I start this blog with an apology. There may be people reading who, like myself, look back with frustration and despair that they cannot change the years they spent dependent on antidepressant drugs or the approach they took when stopping. I recently passed my second anniversary of being off mirtazapine, a highly sedating, anti-histamine type drug. As for my progress in that time, all that I can say is that I still have a lot of healing to do. Some people commenting on my continuing difficulties point to how I tapered, particularly my use of tapering strips. However, I believe there is an important factor in difficult withdrawal that needs consideration, and that is exposure time. For those of us, again like me, who cannot turn back the clock, this can be painful to consider and for that reason, I apologise if this note upsets anyone affected.
I first became interested in antidepressant withdrawal in 2016. This wasn’t by choice, it was forced on me, like so many others, because I became aware that the person prescribing my drug had no idea how to stop it safely. They only really seemed interested in getting me on and increasing the dosage despite my protestations that I felt worse while taking it.
During my withdrawal, I became a willing member of a large group of people voluntarily providing support and encouragement to others navigating the complexities of getting off antidepressant drugs. While the vast majority of support group interaction is invaluable, I became aware of approaches that are potentially less helpful. Since running my discussion group, Let’s Talk Withdrawal, and being involved in many others, I have come to find that there are times when the individual nature of a person’s experience is ignored and they are all given similar advice. I have had people contact me privately to say that they were thrown out of other support groups because they didn’t want to rigorously stick to the “10% of the previous dose” tapering strategy that has achieved almost mythological status in lay communities. Ten percent of the previous dose is a good starting point to reduce symptoms but it isn’t right for everyone. The biggest problem with it is that it leads to very long tapers which increase the person’s exposure time to the agent that might well be causing their difficulties. There is a prevailing view that how you withdraw sets your future circumstances. That may be part of the equation but it is not the be-all and end-all.
It is important to say that long-established withdrawal advice sites, including the Inner Compass Initiative and Surviving Antidepressants, do not advocate a fixed approach or a fixed reduction schedule. The advocates and supporters who advise at these sites know the complexities caused by polypharmacy and the need to tailor an approach to each individual. Sadly, the same cannot be said for all withdrawal advice given in online forums. Much of it comes from a good place but some advice is too restrictive and not given in full consideration of a person’s unique circumstances. The 10% per month of the previous dose is a suggestion, not a target. It won’t work for everyone, it will be too slow for some and too fast for others. We need to distinguish ourselves from naïve prescribers by being open to all methods of withdrawal and all speeds.
As an example, for someone coming off a 20mg dose of citalopram (Celexa), a “10% of the previous dose per month” strategy will require them to take 29 months, over two years, to reach a 1-milligram jumping-off point. For someone who has been treated for decades, this seems sensible; for someone treated with the drug for a year or two years, the tapering might well double exposure time. People might argue that this additional exposure time is at a lower dose. This is true but, as we have seen from recent work on serotonin occupancy by Dr Mark Horowitz, many SSRI-type drugs retain much of their potency at low dosage levels. For example, looking again at citalopram, this drug will retain more than 40% of its effect at 5mg. On a 10% per month schedule, this point will not be reached until 16 months into the taper.
It is difficult to say this without fearing that it may make some feel hopeless but a gradual withdrawal is not a magic bullet in avoiding problems during tapering or protracted problems afterwards. We do not know nearly enough about the many complexities in the withdrawal experience to know what is the right approach. However, by insisting that everyone follows a similar path, we might inadvertently be prolonging the suffering. Although it sounds glib, the right withdrawal rate is one that you find tolerable and one that doesn’t require major life adjustments to cope with. That is going to be different for different people and may also vary during the taper. Many will be willing to tolerate a more uncomfortable withdrawal period if they can limit their overall exposure time.
It is very difficult to think of a way that this could be empirically studied as it would be unethical to potentially cause suffering by forcing people to comply with different reduction rates that didn’t meet their needs. The lack of a randomized, placebo-controlled study has been seized on by some psychiatrists as a reason to reject the need for gradual tapering approaches but it is hard to see how this can be studied other than with a large naturalistic, qualitative study that does not impose tapering strategies.
I’ve known people who have been forced to take five years to come off a drug and thoughts of the speed of their taper and whether they have got it wrong occupies every given moment. Maybe that person would be better off reducing more quickly and getting to a stable position faster. I took 2.5 years to come off and, against the conventional wisdom, I speeded up as I got to the smaller dosages. Was that the right thing to do? Who knows? I will certainly never know because I can’t repeat the experiment a different way. Though I can’t prove it, I don’t believe that my continuing problems are a result of either the way I tapered or the time I took. I believe it is a direct consequence of spending seven years and eight months, including tapering, on a dependence-forming drug.
At the time of my withdrawal, I was lucky to have the support of a helpful and much-respected psychotherapist. He tried very hard to motivate me to go quicker but my confidence failed me. The reason it failed was that I had been influenced to accept that the slower you go, the better you will feel and the less chance there is of long-term difficulties. Looking back now, my adviser was completely right. I suspect now that I could have come off in a year or less and been exactly where I am now but with 18 months less exposure time.
Going through withdrawal yourself only qualifies you in your own experience, it doesn’t tell you a great deal about other experiences. If you find yourself in a support group that forces you to engage only in a certain way, then find another, more open, more welcoming group. There is tremendous work going on in the lay community and I stress that these rigid approaches are the exception rather than the rule but we need to best support the person withdrawing by delivering their needs, not our preferences.
Another issue that those participating in support or discussion groups will often see is people arriving on the maximum dose of an antidepressant, having sometimes been labelled “treatment-resistant” because they didn’t respond any better as the dosage got higher. When a group of psychiatric researchers studied what they called ‘optimal’ antidepressant doses, they found that in the seven drugs they selected (citalopram, escitalopram, fluoxetine, paroxetine, sertraline, venlafaxine and mirtazapine) “the lower range of the licensed dose achieves the optimal balance between efficacy, tolerability, and acceptability in the acute treatment of major depression.” Put simply, the long-standing recommendation by the American Psychiatric Association to “titrate up to the maximum tolerated dose” has been called into question by psychiatry’s research.
As Peter Groot, developer of tapering strips, often reminds us, our approach to dosage when prescribing antidepressants is so limited as to be almost laughable. The standard dosages available for people are the equivalent of going to a shoe shop and being told “you can have any shoe you like but we only have them in size 5 or size 12”. Told this, we would rightly laugh at the limited choice and go elsewhere. Unfortunately, where antidepressants are concerned, there is nowhere else we can go. A 120-kilogram man will end up on the same dosage as a 60-kilogram woman with little to no account taken of their physiology. There may well be some prescribers who do take account of physiology in their prescribing but they are the exception rather than the norm. An athlete will end up on the same dosage as someone inactive, a pensioner will end up on the same dosage as someone in their twenties. Far from “precision medicine”, these standard dosages have been arrived at by looking at group averages in short-term trials. You might be lucky and fit neatly into one of these “dosage boxes”, but you are just as likely to be taking more than you need for a response.
Many of you will have pets and will have taken them to the vet where you might get a prescription. Often you will find that the dosage is in milligrams per kilogram of body weight. Can we do that for our pets but not for us? The need for variable dosages and variable tapering strategies has never been more important. The number of prescriptions for antidepressants is rising fast; more people each day are being put onto drugs that they might have difficulty getting off.
We are compounding the problems people have in tapering both by prescribing for too long without review and rapidly increasing dosages to the maximum suggested level seemingly based on guesswork. Then when the person finally realizes the limitations of the advice that they have been given, they are often side-lined by their prescriber or labelled “treatment-resistant” and left to fend for themselves.
Thanks to the efforts of many professionals, activists, advocates and those who have experience, we are starting to make progress in responding to the challenge of getting off antidepressants. However, to make sure we help the many, we need a nuanced, flexible and open approach to helping people off the drugs. For some people, coming off in two years might turn out to be as problematic as getting off in two weeks. We are all learning as we go, but in contrast to mainstream psychiatry, we need to avoid a fixed view of the methods and timescales that people might choose to put their antidepressants behind them.
James, I feel connected to your article. Serendiptously, I had an image of taking a cat to a vet the other day in the same “would we make a cat swill a cup of psyche meds each day?” musing. I would say “great minds” but mine is not great. If it were a cat I would get it put down or drowned in a sump or weir.
I want to share my pill popping experiences but what has made me apprehensive is the way my experiences with the pharmacy get concluded to be the origin of my hallucinations and delusions and paranoia. There can come a suggestion, kindly intended, that the drugs were there harbingers of all my ills. This can put me off talking about pill withdrawal experiences that might be useful to someone on a similar path.
There seems to be distinct subcategories of withdrawers or withdrawees. There are people who feel butchered by such “bad treatment” as meds often seem to be for many if not most people. They feel damaged by the chemicals. They feel that damage has cause all sorts of bodily dilapidations, including brain injury. They feel they were not ill before such meds.
Another subcategory feel they were ill before ever going on meds but that the meds did the same to them as the first group. That category now feels they not only have the initial illness but also the potential damage from their meds.
This affects what comes out of the loudspeaker. The first group want people to acknowledge that they were never ill before they got damaged with poison.
The second group want people to acknowledge that their good treatment has still not arrived and they now also have to contend with the same debilitating effects as have occurred in the first group.
The first group are generally not wanting any good treatment. When I say good treatment I do not necessarily mean psychiatry as such, I mean all kinds of other stuff. I mean people caring treatment. I do not think anyone who has endured the difficulty of quitting meds ever wants to go through having meds again.
But the second group who have their initial illness still looming large, plus now iatrogenic mess, probably do want “something better than nothing”.
But the first group gets jittery on hearing the second group saying that it does not feel realistic to say the initial illness never happened. Clearly that illness is still here and was not caused by the meds damage.
Why it might be of some significance is that it may be helpful to tease apart what are iatrogenic injuries and the quite different, if indeed a difference is there, of mind illness or brain illness or soul illness or trauma illness or consciousness illness or political illness.
If people are hushed from sharing their experiences of their initial illness, and ongoing illness, because their doing so may make the first group’s experience that everything “ill” only came from meds, then we lose defining what is different about iatrogenic illness, which may be ten times worse than an initial illness, or may not be. Actually I am being mischeivous. There should be no “worse than” contest when it comes to any struggle or illness or damage. I agree with you James, there should be a more individual experience respect.
Someone’s iatrogenic illness is horrendous. Someone’s initial illness is horrendous.
Aĺl of us are hurt people.
All voices need heard.
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Hi Daiphanous, thank you so much for taking the time to read and comment. I agree that all voices need to be heard and that the more we listen and learn, the less we tell or assume, then the better for all and the more we can honour individual stories and experiences. Thank you for sharing.
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The Person can figure out a fast or slow taper themselves on the basis of their own experience – but to be careful while their doing it.
My target (when I was withdrawing from Neuroleptics) was to stay out of hospital. I came off the intrusive doses straight away and then went very carefully with the lower doses. I could function with the lower doses (but had been disabled by the ‘maintenance’ doses).
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Dr. Mark Horowitz and Friends, have provided a fantastic service to Humanity with their Genuinely Scientific Research into the Drug Withdrawal Process.
Psychiatric drugs had been around for many many years with “Nobody” knowing how they behaved.
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I like Horowitz. I like your comment. Horowitz is a diamond of a truth seeker. I think that given so many people are champing at the bit to come off their drugs, some quite literally “champing”, if their jaw muscles lock rigid from toxicity, then Horowitz should be on a giant billboard as one of many pioneers to turn to for help.
However, what this Genuine Scientific Research has come about through is previous Genuine Scientific Research.
Most scientific gizmoes, pumps, switches, elixirs, potions, and so forth have been warmly received because they repair the damaging methods of the previous Genuine Scientific Research that was warmly applauded before, the wonder drugs et al that left a trail of disability aids in their wake. The emblematic designaton of Genuine Science, or Real Science, or The Best Science, conjures a hero or heroine who only becomes so by defeating bad science or what was scurrilously bogus imposter science, that villain….Boo Hiss!
A people with a belly full of betrayal from villainous science have a need for a new sense of salvation in rectified science. A bit like how an old deity who did not stop crop failure after being feted with certainty, gets rolled in the mud and a new deity gets propped on a plinth. This overlooks that it might be because trust in certainty itself is what is needing rescued and no so much individuals throwing petals at newly installed deity. Deities come and deities go. But without certainty the human is apt to suppose themselves to have nose dived into madness or chaos or hell.
So there comes a push to display more certainty than any human really can lay claim to. Humans are out of practice at going with the flow of…
“just not knowing”.
Ambiguity is a beautiful thing. A nature respecting thing. Nature often leaves humans scratching their heavy neanderthalish brows in quizzical bewilderment because nature is….s l o w.
Certainty is not slow. It is made to be a sudden eureka rescue from intolerable human doubt.
But in much of society’s desperation for answers to the human condition there is a pressure to make science’s rescue faster and faster. This is because humans are also out of practice at allowing their brokenness to linger for even a day. Everyone must be “fixed” or their brokenness is “a disaster”. A horrible thought that makes having a breakdown colossal.
People still want to put their trust in Science. As if it is a consoling faith. But science proper is only ever as fool proof as the fools who cook up the latest research, and most of those fools forget one essential prerequisite for doing unglamorous plodding science. It is that as the holder of science intruments is human, and because a human is limited in how their busy brain can do analysis uncontaminated by human impulse, they can never entirely rest on their laurels of certainty. As soon as humans stop recognizing that all humans are…
“fools as to what they do not know they do not know”
then human certainty becomes just a religious conviction. That is not to say dispaging things about fools or blind certainty or religion. All of these things are perfectly valid and even fantastic ways of life. Being a fool is probably the best move a human can ever make. Enjoying the bluff of certainty elevates the human mood. And their moments of religiosity thrill them. So why stop all that? It is all positive. It is all delightful in a theatrical vital lively way.
But too many Great Scientists, as have historically peopled psychiatry, believe they are only doing science.
And too many of them think science is Great when it cleans up the catastophic mess made by former science.
This delays people from wondering if they need that much science at all in their lives.
But if certainty’s rescue is not to be gleaned in the laboritory bubbles and smoke of science, then where else might certainty come from…
try your own heart.
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Hi Fiachra, thank you, I agree, Mark, Alto Strata, Laura Delano and so many others have achieved so much in a short space of time. The withdrawal deniers are looking increasingly out of step with the reality of peoples experiences of coming off. I hope that we have reached a tipping point.
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James,
Thank you so much for this very well informed, engrossing and thoroughly reasonable article. I am tapering Mirtazapine currently and am going slower than a snail. Previously I tapered Cymbalta over an eight month period using expensive supplements from an online outreach programme (not one of the Facebook groups). Two weeks after the full taper were when the real problems set in – suicidality, insomnia, severe akathisia. It’s been a wild and horrible ride.
The withdrawal was interpreted as relapse and I ended up back in the psychiatric system, was given two further DSM labels and two further drugs – one Lamotrogine which thankfully caused a rash so I had to discontinue it, and two, Seroquel which I was on for six months. It caused severe digestive issues and latterly a bowel impaction. I tapered off that fairly quickly and am off that for twelve months.
I was completely unprepared for the protracted withdrawal I would suffer after tapering the Cymbalta relatively carefully at 10% of the previous dose every month using a weighing scale. I had a very nice coach from the outreach programme who helped me with withdrawal issues. I thought the relatively slow taper would protect me from that – it did not.
I only felt ready to taper Mirtazapine two and half years after the Cymbalta because the effects remained well after the taper and to be honest are still there today though somewhat reduced. I have decided to taper the Mirtazapine mainly because I am having issues related to histamine – moderate to severe eczema, allergies and migraines which I never suffered from before taking this drug. I have been on Mirt now for over seven years.
Stuart Shipko the de-prescribing psychiatrist said in one of the Inner Compass interviews that in his experience the length of the taper did not affect the severity of withdrawal and that it was not possible to withdraw some people at all as their symptoms were so severe – I found that deeply disquieting.
The point you make about one size fits all in anti depressant prescribing makes complete sense in the way that conventional psychiatry never really does.
I am glad this article is written because it needed to be. It is a sad observation but on many of the support sites including Surviving Anti Depressants there are relatively few success stories when they are balanced against the number of members who struggle even with a slow taper and suffer long after the taper is complete. I say this not with any clinical evidence but from observation by membership of a number of these sites. I regularly trawl them for information and encouragement. Sometimes I do not feel very encouraged after following the withdrawal trajectory of many of the members. Perhaps of course it is the case that people who successfully taper and do not have symptoms simply do not post as they have no need of support. That can only be resolved by a randomised controlled study that as you write cannot really be conducted on humanitarian grounds.
I suppose ultimately the bottom line is go as fast as you can tolerate and no more and be prepared for the fact that you may be one of the unfortunates who is unable to successfully taper or that you may have permanent impairments.
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Dear maedhbh, thank you so so much for taking the time to comment. I am so sorry to hear that you’ve had struggles getting off, as you know, tapering can help but it can be hit and miss. I do believe that there is a rate/approach that will help but it takes some experimentation to find it and that’s a lot to ask of anyone already having so much to deal with. You put is so well ‘go as fast as you can tolerate and no more but be prepared’. I think you also identify why there are so few success stories, people tend to move on with their lives but if they only knew how valuable it is for them to share their success. I do hope that you find an approach for the mirtazapine that works for you. I am very glad to have put it behind me, even though I’m still having issues, finding acceptance has helped me, but it’s not right for everyone of course. Wishing you well on your journey, take care and thanks again.
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Great post. Shipko is brilliant– I loved that little handbook he published, it really helped me when I was first starting my practice. I should have followed him more closely… a lot of his work on serotonin and the gut seemed like total crackpottery when I was in grad school, but now? Yeah, not so much, particularly since I’ve had an opportunity to observe the comorbidity between IBS and severe depressive symptoms first hand in several patients.
I hadn’t seen any articles he’d written recently, so good to know he’s still doing the work!
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I feel like you made a few good points here, but I also feel like you are throwing some groups under the bus. There are many groups that have “rules” which members agree to before joining the group. Sometimes this involves making sure they will not cold turkey or promote 50% drops, as we know those are very risky. There are other groups that will remove members for not following those rules that were agreed to.
Many groups start with the 10% rule as a baseline or a test drop and then reasses and go from there. There has only been one set of groups that I’ve seen be extremely rigid in their protocols. Have you been in these groups or asked their policies before commenting here that they are unwelcoming? Are you sure they are being rigid? How do you know that these groups are not working with the individual and not individual leaders preferences? Are you taking disgruntled members who have been removed from a groups word over the actual group leadership? Because I would have to think that the administration may have a different story. We need both sides here to know the truth.
Shouldn’t the entire community be working together and not tearing each other apart? Or throwing them under the bus because they may have a slightly different philosophy of how a group is run?
Length of time on the medication is only one variable in the equation. You have diet, genetics, metabolism, environment, tapering schedule, coping skills as well as other variables that all play into this. I definitely feel like some of the wd groups could take offense to this.
Some may also find that promoting of tapering strips is too restrictive. Or that it hasn’t been independently researched like we beg of all of things other pharmaceuticals. For years the wd community has begged for more research or for doctors to listen to the third party research. When the same people review it there is no balance to what is being stated. When will a third party review or study the tapering strips?
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Some really great points with a key takeaway that there is no shortage of ambiguity when it comes to withdrawal. Thank you so much for this blog.
Regarding the forums in question. Hope this suggestion below is received with the sincere respect and spirit intended.
Wondering since these forums in question are likely part of the withdrawal community (aka partners in advocacy), would It have been a better first line choice to openly meet with them to understand the issue nuances at hand along with it’s leadership & processes of the forum in question before blogging on MIA about a perceived problem with a group (rigidity & unwelcoming)?
In the interest of fairness, I think initiating some kind of “collaboration model” would do wonders for fostering a more cohesive withdrawal community as a whole rather than blogging “you may need schooling” based on what looks like may be only half the story. I am sure they would very much welcome and appreciate the olive branch and a chance for an open conversation and to collaborate. And, both you and them may learn something new.
Thank you for listening.
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What an important article! You bring up excellent points, James. I stopped cold turkey after a few months on psych drugs and suffered a lot. How much of that suffering was from the quick stopping vs. the drugs’ effects from the start is hard to say. I did notice extreme sweating, neuropathy in my feet and digestive issues right after stopping cold-turkey, but my worst side effect – akathisia – began basically as soon as I started taking the drugs, and I wonder if it might’ve continued longer than the year and a half I had it, if I’d been slowly tapering over an extended period of time. From what I’ve learned from reading and watching videos since my experience, I’ve been assuming that extremely slow tapering is the way to go for everyone and would’ve been much better for me. But it’s good to keep an open mind regarding this. The extended time on the drugs could cause some people continued and greater harm and suffering. It really is so individual, and flexibility in the tapering process is important. Thank you for your thought-provoking piece!
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I could not agree more, tapering should be taylor made, that is why I am not so much in favor of tapering strips. I also think people should be made aware that basically any other therapy then medication has a similar effect. Then why prescribe meds at all? I can imagine that people can be so overwhelmed by emotions like fear, anxiety, despair, depression, paranoia etc. that some sedation is for their benefit. But only under strict conditions: for a very short period, days to weeks, after pharmacogenetic testing (CYP450 and certain transporter and receptor genes) and with a keen eye for drug-drug interactions. If a health care provider is not able to meet those standards, then people should look for somebody who can.
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That’s definitely a terrifying but possible outcome for me as well. I am tapering citalopram. I have about a year left using the tapering speed I choose for myself. A lot slower then the doctors taper since it would end up being around 1.5 years but also alot faster then the 10% method.
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And I seriously regret this now. I should have gone slower. I am not off yet but got some severe withdrawals. I am waiting them out and going to take what remains over a year or 2. Putting my total time closer to 3 years.
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Defining terms could enable better discussion. What is “slow” is a common question. Slow, the word, denotes time as in a year. Rate is a ratio of how much over how long or here, dosage unit over unit of time. Rate would tell us more about the taper than simply that it required X number of months or years.
Also there seems to be an assumption that any taper process demands following a specific schedule that already exists either in medicine or at helping-websites. In other words, we are required to pick an existing method or time limit. Why would that be?
I just looked again at the Peter Breggin book, Your Drug May Be Your Problem. He cites the assumed 10% rule. The problem: no scientific basis for the rule is offered. The people who back it are listed as proof of the rule’s validity. I admire Breggin, but I must question that assumption. To say that a thing is true because someone who ought to know says it is true is neither science nor logical. It is a logical fallacy, an ad hominem argument.
“Slow” is an essential word in withdrawal, but slow may mean taking a long time without naming the size or number of dosage reductions. “Slow”, alone, doesn’t tell us more than how long the taper lasted.
Isn’t it missing the mark to adhere to a schedule rather than empirically determining your own optimal rate as in milligrams reduced over a specific time? Will a body’s physiology agree with speed, rate, or schedule, as imposed, or should the rate be determined by the individual body? That later approach is actually available, but not through the usual internet sites.
This is only one of the many essential issues that are presented in the article. The responses as well as the article, itself, are reassuringly thought-provoking. Questioning is good.
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Hello James,
I’m really confused now, survingantidepressants is advocating a 10% hyperbolic taper you are saying that it isn’t necessary.
So what should I do???
My previous attempt to quit effexor failed because of protracted severe anxiety and depression, I had almost no physiological symptoms when jumping from 37,5mg to 0 only the extreme anxiety. Had I known SA and this side I would have pushed through that with ease and would be drug free since almost 2 years…
Greetings
Kosta
Greetings
Kosta
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Hi Kostakonkordia, thanks for reading. I hope I am not saying that a 10% taper isn’t necessary, I am saying it’s not best to assume that’s the right approach for everyone coming off. Surviving Antidepressants is a very reliable and experienced place and you can rely on their guidance. One of the factors that does make withdrawal more challenging is prior failed attempts (I had two before I finally made it off mirtazapine). If someone has failed previously, that likely means a very slow and steady approach is needed to ensure success. I hope you find a rate that works for you.
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Fantastic article that speaks to the ugly truth: The current ‘gold standards’ for both measuring side effects of neuroleptic medication and determining the best tapering speeds often fail dismally.
I’m lucky– about 10 days of paroxetine, stopped cold turkey, severe sexual side effects for SIX YEARS (arousal disorder — I could function, but 60% of the joy of actual intimacy was completely absent) and then complete remission from side effects in a single day– one very intense, cathartic session of group therapy.
I need to log back on to SA, because I often forget how unusual my experience was, and that it might be helpful to others. My feeling has always been that if a single terrible experience can bring lasting trauma with neurobiological adverse consequences, as in PTSD, a single positive experience (usually a relational one) can sometimes bring lasting relief with adaptive neurobiological consequences.
But I have a hard time believing that given my short exposure time, a longer taper would have made my experience any easier for me. And I wonder if there might be some yet-to-be-discovered intervention– something like EMDR– that might provide faster and more thorough relief for some patients.
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The threshold for neurobiological adaptation to a psychiatric psychotropic is estimated to be about a month. Few would advise slow tapering for exposures shorter than a month. Usually abruptly quitting will be fine, but if this makes people nervous, stepping off by the customary half, half again, and then zero over a week or two makes sense.
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It is an unfortunate fact that to avoid debilitating withdrawal symptoms, many people may need to taper psychiatric drugs for longer than the period they were on the drugs, and a minority may find that any amount of dosage reduction, however small, is torturous.
On the other hand, going off faster may result in having to cope with equally debilitating post-discontinuation symptoms for as long or longer that you would have spent tapering.
It is also true that some people who tapered carefully may still have post-discontinuation symptoms (but not likely if they had no withdrawal symptoms while tapering).
I suffered 11 years of protracted withdrawal after going off 10mg paroxetine over a few weeks in October 2004. I would not advise risking it by speedily going off a psychiatric psychotropic.
It cannot be predicted for an individual what kind of tapering will best suit them. You need to balance the risks. The most prudent route is a small reduction as a probe, followed by an observation period to test individual tolerance, then to adjust the method accordingly.
You have to start somewhere, and initial 10% reduction seems to work for most people. (Horowitz & Taylor, 2019 suggests an initial reduction of 25%-50% for SSRIs, as the effect on SERT receptor occupancy is relatively minor. To me, a 50% initial reduction seems too drastic. Drug plasma level decrease faster than SERT occupancy; a plunge in drug plasma level may be where acute withdrawal symptoms come from. If you’re taking a high dose, a 25% initial reduction may be less likely to cause withdrawal symptoms. However, after that, I’d advise smaller reductions, such as 10% exponential.)
Yes, adverse drug effects — what Breggin and Fava call toxicity and behavioral toxicity — tend to diminish as the dosage diminishes. If organs are not endangered, I would take the more cautious slow tapering route.
Having to choose between the uncertainty of tapering and the uncertainty of post-discontinuation syndrome is a difficult dilemma. Patients should not have to figure out how to back out from their unwitting physiological drug dependencies without medical advice, but that is the way it is. People generally have proven to be terrible at understanding the concept of risk. You pay your money and you take your choice.
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There seems to be an unspoken belief that duration of taper is decided before the initiation of the tape, as part of the taper and not a result of the taper. A taper takes time. Does time determine the taper?
More than 16 years ago, it was common to calculate the individual reductions by arbitrarily naming the number of days that the taper would last and divide the initial dose by that number. The process failed. It was based on a guess and not on physiology This idea seems to have resurfaced.
“Slow” is a by-product of the chosen process and not an element of the process, itself; or “it takes what it takes”. Does anyone believe that overriding our biological limits, in either direction, is rational? Of course arbitrarily deciding to use a very long time is absurd. Is that the point of the article?
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I would be very interested to hear how you would counsel someone who wants to go off their psychiatric psychotropics, Bananas. What practical, step-by-step advice would you give? What would their first reduction be? How would they decide on the next reduction? How do they decide when to stop taking the drug altogether?
I am always looking for people who are knowledgeable about how to go off psychiatric drugs with minimal discomfort and disruption to their normal lives, and can communicate clearly and sympathetically to my site members who are often frantic about failed tapers. If you have these abilities, please contact me.
My e-mail address is in my paper “What I have learnt from helping thousands of people to taper off antidepressants and other psychotropic medications” publicly available at https://doi.org/10.1177/2045125321991274 (viewed nearly 30,000 times).
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Thank you for your contact link and interest in different taper perspectives. I do not offer my approach within any internet site. I work only through physicians because information has been so easily corrupted through the internet.
Examples of this can be seen in “Withdrawal Education” classes. Elementary science is absent.
I learned to offer cautions and not advice at internet sites.
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It’s unfortunate that you restrict your knowledge, which can be so valuable to the patients themselves.
I have no idea what you mean by “Withdrawal Education” classes. Who holds these?
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To begin to illustrate the extreme variations in discontinuation results: I was prescribed the maximum manufacturers’ dosages of two antidepressants. for years. I was warned not to decrease the dosage, but there was reason to believe that this was not wise.
I abruptly stopped taking one and then the other. Not only did I feel better, but I had no withdrawal symptoms at all. Does this mean that the ultimate short discontinuation is safe? No, it does not. The only take away is that this was safe for me; it was merely my experience. My C/T easily could be a disaster for someone else. I take this as an illustration of extreme differences in physiology from person to person. Hence the need for treading carefully when abandoning psyche-meds. Doggedly adhering to “rules” ignores the thing called polymorphism.
Here we are dealing with uncharted waters. The ancient cartographers labeled the unknown territories , “Dragons Be Here”. Well, Dragons really “be here”
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James, judging from the comments here and from some of my site members, people are reading your article above to mean if they want to go off their drugs, they might as well make it up as they go along. Moderators in the Facebook groups are getting the same kinds of questions.
This is back to 2000 again, when people didn’t know anything about tapering to go off.
If this worked, I’d be happy to close my site, knowing that people are not being injured by going off their drugs too fast or haphazardly. I wish this were the reality.
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Hi Altostrata, thank you for taking the time to comment. People reading this piece are free to make their judgements, of course, but I don’t think anything written here says “make it up as you go”. I fully acknowledge the good work of Surviving Antidepressants and how much progress has been made in understanding the complexities of withdrawal. All I am relating is that there is a difference between advising and instructing and that we need to continue to search for answers. I feel that we should continue to ask the difficult questions, that’s the route towards better support rather than assuming we know everything as prescribers have been doing for so long.
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But you still haven’t addressed the comments of how you know these groups are rigid?
Here is what you said specifically:
“I have had people contact me privately to say that they were thrown out of other support groups because they didn’t want to rigorously stick to the “10% of the previous dose” tapering strategy that has achieved almost mythological status in lay communities.“ how do you know this was the reason? Do you know that many groups have multiple rules in place? Do you know many have rules about drug names that can/cannot be mentioned due to fb community standards? There can be rules against gaslighting, promoting half dosing and cold turkey, and many more. So again how do you know what rule was broken for these people? If you are only talking to the disgruntled ex-member they could not be fully honest. Have you asked the admin of these groups? And again how do you know they follow a strict 10% rule and not a suggestion of that is a good place to start?
“Sadly, the same cannot be said for all withdrawal advice given in online forums. Much of it comes from a good place but some advice is too restrictive and not given in full consideration of a person’s unique circumstances.” How do you know this is the case? Are you in these groups to know this is happening? Have you asked the administrators of those groups the policies they have in place?
“If you find yourself in a support group that forces you to engage only in a certain way, then find another, more open, more welcoming group.” How do you determine what is welcoming? That group could be helping 5,000 other people but because someone gets removed makes it not welcoming? Again, have you reached out to these admin of fb groups that you seem to be implying are too rigid to actually hear the full story? I’d be more than willing to explain how I run my groups with rules and how yes members get removed for repeated rule violations. They aren’t removed for “not sticking to a strict 10% drop.” You have specifically called out these groups doing tremendous work as less than. That they are not up to par with SA or ICI. Again if you haven’t talked to the administrators of these groups you are assuming and taking disgruntled ex members story for why they were removed from a group. I’ve seen them go on a tirade in other groups after being banned, and many times they don’t tell the whole story. You have A LOT of questions to answer here. Your silence on this matter the past week has not been good for the rest of us doing this work daily mostly on our own time.
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I’m asking you these difficult questions as you have clearly said time and time again how “we should continue to ask the difficult questions, that’s the route towards better support rather than assuming we know everything” So I’m asking you those tough questions as you are assuming things about these other groups that I don’t think you are fully aware of. That is not fair to those of us who admin those groups who you have severely tarnished with this post.
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As I noted above, I would be happy to hand over counseling people who want to go off their psychiatric drugs to someone who can “advise rather instruct” better. Volunteers, please write me at the e-mail address in https://doi.org/10.1177/2045125321991274
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Regarding Facebook support groups and removing members, most Facebook support groups require members to agree to their group mission/rules. Some members ignore the rules or feel the rules don’t apply to them therefore they’re removed. It’s not fair to the other members if groups don’t abide by their own rules. Please educate yourself on how Facebook groups work versus websites and forums.
Regarding tapering, you call it rigid, I call it being responsible and safe using the 10% or less method. People can spin the roulette wheel you’re recommending and risk protracted withdrawals or worse OR they can taper safely. There’s no way to know in advance how anyone will respond tapering, this is a known fact. I don’t know about other antidepressants but when it comes to Effexor, withdrawals can blindside you weeks or even months later without any warning if tapered too fast. Why would you recommend or suggest anyone taper fast that isn’t having an initial adverse reaction and risk their own life?
You said, “Going through withdrawal yourself only qualifies you in your own experience, it doesn’t tell you a great deal about other experiences.” Exactly and why my group mission was formed based on almost 9 yrs. of research and others personal experiences, not mine, not yours, EVERYONE’S!
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Exactly!
Our Facebook groups are based on the thousands of stories we have from one specific drug. It isn’t based on my individual story or another admins personal story, but the countless stories and statistics that have been collected over the years.
Did you know that we can make polls for different symptoms and gather data? Or that some of us have mathematical/statistics/technological backgrounds and this is the basis of our group and how we gather data to best advise the majority while still being flexible?
I completely agree with you KC!
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” I don’t know about other antidepressants but when it comes to Effexor, withdrawals can blindside you weeks or even months later”
I believe that you are right! This is not my own experience but that of someone I know well. Her “months later” experience was mini seizure events. Her body quaked and jerked without relief.
. I hear that this is unusual. Is it?
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I’m sorry about the person you know. We have seen it many times in my group when members have tapered too fast. They initially think they’ve dodged a bullet, feeling happy and great, then BAM! They’re slammed with horrific withdrawal symptoms desperate for relief. Some are so desperate they end up taking a full dose (25 mgs or 37.5 mgs) or more making themselves worse. We even have some who are unable to stabilize after trying to reinstate a very small dose (1 to 5 mgs). So the advice, recommendation, suggestion, whatever James wants to call it in this blog is horrible where Effexor/Venlafaxine is concerned.
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Yes, we have polls, etc. in my group as well. It’s an excellent source for collecting information on; what has worked or hasn’t worked for members, symptoms members are enduring, etc. etc.
When someone posts we also review their past posts and comments for more information because members rarely give you their full story each time they post.
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Effexor is some otherworldly devilish drug…
If i ever make it trought my taper alive, I can happily die after that. That’s my final destination after which only life in its purest form will await me. I think if you go through withdrawal why should you ever be hesitant again fulfilling you’re deepest wishes. Withdrawal has so many obstacles, it’s like a bunch of herculean tasks combined with and odyseey and going in the tartarus to find you’re lost soul. Actually Greek mythology has some pretty good metaphors for withdrawal… Haha.
Greetings
Kosta
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You will get there. Make sure you are using different therapies, coping skills, counseling, etc. etc. get outside whenever possible, remove negativity from your life, add lots of positivitiy. These are things that have saved and worked for me. I’ve been on antidepressants for 31 yrs. and only have 5 mgs of Paxil before I’m drug free. I never in my life thought this would be possible and all the while I’ve been doing this slowly while being in protracted withdrawals from Effexor. You’re right, it’s a devils drug for sure. I don’t think there’s even a word in the English dictionary that can describe Effeoxr withdrawals. It’s a miracle I’m still here after being bedridden 3+ yrs. Be gentle with yourself, you can do this too.
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Hi James
Just listing some things you may not have known.
– Did you know that many of the existing withdrawal Facebook groups you have disenfranchised publicly on this blog in favor of ICI and SA have admin teams that have been doing it for 8-10 years, non-stop volunteering their own spare time every single day? I don’t know if you have any thought how your blog may have made them feel about their decade long dedication and contribution to the withdrawal community. IMHO, they deserve to be praised not admonished.
– Did you know that many of these groups have polls ran regularly that are several years old capturing essential and relevant membership withdrawal data, some 3 generations of memberships? One group has 153 polls (withdrawal data sets) run round robin regularly. This data represents the vast consumers’ withdrawal lived experience. Where you have implied our groups are just going by one given individual’s experience, that being of any given admin team member. This is just not so.
– Did you know that many of those teams are staffed with engineers, architects, medical & university professors (PhDs) or equivalent academic stack holders of varying disciplines that innately know to survey, data mine and “spreadsheet obsess” from day one in order to track and understand the withdrawal wide range of experiences and trends of their withdrawing population?
– Did you know there is a thing called hidden Facebook groups where the general FB population cannot see or access them? And did you know that many of those long standing more mature withdrawal groups may be hidden?
– Did you know that a FB group called the HUB maintains a cohesive membership of all the withdrawal FB admins, moderators, founders and advocates across the internet (39 groups in total) where we all share our BKMs (best known methods) for all things withdrawal related? Or that the HUB’s withdrawal groups represents 150,000 withdrawing consumers collectively to date? Or that SA and ICI are also HUB members where the FB groups proudly leverage their widely held tenants and principals as models to follow for their withdrawal processes?
I would venture a guess that these 150,000 withdrawing consumers might not share your sentiment that these groups are “unwelcoming or rigid”. We constantly hear praises from them such a “this group is a life saver”, “I would be lost or gone without this group”, “thank God for this group”, this group is a godsend”. “You guys saved me and my families life”.
I think you get the gist. We know we are not perfect nor do we know everything, No one does in the w/d environment. We know we are a WIP, always. And always learning. Our main concern is to help people (and their families) get through this life altering experience the safest way possible. Because that’s how we all look at each member, that there is a family that is also being impacted by what they are going through.
– Did you know that up front agreed to rules, entry questions and mission statements are greatly emphasized and required to be read and agreed to by every new member PRIOR to ever being approved to join these groups? And did you know that agreement is stored automatically and intentionally “by FB” against each member’s profile for admin team future reference to support moderation actions.
– Did you know that any member that breaks the rules gets “3 CHANCES” before being removed, which is also part of the agreed to entry questions that all new members are made aware of and agree to?
– Did you know that FB has strict community standards (CS) that groups are required to follow under threat of receiving violations for members not adhering to them. This includes but not limited to content such as vax, benzo, opioid, ketamine, psyiliban, suicide etc., the list is very long and varying. And if a group receives 3 violations they are removed from FB’s search engine (a silent death) or indiscriminately shut down by FB. And did you know that these FB withdrawal groups incorporate those FB CS into their rules which all new members also agree to?
– Did you know that these groups go to great lengths to leverage and use nearly every capability and feature offered by FB to keep their groups optimized, safe and running to par solely for their withdrawing memberships benefit? And did you know that these admin teams also belong to FB’s power admin group, sponsored by FB itself?
– Did you know that these groups have a % population of providers (medical doctors and psychiatrists alike) within their membership (we track them because we love and use data) that regularly post about how much they have learned from these groups and that they had no idea withdrawal was real, thanking us profusely and publicly for educating them on tapering and withdrawal from reading all the withdrawal stories and our collateral? Ask me for samples of these providers posts gushing about us, James. I’d be more than happy to provide them.
– Did you know that these withdrawal groups use single source collaborative sharing for their withdrawal and tapering collateral and store it under topics and keep it updated and relevant solely for our memberships benefit?
– Did you know that these groups “IN WRITING IN THEIR TAPER COLLATERAL” recommend no more than a 10% drop (reduction) of current dose “AS A FIRST TEST DROP” so one may know what their withdrawal tolerance level may be. And from there you listen to your body and go at your own withdrawal tolerance pace (sans SA)?
– Did you know that when a group allows chaos and cowboy-devil-make-care-behavior in a group by not establishing rules, that unwitting new members advise vulnerable members to CT or do 50% drops (halving) or alternating doses as a means to taper while being cheered on by other unwitting new members, and that your group will most likely experience suicides as a result? Years of experience as admin team members has shown us this, sadly.
– Did you know that when you do not respond to the FB groups comments on this blog of yours, but skip them and respond to SA instead, that we again feel even more dismissed and disenfranchised?
– And finally, did you know that you could easily flip your LTW group from a “discussion only” group to a support group. Then you could invite all the CT, 50% drop & alternating doses people to your membership to support them in their endeavor to swiftly and haphazardly discontinue. It would work well since you don’t have any official rules in LTW. Sounds pretty scary and daunting, we know. But that is what we see in droves of new members coming into our groups on a daily basis despite the emphasized rules that they agreed to.
On a more personal note, I would again invite you to meet with us so we can have an open and honest dialogue about this topic with the sincere intent to level set and reconcile these assumptions. It’s only natural for the FB groups to want to fight back when we see we are being misrepresented and bashed, and now unheard, by one of the long standing withdrawal entities, MIA. We very much want to work together and not against one another. No one gets anywhere when there is infighting. It severely takes away any gains made towards all of our common goal and the cause in general of which we are all very passionate about. It could cripple and fracture us in ways that can be a detriment to our withdrawal community. Please do think about contacting me, you have my email from my MIA profile.
It’s only fair to understand our side of this James, and an added benefit is you will then know how we all operate. Looking forward to hearing for you.
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Hi Resilient, thank you for sharing your thoughts. I knew some, but not all, of what you shared and I appreciate you taking the time to write this. As some will know, I did talk about some of these issues and discussed at length the huge value provided by FB support groups when I interviewed Sherry Julo and the much-missed Ed White on the podcast last March https://www.madinamerica.com/2021/03/online-support-groups-psychiatric-drug-withdrawal/. My piece says “the vast majority of support group interaction is invaluable” which is what I believe and in alignment with my discussion with Sherry and Ed. Some here take the view that my asking questions and relating a small number of bad experiences is denigrating or bashing all Facebook support groups (including my own) but I just don’t see it that way. It sounds like the group that you are involved in is well run and has clearly helped many people and the users wouldn’t be without it. That represents the majority of interactions that I have experienced myself and many that have been shared by others.
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Hi James
Thank you for your generous reply. I had felt there were many missing pieces to this blog and it’s comments, that you might not have been aware of, so wanted to fill in any gaps. I am pleased that it may have helped see the entire FB withdrawal support landscape.
When I started my groups, your story was one the one’s we followed closely for a long time. It gave us hope. It made us feel not so alone and it helped fuel my fire to want to do more. So thank you so much for that.
I truly hope this entire exchange has not eclipsed or diminished in any way all the goodness you have brought to our community for these many years. Much sincere respect to you for all of it!
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Agree with the above by Resilient.
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:As an example, for someone coming off a 20mg dose of citalopram (Celexa), a “10% of the previous dose per month” strategy will require them to take 29 months, over two years, to reach a 1-milligram jumping-off point. For someone who has been treated for decades, this seems sensible;”
It’s quite true: That strategy would require 29 months. However, there seems to be the assumption that duration of use directly determines the time required to discontinue the drug. Is this supported by evidence?
Since the time required to become dependent can vary by more than 10 years, there seems to be no known relation between time on the drug and time needed to safely taper.
Once the net was full of suggested rules such as “taper X times the time you were taking the drug”. This seems to have faded on credibility.
Other than the fact that continual use allows dependence, is that time really directly relevant to time in taper?
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It has always seemed to me that everyone’s body is different, and so a different approach needs to be considered for each person. Psychiatry’s biggest failing is assuming that everyone who feels “depressed” (or whatever other manifestation they identify as “illness”) has the same problem and needs the same kind of help. We should not fall into this trap! I think the advice about starting slowly and observing how much a person can tolerate is very, very important, but assuming that 10% or 5% will work for everyone means that some people who could get off a lot faster are restricted, and others who may find this rate too fast will feel hopeless. I think flexibility and respect for each person’s own sense of what works for them should be the center of any effort to wean off of dangerous drugs.
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I don’t know who thinks “duration of use directly determines” the length of a taper except those ivory-tower experts who get what they know about antidepressant withdrawal from chatting with each other over drinks at conferences rather than observing or talking with patients.
Few “experts” have observed the period required to get people off psychiatric drugs except for the peer support groups, and their populations, who usually find their ways there after failed tapers, need a long time to gradually go off with minimal withdrawal symptoms.
It’s also an inaccurate generalization that the peer support groups force anyone to taper by a set amount. It’s not a monolithic subculture, and most advocate “listening to your body” to guide the rate of a taper. (Drug half-lives make “listening to your body” a bit tricky, as withdrawal symptoms may not emerge until some time after a reduction. This limits the speed of a taper. Many people learn about this the hard way; peer guides add value here with their expertise.)
Unfortunately, our intellectualized, medicalized, psychiatrized culture also has divorced people from attending to their bodily sensations and often people need to learn this all over again, initially being determined to charge their way through going off regardless of consequences. Error messages from their bodies then become unmistakable; this is the confused, unsettled state of many people who join peer support groups.
There are many misconceptions about the peer group subculture being voiced in connection with this article. I invite people to visit peer groups and see what goes on there rather than pulling their hypotheses out of the air. Administrators and moderators of these peer groups have to deal with a lot of difficult personalities even more difficult in distress, too. So walk a mile or two in their shoes….
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You know, it kind of sounds like everyone is more or less on the same page – don’t start suddenly, have a plan, adjust to individual needs, listen to your body, the person withdrawing is the best guide. Seems like good advice.
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No one has said that duration of use directly determines the time required to discontinue. Again that would be rigid. What many of us are stating here is that we aren’t rigid, but give a guideline of cut rate to start with and then the person can assess. We suggest starting with a 10% cut and hold for a month, if it went well you can do that again or increase your cut. If it was too difficult, cut back or hold longer.
Per your example, those 29 cuts could be made monthly. A second person may be able to make those cuts every 2-3 weeks, where a third person may need to take double that time or longer. It’s about genetics, metabolism, diet, environment, etc, how your body handles it. It’s why so many say listen to your body, go at a pace sustainable for yourself. That’s the point many of us are making here is that it needs to be fluid. Some of us get like our fb groups were being attacked as rigid because our methods were not being mentioned as we state them.
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I strongly echo what AltoStrata and RybaZone have written.
And will add that stepping off at 1.0mg is not a low dose to discontinue for many, far from it. We know this from observing years of consumer lived withdrawal experience, but also now recent studies confirm and help educate us on receptor occupancy rates in context of hyperbolic tapering (or exponential decay).
Perhaps give a read of this study by Horowitz and Taylor:
https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30032-X/fulltext
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Hi James
Thanks for posting an insightful and well thought through and articulated piece of writing! I do agree with much of what you say….it is impossible to know what the best strategy for tapering is for anyone really and the best advice has to be to listen to our bodies. I am also trying to escape the clutches of mirtazapine and actually found coming down from 30 to 15 (via 22.5) pretty easy and took little time…I’m glad I didn’t start from 30mg with the 10% rule as would have taken me overall a lot longer. But then getting below 15 has been hellish and I’m currently languishing on 11mg and reasonably stable. I am going to stick with my current method of 1mg reduction approx every 4 – 6 weeks and try and make it to 7mg but then I have no idea as the prospect of slowing it right down and doing 10% of the previous dose until I get to less than 1mg will take forever and I’ve already been in WD 2.5 years and counting…I WANT MY LIFE BACK!!! also I’m still cutting and measuring which I know is not precise but I had no joy with liquid formulations so stuck with this
Perhaps I will try the tapering strips once I get to 7mg and just get myself off and then let the real healing begin. I don’t know right now, all I know is I’m just going to try and get lower and not think about the future too much
Also a great shout about the need for medications to be offered at much smaller doses and more variable doses to what we currently have. Psychiatrists know so little about the impact of these drugs
Thanks for all the work you do to raise awareness
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While it is obviously true that a longer taper equals longer exposure to the drug, that longer taper time is exposing to less and less of the tapered substance. If we believe that using less and less ,in a responsible manner, allows the physiology to re calibrate its functioning, is it reasonable to say that longer exposure to any amount of the drug, including lower and lower doses, has the same effect as the same extended exposure time with the original dosage?
In other words: Why worry about exposure length when you are clearly healing (reversing the dependency)?
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