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Hair-pullers suffer in secret

| Monday, Nov. 5, 2007

"I could pull my hair out."

At one time or another, most people spout those words. For most it is an expression of frustration. For others it is a medical disorder.

Trichotillomania is the compulsive urge to pull out hair, resulting in noticeable hair loss. Patients pull hair from the head or pluck at eyelashes, eyebrows, facial or body hair.

According to the Trichotillomania Learning Center, this compulsive disorder affects between 4 million and 11 million Americans.

"It's kind of a hidden malady," said Steve Stern of Irwin. "People don't talk about it. I'm trying to bring it out in the open."

Stern is one of the few "trich" sufferers willing to discuss the subject. He presented a program on the topic earlier this month at Norwin Public Library to mark National Trichotillomania Awareness Week.

Even medical professionals hesitate to discuss the disorder, often because they lack knowledge about trich.

"It amazes me every day how many people still don't know what this is," said Joan Kaylor. A licensed professional therapist with offices in McMurray, Washington County, she specializes in counseling people with trichotillomania.

Even professionals can't always agree on how to classify the problem.

"We don't know that much about trichotillomania," said Maribel Rivera, a child psychologist with the Behavioral Health Department at Excela Health Latrobe. "There's a lot of debate and controversy on a lot of areas. Some people think it should be under the OCD (obsessive-compulsive disorder) spectrum."

Kaylor, who suffered from trich for years, disagrees.

"It is not obsessive-compulsive disorder," she said. "When people pull, it's because they enjoy pulling and they get something out of it. There's pleasure attached to this. Folks with OCD don't want to do what they are doing."

Some research studies have shown that people who pull their own hair experience a rush of dopamine, the brain's pleasure chemical. The pleasurable feeling leads the puller to repeat the experience again and again.

However, Rivera points to recent medical studies that claim some people do not experience those emotional signals.

"Not all people who have trich have this increasing tension before (they pull) and releasing anxiety after," she said. "There are two ways of looking at it. If we actually take away the criteria of anxiety, then 3.4 percent of college women have trich. If we define it with anxiety criteria, then only 0.6 percent have trich. We could be missing so many people with that criteria."

In any case, it can take quite a while for trichotillomania to be diagnosed. People with trich don't just rip out large patches of hair. They tend to pluck one strand at a time, so it can be a long time before the missing hair is noticed.

"There is some hair that attracts pulling," Rivera said. "The hair is gray, coarser, or has split ends. Some people are so specific they use tweezers. (The disorder) is so impairing, because they can take five hours to find the hair to pull."

The behavior usually is reinforced by tactile sensations, which can be soothing. This may act as a positive reinforcement, encouraging them to continue pulling.

On the other hand, "some people might pull the hair and then feel guilty about it," said Rivera, explaining this would be a negative reinforcement. "They become emotionally unsettled, which leads to further hair pulling."

Environmental factors also can trigger trich episodes.

"It would not be surprising that at a time of stress, hair pulling will increase," Rivera said. "Some people may pull when sitting or studying."

"I get in kind of a daze," said Stern, who said he pulls more when he is nervous. "I'm not aware of too much around me. I think I'll do one more, just one more. It's an internal battle. For us it kind of feels good. We enjoy it."

"There is a compulsivity to it," agreed Kaylor. "It's like trying not to hiccup. Or try not to scratch a mosquito bite that itches. The urge comes over someone to pull their hair. It's very ritualistic."

Kaylor knows what that urge feels like. Her life has been affected by trichotillomania for more than 40 years.

"I was twisting my hair as a child," she said. "I started pulling in middle school. I didn't stop until I was 39."

Like Kaylor, Stern said he began pulling as a preteen. Puberty seems to be the time when most people succumb to the urge, mostly as a way to deal with stress.

"It's an emotional time in life," said Stern, who pulled his eyebrows and eyelashes. "I didn't understand it at all. I thought I was a freak or something. I looked kind of funny in school. Kids were always asking what happened."

The shame of disfiguring one's looks keeps many sufferers quiet about what is happening. They find ways to hide their behavior or use elaborate excuses to explain why they are missing patches of hair.

"It brought about all kinds of social problems in high school and college," said Stern. "I kept my distance from people. It's had a large effect on my happiness."

Stern said he always thought there was something wrong with him; he thought he was the only one who pulled hair. Despite his social isolation, Stern did well in school and had a successful engineering career.

"Things turned out OK," said Stern, who is happily married with two children.

There are few treatment options available for people with trichotillomania.

"In general terms there is limited literature, but what we have suggests there is no universal approach to treatment," Rivera said.

"I sought medical treatment for a year," said Stern. "Nothing helped."

Behavioral therapy worked for about six months, he said, but after his doctor left Stern went back to pulling. He also has tried a variety of medications with no favorable results.

Kaylor said behavioral therapy and medication achieve the best results, but there is no easy answer.

"You have to stay focused on this," she said. "There are no instant cures. You have to make the commitment (to therapy) yourself."

Every person with trich is different. They pull different their hair for different reasons, and treatments can be as varied as the individuals in therapy.

Some people need to learn new self-soothing techniques, such as meditation and breathing exercises. Kaylor sometimes recommends a hot bath or a massage -- anything that can help the puller feel better without being self-destructive.

"I basically go through everything I've learned, and they pick what works for them," she said.

Kaylor considers herself cured. What helped her to overcome trich was the desire to help others, which is why she started a new career as a therapist.

"I came out of my shy shell and got moving on this," she said.

Most professionals do not like to use the word "cure" when discussing disorders like trich.

"It's an episodic illness," said Rivera. "I've had kids that get better. The hair pulling decreases or remits. The symptoms can come back. We can't really use the 'C' word."

For 30 years, Stern pulled his hair on a regular basis. The urges are not as frequent these days, although he still feels them.

"Now I do my whiskers and nose hair," he said. "I don't do my eyelashes anymore."

As time went on, Stern stopped fretting about his urge to pull hair and accepted himself for who he is.

"I still do it," said Stern, "but it doesn't bother me anymore. I just accept it."

Does diet matter?

Some people with trichotillomania are discovering a correlation between what they eat and the urge to pull out their hair.

While there are no medical studies to support the connection, John Kender, a computer science professor at Columbia University in New York City, believes eating poorly can aggravate the condition. He has developed a diet that calls for eliminating sugar and caffeine.

"It has worked for several hundreds of people," said Stern. "But there is no proof. It is hard. I'm a big fan of sugar."

Kender, who says he has been "in remission" from trich for more than eight years, has conducted his own research. People with trich should avoid eating peanuts and other legumes, egg yolks, sugar, caffeine, fish oils, shellfish, butter, yams, soy products and organ meats such as liver, he says.

To test his theory Kender advises people to eat a handful or two of peanut M&M candies washed down with sugary Coca-Cola. The urge to pull should increase in three hours.

On his Web site Kender writes, "I consider myself in an enforced state of remission through dietary means. My research and experience strongly suggests that for me, (trichotillomania) is much like an allergy."

Joan Kaylor, a licensed professional therapist who specializes in counseling people with trichotillomania, also believes eating right can play a role in reducing the severity of trich. She takes time to counsel her patients on nutrition and recommends a diet low in sugar.

"Garbage in, garbage out," Kaylor said. "If you don't have a balanced diet it will aggravate any situation, not just trich."

Alternative medicine is another option for treating the urge to pull hair, Kaylor said. although no research studies support her theory, she urges patients to try chiropractic care.

"I am a big proponent of chiropractic," Kaylor said. "A healthy spine and a healthy nervous system can go along way."

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