Antidepressant Withdrawal and Dependence is one of the greatest public health crises of our time. Ed White has recently featured in the UK recounting his experiences he drifting into dependence on antidepressants and finding that the people best placed to help him and you were others in same position supporting each other through groups on Facebook and elsewhere – see White Article.
Historically doctors are not to be questioned. They don’t make mistakes. Their word is gospel. Admitting we make mistakes is difficult for many, but Learning from those mistakes is paramount. When a profession fails to learn from its mistakes, we have a real crisis.
I was first prescribed an antidepressant in 2009 when I was struggling after the death of my partner’s mother in a car crash, combined with pressure at work. I asked for help. This came in the form of medication. At the time I had no desire to question this. I still had some faith in the medical profession to be helping me in the right way.
The Dr communicated there was something wrong with me that needed to be treated. He said the depression I was experiencing was innate, or “its part of you”. I believed this nonsense, and in one way or another could not break free from it for a long time
The first attempt with antidepressants didn’t work out well. It precipitated out of character behaviour. It made me feel anxious in a strange sort of way – for no apparent reason, a feeling I would experience again much later on in this journey. I didn’t question the next prescription of diazepam either, which was provided to counter the side effects I was experiencing. Should alarm bells have been ringing then, when prescribed what I now know to be hideously dependence forming drugs? At the time I had some idea there was risk involved but I really didn’t question it enough.
Moving on I did find a drug that apparently helped me, with few side effects that I kept taking for around 6 years. Having previously used this drug for a shorter period and knowing I was able to get off it relatively safely (albeit over a nine-month period), I thought I could do it again. It’s almost like there’s a feeling of well, it’s not going to happen to me. A bit like smoking or drinking a lot. People know it’s not good for them but do it anyway.
In the summer of 2017, I’d had enough of the side effects, the worst of which was the commonly described emotional blunting. The other thing I started to notice was the effects of missing a dose. Early on it would take between 12 and 24 hours to manifest itself if I missed a dose – I would get a swimmy/whooshy feeling in my head. My vision was affected; there was a strange lag. I would start to get loose bowels and nausea. Taking the next dose cleared all this up. By the time I decided I wanted to stop, the effects of missing a dose would become apparent about two hours after missing it.
I talked to my GP about stopping and he didn’t try to persuade me not to. He prescribed a pill form of the medication that could be easily broken up and liquid to cover the lower doses of the taper, saying “I should be alright” with my planned 5% dose reductions on each step. I haven’t forgotten those words.
After a four-month taper, I stopped the drug.
Nothing could prepare me for what followed. The symptoms I suffered over the next few weeks and months morphed and changed, new symptoms appeared and others went away. It was a descent into hell. Like nothing I had ever experienced before in terms of severity, ferocity and number. This situation I found myself in also started a journey that changed my attitude to emotional distress.
The symptoms I was experiencing precipitated a GP referral to a psychiatric service. I was desperate and suicidal and in need of relief from a myriad of painful, dark symptoms. I was in no fit state to resist any treatment.
Remarkably the first psychiatric ‘diagnosis’ I received was medication withdrawal and depression. I was pleased I was being listened to after numerous GP conversations, variable advice and a lot of denial. I tried to explain the circumstances to a prescribing nurse. I’d had a fierce paradoxical reaction to trying to reinstate the medication that caused withdrawal. It fell on deaf ears and I was prescribed another antidepressant to ‘treat’ the symptoms. It was prescribed over the phone by a psychiatrist I’d never met via a prescription-happy psychiatric nurse. I was also prescribed a benzodiazepine to get me through the Christmas holidays as the service was so busy, no face-to-face appointments were possible.
This is the first point where I began to doubt these people were going to be able to help me. One of the most severe symptoms I had developed was anhedonia. It was so severe I cared about very little. It got considerably worse as I tapered the benzodiazepine as instructed after the maximum allowed period of use – about 4 weeks. I was given a seven-week taper schedule. All the symptoms it had been suppressing came roaring back. The suicidality became worse, the antidepressant dose was increased twice, which caused significant additional symptoms such as agitation and restlessness. But anhedonia really suppressed any desire to fight back.
Another significant pressure to comply came from family members. My wife is a nurse. She was very concerned about the situation. I was off work from a well-paid corporate role, although benefiting from a very generous sick benefit from my employer and their full support. But her professional background and experience endorses the medical model of emotional distress. She believes the drugs will work. In addition, she was very stressed by the situation. We have two children to support and our house was being extended, so the whole situation was even more demanding, as was her desire for me to comply with the treatment. That was a very difficult force to fight. To this day I cannot discuss it with her without it descending into an argument.
I see the family pressures affect a lot of people. The heaviest weight seems to come to those who are in the worst condition and really struggling due to withdrawal symptoms, just like I was. Unfortunately, they are the ones that will benefit least from medical interventions.
I have seen many other examples of family pressure on people to comply with Drs rather than peer support groups and websites who help people withdrawing from antidepressants. We are left in a no-mans land. Stuck between the choice of compliance with mainstream beliefs that are supported by a spouse or family and on the other hand strangers on the internet telling us to take a completely different approach and rid ourselves of the medications in a controlled and slow manner. I made the wrong choices.
I think it takes people a long time to change their feelings and thoughts about medication and the potential benefits and pitfalls. After all, the medical professions and the media constantly espouse the disease centred approach to emotional distress which I think is wrong and precipitates much harm.
Most of these people probably had very positive interactions with medicine in the past with regard to curing of transmissible disease or a broken bone. Tinkering with the brain using psychotropic drugs is a very different thing. If it goes wrong, the impact can be profound, with a likely lack of belief or understanding from most Drs.
I see this a lot now in withdrawal support forums and Facebook groups and during my own experience of helping support those withdrawing in one of these groups. People feel angry, resentful and betrayed by a system and individuals they trusted. They also feel disenfranchised and confused. A lot of these feelings undoubtedly arise because so little warning is given about risks.
The most obvious change here is for those who suffered when tapered too fast and recovered through reinstatement. This seems to be the group in which the greatest level of dissent emerges. It’s a big group of people too. They question what happened and the healthcare explanations they receive, such as relapse, the need to take medication for the rest of their lives or offers of other medications. Their route to support is the internet and the myriad of support options it offers for those withdrawing for these medications. Here they learn the alternative view and the die is cast. Some abandon mainstream healthcare all together.
Back to my own experience and moving on in time, I was passed to another psychiatric team delivering what’s called an Intensive service. I think it’s better to read ‘crisis team’ here. This involved being completely railroaded through a process of home-based visits by well-meaning psychiatric nurses who tow the party line. This was coupled with medical appointments with a psychiatrist. In my case a very senior one. My wife attended the first appointment with her. I tried to explain I was suffering from withdrawal. The Psychiatrist denied it and diagnosed relapse. Looking back on it, this was a frankly insulting and quite devastating outcome. The follow up letter confirmed the diagnosis. The dose of an antipsychotic I was prescribed by the previous service was increased because the antidepressant was not working.
This is a frightening place to be. The combination of professional pressure to comply, family belief it is the right way and the symptoms of the withdrawal, combined to make me feel utterly powerless to resist.
Things became even more desperate for me. The anhedonia got worse. Any dissent to treatment was slapped down. Questions responded to with, “well the psychiatrists says”…..all topped off with that patronising, “well you have a mental illness” approach, so your thoughts and feelings about your treatment are bound to be irrational. More often than not this was delivered with a stern look of disapproval, which when in a precariously difficult and very negative emotional state was difficult to ignore. I already knew noncompliance would be viewed as a symptom, but I had no motivation to fight back. The only thing I did was to be less honest about symptoms. In particular, I denied the intense suicidal feelings, mainly to avoid the possibility of admission to a psychiatric hospital which was becoming a very real threat.
I also saw this ploy as my protection from what was happening. I wanted to reserve the choice to end my life as an escape from the excruciating symptoms I was experiencing. Dante’s Inferno is not too strong as an analogy. I thought my life was over and that I would never recover. However, the obfuscation I was applying to my symptoms when talking to the nurses and psychiatrist resulted in me being passed on to a community based psychiatric service and by pure chance a more malleable psychiatrist.
The usual psychiatrist supporting this team was himself off sick and so I took the first appointment offered which was with a very lovely South American lady. She still insisted I was suffering from recurrent anxiety and depression, but suggested I try a reinstatement of the original antidepressant. After five to six months off that drug, as I now know, this approach is fraught with risk. Again, my wife attended that appointment so there was added pressure to comply. I was petrified, but to my astonishment it worked. Two weeks later I saw the same psychiatrist again and was able to tell her that 90% of the symptoms were gone. I have never seen such a surprised look on anyone’s face before.
So how has this happened? How is it that thousands of people who take legal prescription medications as instructed by their doctors end up in such a poor state of health? Worse still and probably the most important question is, why is it that Internet support forums and Facebook groups are the only place where people get safe help and support to rid themselves of the medications? Why are they not be helped and supported by doctors and psychiatrists who prescribed them?
In my mind this isn’t a difficult question to answer. They are undoubtedly the victims of professional arrogance, protectionism, denial and minimisation. Professional arrogance in that, “well I’ve never seen this before, so it can’t be the drugs”. Denial in that “it simply doesn’t happen”. Minimisation and accusations in that it’s you, the patient. It’s a return of your previous illness, even though the symptoms are far more varied and intense than the patient has ever experienced before. They only appeared after the drug was stopped or the dose reduced or changed, or worse still, the patient was simply switched to another drug after a long period on a previous one.
I would guess there is also the element of, if you don’t confront it, does it even exist? The ostrich approach enables the status quo to be maintained, but at whose expense? Certainly not the expense of the psychiatric community, because like many medical organisations, when confronted with a potentially damaging issues, the shop is closed. The door is slammed shut. The mothership must be protected.
There are also issues of morality, ethics and how the impact of the commercialisation of health care affects the diagnostics and treatments for those who present with emotional distress.
Why is there such vehement denial these drugs can do such terrible harm to people? Why do professionals get so defensive about it when questioned even though the evidence is right there before their eyes? Is it just ignorance on the part of the prescriber regarding how the drugs work? Is it a training issue? We know it doesn’t happen to everyone. But it does happen to a significant proportion of us. In my mind this has now reached a tipping point. The online withdrawal communities have become the real experiment. The problem is, no one is collecting the data.
The solution to me seems straightforward. But it requires the cooperation of the healthcare bodies in all countries, doctors, psychiatrists and the pharmaceutical industry. Therein lie the barriers to accepting that the evidence is there – it’s all there plain as day on the Internet.
If you are wondering about my wife’s belief in the withdrawal issue now, I can say she has been supportive of my activities to raise the red flag on this topic. I have appeared in the media several time and published in the academic record.
I have carefully shared these pieces with her and I am sure it’s had some impact. That said my own experience is less important now. I am lucky to have fully recovered and am safely tapering off the medication in the right way. If my actions save a few from the fate I suffered I will be happy.