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A Painful Withdrawal

May 25, 2000 | 20/20 CONNIE CHUNG, ABCNEWS Good evening and welcome to 20/20 FRIDAY. We begin with a story you must not miss if you or people you care about are taking anti-depressants. There are growing indications that for some people getting off many of the most popular of these drugs can be a nightmare. While these drugs can be a lifesaver, the experts say many unsuspecting people may face some kind of withdrawal symptoms. Tonight, Dr. Nancy Snyderman introduces us to some patients who were feeling so good they thought it was time to give up their anti-depressants. They say they weren’t prepared for what would happen next.

DR NANCY SNYDERMAN, ABCNEWS (VO) Like many of us, 27-year-old Melissa Hall was taught to listen to her doctors, trust the medical advice that was supposed to keep her healthy. But she says all that changed when she was prescribed an SSRI, selective serotonin reuptake inhibitor, a widely used anti-depressant called Paxil.

MELISSA HALL One of the reasons my doctor suggested the Paxil was because he had said it didn’t have as many side effects when starting on it. So it was great for people that got panic attacks.

NANCY SNYDERMAN (VO) That was about a year ago, when Melissa says her overactive thyroid began to trigger the horrible panic attacks. The Paxil worked, stopping the attacks. But when it came time for Melissa to stop taking the Paxil, that’s when she says a new nightmare began.

MELISSA HALL Well, the first time I got off it, I got really sick. So I called my doctor and said, ‘Look, I’m getting dizzy, I’m having these symptoms. So she had suggested that it causes some withdrawal and to get back on it and to wean off of it for about a week.

NANCY SNYDERMAN (VO) She went back on the Paxil and tapered off over a period of a week, then stopped, just as instructed. But this time Melissa says her symptoms got even worse, with severe dizziness, nausea, and electric shock sensations in her head, leaving her virtually incapacitated. Melissa then contacted another of her doctors, who said to resume taking the Paxil, but to wean off of it even slower.
(OC) Over how long a period of time?

MELISSA HALL I did it over a month and a half.

NANCY SNYDERMAN (VO) But as the dose got smaller and smaller, Melissa says she became increasingly ill. She even called doctors out of the phone book. She said none of them had heard of her symptoms. Desperate, Melissa turned to the Internet.

MELISSA HALL I just got on the Internet and typed in Paxil withdrawal. And once I did that, I found just hundreds of sites of people having the same exact symptoms that I was having.

NANCY SNYDERMAN (VO) We, too, found hundreds of postings on the Internet, people begging for help, wondering what was wrong with them, many whose doctors didn’t believe Paxil could be the cause of their symptoms.
(OC) In fact, we spoke with over 50 people who say they also suffered from similar problems, including headaches, nausea, electric-shock sensations, and confusion. And most say they were never warned about the possibility of withdrawal. A major concern, experts say, because of Paxil’s gaining popularity. With over 21 million prescriptions written last year, it now rivals Prozac and Zoloft in becoming the top-selling anti-depressant in the United States. Melissa, Ted Anderson, Kelly Owen, and Shari Loback say they were all surprised and frightened by withdrawal symptoms they didn’t understand.

SHARI LOBACK I was so dizzy and sick. And sometimes I would get out of bed and I would just collapse because I couldn’t get up.

NANCY SNYDERMAN (VO) Shari was prescribed Paxil for chronic headaches by her neurologist, who she says never warned her about problems associated with getting off the drug.
(OC) AND When you punched up the key word on the Internet and saw that you weren’t alone, what did you think?

SHARI LOBACK Oh, my God. This is me and nobody ever knew it. Nobody ever suggested that it was the Paxil.

NANCY SNYDERMAN The severity of their symptoms made both Ted and Kelly question their sanity, which experts call a potentially dangerous state of mind for people who’ve been prescribed Paxil for depression.

KELLY OWEN (ph) It’s like your brain is attached to your eyeballs. And if your eyeballs look one way, your brain has to catch up. It’s like you can feel the fluid in you head that’s around your brain. I know that sounds crazy, but that is—that was the major issue with me. That increasingly got worse until I could not take it anymore.

TED ANDERSON I went through about three or four weeks of just the most agonizing flu-like symptoms. I had trouble with my vision. There wasn’t much I didn’t have trouble with.

NANCY SNYDERMAN (VO) The product insert for Paxil includes this mention of withdrawal syndrome, which it describes as rare. It also says there have been reports that “abrupt discontinuation may lead to symptoms such as dizziness, sensory disturbances, agitation or anxiety, nausea and sweating.” But critics say patients often aren’t given a clear enough picture of just how slowly they may have to wean themselves from the drug.

ROBERT HEDAYA Well, it’s a big problem. It’s a real problem. I think these patients’ complaints about withdrawal difficulties are real. There’s no question.

NANCY SNYDERMAN (VO) Psychopharmacologist Robert Hedaya, Georgetown University professor and author of “The Antidepressant Survival Program,” has become increasingly concerned about what he believes is the indiscriminant use of anti-depressants and the lack of sufficient information given to patients.

ROBERT HEDAYA I remember getting three emergency phone calls one Saturday a few years ago after another anti-depressant just came out—patients who were coming off of it pretty rapidly. And they started to complain, all three of them in one day, of electric shock sensations in their head. Not reported in the literature, not in the product information, but it’s real.

NANCY SNYDERMAN Experts say it’s not just Paxil. There have been reports of withdrawal symptoms with many of today’s most popular anti-depressants. Why? Well, one factor is something called the drugs half-life—how long the medicine stays in your body. Paxil has one of the shortest half-lives, which means once you stop taking the drug, or even miss a dose, it washes out of the body so quickly that it can cause a jolt to the nervous system. In contrast, Prozac remains in the system longer, and is therefore less likely to cause severe withdrawal symptoms.

ROBERT HEDAYA You’re not as likely to get the quick withdrawal symptoms, but you will get symptoms of withdrawal from virtually any anti-depressant.

DR DAVID WHEADON What we have seen in terms of the anecdotal reports is that it happens very rarely.

NANCY SNYDERMAN (VO) Dr. David Wheadon is vice president of regulatory affairs at SmithKline Beecham, the maker of Paxil. He says withdrawal, or as SmithKline Beecham prefers to call it, discontinuation syndrome, occurs in only 2 out of every 1,000 patients who are discontinued appropriately. Even then he says the symptoms are mild and short-lived. What do you mean by discontinued appropriately?

DAVID WHEADON Well, first of all, first and foremost, it’s important that patients not stop their medications without the consultation of their treating physician. Secondly, for some patients you can stop at the lowest dose with the consultation of the physician. There’s no adverse sequelae. For others, sometimes you have to go to a more slow decrease in terms of either the dose, if you’re at a higher doses of these drugs, or in some cases you can also do an alternate day dosing.

THOMAS MOORE Well, tapering off anti-depressant drugs, everyone should—I mean, that should be a rule for everyone who takes them.

NANCY SNYDERMAN (VO) Thomas Moore (ph), a health policy analyst at George Washington University, says while it’s true that everyone can eventually be weaned off Paxil and other anti-depressants, in some it can be a very difficult process, even excruciating. The problem, he says, is that no one knows why withdrawal affects some people more than others.

THOMAS MOORE Some of them seem to have more side effects, withdrawal effects than others. And in many people, they can be a passing problem. It can be, you know, episodes of flu-like symptoms, nausea, anxiety, inability to sleep. In other people, it can be a very severe problem that requires regular medical attention and can take months to resolve.

NANCY SNYDERMAN As the dose decreased, how did you feel?

SHARI LOBACK Worse. I was just getting progressively worse as I was taking less and less of it.

NANCY SNYDERMAN You say it happens in a few patients, but we see estimates of up to 50 percent of people having trouble coming off these medications. So a much higher figure.

DAVID WHEADON Well, I’ve not seen that figure, quite frankly.

NANCY SNYDERMAN But because there are so few studies, experts say it’s difficult to know how many people really suffer from withdrawal. And there may be another cause for concern. Some estimate that 70 percent of prescriptions for SSRIs are written not by psychiatrists, but by primary care doctors, in large part due to managed care and the difficulty in getting psychiatric services. And because of this, critics say that primary care doctors often misdiagnose patients, putting them through costly tests and giving them unnecessary medications.
That’s exactly what Shari Loback says happened to her. After missing a few doses of Paxil, she began to experience horrible stomach pains. She says she was diagnosed with an ulcer and prescribed Zantac. But when the Zantac didn’t help, her doctor then decided to taper her off the Paxil, she says never realizing that it was the missed doses of the anti-depressant that were causing Shari’s pain in the first place—a frightening experience for both Shari and her mother Diane Fischer (ph).

DIANE FISCHER She was depressed. She couldn’t get out of bed. Every day when I called her, it seemed like it was the day would be worse than the one before to the point where I was so concerned about her that I literally thought something was deathly wrong with here. I literally had to take her to the doctor myself and said, ‘Look, this is not my girl. Something’s going on.’ And still we couldn’t get any answers what was happening to her.

NANCY SNYDERMAN What do you say to the hundreds of people trying to network on the Internet with complaints that they can’t get off these medications? They’re having problems with withdrawal. And they’re seeking out help from each other.

DAVID WHEADON It is important that patients that are being treated for depression, panic disorder, other psychiatric illnesses, seek advice, seek counsel from the appropriate source. I think sometimes people get a bit confused about symptoms of the illness that may be coming back, as opposed to effects of discontinuing SSRIs.

NANCY SNYDERMAN But for many people, these are not symptoms they had before, whether it’s anxiety disorder or depression, these are symptoms they describe as being worse than the original problem.

DAVID WHEADON But as you know, with psychiatric illnesses, they’re recurring. And the fact that you may in your first episode have certain sets of symptoms does not guarantee that when that episode or when that illness recurs, you’ll have the same sort of symptoms.

NANCY SNYDERMAN (VO) But some say this attitude of blaming the depression for these side effects can lead to trouble. In fact, researchers at Massachusetts General Hospital in Boston found that “symptoms of discontinuation may be mistaken for physical illness or relapse into depression.” This can lead doctors to tell patients like Kelly they still need their anti-depressants. But Kelly believed her symptoms weren’t from the depression, and once again began to wean herself off the Paxil, this time even more slowly. But, again, she became so sick that she begged a friend to take her to the emergency room. She says the doctor diagnosed her as having an inner ear infection and told her that stopping the Paxil couldn’t make her so sick.

KELLY OWEN I told him, ‘I’ll make a deal with you. Give me one pill, or just give me one prescription. If I take the medicine and this feeling doesn’t go away, I will come back in and I will let you examine me.’ And he said all right.

NANCY SNYDERMAN (VO) Within hours after taking the Paxil, Kelly says she was totally back to normal.

1ST WOMAN I could eat. I could sleep. I could walk around. I could drive. I could do whatever I wanted.

NANCY SNYDERMAN (VO) Eventually, Melissa and Shari did succeed in getting off the Paxil and are not taking any anti-depressants. But Kelly, who had a relapse of her depression, and Ted, have taken an intermediate route, switching to other anti-depressants with the hope that one day they will be easier to quit.

2ND WOMAN I mean, depression is a horrible thing. I wouldn’t wish it on anyone. It is worse than any physical pain, I think, you can go through. It is absolutely horrible. But when you—you’re feeling better and you’re ready to get off of medicine and you can’t, that is a problem.

CONNIE CHUNG So, Nancy, should people worry about taking these drugs?

NANCY SNYDERMAN Connie, these medications have helped countless numbers of people including the people you met in this story. And many do not experience withdrawal.

CONNIE CHUNG So let’s go over this. If you want to get off anti-depressants, what should you do?

NANCY SNYDERMAN First of all, do not make a move without your doctor knowing. And find a doctor who has some experience with this problem. And then be prepared for the fact that it may take a while to wean yourself.

CONNIE CHUNG You know, I would think that the doctor who prescribed the medicine would know about withdrawal.

NANCY SNYDERMAN Well, you would hope so. But, unfortunately, a lot of doctors do not know about this problem. So if you’re not getting the care and guidance or your doctor doesn’t really seem to get a grip on your symptoms, get a second opinion. And remember, this is not just Paxil we’re talking about. Every anti-depressant on the market can have problems like these. So if you think this fits you, ask for help.

CONNIE CHUNG All right, thank you, Dr. Nancy Snyderman.

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