Fake News and the Great Purple Pill

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January 14, 2019 | 14 Comments

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  1. I have had first hand experience of being accused of falling for ” internet fear mongers”.

    One of the first responses from AWP to my complaint included something along the lines of ” Lots of things can be found on the internet. But because Post SSRI sexual dysfunction hasn’t been acknowledged by medicine as a real condition, I am unable to confirm whether you may be suffering from it”.

    I had sent in some information about PSSD from the internet with my complaint (from scientists and some doctors expressing concern about persisting sexual effects), and the implication was that I was a poor misguided patient who had swallowed hook, line, and sinker, some scaremongering on the internet about how sexual side effects from SSRI’s can persist after you come off them.

    The letter then went onto point out that depression and anxiety can cause lowering of libido, even after I had strongly stated I didn’t feel that my sexual problems had been caused by depression or anxiety, and had given detailed reasons why I felt this, including that depression and anxiety don’t cause genital anaesthesia or pleasureless orgasms. This important point was ignored by AWP, and they defaulted to blaming “other factors”.

    No matter what I said they would try and twist things around to make out “other factors” were to blame. It was always “other factors”, never the SSRI.

    What particularly angered me and made me feel very betrayed, is I actually found one GP (about the only GP who did know about PSSD), who openly told me he was an ex psychiatrist and had, had, a number of patients who had persisting sexual side effects from SSRI’s, that lasted for years after they came off SSRI’s.

    I became quite excited and realised that now I had a doctor who believed me and surely he would do the right thing and speak to my Psychiatrist (who he actually told me he knew).

    I did absolutely everything I could to get this GP who knew about PSSD to talk to my psychiatrist about PSSD, even getting my MIND advocate to write to him asking him to tell my psychiatrist he was aware that sometimes the sexual side effects from SSRI’s can persist when you come off them.

    He was having none of it, and politely declined to write to my psychiatrist.

    After asking him to speak to my psychiatrist about PSSD he turned quite nasty. He would do everything he could to avoid talking about PSSD, would shift uncomfortably in his chair whenever I brought it up (I used to mention it everytime I went to get a refill for tapering off benzos), and he would change the subject at every chance he got.

    He would try and keep our appointments as short as possible, often reminding me that my 10 minutes was nearly up (he never used to do this before I started asking him to talk to my psychiatrist about PSSD).

    Also once I came in with the written response from the MHRA saying they were looking into sexual dysfunction from SSRI’s persisting. I handed it to him to read, and he handed the piece of paper straight back to me within a second or two, without even glancing at it. I found this very rude and arrogant.

    No matter what I did he would not talk to my psychiatrist about his experience with PSSD.

    I felt particularly betrayed by this doctor. He knew about PSSD but he refused to help me, even after I had expressed to him the amount of distress the condition had caused me.

  2. Hi Spruce,
    So sorry to acknowledge your situation
    The turmoil some of these Drs put you in, is just unacceptable.
    If had a doctor like that, he would of been given the ‘flick’ a long time ago!
    You are already suffering from a problem you never had before you ingested these meds.
    If some Drs do not want to side with you, with all honesty, they are not worth your precious time.
    There is already enough information about the damages these meds are causing.
    If they don’t believe you, it is very demoralizing.
    You deserve better!

  3. ‘You were there for two years, why won’t you help me?’

    This was an email I sent in desperation to my doctor.

    I had no choice but to continue seeing the same village doctor who took me off Seroxat cold turkey and who was relentlessly dismissive, extremely rude and did not take any advice given by a psychiatrist. In fact, his advice was unanimously ignored by both doctors in the surgery and the practice nurse.

    Two years was a very long time to be hospitalised twice; the story of those hospital stays was not pretty. In actual fact, the whole process of drug withdrawal was not pretty.

    It took me a long time to realise how manipulated I had been, far too familiar with the patient …

    When a few years later, I took the bull by the horns, and directed my medical records back to the surgery, now living across the loch, the £99 I paid for boss doctor to read through my medical records drew an unexpected revelation.

    The invoice said, £99 for reading through medical records.
    That is quite a lot of money and I would have expected a thorough report.

    It was only as I got up to leave, that he dropped a bombshell about this drug and that drug …

    Verbal.

    My entire Seroxat Saga written up, recorded, over 40 surgery and home visits contain a muddled disjointed scenario with areas of malfeasance ..

    The lengths they went to subsequently, when everything had calmed down, was to end the matter which was easy for them to do …

    Like Spruce, I found an expected ally.
    A really great locum called me in and I was with him over an hour.

    Like Spruce, he wanted to remain anonymous ‘don’t tell anyone I said so’ remarks
    He even said, I went to your other surgery once, and never, never again

    So, we try so hard to get at the truth and it seems that at every turn we are knocked back and people should realise this is what happens – doctors can be ruthless, if pushed …

  4. Hi Spruce, Annie & (many others souls going through this relentless experience),
    I understand, only too well, your dilemma.
    This is why I gave up on Drs and the system a long time ago.
    I have very little tolerance for this very kind of behaviour and culture that fails to treat me with the dignity or respect, I deserve.
    Sadly, I am doing what they did to me. Rejected me when I needed proper treatment and care of just acknowledging that the meds caused me harm.
    When I hear/see that kind of ‘carry on’, I gently remove myself from a dismal situation.
    Once they damage you, either by: (the meds that they prescribe or a dodgy treatment they do on you), it is like no one cares and quite frankly, this is very problematic for people who need genuine care.
    I have no time for ‘childish games’ or professionals who are not willing to form a united front and say it as it is.
    Don’t want to be part of a culture that lacks integrity.
    My motto is:
    Man up or I will give you the ‘flick’ ~ If your or anyone else cannot be on the square, I am not giving any more of my time to you guys,
    Sadly, people just put up with this ‘nonsense’ because they are on the welfare system and have no choice. This must be totally gut-wrenching.
    Yes, I can empathise totally with this kind of hear/see/speak NO evil. (what a bunch of baloney!)

  5. Hi Johanna Ryan. You say “in my book” in your post but I can find it anywhere. Do you have a link?

    Thank you. Your cases are like ultradisease mongering. Best of the best.

      • Never read the expression Johanna, thanks for the explanation (and for the song!). You could write one :D. I would buy it for sure.

    • Hi Marc, when Johanna says ‘in my book’ she does not mean that literally – it’s just a saying which means ‘in my opinion’ or ‘the way I see it’.
      Johanna – brilliant piece and I like your continuation of the ‘sermon headings’. It almost got me paraphrasing a hymn for the ‘service’ –
      ‘All over the world’ are you acquainted with the words?!

  6. Couch-in-crisis…

    Sorting Out the Antidepressant “Withdrawal” Controversy

    Ronald W. Pies, MD
    David N. Osser, MD

    Jan 16, 2019

    In 4 parts

    http://www.psychiatrictimes.com/couch-crisis/sorting-out-antidepressant-withdrawal-controversy

    Taster..

    While we do not deny that severe reactions can and do occur when antidepressants are stopped suddenly (or the dose reduced too rapidly), we also believe that fears of such “excruciating” experiences are greatly overstated, in the context of proper psychiatric care.

    Indeed, we are unaware of any reports of lethal withdrawal reactions when SSRIs/SNRIs are rapidly or even suddenly discontinued.

    “what they might teach us regarding so-called “antidepressant withdrawal”

    Dee Mangin

    Professor of family medicine, McMaster University, Hamilton, Ontario

    https://www.cbc.ca/radio/whitecoat/i-was-sobbing-uncontrollably-patients-say-antidepressants-difficult-to-quit-1.4658787

    “I think that one of the difficulties patients have faced over the years is that reporting these symptoms to friends or family or their doctors and not being believed. To have the symptoms attributed to some sort of psychological illness rather than being heard or acknowledged.” 

    She said although patients have reported the problems for more than 20 years, there’s been little research because drug companies are invested in getting new drugs onto the market, “not to get them off.”

    She credits patients with filling the void.

  7. Polypharmacy in primary care: Are medications being appropriately prescribed?

    By
    Monica Naatey-Ahumah

    January 16, 2019

    https://www.medicalnewsbulletin.com/polypharmacy-primary-care/

    Researchers retrieved data from the McMaster University Sentinel and Information Collaboration, an epidemiological database, on patients who were at least 18 years old by the end of 2016. Of particular interest in this study was legacy prescribing and its contribution to polypharmacy.

    Interestingly, antidepressant and PPI prescriptions were often found together, suggesting the adverse effects of the antidepressants may result in PPI prescriptions to alleviate those side effects.

  8. The psychological abuse so many of us have and are still experiencing should be subject to the same law brought in a few years ago to deal with domestic abuse –

    Coercive Control – defined as humiliation both overt and covert; threats ‘if you don’t like what I’m telling you, you can go elsewhere’ ; when there is no elsewhere and the ‘networking’ in an area will make things worse) ; intimidation – ‘this is my clinical judgement and how I was taught – do you know more than us?’ The use of ‘us’ rather than ‘me’ is important as it leaves a person isolated from getting a different consultation with an unbiased
    medic/healthworker
    – importantly included in the definition which can lead to a fine or imprisonment in a domestic abuse case – support and reliance on the perpetrator.

    Gas lighting – has a role in abusive power games and is recognised as having 7-10 identifiable markers by the psychological society in Psychology Today . Gas Lighting in Relationships, April 30 2017 Includes using psychological means to make someone doubt their sanity It is a common tactic used by dictators and cult leaders ‘if you repeat a lie often enough it can become accepted as the truth and can occur over a whole society; (re Peter Gordon’s blog) The term came from a film called Gas Lighting which dealt with abuse of women.

    Catch 22 – a situation from which a person cannot escape often resulting from rules and regulations individuals are subjected to but have no control over. (from a book of the same title ) For a brilliant exposure of how the department for work and pensions uses this , if you can -see Ken Loach’s film ‘I Am Daniel’
    Just like you Spruce are ‘I am Spruce’ and ‘I am Susanne’ not what others destructively define us as.

    None of this would be addressed by the group which is suggesting the drawing up of a specific code of practice for making complaints – they are part of the problem. I would still go through the current processes for making complaints though as if the time comes when they can be used individually or collectively to change the system they will be useful – just a those who contribute to blogs are compiling a hugely important body of evidence.

  9. The terrible thing with gas lighting is that if you become aware of being gas lighted you then end up suffering paranoia so much you then end up not trusting anyone at all. This can result in you not getting any help at all. Most vulnerably ill people are not capable of surviving all this unnessary excessive abuse.

    I read today a politician say the Brexit referendum was only a black and white vote of in and out and it shouldn’t have been because it’s a vast rainbow of issues that’s involved.

    It made me think of our own problems because the medical community only sees the positive results and not the negative results that we suffer. Medicines are like the rainbow issues this politician was talking about, every colour/issue/side effect needs to be seen recognised and if the medical community can not see and speak up for their patients then they really should not be in their jobs as they are a danger to their patients full stop.

    Any professional should remind themselves why they do the jobs they do, is it for the patients or the drug companies?

  10. I’ve had terrible issues with gastric drugs. I went to my gp with gastric issues of bloating and not being able to eat much food. I was already on up to 80mgs pantoprazole per day and had been on pantoprazole for twenty years. Prescribed metoclopramide, had an extrapyramidal reaction and was still having akathisia 7 months later. I realised that continuing to take pantoprazole may be causing my issues. I had already cut out my contraceptive with no ill effects a month before. When I cut pantoprazole I noted immediate changes. The rebound was horrific. I was awake for 18 days and my stomach did not work. It was frozen and my whole abdomen was bloated. I had breathing difficulty. I was so constipated I could not stand up. It took 3 months of taking calcium, magnesium and vit d to clear and 6 months for my stomach to work, something which I had difficulty with for years, just was never hungry, bur my stomach freezing after tge cut was a whole new level. I think the bloating and hunger issues were caused by the pantoprazole and set up the environment for the extrapyramidal reaction. Its only now when my stomach function seems to be returning that I have realised just how nasty pantoprazole was for me.

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