The Girl Who Was Not Heard When She Cried Wolf

January, 1, 2013 | 24 Comments


  1. Thalidomide is back, used with dexamethasone to treat multiple myeloma and Hansen’s disease (leprosy). The dangers for women are obvious but……
    For men taking thalidomide:
    Thalidomide is present in semen (fluid containing sperm that is released through the penis during orgasm). You must either use a latex condom or completely avoid any sexual contact with a woman who is pregnant or may become pregnant while you are taking this medication and for 4 weeks after your treatment. This is required even if you have had a vasectomy. Tell your doctor immediately if you have had unprotected sex with a woman who can become pregnant or if you think for any reason that your partner is pregnant.
    (And that will achieve exactly what?)
    Do not donate semen or sperm while you are taking thalidomide.
    As if that weren’t enough:
    Risk of blood clots:
    If you are taking thalidomide to treat multiple myeloma, there is a risk that you will develop a blood clot in your arms, legs or lungs. This risk is greater when thalidomide is used along with other chemotherapy medications such as dexamethasone.
    Talk to your doctor about the risks of taking thalidomide.
    (And that will achieve exactly what?)
    Sir William Osler: “The young physician starts life with 20 drugs for each disease, and the old physician ends life with one drug for 20 diseases.”

  2. That is a christmas cracker of a story.

    I had a dream I wrote to Prince Charles:

    Dear Prince Charles

    The Knights of the Round Table have turned upon us. Your Knights are not defending us.

    One Knight, in particular, is playing a role like in a film called Catch Me If You Can. Frank Abagnale Jr. successfully conned millions of dollars as a pilot, doctor and legal prosecutor. He became so skilful that the FBI eventually turned to him for help.

    Would it be possible for you, as our future King, to talk to your Knights, and ask them why they have changed the shape of their round wooden table to oblong and what, distinguished men, from far-kingdoms, discuss under their ‘Codes of Chivalry’.

    Your loyal subject,
    Miss Annie of Argyll

    I had a dream………….Martin Luther King…..

  3. Thanks for this interesting posting. I have been teaching psychiatry in sub-Saharan Africa where we are introducing intervention guidelines produced by WHO termed MHGA-IG, we are keen to avoid teaching inappropriate prescribing of psychotropics. It would be good if you had time to look over the guidelines and make comments.

    For moderate to severe depression there is this advice – “during pregnancy or breast-feeding antidepressants shoud be avoided as far as possible.” To me that seems reasonable. It goes on to say “if no response to psychosocial treatment, consider using lowest effective dose of antidepressants.” the wording of which causes me concern – I’d prefer some qualification related to severity. Given the fact that this advice and the rest in MHGAP-IG may well be followed for hundereds of thousands of cases, it is important ot get as right as possible.

    In relation to psychosis I wonder if you have seen this article – Teferra et al. BMC Psychiatry 2011, 11:165 They report that “treatment with antipsychotic medication for at least 50% of the follow up time was associated with lower risk of mortality.” Mostly the medication they would be on would be chlorpromazine or haloperidol as these are the available drugs in such countries.

    Tx Gil Blackwood FRCPsych

  4. Happy New Year! Thanks David, and thanks to Louise, for inviting Joe Hill to kick it off. A rebel spirit is exactly what we are going to need to take this fight forward in 2013. A few days ago I hit the web to retrieve a favorite poem by Roque Dalton, a poet and fighter for justice from El Salvador. (Don’t know why, must have been psychic.) Dalton wrote about the dead who won’t shut up, and just like Joe Hill he is among them:

    The Warrior’s Rest

    The dead are getting more difficult every day.
    It used to be easy dealing with them:
    We gave them a starched collar, a flower,
    We inscribed their names on a long list:
    The length and breadth of our nation,
    Of the distinguished shadows, the monstrous marble statues.
    The cadaver signed the memory book
    Returned to the ranks, and marched to the beat of our old music.
    But check this out:
    The dead are not like they used to be.
    These days they get all ironic; they ask questions.
    I think they are starting to figure out that they are the majority.

    NOTE: I found a dozen translations of this poem on the web, all different and some just awful, so I patched together my own … the Spanish original can be found here:

  5. Happy New Year Dr. Healy.

    I took a glance at the article. I didn’t know about auto-erotic asphyxiation being one side effect.

    The list just grows and grows.
    I have a list of 53 side effects and I checked many of them in my 19 months of Effexor withdrawal and the three months I was out of it feelingthings i cannot even name.

    It has to stop…
    NOT THE CHILDREN > PLEASE! Spare the children!
    They don’t care. they don’t care.

    • Ana

      It probably isn’t a side effect. The point is regulators and companies will put forward any explanation however grotesque rather than accept in public what they have already accepted in private – that Drug A causes problem B – in this case that Zoloft can cause suicide

  6. Dear Dr. Healy,

    I read it more careful now and understood. One of the many strange attributes I noticed in psychiatrists is their total lack of culture,

    They are incapable of a text like this one.

    I had to tell them what drug to take. I reported one side effect and if it was visible they could not say “it’s all in your head”.
    They decided to take… I have no idea what the criteria they used. I had to say: “No! It started when you added X. So I guess it is X that has to be taken.”

    If I knew then what I know now!

    When Topiramate arrived at the market he decided to add it at my cocktail.
    When I was withdrawing I started crying. If I took it I stopped.
    The new psychiatrist said that it was not possible and that I should go to her office so that she could prove me she was right.

    I declined. They have no idea about how we feel terrible. It was the first time she was ‘helping” someone withdraw this drug.

    Why did I end up taking all these drugs?

    When I was 29 years old I had a kind of nervous breakdown and couldn’t sleep for three days. Went to a great psychiatrist that after watching me for three weeks told me I needed therapy and that he didn’t even knew if I was depressed,
    The only terrible thing he did was prescribe me clonazepam.

    I found a great therapist and ended the process in 2008.

    Back in 1998 I didn’t take clonazepam for three days and had a terrible withdrawal crisis.

    Logic says that we have to find an expert to help you. I went to another psychiatrist.

    He started with diazepam and clonazepam and to help he added the first antidepressant of my life: Tofranil.

    I had a terrible reaction. So my father took me to another psychiatrist that didn’t ask me when I started to feel that way.

    If he did that I would answer that it was when I started the antidepressant.
    He started watching the side effects as mental diseases.

    Prescribed me numerous drugs… another psychiatrists… another…

    We look at those tiny pills and think that they are nothing.

    I still take clonazepam and also Effexor and Seroquel.

    Ironic. I’m a person who always hated drugs and only took painkillers when necessary.

    When in pain we don’t trust our intuitions. It’s harder.

    This story is the story of many people in the world. Some of them don’t have any idea that they were healthy and thank the drugs they are taking: “If I stop THE DISEASE COMES BACK.”


  7. I remember these things so well: Asking for help, pleading for help, screaming for help, screaming into a medical void. Then came the years of silent screaming.
    Seventeen years later, the truth emerged and I began screaming all over again, screaming until someone listened about SSRIs and the damage they had wrought. Now, after 20 years, I am vindicated and I can at last stop. But somewhere along the line – amid all the screaming – I forgot how to live.

  8. Good grief, Charlie Brown! I got only this far with the MGAP Intervention Guide.
    “There is a widely shared but mistaken idea that all mental health interventions are sophisticated and can only be delivered by highly specialized staff. Research in recent years has demonstrated the feasibility of delivery of pharmacological and psychosocial
    interventions in non-specialized health-care settings…. The mhGAP-IG includes
    guidance on evidence-based interventions to identify and manage a number of priority conditions. The priority conditions included are depression, psychosis, bipolar disorders, epilepsy,developmental and behavioural disorders in children and adolescents, dementia, alcohol use disorders, drug use disorders, self-harm / suicide and other significant emotional or medically unexplained complaints.”
    But we don’t need staff with specialized knowledge. All we need are a group capable of writing a prescription. That’s what the rest of the world does.
    “The mhGAP-IG is brief so as to facilitate interventions by busy non-specialists in low- and middle-income countries. It describes in detail what to do but does not go into descriptions of how to do. It is important that the non-specialist health-care providers are trained and then supervised and supported in using the mhGAP-IG in assessing and managing people with mental, neurological and substance use disorders.”
    Let me see if I’ve got this straight. We don’t need specialist care for the economically underprivileged, but non-specialists are to be trained (by whom?) so that they become closer to specialists but just not quite as good, because they have to be supervised (by whom?). And they will save time by learning a few algorithms and writing prescriptions.
    Is this Newspeak or what? I guess some really are more equal than others.

    • You may be interested to learn that New Zealand’s Ministry of Health is now establishing criteria and protocols that will allow psychologists to prescribe psychiatric medications.
      I find this somewhat disturbing, given most psychiatrists have never seen and – in my experience – could not easily identify serotonin syndrome/SSRI-linked movement disorders/drug-induced psychosis.
      Who will peer review/train these people? What will be deemed an acceptable level of training?

      • Training and supervision is a big part of the MHGAP programme. I agree a lot of mental health workers need reskilled. Maybe it will be best to selectively skip a generation.

  9. MHGAP-IG seems like an attempt to engineer a solution to a problem using the resources available. It does not condone inequality. In rich countries a lot of basic health care is taken for granted. In fact in poor countries nearly half of the people who can benefit from the type of approach in MHGAP suffer from epilepsy. Following simple protocols of care 70% or so become completely fit free. Without care the death rates from epilepsy are very high with only a handful living past 30. Another group that benefits are those who suffer from developmental disorders some of which have simple solutions such as giving them glasses or hearing aids. There is a problem though with moderate depression because of the way specific cultures define it. My inclination is to put more emphasis on identifying anhedonia before prescribing antidepressants.

  10. Gil
    Anhedonia. What a relief to see it appear. Apparently the term was coined by Théodule-Armand Ribot. “One can distinguish many kinds of pathological depression. Sometimes it is mere passive joylessness and dreariness, discouragement, dejection, lack of taste and zest and spring. Professor Ribot has proposed the name anhedonia to designate this condition. “The state of anhedonia, if I may coin a new word to pair off with analgesia,” he writes, “has been very little studied, but it exists.” It certainly does and is far too often confused with full-blown depression instead of what may be a prodromal condition. But then the term “depression” has become loose in general parlance. Worry, sadness, realistic anxiety, the “blues” have become “depression” requiring a treatment that needs a prescription pad. The proposal to make grief a disorder is the ultimate in the dangerous absurdities that are becoming accepted parlance.
    Anhedonia is, in my experience, a red flag for possible, not certain, development into depression but lately I’ve found few psychiatric residents or psychologists who can identify it or believe it to be important. Major depression, melancholia if you will, as well as psychotic depression lie waiting in the Outer Anhedonias.
    You mention epilepsy as being prominent in the areas in question. Would this be cerebral malaria? I know there are all kinds of attempts to reduce malaria but given the vector this is probably pushing a rope up a hill. Of course a relatively simple approach to treatment of epilepsy would make a huge difference and prevent a significant amount of morbidity and mortality. I didn’t mean to diminish approaches such as this. The document, though, does come across as implying that some people in some areas don’t require the level of care that exists in some countries regarded as technologically and economically advantaged. This perceived higher level of care is more apparent than real depending on which part of which country you happen to live in. I hope that I can appreciate the particular problems you face although that may very well be presumptuous if not arrogant on my part but some of these problems may actually be advantageous. If certain medications aren’t available, they can’t be prescribed, can they? And for some, that’s a real advantage.
    The older I get the more inclined I become to suggest talking to a good friend, a pastor if the person is religious, finding a really good psychologist if the psychiatrist is too busy to take the time to listen and talk. I may soon be resorting to poultices and castor oil.

  11. The real Short Arm Society – the babies born with Thalidomide damage, who are now in their fifties – have fascinated me since we were all school kids, and still do. The questions they face are so stark, but familiar. How do you make sense of the damage that was done to you, fight to expose it and warn others— and still try to make the best of life as you find it? Will you ever know who you could have been “but for” this disaster, and does it matter? If you do manage to “move on”, does that mean you’re letting the guilty parties off the hook? Lindy, I don’t know if any of these questions were on your mind when you said you felt like you’d forgotten how to live. Many of us who have been through the wringer of Modern Mental Health and come out the other end alive have felt the same.

    Lisbeth’s Story inspired me to drop in (via the web) on the genuine SAS in Canada ( ) . They are speaking out strongly for safeguards in re-introducing thalidomide as a cancer and leprosy drug, and for a priority on finding safer drugs to replace it. Their website masthead says “Remember us – Know your Medications!” While campaigning to protect others, they are also fighting for their own needs as advancing age, and decades of stress, add to the toll on their bodies. Their cousins in Ireland ( ) face a similar struggle.

    By and large, they have set a damn good example. You can survive, maybe even thrive, and still hold the bastards accountable—but you have to stick together. Maybe one of them would do us the honor of writing a guest column for RxISK. In any case, they have a lot to teach, and I thank them for sharing it with the rest of us.

    • Johanna, do I know who I could have been had my life, mind and body not been torn apart by SSRI medications?
      Sadly, I do. I would have been a mother my sons could have loved, respected and been proud of. Instead, they lived in fear that my misdiagnosed twisted limbs and ever-moving muscles were a hereditary condition. They were embarrassed by the actions of a mother with drug-induced hypomania. They feared for me because my condition kept me locked in a violent and abusive relationship (with a man I met after their father and I divorced). I had been told to prepare for life in a wheelchair – or worse – and the terror of facing that alone was too much to contemplate.
      I would not be sitting here, as I am this moment, with no home of my own and few personal effects, using speech recognition software to write.
      The effects of SSRIs stripped me bare, mentally, physically, financially and on a career level. I forgot how to live anything but this all-consuming nightmare; how to play, how to laugh, how to forge friendships, or go to the beach “just because”.
      I was once considered one of the most talented creative directors in this country. I loved it with a passion – radio writing and production was my “toy box”. That went in 1993, when my hands were attacked by dystonia and I could no longer write quickly enough.
      Fortunately, my painfully slow “hunt and peck” typing was acceptable in print media I became an award-winning journalist and chief reporter, but that too fell prey to the effects of medication.
      In 2007, when I was no longer able to climb the stairs to my desk due to the muscle twisting and rigidity (there was no disability access) and I was confronted with a total lack of recall over an important story I had interviewed for – and written – twice within a fortnight, my career ended. Finally, I realised, I had lost my mind as well.
      I know all too well who and what I could have been, had I not sought “help” after I was raped and assaulted by an alcoholic/depressed partner who was taking Anafranil, and had spent months trying to get help for a psychotic brother.
      I wish I had I not been the compliant, unquestioning patient who took that first dose of Aropax in her desperation to numb the pain. Aropax and its effects, however, proved to be the tip of the pharmaceutical iceberg: in its wake came Prozac, then Cipramil and in 2005, my bete noir, Effexor-XR, which inflicted the most damage of all.
      Here in New Zealand, we have been rendered legally impotent by our Accident Compensation system. We can not sue those who harm us, yet the compensation we receive goes nowhere near covering the full cost of medical care and personal losses. All we could do – until now – is tilt at Big Pharma’s windmills, box with shadows.
      But now we have David Healy, RxISK and social networking on our side. We are building a community, raising awareness, striking back. For the first time, I have real hope of scoring a retaliatory hit on Big Pharma.

  12. These few minutes are for Lindy, often, words are not enough, when the screaming did not stop………

    How about we put this small cd into the packet…the Titanic, did sink, but according to GSK, it still sails…..with the wind changing direction…….

    Who makes the decision as to what goes in the packet with the pills…. Is it a Macdonald’s free gift toy, with your ready meal.

    Having spent hundreds of pounds buying my Seroxat, where was my offer of a ‘Loyalty Card’.

    Enjoy the movie… is awesome..

    • Hi Annie,

      Thank you for this. If only I could have screamed so artfully, so tunefully, so compellingly.

      The silent screaming was the worst and most protracted; I had reached a point where I no longer dared mention my bizarre and rapidly growing list of SSRI-linked symptoms for fear of being branded mad, a malingerer, or both.

      On November 27, 2012, after 19 years, many challenges and much debate among clinicians who all, ultimately, concurred in their opinions, I was vindicated in an extensive report by a consultant psychiatrist. These extracts are cut and pasted from it:

      “Ms A is a fifty-seven year old woman who is currently presenting with symptoms and signs of persisting dystonia and a history of symptoms which she has experienced for many years and which have receded over the past eighteen months. They were likely caused by her treatment with SSRI and SNRI anti-depressants. Ms A appears to have suffered a rare complication of these medications over a period of fifteen to seventeen years. None of the doctors she saw over this period were able to recognize or acknowledge that her neurological symptoms were a result of the anti-depressants she was being prescribed.

      This led to her experiencing a range of physical and psychological symptoms which seriously impacted on her life leading her to become relatively estranged from her sons, to stay in an abusive relationship, to lose her job and her house. Ms A played a major part in ascertaining the cause of her problems using her skills as an investigative journalist.

      5a. I believe that the injury i.e. the dystonia and Serotonin Syndrome were a material cause of the current mental condition. I believe that this is the case because of the temporal relationship to the treatment with SSRI’s. Ms A also reported her suspicion that the SSRI medication was a cause of the dystonia when she noticed an improvement in these symptoms after a temporary discontinuation of treatment and a worsening once she resumed treatment. It is also now recognized that tardive dystonia can be a rare complication of treatment with serotonergic anti-depressants. It is also know that Serotonin Syndrome too is a rare complication of such treatment.

      5b. It is not so much the circumstances of the incidents of 18/09/1997 which has contributed to the claimant’s mental condition. However, what has contributed is the failure by doctors to acknowledge or diagnose her problems as a side-effect of the medications and when she finally had her suspicions confirmed, having to come to terms with the loss of her quality of life over many years.

      DSM IV Diagnosis

      Axis I Anxiety Disorder Not Otherwise Specified.
      Medication induced Movement Disorder Not Otherwise Specified.
      Post Traumatic Stress Disorder.
      Major Depressive Disorder – currently in remission.
      Panic Disorder with agoraphobia.

      Axis II No diagnosis.

      Axis III Tardive dystonia.
      Chronic Serotonin Syndrome – now largely in remission.

      Axis IV Multiple stressors including ongoing physical and psychological symptoms; relative unemployment; social isolation; embarrassment about persisting symptoms; frustration and anger about loss of many years of life; fear of as yet unknown potential effects of the medication she has taken on her quality of life and longevity.”

      It is a lengthy document and one I still struggle to read, as there is so much loss, so much trauma associated with it. But those pages and the RxISK website at last silenced my screaming. I have no need for it; like you and the others here, I have found my voice.

      What I find so compelling, so striking about the content of these pages is the intelligent and creative global dialogue generated by those of us who have been adversely affected by medications. We are indeed well placed to contribute to the education and research that will result from RxISK.

      Incidentally, I took my last dose of Effexor in February 2010.

  13. I hear from my younger friends that Zofran (used to combat nausea from chemotherapy) is now the drug of choice for nausea in pregnancy. Even Droperidol. Cringe.

  14. Thanks for sharing your story, Lindy! I think it would make a wonderful column for – any time you’re ready. Between these two posts I think you’ve already written it, and eloquently. It makes me furious that it took so long for any doctor to recognize the connection to antidepressants. Especially Effexor, which is one of the twitchiest drugs around. What happened to you is rare only in its intensity – less serious muscle spasms, twitches and involuntary movements are pretty common.

    I took to grinding my teeth in my sleep on Effexor – to the extent that several of them cracked down the middle and I eventually lost them. I also ended up getting a sleep study to figure out my daytime fatigue level – which showed me kicking and twitching enough to earn a diagnosis of “restless legs syndrome.” My hands and feet were always clenched. When bored I could sit very still and watch my thumbs jump around on their own, independent of any orders I gave them. My deltoids twitched too, and on bad days one eyelid would join the party. I also yawned, often and forcefully – to the point that a boss (with some problems of his own) decided I was doing it deliberately to be disrespectful. It was only when I shared this source of “job stress” with my doctor that he finally put it together. The yawning disturbed him more than me – apparently “neck and jaw dystonias” are a bad sign neurologically speaking. So it was off Effexor, and on to the next wonder drug.

    • Johanna, I will be recording a Skype interview to be posted on RxISK this week. Thanks so much for your comments:)

  15. Lindy,

    It’s great that you have received this document.
    I’ll copy it to show to the psychiatrist that pushes, oops, that gives me the receipts so that I can buy the drugs that destroyed my life.

    We all suffer in silence and what was done to was is like “the perfect crime” because no matter what we say it doesn’t count.

    Only with my friends at the internet I can talk about it.
    When I try to explain, not my story but alert people that they have to be be careful with the drugs they are prescribed they don’t wanna listen.

    My best friend is taking statins. When I started saying that it is… “you and your medicine views…”

    All I learned about these drugs was researched in English. I’m Brazilian and in Portuguese there is nothing.

    We don’t have a single psychiatrist who raised his/her voice.
    I know what happened to me but most people don’t and they think they are mentally ill or will have to take the drug forever not because their bodies cannot function without it but because they are sick.

    I’m glad you could stop taking Effexor. 🙂

    • Lindy,

      Yes. I understand that it’s not easy to read the whole document. I wish I could forget about it all. But its not possible.

      The document is signed by psychiatrists and GPs?
      I think that what you have in hands is very important. This is the first time I see physicians giving such statements.

      I would like to publish it at my blog. If you give me the permission I’ll be grateful.

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