Anything to Stop the Pain – BPD and Non-BPDs

A story about stopping benzos from ABC News:

Tranquilizer Detox Withdrawal Can Last Years

FDA, Patients Say Quitting ‘Benzos’ Abruptly Can Lead to Horrific Side Effects

By LAUREN COX
ABC News Medical Unit

Dec. 1, 2008—

Americans take a lot of “benzos,” even if they don’t know exactly what “benzos” are.

In 2007, U.S. doctors wrote more than 82 million prescriptions for a type of tranquilizer called benzodiazepines, often called “benzos,” which includes Valium, Ativan, Xanax and Klonopin.

The positive effects of benzos are widely discussed in blogs, and in the media. But the much appreciated “mother’s little helper” drugs can have dangerous side effects that last for years. Some of the worst problems actually start once someone tries to stop taking them.

Negative symptoms began “probably the day after I stopped taking it [clonazepam] completely,” said Colin Moran, 41, co-founder of benzobuddies.org, an emotional support site with practical advice to help people safely stop taking benzodiazepines.

“I woke up and I thought I had a stroke,” he said. “My scalp, down the middle of my body — everywhere on the left was numb, and I could barely move on that side of the body.

“Even though I thought I had a stroke, I was in such a confused state that I didn’t even feel inclined to do anything about it,” said Moran.

Moran had taken clonazepam (a benzodiazepine often called Rivotril or Klonopin) for nearly two years before deciding to take a break. He even tried to “safely” taper off the dose over six weeks.

Finally, a friend forced him to call a neurologist, who informed him that he had not had a stroke but that he was experiencing withdrawal from the clonazepam.

The numbness was only the beginning. Moran later experienced nightmares, anxiety, night sweats and a bewildering mental fog.

Moran said he had never had such symptoms before he was prescribed clonazepam for a seizure problem, called brainstem myoclonus, which was characterized by spontaneous jerks in the body, trunk and limbs.

“Now I had to keep on this small dose, just so I could move,” he said.

Eventually Moran would join a minority of people who suffer from protracted withdrawal syndrome after stopping benzodiazepines.

“The two most dangerous drugs to detox off of are benzos and alcohol,” said Dr. Harris Stratyner, vice chairman of the National Council on Alcoholism and Drug Dependence.

“A lot of insurance companies want you in the hospital if you’re coming off of alcohol or benzos,” said Stratyner, who is also a clinical associate professor of psychiatry at the Mount Sinai School of Medicine in Manhattan, and vice president of the Caron Treatment Center in New York.

Withdrawal Can Strike At Random

Not only do benzos create a physical addiction, Stratyner said the drugs can alter how the brain processes neurotransmitters that calm a person down.

In fact, the U.S. Food and Drug Administration recommends short-term use of benzodiazepines for that very reason, warning that quitting benzodiazepines abruptly can result in more than 40 withdrawal side effects, including headache, anxiety, tension, depression, insomnia, confusion, dizziness, derealization and short-term memory loss.

However, for Moran, side effects of benzos extended to the time he was taking the drugs, as well.

Since clonazepam was the only drug available to treat his condition, Moran tried for years to take the drug, then to taper off for three months before he built up too much of a tolerance, and then to start again.

“I was a complete mess on benzos — confused, irrational and unemotional,” he said.

Two years after he started the new drugs, Moran decided to end his six-year romantic relationship.

“It just felt wrong. When I told her it was over, she told me that the medication had changed me,” said Moran. “I thought it was just a reaction to the breakup.”

But six weeks after his last dose, Moran said a he felt a flood of feelings he hadn’t felt in years.

“I think it was just normal emotions, but it had been years since I experienced them and so, I wasn’t used to coping with them,” he said.

Moran said he then realized his ex-girlfriend was right.

“I tried to repair the damage I had done to my personal life, but it was way too late,” he said.

To this day, Moran walks with a limp on his left side. He said he sees himself as an extreme case of common withdrawal symptoms.

Stratyner said 10 percent of people who quit abruptly may experience a “syndrome” of withdrawal symptoms that extend long after the drugs leave their bodies. This change can reverse, but for a small proportion of people, it can take months or years to recover.

“If you suddenly stop taking Klonopin (clonazepam) rapidly, you usually get cramping, you can have convulsions, you can have auditory hallucinations, nightmares,” said Stratytner. “It’s not unusual at all.”

But no one told that to Geraldine Burns, 53, the first time she decided to stop taking a benzo called Ativan (lorazepam).

“I never had a panic attack before I stopped taking Ativan,” said Burns, who remembers she was driving down a busy artery in Boston with her infant daughter and young son in the back seat when she suddenly felt like she couldn’t breathe.

“It was like you’re just coming out of your skin,” she said.

A psychiatrist prescribed Ativan for Burns at age 33, shortly after she gave birth to her daughter. She said she felt physically off at the time, like she weighed 1,000 pounds, but that her doctors thought it was a post-partum depression.

“I was handed Ativan in the hospital and told to go see a psychiatrist,” she said.

A year later, after receiving a prescription for Ativan, Burns said she still felt off.

“Then I read an article about how women could feel just how I felt, and it was an infection of the womb, and you don’t necessarily have to have a fever,” she said.

Burns said she called another doctor — an internist — about the article and he prescribed her antibiotics. Within five days of taking the antibiotics, Burns said she felt much better.

“So I stopped taking Ativan,” said Burns. “I didn’t know that you couldn’t just stop.”

The Danger of Going Cold Turkey

After the first panic attacks, Burns called her psychiatrist who, according to Burns, told her she shouldn’t have stopped the pills and that she needed to take Ativan “for the rest of my life.”

Burns continued to take Ativan and antidepressants for nine years; meanwhile, her anxiety and agoraphobia only increased. During that time, her body developed a tolerance for the drug, making coming off of it all the more risky.

Then, one day, at age 42, Burns went to a new gynecologist who informed her that benzodiazepines were extremely addictive. Burns decided to try and stop, then sue her psychiatrist.

“I was OK for about six months, and then I went into protracted withdrawal,” she said.

Burns experienced ringing in her ears, twitching on her face and hallucinations that bugs were crawling all over her scalp.

Ten years later, many of her symptoms have calmed down. But Burns decided she would spend her time helping others through benzosupport.org and Benzobookreview.com.

Cindy, who asked ABCNews.com not to use her last name, found help through Burns and her Web site last year. Like many people with benzo withdrawal symptoms, Cindy said the only sign that she wasn’t crazy were others on the Internet with similar symptoms.

“Three years ago, I was a very, very healthy 49-year-old,” said Cindy, of Rhode Island. “I never had a psychiatric history; I never was on any psychiatric drugs. Never on any drugs, really.”

Cindy’s gynecologist first prescribed her Valium after she hit a bout of insomnia with menopause. It worked, but eight months later, she began to feel depressed and have rashes. Cindy said her doctor told her she could quit taking the drug if she liked, so she did.

Three weeks later, Cindy said she couldn’t stand or walk without holding on to a wall, and she had inexplicable feelings of physical fear. Eventually, her two college-aged children found her unresponsive on the floor. They wrapped her up in a blanket and took her back to the gynecologist.

“I said, ‘I need to go to the hospital,’” said Cindy. “She told me to go home.”

Cindy said she has recovered slightly but is still so disoriented that she has trouble reading and writing. Eventually, she had to quit her job as a social worker.

“It took four months. I literally lost my mind,” she said.

Withdrawal Can Lead to ‘Derealization’

In addition to the fear, Cindy said she went through a “depersonalization,” where people and objects appeared unreal and untrustworthy to her, as if she was in a dream world.

“Nothing was right,” she said.

Now, Cindy said, she mistrusts doctors, and will absolutely refuse to take another drug again. Instead, she relies on emotional support from Burns while her body slowly recovers.

Burns and Moran admit their online support groups have stirred mild controversy with people’s doctors for the medical advice about tapering doses of drugs. However, they said all agree their sites can provide initial emotional support to people struggling with withdrawal.

“Don’t let the horror stories get to you,” said Burns. “We’ve got lots of people who get better.”

Alison Kellagher is one such person. She took benzodiazepines for 17 years, originally just to treat a couple of panic attacks she had in a new job.

“I went to a psychiatrist and he just immediately prescribed a Xanax, and it was to take every day,” said Kellagher. “It helped for a number of years, but as the dose got higher, the side effect of depression became stronger.”

Kellagher eventually decided to stop, and even went to a detox program to help her slowly taper off the drugs. Yet, the years had taken their toll and she experienced withdrawal.

“Then, I was in a profoundly alerted consciousness, immediately after stopping,” said Kellagher. “It was the feeling of being in terror, but it was just a physiological state of terror.”

Kellagher said she thinks she’s lucky because it only lasted several months.

“The first three months was 24-7. Then, it started to let up a little bit by three to six months. By a year, I was pretty comfortable,” she said. “I wasn’t 100 percent, but I was functioning and feeling almost normal.”

The experience motivated Kellagher, who worked in the bicycle clothing industry, to get a master’s degree for counseling. Now, she coaches people through protracted benzodiazepine withdrawal over the phone.

“People usually need some help keeping hope alive,” said Kellagher, who runs the site stoppingbenzos.com. “It’s hard not to get bogged down in depression, because it’s a long process.”