Illnesses Worse than Side Effects?

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February 13, 2017 | 18 Comments

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  1. As we have all said countless times, we know when it is the drugs…we have extraordinary ‘symptoms’ like Akathisia which we know don’t come out of nowhere…they come out of somewhere..

    It takes, in a way, an older person, to know when a corridor full of psychiatrists and other medical doctors are throwing random piles of drugs at you. First, one, then another, ad nausea, and it takes a rare soul to ‘drop the lot’ and expect to return to normal.

    That is impossible.

    What is mostly impossible was deciding that actually I do know myself better than anyone else and actually how could this situation arise if it weren’t for the queue stretching from Land’s End to John Groats making spurious, unfounded, medically inaccurate assumptions..

    Too many buckle under the thumbs of those in ‘control’ and I thought it might be a good time for Monica to talk to us, posted yesterday, who is completely loyal to her brigade of readers, and, who so wisely and eloquently pretty much sums up the content of this new post.

    There are innumerable persons who have relinquished their identity to the ‘Madcaps’ and Katinka and Monica are just two examples who won’t take it lying down..

    Everything Matters..

    The very lovely Monica Cassani: Beyond Meds:

    Listen with Monica and her Anniversary..

    https://beyondmeds.com/2017/02/11/birthday-anniversary-yr-seven/

    ­”My story of iatrogenic harm was shared in November a few years ago on Dr. David Healy’s website Rxisk”

    Monica’s Story: The Aftermath of Polypsychopharmacology

    November 12, 2012 | 59 Comments

    https://rxisk.org/monicas-story-the-aftermath-of-polypsychopharmacology/

  2. From our experience, the last person to realise that their condition seems to have been created by their medication is the patient himself. It can be blatantly obvious, to the onlooker, that matters have taken a sharp turn for the worse with the addition of a new medication or an increased dose of the existing drug. However, the feeling of being inferior to the prescriber takes hold – and time passes on. Discussing matters with the patient is, invariably, akin to having a chat with a brick wall. Most times their concentration is so poor that even your first sentence trails into oblivion. At a time when concentration is stronger, you may be met with a look of horror at such a suggestion – resulting in such quips as ” how come you think you know better than doctors” or ” are you trying to make things even worse for me?”. In other words, there is no easy way out.
    Fast forward about two years and the drugs are being reduced ever so slowly. The realisation that some doctors don’t know best is firmly set in the patient’s mind. Reductions produce very real problems – but moving on is towards ‘better days’.
    Looking back, those years on quite high doses produced so many nosedives resulting in increased doses which seemed to stabilise matters for a short spell before things progressed to the next crisis – there were no ‘better days’ and the hope of such times had all but disappeared.
    How did this change come about? It happened, as it slowly dawned on the patient that, actually continuing in this way was hopeless. That giving an alternative a try could certainly not make matters much worse than they already were. His determination suddenly kicked in and nothing would deter him from having a go at ridding himself of the drugs and their nasty side-effects.

  3. “Depressive psychoses are vanishingly rare compared to treatment induced akathisia”.

    So when a psychiatrist misdiagnoses the latter as the former (even when the presenting history, prescription medication history and family description of SSRI related, overwhelming agitation and inability to be still should make accurate diagnosis achievable) – – why is that person condemned to carry the label-for-life of “psychosis” – and likely finish up secretly recorded on the Serious Mental Illness Register (S.M.I. Register)?

    Why can there there be no hope or possibility of redress?
    Even an acknowledgement of error and an apology?
    “Where is their Duty of Candour”?

    Simon Wessely recently stated: –

    “Any Diagnosis That We Make – You Shouldn’t Take This As Being An Absolute Certainty”.

    Something of an understatement for those with unrecognised, unbearable akathisia, misdiagnosed as psychotic depression, then sectioned and forced to take more akathisia-inducing fluoxetine and olanzapine.

    To ensure correct context,
    S.W. was referring to his speculation that George the Third may have had bipolar disorder.* (Why not a toxic psychosis?)

    Yesterday (12/02/2017) – BBC Radio 5.
    A one hour broadcast focusing on pronged SSRI antidepressant treatment and resulting withdrawal syndromes, failed to make any reference to SSRI,
    withdrawal-induced akathisia.
    (Adrian Goldberg, Five Live Investigates).

    Many G.P.s appear never to have heard of akathisia (even though it is likely that their own SSRI prescribing produces most of the 20% of patients who develop clinically significant akathisia on antidepressants) and hence, are themselves responsible for this common and catastrophic suffering and its destructive sequelae!

    Yes, the “corrected and adjusted” clinical trials data hid akathisia as hyperkinesis.
    Yes, there was description of akathisia induced by SSRIs in the abandoned 1983 Leeds trial in healthy volunteers.
    The cover up runs for some 30-35 years at least.

    What will it take to include AKATHISIA in the undergraduate and post graduate medical education curriculum? – – – “A” is for AKATHISIA.

    To be addressed during Continuing Professional Education/Development?

    How long must this devastating iatrogenic condition remain medicine’s best kept secret, and the mystery that must never be mentioned in the coroner’s court?

    The duty to educate doctors has been taken up by patients and families who have had their lives devastated by this intolerable professional lack of awareness.
    Of course, we would not be aware ourselves were it not for a courageous minority of more knowledgeable and caring psychiatrists and physicians who have had the courage to speak out.

    I will be offering RxISK’s excellent information on akathisia to every member of NHS staff I meet — (at least those who may tolerate my compulsion to try to save others from the total personal destruction that so often results from the current inexcusable levels of prescriber ignorance and complacency).

    *In “George the Third, The Genius of The Mad King”. BBC 2. 30/01/2017.

  4. Brilliantly put Tim, interesting about George III. Haven’t listened to the programme yet but wasn’t he supposed to have porphyria. When Olly was manifesting akathesia (which we now understand) in front of our Home Treatment Lead psychiatrist but we didn’t know what akathisia was ( and I bet he doesn’t even now 4 or more years later) we asked him if Olly’s problem could be porphyria, as Olly had skin problems again and was complaining of various physical symptoms that fitted that description. We were so desperate to understand what was happening to him. We were, of course ridiculed. I’ve just Googled porphyria and see it has something to do with liver enzymes and toxity so maybe not a million miles from akathisia after all?
    Great comments too from Annie and Mary. Lots to think about. Thank you!

  5. This is genuinely scary – because clozapine treatment is undergoing a renaissance in the USA. And leading experts in psychiatry are loudly advocating for expanding its use much further. Take this bit from the glossy pharmaceutical-industry rag Current Psychiatry:

    “Although clozapine is the medication with the clearest benefits in treatment-resistant schizophrenia, many eligible patients never receive it. In the United States, 20% to 30% of patients with schizophrenia can be classified as treatment resistant, but clozapine accounts for <5% of antipsychotics prescribed. Clinicians worldwide tend to under-prescribe clozapine—a reluctance one author coined as “clozaphobia.”

    “Admittedly, clozapine has had a turbulent history—both lauded as a near-miracle drug and condemned as a deadly agent. The FDA has overhauled its prescribing and monitoring guidelines, however, offering psychiatrists a perfect opportunity to reacquaint themselves with this potentially life-changing intervention.”

    It’s portrayed as a uniquely effective medication that can restore “hopeless” patients to a normal life. It’s even managed to get FDA approval for “preventing suicide” in people with psychotic symptoms. Strange, in that it can also cause symptoms that can lead to suicide.

    The only risk usually mentioned is agranulocytosis, a rare but serious white-blood-cell disorder that can kill you, but apparently affects less than 1% of users. The official line is that “hysteria” about a handful of agranulocytosis deaths in the 1970’s has blocked use of this life-saving drug. The strict monitoring put in place to prevent this has now been loosened a bit by the FDA under political pressure.

    Note the reference to “clozaphobia.” Not a good sign. Much too close to the epithet “opiophobia” that has been used to shame and coerce doctors into prescribing more opioids like OxyContin. That didn’t turn out too well, did it?

  6. There seems to be a big, empty, silence on this subject..

    ‘The Life’ Scientific..

    Today at 9.00 am

    Simon Wessely on unexplained medical syndromes

    The Life Scientific
    Listen in pop-out player

    Professor Sir Simon Wessely has spent his whole career arguing that mental and physical health are inseparable and that the Cinderella status of mental health funding is a national disgrace.
    His current role, as President of the Royal College of Psychiatrists, has given him a platform to bang the drum for parity of funding, better training for doctors and the need to reduce stigma around mental health (and armchair psychiatrists who think it’s OK to diagnose the new American President with a mental illness get short shrift as well).
    Professor of Psychological Medicine at the Institute of Psychiatry, Psychology and Neuroscience, part of King’s College in London, Simon Wessely has always been fascinated by those puzzling symptoms and syndromes which can’t easily be explained. So it was perhaps inevitable that he would find himself at the centre of research trying to explain the distressing and debilitating illness, Chronic Fatigue Syndrome.
    Threats and abuse finally led to him leave this particular research field, and he moved instead to military health and another complex illness which appeared after the first Gulf War in the early 90s, Gulf War Syndrome.
    Years of detailed epidemiological studies about the health of British troops followed through the King’s Centre for Military Health Research and many of the findings had a direct impact on policy within the armed forces.
    Yet for somebody who has spent years as a psychiatrist treating patients with serious mental illness, Simon tells Jim Al-Khalili that people are tougher than many in authority give credit for and his research has had a major impact on the way we treat people after traumatic events. We used to think “better out than in” but studies showed after the London 7/7 Bombings for example, that jumping in and getting people to talk through the trauma straight away can actually do more harm than good.

    http://www.bbc.co.uk/programmes/b08dnr3g

    Chaired by Dr Clare Gerada, Medical Director, NHS Practitioner Health Programme this one day UK wide physician health summit aims to bring together learning and experience in delivering care and support to doctors who became unwell, ensuring they can remain in or return to safe, effective clinical practice wherever possible.
    The NHS Practitioner Health Programme is a confidential NHS service for Doctors and Dentists with Mental Health and Addiction issues and will be hosting this day aimed at those with an interest or expertise in physician health, and those managing and supporting doctors struggling with health difficulties.
    Clinicians delivering care; organisations offering support; Medical Directors, Clinical Directors and HR working with doctors; and practitioners themselves will all benefit from an increased understanding of the issues facing doctors who are unwell, the best strategies to support and treat them and how to reduce and prevent ill health in the medical workforce.

    http://linkis.com/co.uk/NKEy6

    Perhaps the Confidential NHS Service for Doctors and Dentists with mental health and addiction issues will talk about mental health and addiction issues..

  7. To NOT CARE is part of SOME of medical professionals, way of thinking.
    Some clinicians strangely believe that these medicines possibly can’t harm some patients because it is not highlighted in their medical literature.
    Out of x amount of patients, what is the probability of self-harm or other undocumented illnesses, that result from ingesting these pills?
    I am so convinced that the medical/legal establishment are not so ignorant as they claim to be!
    They have known for a long time, what is going on however, it is a crying shame when we all stand back and continue as if nothing is happening!
    When I ingested that one lethal pill, I was in complete agony as the above article states and the thought of ending my life, would have been a welcoming relief than put up with the unbearable agony of pain and suffering.
    No one, would understand the depth of pain and suffering, unless they have been through the agonizing torture, themselves.
    So, they (whoever they are?????) have known about these devastating adverse effects for 30-35 years and what has anyone done to improve the situation surrounding these medicines???
    For those who have silenced me and have maltreated me, I wonder how you go to sleep at night knowing that somewhere, at any given moment there is someone trying to end their own life because the pills that were prescribed are causing agonizing pain and suffering.

    1. What are we going to do about it these tragic circumstances?
    2. What can we do to create positive changes so that people do not have to suffer or end their life because of the pills they ingested?
    3. What are we going to do to in regards to the behavioural changes people display (aggressive/violent) when they ingest medicines?
    It is not good enough when we sit back especially, when there is plenty of evidence that is just being completely ignored.
    We, the people have to somehow get together and turn everything upside down, in order to create the necessary changes to a futile system that no longer works!

    • Carla, yes, WHAT ARE WE GOING TO DO?
      I wake up every morning thinking this.

      Well, if we believe in the premise that good overcomes evil, and we seem outnumbered by the so-called ‘might’ of Big Pharma, its proponents, its careless prescribers etc, then maybe the Power of the Universe can help. Indeed, I feel SURE it can. At the risk of sounding cookie (and frankly, who cares, what do I have to lose?) we need to decide what we really want, and collectively visualise achieving it.

      Laurie Oakley set down some excellent criteria for the Candle Vigil on 2nd November 2016 (see facebook page for Olly’s Friendship Foundation.org). Those words encapsulated for me exactly what we want in terms of improved mental health, and limiting the excesses of Big Pharma. I propose that at 11pm, every night, just before sleep, anyone who wants to participate in this thought process, spends half an hour visualising a world where Lawrie’s ideals have become the norm.

      Let’s start on Saturday 18th February. The important thing is to BELIEVE it can work. (Just like a placebo 🙂 ….). Set a time limit on it – ask the Universe to show us tangible results by 18th March. Then, let’s confer on this Blog then, those of us who do it, and report progress. Anyone up for this? You can remain anonymous, it’s your thoughts that count, nothing else….

      • A modern-day healing – of course it’s worth a try. It is no longer fashionable to mention the power of prayer in healing or overcoming evil – but the need for some power beyond our understanding is greater than ever. Does it need to be at a specific time? I’m not sure that it needs to be ‘collective’ in that sense – rather that our daily thoughts need to be positive and aiming for the change that we desperately wish to see.
        Maybe we should have a month ( the dates as given by you) during which our total energies are aimed towards our goal. Handing out Rxisk info at every chance ( I use credit card-sized bilingual cards), supporting local groups dedicated to helping mental health sufferers ( by contributing raffle prizes or a tray of cakes with a Rxisk info card attached maybe) – such activities would focus our minds; then maybe end each day with a thought to our ‘god’ of whatever shape or form, asking for support for the cause and for ourselves.
        Perhaps, for the force for good to have the best chance of supporting us, we should ensure that any comments that we send to both of these sites should be positive too – to move us forwards rather than looking back.
        Once things are as we would like them to be, there will be plenty of time to reminisce about the ‘bad old days’. Yes Heather, I’m certainly with you all the way.

        • This is great Mary, some really good ideas here. And no, it doesn’t need to be a specific time, I myself put a couple of nightlights in lanterns (for safety, no unattended open flame) in front of a picture of Olly every night, because it focuses my mind, but that’s just my own personal method. I do think working on this mental focussing for a set period, for a month from 18th February to 18th March, is a good idea, and then we can look at results.

          Like Mary says, we need to look forward constructively, not backward in negativity. This is what the Law of Attraction is all about.

          ‘The course of the world is not predetermined by physical laws….the mind has the power to affect groups of atoms and even tamper with the odds of atomic behaviour.’ Quote from Sir Arthur Stanley, English Mathematician and Astrophysicist.

          We are ALL already making progress. The Butterfly Effect and the 101 Dalmations principle, are working, both within these Blogs and without them. it’s my next task to make a painted board with the word (capital letters) AKATHISIA picked out in battery operated fairy lights. I can then produce this with a flourish wherever I go. Up until now I have just been using a cardboard banner. I think the AKATHISIA issue is the most crucial to tackle, and the rest of our struggles can fall in, like an army regiment, behind this.

          I ‘m not suggesting witchcraft here, of course. But we do need to harness a power greater than Big Pharma. And back in centuries gone by, the power of the mind was respected, and dare I say it, feared. We need to fire a rocket up the backsides of Big Pharma, a Good Intentions rocket, mind you. Be mindful that bad intentions always boomerang back to the instigators. But good ones fly to their targent with superhuman force, and definitely work. There’s no harm in really shaking up Big Pharma, collectively however, they’ve been cruising for a supernaturally empowered bruising for a long long time. And oh, what joy it will bring, to see results at last! Remember, the power of imagination is unparalleled. Everything that ever was, came from a imagined idea.

  8. You never know how much you are going to RXISK,
    when it comes to your health.
    So, if you won a lot of chips,
    take the winnings and stop gambling.
    Just like the casino never looses
    neither, does Big Pharma!

  9. The thing that really p***** me off, (please excuse my language), is that whilst we are trying to put our lives together, the best way we can, those who create these evil pills are enjoying their lives, at our expense.
    It is not about revenge.
    It is about setting the records straight and making the wrongs right! ~ nothing more, nothing less.

  10. Carla, I’m not sure that you’ve seen Mary and my responses to your comments on February 15th? You posed the question, “what are we going to do about these tragedies” relating to the list you gave. I came back with a suggestion for your perusal, and Mary has endorsed it. Forgive me if you’ve seen this, but in case you haven’t, sparked by your “WHAT ARE WE GOING TO DO”, Mary, Jane, we and many others are running another “Thoughtful Approach to the Universe”, like we did the Candle Vigil on 2nd November, All Souls’ Night 2016. We are running it for a full month, from 18th February (our son Olly’s birthday) to 18th March. Lighting a candle is optional. See Mary’s ideas on this string, and mine for more details. There will be more details too on the Olly’s Friendship Foundation facebook page this coming week. We are using the excellent words of Laurie Oakley again as the criteria for sending our heartfelt wishes to the Universe. On the Olly site, well over 600 people have already seen that we are doing this and hopefully will join us. Then we can look at results as regards progress re recognition and any good changes, by 18th March. We don’t have to stop then of course, but according to the Law of Attraction, we need to set out exactly what we want in our questions to the collective Force of the Universe (or in our prayers to God – whichever we feel is right for our own belief system) and set a time limit. A month, as we watch the arrival of Spring with its yellow daffodils and snowdrops, seems a good start.

    The Olly’s Friendship Room was opened on what would have been his 37th birthday, using money he left, to help local anxiety sufferers and spread RxISK information. We hope to show pictures of it on the Olly’s Friendship Foundation facebook site, as well as setting out the address I gave to the 70 or so people who came to the ceremony, and in which I talked about AKATHISIA and the wonderful work RxISK.org does.

    As Mary says, we MUST fight on, raising awareness, and we hope you Carla, Annie, Anne-Marie, Laurie, Tim and all the other wonderful contributors to these Blogs, will join us and spread the word, if you are in agreement.

  11. Thank you Heather & Mary, for your reply.
    Sounds like a brilliant idea.
    I love how you are creating awareness, on behalf of your beautiful son, Olly, in a peaceful way.
    I will definitely light a candle, and say a prayer for everyone and hope that what ever we send out to the universe, creates the necessary changes for the betterment of mankind.
    Love Carla

  12. Brilliant Carla, thank you for your lovely supportive words.

    A book that has good quotes on how this energy can work, with experiments, and worth a read, …’E-squared: Nine-Do It-Yourself Energy Experiments That Work’ by Pam Grout. The power of the mind is fantastic and so many folk dismiss it, but if placebos can work, doesn’t that show us something? The trick is to raise the vibration, cultivate hope, believe we can do just what you Carla, have put into words so well;

    ‘Create the necessary changes for the betterment of mankind.’

    Onward and upward. Nothing ever happened till someone imagined and visualised it. We can do this, and create those changes, we just have to KNOW that we can, and not ever doubt the collective power we have.

  13. Albert Einstein apparently once said:

    “Setting an example is not the main way of influencing others, it is the ONLY way.”

    Not sure how we can use this to improve the standards of Big Pharma. We need a media platform to get our example noticed, a radio/TV RxISK station maybe? It could feature items on latest insights into medications, interview those who take them, offer ways of coping with anxiety etc without needing drugs. Back in the 1950s and1960s the BBC ran an afternoon programme called ‘The Silver Lining’ on what was then called the Light Programme. It had contributors like psychiatrist David Stafford Clark. There were also some spiritual contributors, so it was aimed at a wide audience, giving lots of viewpoints but it’s major effect was to inspire those grappling with life’s problems, and give them HOPE by offering ideas, by hearing how others were coping. We quoted a piece from it on ‘Loneliness’ in our Opening Ceremony for Olly’s Friendship Room last Saturday. The accent was on ‘Fellowship’ – being aware that we are all linked together, what affects one, affects all. We may think it doesn’t, but it ultimately does. Olly loved ‘The Fellowship of the Ring’ and we played ‘Concerning Hobbits’ as his Friendship Room was officially opened. That little tune is so like him, poignant, uplifting, hopeful, chirpy.

    Although we have the excellent Blogs here to regularly read, wouldn’t it be great if there was a weekly RxISK.org YouTube presentation too, that we could access, featuring latest news, bonding all the RxISK followers together, making it easier for us to mount organised Protests as a united body. It seems to me that not only do these Blogs offer excellent medication and treatment information, but for many of us they offer a hopeful companionship and sense of belonging which keeps us going, against all odds. Maybe RxISK.org was not originally aimed at being more than an information service but it seems to me, regularly reading comments, that it is more than that. When Carla says in an earlier comment here ‘WHAT CAN WE DO TO CHANGE THINGS?’ she voices the frustration so many of us feel. We need to stand together and show ourselves a force to be reckoned with…. What about a book compilation featuring the stories of all/ many of those who have reported their experiences here, and sold to raise funds for RxISK.org? Please excuse me if my ideas are off the wall, maybe others could add theirs. I just feel we need to raise our game, spread the word, as Mary is doing this month. So these are just a few thoughts.

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