Listening to the Patient Voice: The Antidepressant Withdrawal Experience

Patient advocates join with researchers and service users to present first-hand experiences of antidepressant withdrawal.

Peter Simons
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1820

Although severe withdrawal symptoms have been documented for over 30 years, guidance for doctors has generally dismissed these claims and suggested that withdrawal symptoms are mild and limited to a week or two. However, after recent research documented severe, long-term withdrawal, the UK’s NICE and the Royal College of Psychiatrists have finally acknowledged that withdrawal symptoms can last for months—or even years.

Antidepressant withdrawal has become a more accepted fact now: 

“There is general consensus that withdrawal affects at least a third or a half of patients stopping antidepressants,” and that “in about half of cases of withdrawal the symptoms experienced will be severe, with severity also found to be related to the duration of use.”

Part of this acceptance is due to tireless work on the part of researchers and service users who have advocated for policy change in the past few years. A petition to the Scottish government in 2017 and the Welsh government in 2018 brought powerful stories of users’ experiences of withdrawal to the attention of the general public and policymakers.

Now, the leaders behind both petitions have joined with an academic researcher on antidepressant withdrawal to present their findings of service users’ experiences of withdrawal.

The Study

The study, published in Therapeutic Advances in Psychopharmacology, was authored by Anne Guy, Marion Brown, Stevie Lewis, and Mark Horowitz.

Anne Guy is a psychotherapist and coordinator for the secretariat for the All-Party Parliamentary Group for Prescribed Drug Dependence in the UK; Marion Brown is a retired psychotherapist and co-founder of the UK patient support group “Recovery and Renewal.” Stevie Lewis represents the Lived Experience of Prescribed Drug Dependence group.

Mark Horowitz is a psychiatrist and researcher who studies antidepressant withdrawal at University College London. Horowitz has previously been interviewed by Mad in America about his work.

Brown was the leader of the Scottish petition, and Lewis was the leader of the Welsh petition.

The authors sum up their study:

“We report here on a cohort of patients who were significantly affected by withdrawal from antidepressant (and other prescribed psychotropic) medication and found the response of the health system to their condition inadequate and distressing. This inadequate response led to misdiagnosis, investigations, and further treatment, and caused many respondents to lose faith in the health system and seek help in unregulated peer-led services.”

One element of the study assessed what options people were given upon their first encounter with a doctor to report distress. The researchers found that drugs were, by and large, the only treatment offered, with psychotherapy barely offered to anyone:

“A total of 97% of respondents were offered a prescription on their initial consultation with a doctor, 5% reported being offered talking therapy, and 0.6% were offered lifestyle advice (with some patients offered more than one option).”

According to the researchers, “0% [of the respondents] reported being warned” about side effects or the possibility of withdrawal.

One respondent described the typical experience in the following manner:

“GPs and psychiatrists have never warned me of the side effects [of venlafaxine] or difficulties I might face in withdrawal. They have all, however, been very keen to increase the dosage and discharge me.”

 How did the doctors respond to the patient’s reports of side effects?

“When patients reported side effects to their physician, the response of their doctor varied widely: 32% tried an alternative drug, 35% added another drug, 28% adjusted the dosage, and in 21% of cases the doctor dismissed the idea that the side effects were related to the prescribed drug.”
Withdrawal Experiences

The study included the withdrawal experiences of 158 people who signed one of the two petitions. The questions were very open-ended, so they could provide whatever information they wished about their withdrawal experiences. In fact, the Scottish petition did not include any questions, instead of allowing the petitioners to submit their experiences in whatever form they wished. The Welsh petition included four broad questions about the experience of withdrawal and the supports that they experienced—and how to improve it.

The researchers found the following common themes:

  • “A lack of information given to patients about the risk of antidepressant withdrawal
  • Doctors failing to recognize the symptoms of withdrawal.
  • Doctors being poorly informed about the best method of tapering prescribed medications.
  • Patients being diagnosed with a relapse of the underlying condition or medical illnesses other than withdrawal.
  • Patients seeking advice outside of mainstream healthcare, including from online forums;
  • Significant effects on functioning for those experiencing withdrawal.”

The core element tying most of the patient experiences together is a failure of information within the medical system. Doctors aren’t aware of the prevalence or the common symptoms of withdrawal; doctors don’t share information about the risks with their patients; doctors don’t know how to discontinue medications. This lack of information leads patients to seek medical knowledge elsewhere, such as online forums.

The researchers conclude that these experiences have some profound implications for medical care.

Most importantly, doctors and policymakers need to be better at listening to patients. Patients have been describing these withdrawal experiences for decades, but only in the past year or two have these experiences been incorporated into UK guidelines. American guidelines are still behind.

If doctors were better at listening to their patients, they would not dismiss these experiences or frame them as a relapse of previous symptoms. Common withdrawal experiences like flu-like symptoms, brain zaps, and involuntary muscle movement are obviously very different from the symptoms comprising “depression,” for example. There is no explanation for how doctors can frame these experiences as “relapses.”

The researchers write:

“In addition to the unnecessary costs to the health system, many patients highlighted in their accounts how invalidating and distressing it was not to be believed by their doctors while experiencing incapacitating and severe symptoms.”

The researchers suggest that guidelines need to incorporate this information so that doctors are more aware of the issues. Doctors also need to be trained on the newest research—informed by patient experiences—to slowly taper antidepressants for successful discontinuation.

Finally, the researchers suggest that non-pharmacological approaches to distress, such as psychotherapy, should be expanded so that patients are not needlessly exposed to the harms of antidepressant medications.

 

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Guy A, Brown M, Lewis S, & Horowitz M. (2020). The ‘patient voice’: Patients who experience antidepressant withdrawal symptoms are often dismissed or misdiagnosed with relapse or a new medical condition. Therapeutic Advances in Psychopharmacology, 10, 1-15. (Link)

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16 COMMENTS

  1. So the question then would be, what is the use of going to a doctor if they dismiss what you are telling them?
    It was denied for one reason. To avoid responsibility and basically being a doctor, a shrink or the drug companies absolves you from any wrongdoing. Simply say “nope, you are NOT suffering from the pills”. I mean there are no “tests” for “brain disorders” and so it’s a given that there are no tests to prove that the drug they gave you is giving you difficulties by altering your brain.

    In fact the denial by doctors that you are NOT suffering from the drug, proves that brain disorders, that they gave you the pills for, do not exist. Why would they suggest that you are correct with one suffering, but deny other suffering?

    So really, no point to go to a doc who will willingly make your life much worse. First by telling you that there is something wrong with your brain, with verbal tests, and then denying your suffering from drugs, again by verbal “tests”.

    What a complete mockery of science and medicine itself. Psychiatry made a joke of regular medicine which actually used to get respect.
    Real doctors should not dabble in stuff they know nothing about.

    • “Psychiatry made a joke of regular medicine which actually used to get respect. Real doctors should not dabble in stuff they know nothing about.” I agree, except the psychiatrists claim ignorance about the common adverse effects of their drugs too.

      Thanks, Peter, great article. Great point, by the way, “Common withdrawal experiences like flu-like symptoms, brain zaps, and involuntary muscle movement are obviously very different from the symptoms comprising ‘depression,’ for example. There is no explanation for how doctors can frame these experiences as ‘relapses.'”

  2. “….the doctor dismissed the idea that the side effects were related to the prescribed drug.”

    This sentence is dishonest. They are not “side effects”. No drug has “side effects”. Often they are now referred to as “adverse effects”. But even that word is not strong enough when it comes to these poisons.
    I wonder what it looks like when powers are equal in doctor/patient relationships? 🙂

    • Sam, what do you propose as an alternative to ‘adverse effects’? Preferably a word, phrase, or a couple phrases that encompass the undesirable or unwanted, from the minor to the major. ‘Harmful effects’, I rather like. What if the effect is simultaneously helpful and harmful? I know that often it’s the harmful effects that are even seen as desirable, completely tolerated.

      I recently heard a rephrasing of the Hippocrates Oath (although apparently this oath is misattributed): not ‘first do no harm’, but rather ‘do the potential benefits exceed the potential harm?’. Some replace ‘exceed’ with ‘outweigh’.

      I am well aware that for most psychiatry (and other healthcare systems), this second form is what is preferred, and so often rises to ignorant and abusive levels of what constitutes ‘benefit’, ‘exceeds’, & ‘harm’. Very often with me you’ll be speaking to the choir. But not always.

      I don’t remember the exact context, but I had a doctor suggest an interaction of ours would not need to be in his office, but rather getting a beer someplace. I thought that was good, a way to even the playing field. But it never had a chance to take place. I’ve never had one who offered to pay ME for something they learned from me, let alone a series of things. Often they’ve given the appearance that they can’t or shouldn’t learn from me. They would be bad biographers.

        • Steve,

          I found this Harvard Medical School article on this oath taking. Apparently some schools mandate the oath, others a different oath, and others none at all. It says the ‘first do no harm’ is not from the technical Hippocratic Oath, but from another of his works, Of the Epidemics. It also goes into how this plays into medical practice. I by no means accept all this article says, but it is interesting to see how this doctor explains and rationalizes it. It is short.

          “But it is a reminder that we need high-quality research to help us better understand the balance of risk and benefit for the tests and treatments we recommend. Ultimately, it is also a reminder that doctors should neither overestimate their capacity to heal, nor underestimate their capacity to cause harm.”

          He could learn a lot from Mad in America’s website, much of which needs no further research, scientifically, journalistically, or from lived experience.

          https://www.health.harvard.edu/blog/first-do-no-harm-201510138421

        • So ‘do no harm’ is in the oath, just not ‘first’. The sentence you quoted doesn’t seem to require a ‘first’, it is simply a fundamental. It is odd to me that ‘do no harm or injustice to them’ is added to the previous statement on dietary regimens, rather than standing on its own. Also that it disallows abortion and puts the surgical responsibility away from the physician, if that’s the word they used back then.

          The ‘modern oath’ that is linked on the page does not have anything explicit about doing no harm, although it gives a general sense of love, care, and respect.

          “I will apply, for the benefit of the sick, all measures [that] are required….”

          • Well I do know that the public expects miracles from doctors. We always have, for eons. That is what you get when you announce that you are a doctor. To keep us from suffering and dying.
            Our fears.
            It would be great if the client and doctor could have conversations about these issues and the doctors limitations instead of him writing shit on charts that really do not reflect what is going on.
            It’s the shit on charts that makes honest care impossible. It doesn’t help the doc or other med care either and ends up being frustrating for them and their disgruntled patients, where everyone ends up despising each other.
            Many a doc is just waiting for retirement because they are sick of the tests, the limits of them, the big pharma and how often their patients have bad effects from the drugs that the docs were hoping would help. So everyone just gets sad and pissed off, and just keeps doing what they got into. A Huge mess.

          • Sam,

            I would just like to add, and I know it may be off-putting, but I know a psychiatrist/author who has decided not to retire (as planned) due to people and him who think they need his ketamine prescribing practices, which most doctors would not use. At my next appointment, I’m going to ask my psychiatrist what I should do if I can’t see him. There are a couple or a few other people who would prescribe ketamine in town. My guess is most doctors will eventually use the FDA nasal spray rather than off-label cheap generic ketamine, but they’ll have to get the pens and writing pads with the Spravato name on them, the free seminars, and the drug reps’ smiles and samples first, perhaps. It would take time for the insurances to decide to cover a nasal spray that costs perhaps $1500 or more per month. My doctor doesn’t allow drug reps. He’s only very briefly hurt me, indirectly, twice. Terrible drug reaction (without an apology or much said at all), and a postponement of further action when extremely suicidal and uncomfortable (which ketamine helped greatly).

      • Evanaar, I fully support you in your journey and I consider your words at all times.
        A “patient” should always have the last word on what they feel is going on and if they feel harmed, then they were. We forget that we employ all of those who profess to serve. Right now, it seems they want their pay, but also abuse their employer.
        Their so called clients ARE their employer.
        The very first thing that is wrong with psychiatry is that it is an industry based on simplistic views of humanity, and laced with lies through the use of what they think was clever language and pretend science. That is and never has panned out so well, so all they have left is power, since the other stuff is so easily exposed…after all, intelligent folks abound and most often MUCH more clever than psychiatry.
        It has been through their power and lies that people DO get harmed and killed every day.
        And harmed by having people believe they are damaged goods. The alternative would be to have honest psychiatry, or honest doctors. And how would that look? Would there be the same “treatments”? No.
        But there you go. Regular docs could easily prescribe whatever the patient wants to try. We do NOT need psychiatry AT ALL. A regular doc has no time to write all the BS charts, and so would not make patients look like less than a human being.

        • Sam,

          I also always consider your words, and they often feed my hunger.

          I should clarify that my ‘getting a beer’ doctor reference was a family physician and not a psychiatrist.

          I’m not sure it is a positive thing that regular docs have no time in the sense you said. Psychiatrists often have even less time with people it seems to me. My ‘beer’ doctor never rushed me though, it’s just that he mainly did what the psychiatrists do with regard to mental health, and failed me, even though he was much more amenable and accommodating, except for his bad attitude toward nutrient supplements.

          But you didn’t give me an alternative to ‘adverse effects’. I understand you want to just call these psyche drugs ‘poisons’, but I guess I was wanting something else. It took me a long time to replace the common usage of ‘side-effects’ by sheer common momentum, so I changed to adverse effects, while always noting the ambiguity of all this. It was actually an MIA article, https://www.madinamerica.com/2019/10/there-is-no-such-thing-as-a-side-effect/, that pushed me further in that direction. I related to his experiences, including his use of both Zyprexa and Saphris.

  3. Great article! It would be something of a miracle if a psychiatrist actually believed a patient about withdrawal effects. I have felt that gradually (more gradually than what my psychiatrist wanted) reducing antipsychotics has been very helpful for me. But a 25 percent reduction of the maximum dose of ssri antidepressants months ago, after having taken them for 18 years, still leaves me with some pretty bad insomnia. When I told my psychiatrist about that withdrawal effect, he attributed it to things going on in my life. When I told the therapist about it just recently, I also told her that he didn’t agree. I called it a “difference of opinion.” I figured if I told her that I felt really strongly that I was right and he was wrong, she might have told him something really bad about me, and I could have ended up taking more drugs or being “hospitalized.”

  4. Your doc relationship sounds similar to the one I have/had with my doc, although after 24 years of being with her, we kind of fired each other but that was not just her “fault”. It is difficult to point at who was the biggest problem, and perhaps I was. Sure I’ll take the responsibility, why not.

    Averse effects are still the effects, but to me the word “averse”, could sound as if the patient has an “aversion” to the drugs, and I can guarantee that psych and medicine likes to take advantage of language and pin their own meanings to it.

    That was indeed a very well written article by Eric. Of course the value of the drugs are for psych and not their “patients”. If it really was about people, their clients, the outcomes would be better. No one should have to live in a fog for 10 years and be disabled to the point of not even being able to putting it down to the drugs. Honestly, they might as well put people in a coma, if to the industry, living means to simply have a beating heart.

    The “recommended” dosages, brands, durations, are all BS. Doctors could easily come up with care plans in collaboration with their clients. Would you like to try this in a smallest dose? How did that work for you, what was bothersome? What other supports might help?
    There are “bad” effects from drugs. And it really is what they should be telling patients. If a shrink is truly observant, seeing someone in a perpetual fog of drugs should not be seen as success. A responsible shrink would try everything to get a client to an “optimal” state, which would include not just his drug approach.

    What if a shrink suggested a reprieve in a “non hospital”, instead of drugs? why do we not have a lot more options, where we don’t get averse or bad effects?

    I have had little to do with psychdrugs or even psych, because I think my intuition about many things touted as medical, was my saving grace, BUT, I also had no alternatives. I never questioned the word “postpartum”, but even then, I could feel, sense that there was a lot going on and that it was a huge process. I can look back and know what I needed and the very LAST thing were pills or even “diagnosis”. The diagnosis had zero information and was worse than none.
    But even if I did share information of what “it” was, and how to actually “help” (with true help being mostly not to interfere, but to supply nothing but safety) the insight I gathered over the years would not be heard.

    In fact it was not until 2 days ago that I recognized something I experienced back 27 years ago as an effect of prozac that was given to me at the time.
    It took my reading something on MIA a few days ago to connect dots from 27 years ago and it was like WOW.

    There is no reason why the word “bad effects” cannot be used. But I can tell you that they would not use it, most likely claiming that using the word Bad, discourages people from taking it.

    And yes, drugs are poison. Chemo is poison. Homeopaths use poisons in small amounts. The most they could ever claim about the drugs is that they are chemicals which disturb the central nervous system. They cause “imbalances”, not that anyone can test for that lol.
    The “positive” effects should be noted only by the person ingesting the stuff

    • Sam,

      That is interesting that a 24 year relationship with your doc ended. But I guess that given 40-50% of marriages end in divorce, and people/circumstances change, perhaps it is not surprising.

      I didn’t think we were talking about ‘averse effects’. You and my previous reference was ‘adverse effects’. But I understand your ‘aversion’ comment.

      Given that what psychiatrists did with/for/without me for 16 years, I find that they never changed, always doing the same things. The fact that most of them thought they were good enough is more than disappointing. Were they even good, let alone good enough? One trouble is that although they have an ‘arsenal’ of endless things to try, they often do the same things, and ‘trial and error’ becomes a waste of time, energy, and money…and hope. A person in a perpetual fog is less questioning, less of a ‘bother’, and a way to kick the can down the road without ever changing, learning, or finding a new way.

      I agree that there should be more ‘non-hospitals’. I have found some are better designed than others. But the psychiatric drug use and ‘group therapy’ programs, etc. are still the same, regardless of the better design. Then they stick you with a bill of thousands of dollars. California did pay for my 2 week psyche hospital stay (voluntary turned involuntary) because I applied due to low-income. It’s not clear who profited the most, but it wasn’t me. Soteria House and the Finnish Model are alternatives, but hardly the norm.

      I found that even though I sought ‘help’, one of the primary responses was pushing ‘antipsychotics’, as if that was progress and sufficient. It’s very clear to me that psychiatrists have never taken antipsychotics or most of the drugs they’re so fond of and profit from. In medical school, they should take each class of drug as experiential education. 🙂 So should drug company CEO’s and drug reps. A cook tastes his/her food while cooking, and knows what it’s like to eat it. A week of antipsychotics, Haldol to Zyprexa, would be sufficient perhaps. And go ahead and try the higher doses….hell, take the injections. Most likely they would have to take the week off of their work, normal classes, and homework.

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