Antidepressant Withdrawal: Avoid Doctors?

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February 15, 2021 | 36 Comments

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  1. 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’ …

      • 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.

    • 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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?

  6. 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

  7. 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!

    • 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.

  8. 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.

    • 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

      • 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.

        • 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

  9. 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.

  10. 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.

  11. 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…

    • 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.

    • 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!

    • 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.

  12. 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.

  13. 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’ …

  14. 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.

  15. 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.

  16. 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?

  17. 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!

  18. 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

  19. On Rxisk Justin – Is it a break-through though?
    Bait and Switch: the Great Ketamine “Breakthrough”
    [printfriendly]
    March 4, 2019 | 29 Comments

  20. 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.

  21. 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

  22. 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

  23. […] Ed spoke out openly and often of his experiences, always aiming to encourage debate and allow voices to be heard. He was selfless in his dedication to raising awareness and challenging misinformation. In January 2020, he was interviewed by Sky News in the UK and in February 2021 he wrote an important blog for David Healy’s Rxisk.org entitled Antidepressant Withdrawal: Avoid Doctors. […]

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