They Had No Idea What They’d Done to Me

“My life was very, very good.”

That’s how Michael sums up how things were for him—prior to his suffering from devastating withdrawal effects after discontinuing GlaxoSmithKline’s blockbuster drug Paxil.

Before that, Michael was an educated, successful professional, financially secure, living life to the fullest. He loved working out at the gym, played competitive sports at a high level, and sang in choirs. He also was meticulous about taking care of his health. He never smoked, drank alcohol, or took drugs of any kind.

Michael’s troubles began after he accepted a new position that required him to spend long hours working. He developed arm pain and so sought medical attention for it.

The doctor told him the pain was due to a chemical imbalance, and it was just a matter of finding the right drug for him. So he prescribed, in quick succession, amitriptyline, venlafaxine, nortriptyline, and clonazepam. None of these drugs helped, and he didn’t stay on any of them for more than a couple of weeks.

Three months after he stopped the drugs, Michael began experiencing inexplicable bouts of tearfulness and agitation. He says he never had any psychological problems before this. He went back to the doctor and said “There’s something wrong with me, but I don’t know what it is.” Michael’s doctor prescribed Paxil.

“I had no idea that [this drug] was the sister of Prozac,” Michael told me. “If I had known something like that I would have ran a mile.”

Michael asked the doctor, “Is it addictive?” “No,” the doctor assured him. “Any side effects?” “You might experience a slight weight gain.”

Michael started on Paxil, but the drug left him emotionally numb. After a year, he complained to his doctor, who said “Okay—just don’t take it anymore.” The doctor did not offer any tapering advice, nor any warning of possible withdrawal effects.

Michael stopped the drug, but three months later he was affected, once again, by bouts of tearfulness and agitation. He went back to his doctor and pleaded “There’s something wrong with me. I don’t know what it is. Maybe I need this drug.” So the doctor renewed his prescription.

“There was no clinical assessment, no discussion, nothing,” Michael recalls.

Michael stayed on Paxil for eight more years. He tried a couple of times to kick the drug, but every time he was plagued with withdrawal symptoms. Whenever he went on vacation, he always made sure to take Paxil in his carry-on bag, because even a couple of days without the drug could be debilitating.

Michael finally decided to kick the Paxil for good. He announced his intentions to his doctor, who again offered no advice on tapering off the drug safely. So Michael devised his own tapering plan. Over the course of eight months, he cut the dose down from twenty milligrams to ten to five.

The results were disastrous. For the first time in his life, Michael became suicidal. For hours every morning all he was able to do was to lie in bed in a fetal position, trembling, sweating profusely. He also suffered from vomiting, diarrhea, and uncontrollable crying. He went back to the doctor, pleading “I’m in a very dark place. I don’t understand it. Tell me what you know about this drug you’ve been giving me.” The doctor asserted Michael had depression. When he replied, “That’s nonsense!” he was then referred to a psychiatrist.

“I didn’t want to go,” Michael recalls. “It was very obvious to me that I was dealing with people that were very ignorant concerning the pills they were pushing. They had no idea what they’d done to me.” But he went anyway to the psychiatrist, who told him it was okay to quit the Paxil cold turkey.

Then things got worse.

Brain Sloshing

Are antidepressants addictive?

The official answer to that question is “No.” Both the National Institute for Health and Clinical Excellence (NICE) and the American Psychiatric Association (APA) are in agreement on that point. The 2009 NICE guidelines for management of depression in adults inform readers that “antidepressants are not associated with addiction” and urges prescribers to inform patients of “the fact that addiction does not occur with antidepressants.” The 152-page APA guidelines for the treatment of patients with major depressive disorder uses the word “addiction” only once: “Common misconceptions about antidepressants (e.g., they are addictive) should be clarified.”

Both the NICE guidelines and the APA guidelines did refer to something called “discontinuation syndrome,” which includes flu-like symptoms such as nausea, headache, light-headedness, chills, and body aches, as well as neurological symptoms such as paresthesia, insomnia, and electric shock-like phenomena (commonly known as “brain zaps”), but these were characterized as transient and self-limiting:

“Symptoms are usually mild and self-limiting over about 1 week…” (NICE 2009).

“These symptoms typically resolve without specific treatment over 1-2 weeks.” (APA 2010).

Is this correct? John Read, a professor of clinical psychology at the University of East London, along with his colleague James Davies, surveyed the literature in order to determine the prevalence of withdrawal symptoms among users who discontinued antidepressants.

And of course, withdrawal symptoms are defined as those which appeared only after the drug is discontinued. The reappearance of symptoms that were present before the drug was started is not considered withdrawal, but rather the resurgence of the underlying condition.

Drs. Read and Davies found that studies show anywhere from 27% to 86% of those who discontinued antidepressants experienced withdrawal symptoms, and nearly half of those experiencing such effects endorsed the most extreme withdrawal severity rating offered.

What about the claim that withdrawal symptoms typically resolved after one or two weeks? Drs. Read and Davies found 10 studies which contained data on the length of withdrawal symptoms. Seven of these found that a significant portion of patients experience withdrawal symptoms for longer than two weeks, and withdrawal periods lasting for several months or more are not uncommon. One study found the mean duration for SSRI withdrawal symptoms was more than 90 weeks.

Drs. Read and Davies filed a Freedom of Information Act request to determine the basis for the 2009 NICE statement on that withdrawal symptoms usually are mild and self-limiting over about one week. NICE replied that the 2009 statement was inherited from a 2004 version of the guidelines, which stated:

“[Withdrawal] symptoms are not uncommon after discontinuing an antidepressant and that they will pass in a few days.”

And what was the basis for this statement? It turns out this earlier statement was based on two pieces of research, neither of which, upon examination, provided any evidence for the one-week claim.

These symptoms may be far from benign. A study of antidepressant withdrawal symptoms reported on the internet forum “Surviving Antidepressants” found a dizzying variety of complaints, including neurological (dizziness, ringing in the ears, burning sensations, sensitivity to light), psychological (suicidality, anger, insomnia, obsessive thoughts, poor concentration and memory, depersonalization, paranoia, terrifying dreams), gastrointestinal (constipation, diarrhea, acid reflux), cardiovascular (palpitations, chest pain, racing heart, skipped beats, high blood pressure), musculoskeletal (muscle weakness, aches and pains), psychosexual/genitourinary (difficulty urinating, erectile dysfunction, “numb penis”), and “other” (recurring infections, bad skin, hives).

Some of these complaints are literally indescribable in standard medical terminology: “vision lagging behind eye movements,” “head like cotton balls stuffed in,” “brain sloshing.”

In September of 2018, the All-Party Parliamentary Group for Prescribed Drug Dependence released its survey of 319 antidepressant users. Among the most startling findings:

  • 64% of patients claimed not to have received any information from their prescribing doctors on the risks or side effects of antidepressants
  • 25% were given no advice at all on how to withdraw from antidepressants
  • 47% experienced withdrawal symptoms that lasted for more than one year
  • On a scale of 1 to 10, the average reported severity of withdrawal symptoms was nine
  • 30% reported being out of work indefinitely because of antidepressant withdrawal symptoms

But perhaps even more unsettling were the respondents’ personal accounts of what antidepressant withdrawal has done to their lives. A sampling:

“I am unable to work, communicate, or basically function on any level that makes life worth living.”

“I exist as a shadow of the person I once was.”

“I cannot function to do simple tasks like make a cup of tea let alone leave the house to go to work.”

Many respondents claimed that their doctors just denied the very nature of the problem:

“I was told that ‘discontinuation syndrome’ could only have lasted a few weeks so I didn’t know what I was talking about.”

Others were told they were experiencing a relapse:

“The psychiatrists simply waived my story out of hand as impossible, saying that ‘It was just the old illness coming back’ even though I’ve NEVER experienced ANYTHING even remotely approaching this.”

“I was told it was just the anxiety and depression coming back but I have never experienced anything even close.”

“[It was] written off as my ‘original condition’ returning, and proof that I needed the medication like a diabetic needs insulin.”

Despite being told otherwise, the respondents were adamant that their withdrawal symptoms were different from the original problems which led them to take the drugs in the first place:

“The withdrawal has been far worse than the depression ever was.”

“Depression and despair ten times worse than I ever experienced before commencing on the drug.”

“This is far worse than anything I ever experienced before I went on the drug.”

Many of the respondents reported the withdrawal effects went on for years after discontinuing the drugs:

“It has gotten a little easier with time but even after 5 years of being off venlafaxine I am still not right.”

“It is just over 3 years since I stopped and I don’t think I am really over it now… I think my brain and body have been permanently damaged…”

“Seven years on after the last dose of the drug, I am still not the same person I was before starting Seroxat.”

Some of them found themselves unable to kick the drugs, and gave up entirely:

“I can only withdraw for a limited time because the symptoms are too severe to tolerate. I have tried several times to come off unsuccessfully.”

“I don’t want to be on these drugs anymore as they have too many side effects and I don’t believe they better the quality of my life, but I can’t stop.”

So why do the authorities say that antidepressants are not addictive?

A Semantic Quibble

Let’s hit the rewind button and go back to 2002, when BBC’s Panorama aired the documentary “Secrets of Seroxat.” (Seroxat is one of the trade names for paroxetine, the same drug which in the United States is marketed by GlaxoSmithKline as Paxil.) Viewers learned the story of Helen Kelsall, a young woman who began taking Seroxat for anxiety and experienced terrible withdrawal symptoms when she tried to kick the drug. These symptoms included headaches, muscle pain, sweating, tremors, nausea, balance problems, and “head shocks.” She reported that because of these problems, she had missed much of her course work for the last year and was in danger of failing. Viewers were also told that the Maudsley Hospital Medication Helpline had received more reports of problems coming off Seroxat than for any other drug.

In presenter Shelley Jofre’s interview with Alistair Benbow, European Head of Clinical Psychiatry for GSK, the following dialogue took place:

SHELLEY JOFRE: Your leaflet says: “Remember, you cannot become addicted to Seroxat.” That’s not true, is it?

ALISTAIR BENBOW: Yes, it is true. There is no reliable evidence that Seroxat can cause addiction or dependence, and this has been borne out by a number of independent clinical experts, by regulatory authorities around the world, by the Royal College of Psychiatrists, and a number of other clinical groups.

Q: If people can’t stop taking a drug when they want to stop taking it they’re addicted, aren’t they?

A: No, that’s not correct. The definition of addiction is not as you describe it. Addiction is characterized by a number of different criteria which includes craving, which includes increasing the dosage of the drug to get the same effect, and a number of other features, and these are not affected by Seroxat.

Q: That’s not, with respect, what the Oxford English Dictionary says. It says “Addiction is having a compulsion to take a drug the stopping of which causes withdrawal effects.” Now we’ve spoken to plenty of people who say they’re compelled to take Seroxat because stopping it produces withdrawal symptoms—they’re addicted.

A: If you use that limited definition of addictive, then most prescription medicines could be defined as addictive.

The second episode in the series, “Emails from the Edge,” noted that the words “You cannot become addicted to Seroxat” were approved by the Medicines Control Agency of the UK. Yet, the MCA’s own rules stated that product information must be conveyed in a language patients can understand.

Shelley Jofre told viewers “What a difference six months and 1,400 emails can make”—a reference to the missives Panorama received regarding the program, many of which told of severe withdrawal effects after stopping Seroxat. Dr. Benbow appeared on this second episode as well, and told Jofre “It’s quite clear that the phrase ‘Seroxat is not addictive’ was poorly understood by them”—seemingly putting the blame on the patients whose lives were devastated by this drug, rather than on GSK.

Of course, one way of resolving this dispute would be to ask the antidepressant users themselves. Dr. Read and his colleagues did just that. They conducted an online survey of 1,829 antidepressant users in New Zealand, and the results were illuminating.

More than half of respondents reported they had experienced withdrawal effects after stopping antidepressants, and nearly half of those characterized those symptoms as “severe,” the most extreme rating category available. A quarter of the respondents considered themselves to be addicted to antidepressants, and 6.2% rated themselves as severely addicted (again, the most extreme rating category available).

So why is there even a controversy about this? The argument is all about semantics. The current edition of the Diagnostic and Statistical Manual, DSM-5, released in 2013, doesn’t even have a category for “addiction,” using instead the term “substance use disorder,” which is defined by the presence of at least two of a list of 11 symptoms. None of these symptoms—tolerance, craving, withdrawal, and so forth—is by itself either necessary or sufficient for a diagnosis. The authors also proclaim:

“Symptoms of tolerance and withdrawal occurring during appropriate medical treatment with prescribed medications (e.g., opioid analgesics, sedatives, stimulants) are specifically not counted when diagnosing a substance use disorder.”

In other words, the authors of the DSM-5 have defined this condition in such a way that antidepressants taken as prescribed by definition cannot be considered addictive.

But the DSM did not always define addiction that way. In the third edition, DSM-III, which was published in 1980 and which inaugurated the modern era of biological psychiatry, the corresponding category was called “substance dependence,” and a diagnosis of this condition could be made on the basis of withdrawal symptoms alone. In other words, the authors used the same common-sense definition of addiction as it is understood by lay people today.

But this changed when the revised version of DSM-III, DSM-III-R, was released. Now “substance dependence” was defined as a cluster of symptoms, as “substance use disorder” continues to be defined today. The revised version of DSM-III, with its revamped definition of “substance dependence,” was released in 1987.

That was the same year Prozac was approved for the market.

Extraordinarily Difficult

Almost exactly thirty years later, on 22 February 2018, the usually sober Times of London published an article about a meta-analysis of antidepressant trials by Andrea Cipriani and his colleagues, titled “More People Should Get Pills to Beat Depression”—even though the Cipriani paper contained no data about the hazards of these drugs, nor of the comparative effectiveness of nondrug therapies.

This prompted a letter to the editor published the following day, by James Davies and some of his professional colleagues from the Council for Evidence-Based Psychotherapy, which said in part:

“The study [by Cipriani et al.] actually supports what is already known, namely that the differences between placebo and antidepressants are so minor that they are clinically insignificant… Lastly, the study does not address the damage caused by long-term prescribing, including the financial burden to the NHS and the disabling withdrawal effects that these drugs cause in many patients, which often last for many years.”

The next day Wendy Burn, President of the Royal College of Psychiatrists, and David Baldwin, Chair of the RCPsych Psychopharmacology Committee, offered this riposte:

“We know that in the vast majority of patients, any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks of stopping treatment.”

Drs. Read and Davies, along with a number of professional colleagues, wrote to Drs. Burn and Baldwin regarding their statement that antidepressant withdrawal symptoms usually resolve within two weeks. They noted out that the RCPsych’s own survey of 800 antidepressant users found that 63% of them had experienced withdrawal effects, and that a quarter or more of these reported anxiety lasting for more than 12 weeks. More disturbingly, as the authors of the letter pointed out, the survey was removed from the RCPsych website less than 48 hours after the “two weeks” claim appeared in the Times. Read and Davies asked Burn and Baldwin either to provide studies backing up the “two weeks” claim, or else apologize and retract the statement.

Drs. Burn and Baldwin both replied to the letter, but neither one provided any evidence to back up the “two weeks” statement. Baldwin attached two papers to his reply, but neither one was relevant to the question at hand. Burn did not even do that much, and neither one of these eminent doctors said anything at all about the request for retraction.

Accordingly, on 9 March, Drs. Read and Davies and eight of their professional colleagues, along with a number of long-term sufferers of antidepressant withdrawal effects, filed a complaint with the Royal College of Psychiatrists demanding a retraction. The RCPsych dismissed the complaint, without providing any evidence for the “two weeks” claim other than the one-sentence statement from the 2009 NICE guidelines. Government ministers ordered Public Health England (PHE) to set up an expert panel to examine the subject of antidepressant withdrawal, with Dr. Baldwin serving as the representative of the RCPsych.

On 4 September, Read’s and Davies’ systematic review of antidepressant withdrawal effects appeared in the journal Addictive Behaviors, and three weeks after that, the Times reported that Dr. Baldwin had stepped down from the panel after an online controversy in which bloggers and anonymous commenters on internet threads had called him a “pharma-whore” and a “lying serial rapist worse than Hitler.” Dr. Read condemned the online abuse but added “We can’t control the anger of people by denial of what these drugs can do.” Rosanna O’Connor, Director of Drugs, Alcohol, Tobacco and Justice at PHE expressed regret for any distress Baldwin experienced, but promised the review would be published the following year as scheduled.

When I spoke with Dr. Read, he indicated that he actually preferred not to use the term “addiction” in regard to antidepressants, because of the stigma associated with the term, but he also made it clear that he did not consider the semantic argument to be the main issue:

“I think it’s a diversion. The issue that we have millions of people, literally millions of people who are trying to come off antidepressants and they can’t. Or they are finding it extraordinarily difficult.”

“And at the same time we have the American Psychiatric Association, the Royal College of Psychiatry, and our national guidelines here all lying about this problem, all saying pretty much the same thing – that withdrawal from antidepressants hardly ever lasts longer than one or two weeks, and it’s self-limiting.”

“When people tell their doctor that they’re experiencing withdrawal effects, the doctor will look up these guidelines and say ‘No, no, that’s not withdrawal – that’s your illness.’ So not only do they not get the recognition of the withdrawal, they don’t get support for the withdrawal, they’re likely to get their drugs actually increased, when they really need a very very slow, supported withdrawal.”

“And this is happening for millions of people around the world. That’s why it’s important. And that’s why whether we call it addiction, dependence, or whatever, the point is that people are having trouble getting off them. And that’s why they are reporting, in very large numbers when asked, severe protracted withdrawal effects.”

A Stunning About-Face

On 29 May 2019, in a stunning about-face, the RCPsych issued a press release stating that “Official guidance on coming off antidepressants needs to reflect the full range of patients’ experience…” The statement also noted that many patients experience severe withdrawal symptoms, which can last far longer than existing guidelines acknowledge. In addition, the college called for:

  • Routine monitoring of when and why patients are prescribed antidepressants
  • Adequate training for all clinicians for best prescribing and managing of antidepressants
  • Adequate support services for patients experiencing severe antidepressant withdrawal symptoms
  • Expansion of talking therapies
  • High-quality research into issues including which antidepressants are likely to work for which individual, and the benefits and harms of long-term antidepressant use

Dr. Read told the Herald:

“It seems the minimizing is finally over. [College] members who value research over personal opinions, and who place the public good before the interests of the pharmaceutical industry, have apparently prevailed.”

“This dramatic U-turn may represent a first step towards the RCP regaining the respect of scientists in this field, which will be accelerated by their removing drug company sponsored individuals from senior positions of responsibility.”

The promised review by PHE was released on 10 September of that year, and recommended:

  • Increased availability and use of data on the prescribing of medicines that can cause withdrawal
  • Enhancing clinical guidance and the likelihood it will be followed
  • Improving information for patients and carers on prescribed medicines
  • Improved support for patients experiencing withdrawal symptoms
  • Further research on the prevention and treatment of dependence and withdrawal

On 18 October 2019, the BMJ reported that NICE was updating its guidelines on treating depression to acknowledge that withdrawal effects may be severe and protracted in some patients, and to advise patients to discuss the matter with their health care providers before discontinuing the drugs.

The statements that antidepressants are not addictive remain unchanged.

On 25 September of this year, now-ex-president of the RCPsych Wendy Burn announced in an essay in the BMJ the creation of the Patient Information Resource on withdrawing from antidepressants, offering advice to patients on carefully managing the process of stopping these drugs.

Dr. Burn wrote about visiting a charity in Bristol which supports people withdrawing from psychiatric drugs, as well as meeting with the members of the group Drop the Disorder, an organization which challenges the culture of medical psychiatric diagnoses, and with “Altostrata,” the founder of the Surviving Antidepressants website.

“The college’s position in 2018 was not right,” Dr. Burn stated.

Her remarks seemed heartfelt, although it is not clear why she felt the need to mention her being “widely and upsettingly trolled on social media,” as if this sort of thing was even remotely comparable to the distress suffered by those trying to withdraw from antidepressants.

Meanwhile, on this side of the pond, it’s still business as usual. And while the changes proposed by the PHE most certainly are to be welcomed, it should be borne in mind that the PHE review was not precipitated by any new information on the subject of withdrawal – after all, patients had been telling their psychiatrists about these problems for years. The review was commissioned in response to a Twitter campaign—which may lead some to question whether psychiatry is capable of effecting meaningful reform of its own excesses.

So in answer to the question, “Are antidepressants addictive?” it just depends on what you mean by the word. It is undeniable that a significant fraction, perhaps a majority, of patients who discontinue these drugs experience distressing symptoms that they did not have before taking them, and which in some cases can be debilitating and/or chronic. This is the meaning of the word addiction, as understood by the world’s most trusted English dictionary as well as by many of the patients themselves.

Admittedly, the most severe withdrawal symptoms are experienced by only a minority of patients, but multiply this by tens of millions of people taking these drugs worldwide and you have a problem. Psychiatry’s response to this suffering experienced by actual human beings has been, in a large measure, a semantic quibble over the meaning of the word “addiction,” which may lead one to wonder whether they really have our best interests at heart.

Absolute Hell

And what about Michael, whom we met at the beginning of this article? After finally kicking the Paxil for good, the years that followed were, in his words, “Absolute Hell.” The suicidal feeling became worse. “I wanted to jump in front of buses, I wanted to jump off bridges, cut my wrists, hang myself.” Some morning all he could do was to lie in bed, chanting, “I’m not going to kill myself.”

“This went on and on and on for months and months and months,” he recalls. He had to quit his job and live off his savings.

Now eight years off the Paxil, Michael has begun to put the pieces of his life back together. He has resumed working, part time. But he knows he will never get back the years he has lost. Among the many effects of Paxil withdrawal was a complete loss of sexual functioning, and eight years later he doesn’t think that’s coming back, either.

“The urge to merge is gone,” he laments.

And what about the arm injury that triggered this iatrogenic cascade in the first place? It is still there, but it pales into insignificance in the light of the long lasting, life-altering trauma of psychoactive drug withdrawal.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.





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