talkhealth meets... Stevie Lewis & Dr Mark Horowitz

Dr Mark Horowitz MBBS PhD is a Clinical Research Fellow in Psychiatry at North East London NHS Foundation Trust (NELFT), an Honorary Clinical Research Fellow at University College London and a training psychiatrist.  He has a PhD from the Institute of Psychiatry, Psychology and Neuroscience at King’s College London in the neurobiology of depression and antidepressant action.  Mark runs a deprescribing clinic in the NHS to help patients safely reduce and come off their antidepressants. 

Stevie Lewis is a campaigner and researcher working nationally and internationally to help governments, prescribers and patients recognise antidepressant withdrawal, and campaigns for specialist support services for people in psychiatric drug withdrawal.  She is a Board Member of the International Institute for Psychiatric Drug Withdrawal (IIPDW) and a member of LEAP for PDD – the Lived Experience Advisory Panel for Prescribed Drug Dependence.  

Both Mark and Stevie have lived experience of antidepressant withdrawal.  They collaborate frequently to highlight this issue, including writing and appearing in a training video produced by the IIPDW “Antidepressant Withdrawal Syndrome and its Management”.

Antidepressants are prescribed for a variety of different problems, not just depression.  Most people, including doctors, believe that it isn’t difficult to stop taking an antidepressant, that these drugs can be reduced over a few weeks and then you can stop.  The reality is that some people experience difficult, and in some instances debilitating, withdrawal effects.  Stevie and Mark are going to explain more about these issues and how to taper an antidepressant slowly in order to minimise or avoid withdrawal symptoms. 

So Stevie, how did you come to be taking an antidepressant in the first place? 

My story starts back in the mid 1990’s when I was in my early 40s.  I was experiencing difficulties sleeping when I went away on business and I was feeling disproportionately anxious once a month. 

I asked my GP at the time for a sleeping tablet, but he diagnosed me as being “on the edge of a clinical depression” and prescribed an SSRI antidepressant to address a “chemical imbalance in [my] brain”.  It is important to point out here that the theory of a chemical imbalance as a cause of depression has to this day never been proven, and is now generally accepted by experts in the field as more of a marketing line by drug manufacturers than rooted in established science. 

What happened to you when you tried stopping the drug? 

What I noticed when I stopped taking the drug was that I became much more ill than I had been when I first saw the doctor, with symptoms that I had never experienced before. The anxiety was far worse, I couldn’t sleep under any circumstances, I couldn’t eat and I couldn’t stop crying.  This led to the doctor telling me I had become more ill, and that I had now developed Generalised Anxiety Disorder.  So I carried on taking the drug. 

What led you to believe you were not more ill, but suffering from withdrawal. 

Over the next few years I made various attempts at stopping, and each time I felt worse.  What I noticed was that the symptoms would come on in a particular way, in a particular timeframe of about 36 – 48 hours after I had stopped the antidepressant, and once I restarted the drug, they resolved in the same time period, and I felt perfectly well again.   

This led me to do some research on the internet and I found a sizeable group of people in the UK on the same drug as me, experiencing the same symptoms when they tried to stop it, which they were calling withdrawal.  I found myself stuck on a drug that I couldn’t stop taking without becoming terribly ill.  I tried reducing more and more slowly each time, but it always ended up with me being hit by a tsunami of symptoms as I got down to a dose of around 5mg (the prescribed dose was 20mg). 

Mark, can you explain to us how patients find themselves in this position of suffering from antidepressant withdrawal? 

This happens because doctors have not been taught to recognise withdrawal symptoms from antidepressants.  There has been a minimisation of withdrawal symptoms, with the drug manufacturers and the psychiatrists who work with them declaring that these symptoms are “mild and brief”.  This is true for people who have been on the drugs only a few weeks, but it is not accurate for people who have been on them for months or years as many patients are.  

However, the guidance for years in places like the NICE guidelines (which is what guides most medical practice in the UK) has said that ‘discontinuation symptoms’ (a euphemism for withdrawal symptoms coined by the drug manufacturers) are ‘mild and self-limiting over about a week’. So when a patient turns up with symptoms of withdrawal, which in some cases can be severe and long-lasting, doctors don’t see withdrawal, they believe they are seeing symptoms of relapse (or a return of someone’s underlying condition). There is a lot of education about spotting relapse and very little education on withdrawal symptoms.  

What are the symptoms of withdrawal? 

Symptoms are myriad and can be debilitating, because the neurotransmitters in the brain affected by antidepressants, serotonin, amongst others, affects many different bodily systems.  Symptoms can be physical or psychological/emotional.  Physical symptoms include problems with the gut - nausea, vomiting, diarrhoea; sensory problems such as vertigo, electric shocks in the head known as ‘brain zaps’; muscle problems such as tremors, spasms, trouble with coordination; and also akathisia, a feeling of agitation and inner restlessness which is so unpleasant some people feel suicidal.  

Psychological/emotional symptoms include crying, depression, panic attacks and anxiety so bad  some people describe it as terror. It is easy to see why doctors hearing these psychological withdrawal symptoms might jump to the conclusion that they are seeing a return of a mental health condition, because the symptoms are overlapping.  However, what patients tend to notice is that they are experiencing symptoms that they never have before, such as the brain zaps and vertigo which are very physical and are not a marker for depression or anxiety, or, as for Stevie, that the symptoms are different or more severe than previous issues.    

So how can withdrawal be distinguished from relapse? 

As we now know that over half of people taking an antidepressant will experience some form of withdrawal when they reduce or stop their medication doctors should have a high index of suspicion for withdrawal. Withdrawal symptoms tend to come on soon after reducing or stopping medication – often days – often quicker than a relapse would occur; although we know that in some people withdrawal symptoms can be delayed. The presence of physical symptoms – like dizziness, headache, brain zaps – along with emotional symptoms can help mark it out as withdrawal. And, as Stevie discovered, reintroducing the drug often causes withdrawal  symptoms to resolve quickly. 

 Education in this area for doctors is vital.  It is important that doctors understand that withdrawal symptoms are not a sign that the patient needs the drug.  They are a sign that the patient needs to come off the drug more slowly.  It is also important for doctors to understand that antidepressant withdrawal can for some people be severe and long-lasting (as long as months or even years), often related to the amount of time that the drug has been taken.  This is down to the profound changes to the brain caused by these medications. 

 What is the difference between addiction and physical dependence?  

When people hear the word “withdrawal” they generally think of addiction as in withdrawal from street drugs or alcohol.  Antidepressants are not addictive. There is no compulsion to use them, or craving.  There is another term, physical dependence, which arises because the brain adapts to the drug over long term use and misses it when it is removed.  This applies equally to caffeine.  We know from brain imaging that the effects on the brain when stopping an antidepressant are long-lasting, which is why withdrawal can be severe and last for long periods of time (e.g. more than a year in some people). 

So what is the best way to minimise or avoid withdrawal effects? 

Firstly, it must be done gradually, slowly, at a rate that your brain can adapt to.  Coming off over months, or even years if you have been taking the drug for a long time, will allow your brain to tolerate the changes. Stopping these drugs too quickly is a bit like jumping off the tenth floor of a building in terms of the changes your brain is asked to cope with. Coming down step by step over a longer period of time causes much less disruption to the system. 

Secondly, it must be done at the rate that you can tolerate. Everyone is a bit different so it is hard to determine ahead of time, and the best way to work this out is through a test reduction to see how someone responds. The best advice is as fast as you can and a slow as you need to, to minimise withdrawal effects. 

 Lastly, you must be extra careful when you reach the last few milligrams of the drug. This is because of how the drug effects the brain – very small doses have much larger effects than you would expect. When there is not much drug about in the brain every extra milligram has a large effect but when it is more crowded with drug every extra milligram has less and less additive effects. A bit like the law of diminishing returns. So for example, 2mg of a drug (a seemingly tiny amount) often has about half the effect of 20mg of the drug.  

 This means you need to make reductions very slowly at lower doses.

The new NICE Guidelines only came out last year, and many doctors are not yet up to date with them.  What can patients do to ensure they get the help they need? 

You can help yourself by becoming more informed on the subject, and if necessary taking a copy of the new NICE Guidelines on depression (pages 18-21) or the Royal College of Psychiatrists guidance on ‘Stopping Antidepressants’ to show your doctor.  In order to taper as slowly as you need to, you might ask your doctor for a liquid version of the drug, or for smaller dosage tablets so you can follow a gradual tapering plan.  It’s important for doctors to understand that it is easy to prescribe an antidepressant, but that it can be very difficult for some people to stop and it can be highly disruptive to their lives.   

Stevie, what more can doctors do to help patients understand about withdrawal? 

Once the most difficult things is to experience withdrawal without understanding what it is.  If doctors tell their patients at the point of prescribing that withdrawal is more likely than not to occur, and give them an overview of some of the symptoms to look out for, this takes away some of the fear and confusion that happens should symptoms arise.  This is true informed consent.  Also I believe at the time of prescribing an exit plan should be discussed, with a clear indication of how long the patient needs to be taking the drug.  The majority of antidepressant research shows effectiveness over a short period of time and therefore prescribing should mirror that. The length of time you take an antidepressant does seem to influence the length and severity of withdrawal. 

What also needs to be taken into account is the time and effort required to formulate a tapering plan for patients, monitor their progress and to support them through this process, particularly if they do go into withdrawal.  There are currently vanishingly few state-provided support services for this, but there is no reason why a member of the GP’s team could not take on this role, for example, a pharmacist or a practice nurse. 

Information contained in this Articles page has been written by talkhealth based on available medical evidence. The content however should never be considered a substitute for medical advice. You should always seek medical advice before changing your treatment routine. talkhealth does not endorse any specific products, brands or treatments.

Information written by the talkhealth team

Last revised: 25 August 2023
Next review: 25 August 2026