Carol.
All of them look for employers who understand that most days they will have to lock themselves in a bathroom stall, pull out a syringe and inject themselves with specialized medication to avoid curling into a ball on the floor and vomiting from the pain.
“Other people in our lives don’t understand,” says Susan, who has huge liquid eyes and hands out swarms of informational leaflets. “We have to reorganize our entire lives to avoid pain.”
Because there is so much mystery about the cause of chronic headaches, patients often become activists. It’s a battle of us-against-them, where unbending HMOs, unsympathetic doctors and rigid Social Security administrators form an endless wall of “them.” A battle where “victories” come at a cost of $38 to $40 per shot and $10 per pill. Where directions for drug use and rumors about new treatments take the place of standard gossip.
“I bought some of that new stuff--Nonee juice,” says Trudy. Everybody turns in their chairs and leans in toward her, asking what it is. “It’s the new thing,” she responds. “I’m going to crack it open this weekend.”
“You know, you can get Maxalt in a tongue-dissolving capsule,” advises Myrna Berger.
“I’m on Depocote, which is actually an anti-seizure drug, but now I only get one headache a week,” says Carol.
Susan occasionally mentions, with a lilt of pride in her voice, the people who have managed to bring their headaches under control and “graduate” from the group. Most people, though, will bounce for years between doctors, pain specialists, chiropractors, neurologists, psychiatrists, biofeedback, allergy specialists, crystal healing, magnet therapy. . . .
Until then, there’s just the kindness of these strangers, bound together as inmates in their own prison.
