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.
Ed also had input to the recent RxISK posts on Effexor Withdrawal – Side Effexor, Managing Effexor Withdrawal, Protracted Antidepressant Withdrawal and Helping H.
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.
In the Beginning
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.
Hell
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.
Doubt Creeps In
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.
Looking Elsewhere
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.
Everyone Lies
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.
What’s Needed?
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.
annie says
A ‘Doctor in Distress’ – A very clear and forthright narrative Dr. Ed.
Dr Ed White Retweeted
Miranda Levy@mirandalevycopy
2h
This is great, from @Reduxreloaded
. I identify with so much of your story. Antidepressant Withdrawal: Avoid Doctors? https://rxisk.org/antidepressant-withdrawal-avoid-doctors/ via
@RxISK
I was told I had to be “Whiter than White” by a lady doctor when going through Seroxat withdrawal from cold turkey
.
I was told not to ‘”come here looking for sympathy”
Yesterday I listened to two other doctors, in the UK, equally forthright, about their own experiences and this is well worth listening to and answers some questions
Dr Ed
Medicating Normal @MedicatingNorm1
Premiering on our YouTube channel NOW: “On Being Both a Medical Provider And A Patient Harmed By Prescribed Psychiatric Medication” http://buff.ly/3aZSfEX with
@markhoro @christyhuffMD , Dr. Peter Gordon & Nicole Lamberson of @BZInfoCoalition #somedocs #psychtwitter #psychres
Social Media has exploded with support groups taking over from the persistent medical model of yor, but back in the day now over 20 years ago, my experience was to sit in the local post office using their internet for £5 an hour and Social Audit was the go-to place to realise, even then, we were not alone.
I have gleaned that medical students are surprised to hear that medicines are poisons having been told that by David Healy, but so few are told this fact of life that any student or doctor not taking this on board will spend his/her life being a very poor doctor.
These drugs can break up relationships, can destroy families, can put so much pressure on the innocent that the repercussions can wreak an horrific havoc on all concerned.
How long has it taken RCP to put together a leaflet on Stopping Antidepressants?
Why did it take so long?
RCP seniors have long denied there is a problem and have done substantial damage to the unsuspecting and they more than anyone, have blood on their hands. A few cautious words could have had a lasting impact on GPs, who are not renowned for their initiative.
How different things might be if those running the shows were honest.
I still shudder at programmes like the Victoria Derbyshire Show when Leonie and Kirk were summarily dismissed by Professor Simon Wessely and he was the one who scored points not the people who were brave enough to speak out. Very distressing watching.
‘Doctors in Distress’ side-step any thoughts of medications.
Avoid Doctors?
Being accused of being ‘mentally ill’ saps the soul.
Doctors can be outrageous, they can cut and shred the ablest, even other doctors, and I think we can all agree that Dr. Ed, Mark and Peter are doing the greatest service by talking, writing, making films for what needs to be a ‘shout from the rooftops’ …
susanne says
Thanks Annie – what did she mean by you had to be ‘whiter than white’ ?
annie says
I was certainly taken aback by this vaguely threatening remark, she had a terrible habit of talking in riddles and never once in two very serious withdrawals did she address the medication which led to a very unhappy outcome, similar to Peter Gordon.
Thanks Ed, PG’s treatment by all concerned was indeed shameful and very upsetting.
Ed White says
Thanks for the thoughtful feedback Annie. I have listened to Mark Horowitz and Peter Gordon and indeed the whole panel explain their predicaments and terrible treatment by their own professions. Peter was particularly forthright with his comments and named and shamed the most guilty parties in the psych communities. Quite right too. These people should hang their heads in shame.
susanne says
So much research – so little action ,Or more accurately too much action by those referred to ‘professionals’ who can still take advantage of vulnerability and necessarily lack of knowledge at first by those referred to them or self referring more often now online initially. It takes a long time for people to get to know of expert support groups outside the grossly harmful approved systems . Much of the research including by people outside the system but with a foot in the door is ignored or repeated over and over again while the corpses pile up even higher,
Check out the much lauded BBC Headroom set up to help us deal with our mental help through the pandemic. Joke. It’s pathetic and totally ignores whether deliberately of from ignorance , self help independant groups.
These have mutiplied a lot during the pandemic and are on facebook and so on. The BBC , as it has some of their stuff on facebook, may have done us a favour by pointing to that independant advice and support can be found on other facebook sites. The greater use of online ‘consultations’ may have some benefit in that people can have more time to check out what is being told. Does anybody with computer skills better than mine or uses facebook know if comments can be put on the BBC facebook videos or elsewhere on the BBC Headroom site to inform viewers where they can get genuine advice and support from those who have expert knowlege compassion and humanity which is so lacking from so many health workers.
One thing some people will be able to avoid is the too often humiliating and quite bizarre meeting with a psychiatrist, or GP and other health worker. Where else in life is one person expected to sit in front of another in a state of distress and simply answer a set of questions , some very intimate , from a stranger with a computer face . The situation is almost set up to be stressful and add to the way a person relates. (sorry ‘presents’) A the end of the folie a deux the doctor has been trained to conduct and the person in distress has to learn to navigate, the trap is set for the ‘come back and see me’ – If many could fast forward or see into the future that’s the last thing they would do. Unless they happen by luck to find that decent doctor.
susanne says
This is how St Thomas in London treats side effects of ant psychotics – who would even think this amount of crap could be tolerated without serious consequences . The public are told that thse side effects are outdated belonging in the era of movies such as ‘One flew over the cuckoos nest’.
Dystonia, Akathisia, Parkinsonism, and Tardive Dyskinesia – Antipsychotics Side Effects
12,259 views•25 Sept 2020
https://youtu.be/ucrV4ljDKuE
USMLE pass
24.7K subscribers
Tardive dyskinesia (TD) is a heterogeneous syndrome of involuntary hyperkinetic movements that is often persistent and occurs belatedly during treatment with antipsychotics. Recent approval of two dopamine-depleting analogs of tetrabenazine based on randomized controlled trials offers an evidence-based therapeutic approach to TD for the first time.
These agents are optimally used within the context of a comprehensive approach to patient management that includes a practical screening and monitoring program, sensitive and specific criteria for the diagnosis of TD, awareness of the severity and impact of the disorder, informed discussions with patients and caregivers, and a rational basis for prescribing decisions about continued antipsychotic and adjunctive agents. Areas of limited or inconclusive data, bias and misunderstandings about key aspects, and neglect of training about TD in recent years contribute to barriers in providing effective care and promoting patient safety.
mary H says
Why are GPs so reluctant to suggest support in withdrawal to their patients? I would have thought that sharing their own responsibilities would have been welcomed.
We (prescribed medication withdrawal peer support) were recently contacted by a person wishing to discuss their withdrawal from an AD. We have exchanged messages over the past couple of months. Three weeks or so ago, feeling that the person could do with more support to do with dose strengths etc., we felt confident enough to suggest the service that we are so fortunate to have in North Wales – the NHS withdrawal support service. Support is by referral from GP or psychiatrist. Now, why was it left to us to suggest this support? Why had the GP not suggested this during the difficult times reported to her over the years? The patient concerned has now been contacted and is awaiting a first appointment. The joy of feeling supported by that service as well as by us comes shining through in messages.
Carla says
Ed Whites account seems all too familiar.
I can relate, all too well, with his horrifying experiences and relentless mistreatment especially by those who are meant to care.
Sadly, when something unfortunate happens to patients some professionals distance themselves and ‘close ranks’ when those suffering need: sincere answers, support and a road map on how to navigate themselves out of a dark abyss, many are bogged in, through no fault of their own. This experience alone, can make one feel so helpless, defenceless and desperate.
When ones good health has been attacked/harmed and people are suffering, patients don’t need further humiliation, exacerbated by some professionals.
I empathize with Ed and many other people who have had to go through a harrowing experience with many professionals who don’t care when something unforeseen happens. I am so sorry you had to endure copious amounts of maltreatment after your first unsuccessful attempt with antidepressants, only to find the symptoms are amplified by a cocktail of other medications. This tweaking method some doctors currently utilize, only makes ones condition worse. Hence, the very reason why many doctors have to be careful. If other medicines are involved in the mix, this may make ones health issues very problematic.
Tolerating the nasty side effects does not need to be compounded with more psychiatric medication(s). This only temporarily blunts out the nasty side effects that have been compounded by the previous prescribed medication(s) or other alternate healing treatments. It could possibly put many on a roller coaster ride of their life, which down spirals into inducing worse health maladies or even worse, death.
The nonchalant/aloof attitudes displayed by some professionals when the medications they prescribe harm, is not going to help peoples dismal situations particularly, when they are in need of understanding and support.
This account unfortunately bought many skeletons out of the closet for me. Did I need to go back to a time when many failed me? The answer will always be defiantly, NO!
Like Ed explained, we need to be supported in a safe place where people who are adversely impacted by these medicines, are taken seriously. Patients who have been impacted need to be guided to professionals who are aware about these medicines and how to delicately unbalance something that has induced so much harm and suffering. If there is no such thing the patient may have to tough it out alone the ‘çold turkey’ way and sadly many may not be strong to tough it out themselves. They may need to be directed to forums which have supposedly benefited many people who got no support going mainstream. Doctors have got to refrain from adding more pills to the patients list, to mask what other medications induce. Other health professionals have to refrain from prescribing alternate things that could make health matters worse. Without knowing someone’s full medical history, it is better to err on the side of caution.
This archaic way of dealing with patients adverse reaction is not benefiting anyone.
The medical culture are aware what is going on.
Taking a defensive mode, only makes matters worse.
Defaming ones mental integrity, is not only humiliating but dehumanizing.
The current health care system will only positively evolve, if the current culture accepts there is a serious problem and creates remedies to absolve wrongdoings that is manifesting more harm than good.
I understand and appreciate the dilemma Susanne so eloquently puts forward.
Indeed, compassion and humanity is so lacking from so many health workers in this day and age. Something has to give!
Why is caring become a dirty word?
Justin Oxley says
My selection of supplements appear to have banished the alcohol craving that I had this time last year and the daily headaches have gone. I switched from Sertraline to liquid Fluoxetine in December 2020. Based on my past ssri switching experience going from Citalopram to Sertraline in 2014 I was anticipating nasty symptoms like akathisia to pay me a visit a month after the switch but I seem to have avoided that nightmare this time around which I’m rather pleased about. I don’t understand why I had no significant switchover symptoms this time.
I’m using a 1ml syringe to feed 0.625ml of the from the 20mg/5ml Fluoxetine solution into Spiced Ginger tea each morning and evening, this tea is great, I prefer it sweetened although I have to be careful with sugar as I have T2DM. I would rather be addicted to this stuff than booze, this really is excellent tea.
https://www.amazon.co.uk/gp/aw/d/B00BK78D24/ref=ox_sc_act_image_8?smid=A3P5ROKL5A1OLE&psc=1
Withdrawals can make you feel run down and tired especiallywith me first thing in the morning, I found this coffee with L-Theanine, Taurine, Inositol and Valerian powders improves things for me alot.
https://www.amazon.co.uk/gp/aw/d/B008P731LK/ref=ox_sc_saved_image_5?smid=A2HL1N2RC3M8N8&psc=1
About lunch time I have this soup into which I add Passionflower and Lions Mane powders which appear to be helpful in mitigating withdrawal effects and making a day run smoothly. It really is a Super Soup.
https://www.amazon.co.uk/gp/aw/d/B00ZNGQEAQ/ref=ox_sc_act_image_8?smid=A3P5ROKL5A1OLE&psc=1
I’d steer clear of taking Pervitin to give me a boost in the mornings even if everyone else was saying it’s marvellous. I had no idea that alot of people were having this on their cornflakes in the mornings in the olden days, I’ve heard Pervitin can give you very bad teeth. It’s no good having a thriving economy if everyone’s teeth fall out.
https://youtu.be/w09Dd406TYw
Nikki Alexander says
Thank you for sharing your story, too many people have been harmed by the willful neglect of doctors to research the harm these medications they prescribe sonwillk fly focus all cause! So many have been harmed, so many deaths but the doctors and psychiatrists prefer to stay quiet and in denial of the harm preferring to blame patients, increase meds, change meds, etc without either first informing people if the dangers of side effects and then when we realise the issues, side effects, health issues, changes in thinking etc all akathisia & careful tapering regimes tomorefetn patient harm are ignored! Too many stories of patients living with long term lhyscisl disabilities and those still grieving the loss of lived ones that turned to these people for help but we’re brutsly harmed instead! None of medical want to take responsibility it seems it is up to many to share and to tell their stories of how we’ve been harmed by these people claiming they know how to heal us – if for no other reason than in the hope of stopping others suffering or going down this path and that those that have for so long shut their eyes and ears to the truth will finally be held accountable, that systems wil change and others won’t have to suffer the losses of family and friends who made the mistake of listening to their doctors or other systems when in trouble, when they turned to them for help so many have been seriously let down and then retraumatised and those guilty parties refuse to admit their mistakes!
Justin Oxley says
There are some painful conditions that can make life difficult such as cramps, toothache, otitis media and headaches, those when they show up can make getting a decent night’s sleep impossible. Akathesia is probably a worse experience than any of those that condition is something else entirely and is very difficult to endure. In my experience it can make 5 minutes feel like a week, anything that you can take that shifts the odds of developing Akathesia prior to tapering for example has to be a good thing. I read papers which showed evidence of the use of vitamin B6 and Magnesium Glycinate in diminishing the severity of Akathesia. I have been taking those every day they may have helped me to avoid Akathesia this time around, itnis impossible to know for sure. My feeling is managing the Akathesia response that can crop up with relatively large step changes in ssri dose or a compound switch is probably quite important here. It is very simple cheap any easy just to take 300mg vitamin B6 each day for a few months before tapering for example.
annie says
Spanish hip-hop Twitter – Watch That Tweet!
recovery&renewal@recover2renew
· 4h
Good grief!!
FEBRUARY 15, 2021
The effects of antidepressant drugs evaluated through the analysis of patients’ tweets
by Universitat Pompeu Fabra – Barcelona
https://medicalxpress.com/news/2021-02-effects-antidepressant-drugs-analysis-patients.html
Researchers of the Research Programme on Biomedical Informatics (GRIB) from UPF and Hospital del Mar Medical Research Institute (IMIM) in Barcelona, Spain, have identified behavioral and linguistic changes in tweets in Spanish published by users suffering from depression and who are taking antidepressant medication.
Their work has been published in Journal of Medical Internet Research and was led by Ferran Sanz; with Angela Leis and Francesco Ronzano as first authors, who conducted the work together with Miguel Angel Mayer and Laura I Furlong, all from the Integrative Biomedical Informatics research group.
Depression is one of the most widespread mental illnesses. According to the World Health Organization, it affects more than 322 million people of all ages and is one of the leading causes of disability worldwide.
The possibility of analyzing massive data shared on social networks provides researchers with new opportunities to better understand the behavior of their users.
In this study, using big data techniques and text mining, the scientists analyzed tweets by users who mentioned they were taking drugs for the treatment of depressive disorders. The main goal was to detect the effects of antidepressants through changes in the language used in their tweets or in the way these people used Twitter.
In a previous study, the team of researchers observed that users of Twitter who potentially suffer from depression display specific behavioral and linguistic features. This article focuses on the changes in the features of the messages that may be associated with treatment with antidepressant drugs.
The most notable results revealed that during periods in which users stated they were receiving antidepressant drug treatment, their Twitter activity increased with longer messages but posting fewer messages at night. They also interacted more with other users (for example, through an increase in number of mentions per tweet, which may reflect an interest in interacting with other people) and also an increase in positive emotions related to happiness and surprise. “We can state that the behavioral patterns of people who are in treatment with antidepressant drugs change and tend to resemble those of people who do not suffer from depression,” Angela Leis says.
There are various types of antidepressant drugs, and this study focuses specifically on selective serotonin reuptake inhibitors, which are the most commonly prescribed drug for treating depression. First, they selected timelines of users mentioning SSRI antidepressants in their tweets. “We then analyzed changes in behavioral and linguistic features in the tweets posted while users were in treatment, in comparison with tweets posted by the same users when it was less likely that they were taking these drugs,” Francesco Ronzano explains. The study included 186 users and their timelines with a total of 668,842 tweets.
“The use of techniques based on big data and text mining, which enable detecting changes in the way in which users interact in social networks such as Twitter, can provide us with new opportunities to follow up and monitor patients suffering from one of the most widespread, disabling health problems,” concludes Ferran Sanz, full professor with the UPF Department of Experimental and Health Sciences (DCEXS) and director of the Research Programme on Biomedical Informatics (GRIB) of the IMIM and UPF.
Dr. David Healy says
Annie
This hits me as bananas. We need instead to use the most sophisticated instrument ever created – someone asking someone else what is happening to them. I can think of nothing more mindless than analysing tweets
David
annie says
A ‘bunch’ – of bananas…
If we were in ‘a more normal time’ a more balanced discussion with that patient should have been happening well over 20 years ago…
“The easy option is to give some medical treatment – an antidepressant or possibly something to help with anxiety. If we were in a more normal time we would be having a more balanced discussion with that patient to discuss what they wanted and what was available.”
The number of antidepressants prescribed has been increasing during the last 20 years and GP prescribing data analysed by BBC’s Wales Live showed that trend has continued.
Covid: More antidepressants prescribed but therapy down
By Lucy Ballinger & Alex Jennings
Wales Live
2 hours ago
https://www.bbc.co.uk/news/uk-wales-56087135
Antidepressants should not be used as a “sticking plaster”, a charity has warned, after prescription numbers “accelerated” during the pandemic.
Dr. David Healy says
Annie
The words are tricky – the number of new people getting antidepressants remains the same but the number of prescriptions keeps rising because 90+% of scripts are for those who can’t get off the meds
David
susanne says
Uggh Annie – what a dirty job – digging around in peoples’ tweets.
Sherry Julo says
Thank you for sharing your story. It’s astounding how many people are going through this. I’ve found that most of the medical community (doctors, nurses, etc.) refuse to listen, make up excuses, and deny what people are telling them. Instead of doctors/nurses supporting and helping their patients taper slower when they experience horrible withdrawals or helping them reinstate safely, their solution in most cases is to prescribe more drugs that exacerbate withdrawal symptoms that can last several months or years.
My psych doctors solution for me after a fast taper, enduring horrific withdrawals was to add more drugs making my symptoms much worse. Out of desperation I formed an online FB support group (EFFEXOR (Venlafaxine) Tapering, Discontinuation Syndrome and Protracted W/D) to try an understand what was happening to me which lead me trying to fix myself and others going through the same thing. In the beginning it was hard for me to wrap my head around the fact that many psych doctors harm instead of listen, support and heal but it happened to me, yourself and several others everyday. People join my group who are desperate for answers and support their not receiving from their doctors. It’s heartbreaking the stories I read everyday and should be criminal what some of these doctors are doing to people.
Anne-Marie says
This may not be as bad as it sounds because SSRIs do change personality’s. lf you think about it for one min if they had done a research in an emergency call centre on people taking SSRIs they would have learnt a lot more. People like me for instance and I know I am not alone there are many more people like me out there who have done the same and probably still doing so on an SSRI, Akathisia was behind it along with alcohol and OCD induced type pressure of speech (whatever you want to call it) it is all relevant. I would love them to do a research in an emergency call centre looking out for that type of SSRI type behaviour. Any recognision of the problem would be welcome to help educate people who work in the system to stop people from suffering anymore.
Anna says
Thank you Ed, a brave, honest transparent story highlighting powerfully how tough it really is, even for those of us with a high level of education. I can remember challenging my GP when he tried to ‘Taper’ me 33% in a month. I remember me saying ‘This is way too fast’ He actually raised his voice to me. ‘Do you think you know better than me? I replied yes I do. He refused to budge. At that point I was not sure what to do. I luckily found the number of BTP (Bristol Tranquillers Project) Who sent me some information. 18 days later, armed with’ The Ashton Manual and NICE benzo guidelines I ‘Persuaded him to allow me to reduce more slowly. Withdrawal becomes a lonely almost secretive business, I just about coped until 2 years later I jumped off the benzo.. (I had been on them 32 years). It was then I descended into Hell. It started with what I later realised was ‘Depersonalisation/derealisation.. I remember going to my son’ s Graduation and feeling so strange, as if I was not really there, all the buildings and roads didn’t look or feel real. I felt conversation (Mine and others lagged behind) It felt very weird. This went on for about 6 weeks and I was struggling to do my job (Psychotherapist) The clients did not seem to notice that I had ‘slowed down’… Then began the insomnia, struggling to drop off, and then waking up 2-3 hours later… Still I held off seeing the GP.. Then 8 weeks in the tingling in my head, hands, feet, nipples, vulva started, this terrified me. I went on ‘Dr Google’ phoned 111..111 told me to go to A and E.. So I did. I remember saying I had ‘Zizzing, like pins and needles, in all my extremities, the A and E Nurse smirked. After several hours I was hooked up to an ECG monitor, and bloods were tsken to this day I don’ t know what they were looking for, I told 3 Nurses and 2 Dr’s I had very recently stopped tasking benzos after 32 years.. No-“one acknowledged that could be why I had these symptoms. A few days later I went to my GP to get results.. Quote You have nothing to worry about. I asked GP what could be causing these symptoms.. I was told it was stress/depression and nothing to do with the benzos. By now the insomnia was extremely persistent, the tingling was constant, and an inner restlessness start I could not sit still, hated being touched or hugged, my resting pulse was 100,i could not concentrate, read even talk. I had to stop work. This was the first time in my life I felt so utterly incapcited. I did not want to go to GP, but my husband (who worked away from home in the week was worried) Unlike me he trusted The Dr could mske it better, provide a solution. So of we went. Yes Ed any desire to resist was futile. Indeed a frightening place to be. As I did not trust anyone at this point I decided literally not to tslk. My husband did virtually all the tslking and I just nodded in the right place. He asked them if it could be ‘The benzo withdrawal and was told no (4th Dr to deny it) Instead my’ Diagnosis was upped from anxiety and depression to G.. A. D… (No mention of akathsia) I like you Ed had no energy to question what was happening. I was prescribed Mirtazipine because quote ‘The Sertraline has stopped working. So we went home my husband relieved we had a diagnosis and medication, me paralysed by fear. He then ensured I popped’ The life saving Mirtazipine into my mouth, and I of course dropped Sertraline, which I had been taking for 14 years. I began to fantasise constantly about killing myself, I had never ever done that before. I used to look at knives, bleach, chargers in a new light, I put a plastic bag over my head, I tried to stay under in the bath, I made a noose.. But thankfully it was too hard to actually do it, and I really did not want to hurt my husband and sons, My husband took me back to Dr’s, she (6th one) decided to refer me to Psychiatry (First time in over 30 years). Ten days later we find ourselves in the out patients of the local ‘Looney Bin’ My words. The Psych was a female, in her 40s,she was surrounded by ‘students’ we were asked if I minded being observed.. ‘(I did but didn’ t say anything) I told Dr F, I was until 4months ago a fully functioning, paid up memember of society, with no Psychiatric history. Of course I made the serious error of mentioning my sister was ‘Bipolar’ That I think sealed it.. Dr F suggested I be admitted to :Looney Bin’ for observation. I was not keen (I should have said don’t worry I am Not suicidal) but it was put to me I would be in for 48 hours. Ed by this point resistance was futile. I was admitted that day. (Not under a MH Section) I had worked in a ‘Looney Bin’ for 5 years when employed by MIND so knew what to expect. The ward itself was tired and tatty, dull colours, dirty corridors bright harsh florescent lights. I was put in a dorm with 3 others, the bed was hard and basic, my stuff was searched and anything that was perceived as hazardous was removed. I quickly decided I was not going to tslk to anyone (My constant defence) so I lay on top of my bed in my Jeans and Tee-shirt. The woman opposite me was tslking at me incessantly, she was obviously agitated, and kept telling me about wanting to kill her Mother, she had been in the ward over 6 weeks. Usually I would give her a hearing but I just couldn’t be bothered. I remember she offered me a bar of chocolate, which touched me. I just told her I was ‘Clinically depressed’ There were two others who presented as quite unwell. I only got off my bed to go to the dining hall, where we were handed plastic cutlery. There were men in the dining hall. One was very loud, coarse and abusive, you had to be careful not to rile him. A couple of staff sat at a distance, not interacting. The food was crap, far worse than The food in a non ‘Looney Bin’ I decided apart from toast in the morning to avoid lunch and tea. Of course having no choice about when to eat or even have a cup of tea was strange. My husband, and sons came to visit, I could see the ‘panic and ill ease they felt, seeing me in such an environment (Maybe not such a great idea) At no point did I see Dr F or any other Psych, I just lay on my bed with the’ other nutters’and remained mute. I decided the only way out, was to tell them I no longer felt suicidal (Not true) 10 days later I went home. The CMHT insisted on daily visits, I detested most of them, with their stupid questions and tick boxes. Not once did anyone ask me what I wanted, needed. All of this time I retained full capacity, and was actually acutely aware of what was being said. When you are mute people assume you are not listening. Dr F also decided upon my leaving, the Mirtazipine was not working so try Effexor, 225mg,and add quetipine to the mix as it would help with sleep. The inner aka and insomnia and by now food deprivation were taking their toll. I began hallucinating, truly terrifying. But I was so scared of going back to the ‘Looney Bin’ I decided not to say anything. One day at 7am I decided to walk to a tall building in order to throw myself off. But thankfully when I got there you could not access high levels. I did not know what to do. My dog and boxsets were what kept me going. And the concern of my husband and sons, thank goodness, unlike you Ed my sons were 17 and 21….One thing Dr F did do was refer me to another Psyche(A behaviour specialist) The appt was 18th Sept nearly a year since this had started. I decided just maybe this guy could help. I mentioned to him I admired Professor David Healy, he smiled and said he knew him. I cannot tell you the relief. He said he believed most of my symptoms were consistent with benzo withdrawal. The relief, the fact I was not stark staring crazy. That day I went home and decided to fight back… I started slowly walking the dog.. Eating regularly, going back on the Internet, oh the joy of finding groups like benzo buddies,Risk. OrgLet’s talk withdrawal, prescribed harm UK, Inner Compass, authors, scientists, like Robert Whitaker, David Healy, Peter Gotzche, James Davis, Peter Breggin, Joanna Moncrieff. Campaigners like, Barry Haslam, Jo Watson, Peter Gordon, Marion Brown, Bob Fiddaman, James Moore, Laura Delano, John Read.. I, d finally found my tribe. I even emailed Professor Malcolm Lader, an acknowledged ‘Expert’ in benzo withdrawal, and even he said ‘Find help online’…. I have not been near a GP for nearly 3 years… Today, I am much recovered, back working, sleeping and eating normally. Like Ed, I like to help others raise awareness. I am slowly tapering Effexor and am currently down to 24mg.Thoughts of suicide couldn’t be further from my mind. Even my husband is beginning to question the trustworthiness of Dr’s, especially Ed reading articles like you and Peter G have done for major Newspapers…
mary H says
I really do feel that something should be done with accounts like yours, Ed’s, Annie’s, Bob’s and so very many others to bring the reality of what can happen to the notice of the general public. Does anyone know anybody connected to ‘Led by Donkeys’? I’m sure they could create quite striking billboards to illustrate your (collective) suffering.
Another idea would be to collect as many as possible and get them together on a website where we could print them out and put together as simple books or leaflets. May cost each of us a fair bit in printer inks and paper – but worth it if we could break through that wall of disbelief that we so often meet.
Ed White says
Thanks for writing this Anna. I’m so sorry you suffered so much.
I feel like you helped fill in a lot of the details I could not fit in to my article. “Withdrawal becomes a lonely almost secretive business” is spot on. Even now I feel like I should be secretive about my tapering (even though I’m not). It’s a very weird experience.
I haven’t seen one person write anything positive about psych hospitals. Why is it that an environment that really needs to be kind, accepting and nurturing always appears to be the absolute polar opposite!
I should have mentioned in my article that I did have a minor win at the end of my psych services experiences. I got a psych to admit, in writing, that I suffered “severe discontinuation symptoms”. It was such as a shame she had to ruin it by appending, “with a history of anxiety and depression”. Silly cow!
Juliette Peters says
Oh my Goodness, what a grueling but excellent & Authentic account Anna. Thank you for your courage to share these experiences, let alone so articulately. These are the types of authentic lived experience accounts that the world needs so much more of, & to get out there, uncensored.
In keeping with Ed’s sentiments re your above account, I also am so sorry that you suffered so much. Disgraceful all round, but so pleased that you are much recovered, & that your husband is more skeptical.
tim says
GMC Decision Making and Consent – 9th November 2020
Shared decision making and consent are fundamental to good medical practice.
This guidance explains that the exchange of information between doctor and patient is essential to good decision making. Serious harm can result if patients are not listened to, or if they are not given the information they need – and time and support to understand it – so that they can make informed decisions about their care.
annie says
What a blinder you have written here, Anna.
We know, we can totally accept the story.
What stuck out for me, apart from the obvious very, very disabling symptoms and the ‘suicidal’ grasp was “I persuaded him to allow me”.
Why should any patient have to persuade, and why should any doctor allow.
Allowing a patient her wishes is such an awful thing to have to do.
This has happened so many times when the patient is almost in warfare with the doctor.
How many times have we been through this, the constant ‘warfare’ with a doctor.
Your story really hit-home to me, the ‘loony bin’, the other ‘patients’, the awful ‘solitary’ – what am I doing here?
Honestly, it makes you wonder if Samizdat should produce a New Novel, The Ultimate Guide to Dealing with Your Doctor…The Patient in Crisis…
The Patient Stories, like yours, and Ed’s and Peter’s and Katinka’s and Kristina’s and Leonie’s and all the others who have never let this go could create the most wonderful Compendium of Harm – because something needs to get in front of every doctor who is and does, become objectionable…
because let’s face it, if they don’t stop ‘laying down the law’ to their patients, in their indomitable fashion, there is little hope for the next one ‘walking through the door’ …
Anna says
Annie Thank you for your kind, comment, it was quite therapeutic to write it, Do you really believe 6/7 Dr’s didn’t believe it was ‘withdrawal? That’s what in hindsight shocked me. Also if you admit to feeling suicidal, the only option open to them was a’ Psyche ward..
In my dreams I would love to see more help for patients suffering severe side affects, also a safe, calm space, staffed maybe by peers a humane Dr, a person centred Therapist to help those feeling suicidal…. A space where family too can help.
susanne says
I remember a while ago a few people were suggesting producing a book using experiences such posted as comments to the blogs. ?now Samizdat has been set up and proving it possible to sell, is the time ripe now? There was a suggestion that people might like to write a book for Samizdat recently – maybe a collection as well as an individual book would be possible?
The situation in S Wales is dire as shown by the programme shown on Wales Live yesterday The man who spoke out, without hiding who he was. described how his depression was getting worse – phoned GP, who asked if he was hearing voices, no, so decided to increase dose of meds. without any further discussion. The prog concentrated on the need for more therapy when knowing it hardly exists in Wales but missed a golden opportunity to warn people about the potential for harn caused by the massive number of prescriptions in areas like Merthy Tydfil – which is always good for a story on the most deprived areas in Wales. The minister for mental health concentrated on the money being poured into services but frustrated the presenter from finding out what exactly it’s used for except that they are tackling alternatives to medicalisation of mental health. GPs were apparently the ones to have the information people need to find alternative projects – but truth is GPs in the area are a disgrace There was a publication consultaion 2 years ago to find what people thought of them but what it led to is another bunch of paper it seems .If they have been given the info about alternatives they are not using it. In general GPs seem to be the numb of the problem everwhere. In England people can self refer GPs are still the gatekeepers in Wales. Are they to some extent being used as scapegoats , awful as they are too often. The college of psychs should be making a visible contribution. Hopefully though they will not be the mental health specialist people are calling for to be attached to surgeries,
MIND gave the usual safe statements, that medication can be useful but is over used – they need to stop playing footsie under the table with the Welsh government, they have always done this but are the useful go to for ministers who want to hide the truth They had a golden opportunity to mention the adverse effects of multiple prescriptions exactly as happened to the man who spoke out for the programme but didn’t.
What was mssing altogether was any appearance or statment from the Welsh college of psychiatrists. Have they all run away across the Severn bridge to England? Who are welcome to to them.
annie says
This looks tasty – A Break in the Wall
https://samizdathealth.org/
A Break in the Wall is at once a bold satire of contemporary psychiatry, and a chronicle of the hubris of the wounded healer. Death is not the only ending. There is also madness, which, like prison, is easier to enter than to leave…
In a bid to save his psychiatric career, the nameless doc turns to prison research. He seeks the answer to one simple question, but nothing is ever simple in the prison jungle. Under the spell of Marxist agitator and prisoner, Antonio Gramsci, the psychiatrist begins to fear his own psyche. His research is sabotaged. Detached observation of prisoners as scientific data gives way to experience – of futility, despair, and dread. The wall of his psychological defences finally broken, the doc is lured to commit a terrible crime which Gramsci exploits. But when a path to redemption opens, can the doc make it through?
Anon says
If some pharmaceutical companies are dodgy, what makes one believe that all doctors are sincere and genuine?
Some doctors/lawyers believe they are a Law unto themselves!
It is not what you know but who you know!
Justin Oxley says
There is a paper that says it has new information about binding sites of ssris, about time I’ve been waiting ages it’s time someone figured this out.
https://www.technologynetworks.com/tn/news/new-information-uncovered-on-the-action-of-antidepressants-345803
I had a feeling science people who know more about this than I do would probably be doing this sort of thing, it does get a little bit complicated. If they can do this so thoroughly I don’t see why they can’t do something similar that focused on the TRP channels for example. I’m not sure if you can go in this sort of direction to discover cures it really is a bit beyond my comfort zone. I got as far as thinking about Tetris with molecules and that was it really.
https://www.cell.com/cell/fulltext/S0092-8674(21)00077-5?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0092867421000775%3Fshowall%3Dtrue
susanne says
On Rxisk Justin – Is it a break-through though?
Bait and Switch: the Great Ketamine “Breakthrough”
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March 4, 2019 | 29 Comments
Justin Oxley says
I was just pointing out how complicated these experiments get and the papers are very dense with information and difficult to read. I like simple and straightforward measurements I like to just put a multimeter across a battery so I know how much charge is in it. The simple straightforward measurement and instrumentation sort of stuff I can understand. I think it is very difficult to ‘know’ these drugs exactly from even the most elaborate investigations.
Justin Oxley says
Knowing what is going on with an ssri in the body is not a simple experiment like putting a meter across a battery in order to measure the voltage. I tend to have trust in what can be measured and known.
https://www.researchgate.net/publication/41668673_Targeting_ligand-gated_ion_channels_in_neurology_and_psychiatry_Is_pharmacological_promiscuity_an_obstacle_or_an_opportunity
I tend to like the way Richard Feynman thinks about things, his lectures are very good, he was a very good teacher and funny at the same time.
https://youtu.be/tWr39Q9vBgo
susanne says
Could you make a sudoscan gadget to measure nerve conduction ?(if I am putting that the right way_) David H was looking into that some time ago_ as a possibility for investigating sexual dysfunction
Justin Oxley says
I found this one about crowdsouced molecular Tetris and haptic feedback controllers. It sounds a bit peculiar but it is a thing apparently.
https://scholar.google.com/citations?user=9CxY4tsAAAAJ&hl=en#d=gs_md_cita-d&u=%2Fcitations%3Fview_op%3Dview_citation%26hl%3Den%26user%3D9CxY4tsAAAAJ%26citation_for_view%3D9CxY4tsAAAAJ%3AIjCSPb-OGe4C%26tzom%3D0
Justin Oxley says
This discussion is about the TRP channels. There are similar talks on this YouTube channel along the same sort of lines. You might be interested to watch them.
https://youtu.be/3Ja-IwkJak8
chris says
RIP Ed White – how many thousands of people have been subject to what Ed very well writes about in his own treatments – utterly disgraceful and a crime against humanity. I know he is correct: it happened it me.
Bryan says
Speaking of which, this New Yorker article is a treasure trove of info on this very topic and other antidepressant related info: https://www.newyorker.com/magazine/2019/04/08/the-challenge-of-going-off-psychiatric-drugs/amp