Reasons Not to Believe in Lithium

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I Don’t Believe in God, But I Believe in Lithium’ is the title of Jamie Lowe’s moving account of her manic depression (now usually referred to as bipolar disorder) in the New York Times. The piece reminds us how devastating and frightening this condition can be, so it is understandable that the author put her faith in the miracle cure psychiatrists have been recommending since the 1950s: lithium.

Lowe took lithium from the age of 17 for 20 years, until at the age of 37 or thereabouts she was diagnosed with kidney failure, a direct result of this treatment. She will need dialysis, and a kidney transplant – a high price to pay for a really effective treatment. The sad thing is, we have little evidence that lithium is a really effective treatment, or even that it is effective at all.

Lithium is a neurotoxin. It inhibits the functioning of the nervous system so that people typically feel drowsy, lethargic and slowed up. These effects were observed in guinea pigs initially, and then in people with mania by the Australian doctor, John Cade, who first proposed that lithium might be a useful treatment for manic depression.1 In the 19th century lithium had been used for the treatment of gout, and became a popular ingredient of tonics and even beer, until it was shown that it did not dissolve the uric acid crystals that cause gout as had been claimed.2

The sedative and slowing effects of lithium, although usually described as side effects, account for why lithium can help reduce arousal and activity levels in people with acute manic symptoms. So there is nothing magic or specific about lithium’s action in manic depression. Lithium will exert its characteristic effects in anyone, whether or not they have mania or manic depression.  In theory, these effects might suppress the emergence of a manic episode, as well as reduce the severity of symptoms once an episode has started. The evidence that long-term lithium treatment reduces the occurrence of manic or depressive episodes is actually very weak, however.

The main problem with the evidence is that there is no study in which people who have been started on lithium have been compared with people who haven’t. Every randomised trial of lithium versus placebo starts with people who are already on drug treatment of one sort or another, often lithium itself. Now, there is good evidence — accepted by leading proponents of lithium3,4 — that withdrawing from lithium can precipitate a relapse of manic depression, especially a manic episode. Three studies have shown, for example, that people are more likely to have a relapse after stopping lithium than they were before they started it.5-7 No one knows the mechanism for this, but it is as if removing the neurological suppression produced by lithium causes the nervous system of a susceptible person to go into over-drive, precipitating a manic relapse.

So demonstrating that people who stop lithium and start a placebo have higher rates of relapse than people who continue on lithium does not demonstrate that going onto lithium in the first place prevents episodes.  But all the placebo-controlled trials of lithium are like this to at least some degree. The trial that established the idea of long-term lithium treatment, for example,  started with people who had already been on lithium for many years.8 In more recent studies, not all participants have been on lithium prior to enrolment, but those not taking lithium were likely to be taking other sorts of sedative medication. The first of these recent studies, the largest study up until that point involving 372 participants, found no difference between lithium, sodium valproate and placebo in terms of the rate of recurrence of any type of mood episode.9

The second found a higher rate of manic relapse in placebo-treated patients compared with those on lithium, but the pattern with which relapses occurred was strongly suggestive of a discontinuation effect. A large majority of relapses occurred in the first few weeks after allocation to placebo, and none occurred in the last few months of the study, suggesting that the point of discontinuation of previous medication was associated with subsequent relapses.10 In the final trial, rates of mania were higher in people on placebo by about 14% (14% vs 28%), but 20% of participants were taking lithium before randomisation, and still others were taking Depakote or antipsychotics, all of which were stopped relatively abruptly prior to the trial.11

The possibility that relapses in the placebo groups in these trials are induced by withdrawal of previous medication would make sense of the fact that it has proved impossible to demonstrate that people receiving modern drug treatment for manic depression do any better than those who don’t, or didn’t. In fact, overall, they seem to do slightly worse.

Two important studies have examined rates of relapse in people with classical manic depressive symptoms prior to the 1950s. American psychiatrist George Winokur found the records of 100 patients admitted to a psychiatric hospital between 1934 and 1944 with an episode of mania and then followed them up through their hospital records. He found that 48% had a relapse requiring hospitalisation over an average follow-up duration of 3.2 years. For comparison purposes this equates to a relapse rate of 15% per year.12 Margaret Harris, David Healy and colleagues did the same for patients admitted to the North Wales asylum in the 1890s. They found that on average patients had 4 relapses over the subsequent 10 years, equating to a relapse rate of 20% a year.  In comparison, during the 1990s, people with manic depression (most of whom we can assume were on drug treatment) were having an average of 6.3 admissions in 10 years, or 31% per year, for example.13 That’s over 10% higher than the rate of admission for people in the 1890s!

Relapse rates among patients taking lithium in randomised trials that have started with patients experiencing a manic episode (as the historical studies did) are uniformly higher too. In the comparison between lithium, Divalproex (Depakote) and placebo, for example, the lithium group relapsed at a rate of 31% a year (9). In the comparison between lithium, lamotrigine and placebo in people with mania it was 26% a year (10). Admittedly these figure include all relapses, and not just those severe enough to require hospitalisation. A large study conducted in the 1970s, however, found that rates of hospital admission for relapse were 21.5% per year in the lithium group.14

Several ‘naturalistic’ studies have tracked the progress of people taking lithium and other treatments. The vast majority of these studies also show high relapse rates among those on lithium, even though most studies highly compliant populations and we know that people who are compliant with any treatment (including placebo) have better outcomes than those who are not. One study of patients who were known to be compliant with their lithium treatment for at least a year, for example, found a rate of relapse of 40% a year over a 6 year follow-up.15

In my view the evidence that lithium helps prevent episodes of manic depression is far too weak to outweigh the harms it can cause (which commonly include thyroid damage, kidney damage, and acute neurological toxicity at doses very close to those used in practice, hence the need for blood monitoring). Manic depression is a highly variable condition. Some people have many episodes, some people few, and the pattern of episodes varies throughout life as well. Long periods of remaining well are not necessarily evidence of a treatment’s effectiveness.  What we would need to demonstrate the efficacy and value of lithium is a prospective randomised trial in which people who had not previously been on long-term drug treatment were randomly allocated to start lithium or placebo. At present, my view is that the evidence that lithium might be effective is not strong enough to justify such a trial, given the health risks associated with it.

As Jamie Lowe eloquently expresses, manic depression can be a terrifying condition, and I know that people will say therefore ‘if not lithium, then what?’ But the evidence that any long-term drug treatment is better than nothing is not strong.1 Many doctors and patients are very uncomfortable with that conclusion, and feel there just has to be something. And if people want to try some sort of drug treatment, like antipsychotics or anticonvulsants, then I feel that doctors should help them take it as safely as possible, at as low a dose as possible. But doctors should be honest about the state of the evidence and for lithium, I am not convinced there are any circumstances that justify the risks it entails.

In 1957 a pharmacologist bemoaned the fashion for treatment ‘by lithium poisoning’.16 One day, I believe, we will wake up and realise his concern was spot on!

* * * * *

References:

(1)    Moncrieff J. The Myth of the Chemical Cure: a critique of psychiatric drug treatment. Basingstoke, Hampshire, UK: Palgrave Macmillan; 2008.

(2)    Johnson FN. The History of Lithium Therapy. London: Macmillan; 1984.

(3)    Franks MA, Macritchie KAN, Young AH. The consequences of suddenly stopping psychotropic medication in bipolar disorder. Bipolar Disorders 2005;4(1):11-7.

(4)    Goodwin GM. Recurrence of mania after lithium withdrawal. Implications for the use of lithium in the treatment of bipolar affective disorder. Br J Psychiatry 1994 Feb;164(2):149-52.

(5)    Baldessarini RJ, Tondo L, Viguera AC. Discontinuing lithium maintenance treatment in bipolar disorders: risks and implications. Bipolar Disord 1999 Sep;1(1):17-24.

(6)    Suppes T, Baldessarini RJ, Faedda GL, Tohen M. Risk of recurrence following discontinuation of lithium treatment in bipolar disorder. Arch Gen Psychiatry 1991 Dec;48(12):1082-8.

(7)    Cundall RL, Brooks PW, Murray LG. A controlled evaluation of lithium prophylaxis in affective disorders. Psychol Med 1972 Aug;2(3):308-11.

(8)    Baastrup PC, Poulsen JC, Schou M, Thomsen K, Amdisen A. Prophylactic lithium: double blind discontinuation in manic-depressive and recurrent-depressive disorders. Lancet 1970 Aug 15;2(7668):326-30.

(9)    Bowden CL, Calabrese JR, McElroy SL, Gyulai L, Wassef A, Petty F, et al. A randomized, placebo-controlled 12-month trial of divalproex and lithium in treatment of outpatients with bipolar I disorder. Divalproex Maintenance Study Group. Arch Gen Psychiatry 2000 May;57(5):481-9.

(10)    Bowden CL, Calabrese JR, Sachs G, Yatham LN, Asghar SA, Hompland M, et al. A placebo-controlled 18-month trial of lamotrigine and lithium maintenance treatment in recently manic or hypomanic patients with bipolar I disorder. Arch Gen Psychiatry 2003 Apr;60(4):392-400.

(11)    Calabrese JR, Bowden CL, Sachs G, Yatham LN, Behnke K, Mehtonen OP, et al. A placebo-controlled 18-month trial of lamotrigine and lithium maintenance treatment in recently depressed patients with bipolar I disorder. J Clin Psychiatry 2003 Sep;64(9):1013-24.

(12)    Winokur G. The Iowa 500: heterogeneity and course in manic-depressive illness (bipolar). Compr Psychiatry 1975 Mar;16(2):125-31.

(13)    Harris M, Chandran S, Chakraborty N, Healy D. The impact of mood stabilizers on bipolar disorder: the 1890s and 1990s compared. Hist Psychiatry 2005 Dec;16(pt 4 (no 64)):423-34.

(14)    Prien RF, Caffey EM, Jr., Klett CJ. Prophylactic efficacy of lithium carbonate in manic-depressive illness. Report of the Veterans Administration and National Institute of Mental Health collaborative study group. Arch Gen Psychiatry 1973 Mar;28(3):337-41.

(15)    Tondo L, Baldessarini RJ, Floris G. Long-term clinical effectiveness of lithium maintenance treatment in types I and II bipolar disorders. Br J Psychiatry Suppl 2001 Jun;41:s184-s190.

(16)    Wikler A. The Relation of Psychiatry to Pharmacology. Baltimore: Williams & Wilkins Co; 1957.

80 COMMENTS

  1. Thanks, Joanna.
    I am still not clear on your recommendations for responding to a manic episode (as opposed to at preventing recurrence). As you know and as Ms. Lowe discusses in her article, mania can be destructive and scary. If one does use a drug to slow a person down or sedate him in the moment, what then? I admit that sometimes I find myself wondering, What Would Joanna Do?

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    • I’m going to but in here Sandy. I’d just posted my own comment and saw yours. I’m not a psychiatrist but I am a psychiatric survivor and have supported family members in and out of psychiatry for nearly 50yrs.

      My advice regarding a manic episode is to try and sit with the discomfort. I speak from personal experience, having supported my youngest son, who has a bipolar disorder diagnosis, at home with me over the last 3 years, following his abusive treatment in a locked seclusion room of a locked psychiatric ward. My son tapered the Haloperidol that was forcibly injected into him Feb12, under a psychiatrist and with my support, and was off the drug by Aug12.

      However the last 3 years have been scary at times for both of us. We had no other support except for occasional appts with psychiatrist, every few months. We live in the same house, no-one else sharing the building. The mood swings that can arise due to unexpected happenings or life stressors are not for the faint-hearted. I would say I was a strong person but at times I felt impotent and useless, not being able to sort the distress. So I just went with it. Did my best not to react. And gradually it has got less severe and not as fearful. In fact recently we seemed to cross a bridge or move into a different space. Difficult to describe. What I can say is that my son is far better in himself without being on psychotropic drugs. He is more focused and productive, and more like “himself”.

      I have another older son who prefers to be on antipsychotics, for just now anyway. He can swallow the drugs and still function, be productive, do paid work. But he doesn’t take Lithium which made him vomit or any other “mood stabiliser”. He has resisted polypharmacy, won’t take antidepressants, and I advocate for him, with the psychiatrist, when necessary, although he has a “good” one now, a woman who listens to him, so I am not needed.

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    • Hi Sandra
      I’m also going to butt in. I have some clients/patients with “old fashioned manic depression” (not DSM bipolar) who are on NO regular medications, and use ACT psychological flexibility strategies daily (mindfulness skills, orientation to valued actions, acceptance skills, exercise, sleep diet etc) AND occasionally with stress / seasons have manic episodes. We step back stressors IF possible, increase health strategies, AND use short term LOW dose diazepam/temazepam and chlorpromazine (more flexible, lower dose than quetiapine also less appetite/weight issues but functionally very similar) short term – and they’ve settled and OFF medication in about a month, max 6 weeks. Nothing ongoing. One developed hepatotoxicity on chlorpromazine so (to his great dismay) across to short term quetiapine. Will be only a few weeks max then off. All carefully negotiated. All with email support. With ongoing focus minimal meds, maximal health strategies, minimal labelling and issues that all brings. Hope helpful, Rob Purssey

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      • Hello Rob,

        This struck me to my core:

        ” I have some clients/patients with “old fashioned manic depression” (not DSM bipolar) who are on NO regular medications, and use ACT psychological flexibility strategies daily (mindfulness skills, orientation to valued actions, acceptance skills, exercise, sleep diet etc) AND occasionally with stress / seasons have manic episodes. We step back stressors IF possible, increase health strategies, AND use short term LOW dose diazepam/temazepam and chlorpromazine (more flexible, lower dose than quetiapine also less appetite/weight issues but functionally very similar) short term – and they’ve settled and OFF medication in about a month, max 6 weeks. ”

        This is nearly identical to what I follow minus the phamaceutical elements. If I had ever met a doctor I trusted I would be willing to try them. My diagnosis is schizoaffective. Your patients are very lucky. This is the kind of science that Psychiatry would be paying attention to if she were not possessed by profit.

        Thank you for your honesty and loyalty to the hippocratic oath.

        I would like very much to hear more from you and I think this community would too.

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    • Hi Dr. Steingard,

      Admittedly, I am very thankful that I was under the care of a skilled psychopharmacologist when I suffered acute mania/psychosis and in the moment, I did need to be slowed down with medications.

      The insomnia was unbearable and the health impact of lack of sleep must be considered as a critical condition that needs to be treated.

      Medications can be effective in slowing a person’s mental state down/helping insomnia but why do medical professionals fail to question what is causing the mental state to speed up?

      As a best practice standard, our medical professionals must consider testing for and treating the underlying medical conditions that are known to cause a person to suffer mania/psychosis.

      After several years of repeated bouts of manic/psychotic episodes requiring hospitalization, I was blessed to find an MD who uses Functional Medicine/Orthomolecular Concepts.

      Tests revealed past exposure to lead/other toxins related to long-term chemical exposure in the work environment. Chelation and other therapies helped to reduce levels, symptoms subsided, meds were tapered off and eventually I received a worker’s comp settlement after supportive depositions for the dx of toxic encephalopathy.

      In this 2013 TEDxTalks, journalist Susannah Cahalan, author of Brain on Fire: My Month of Madness, shares her experiences of being misdiagnosed with severe mental illness.

      https://youtu.be/oqrzvYnrI9A

      Susannah’s talk reveals the serious flaw in our mental health care system of how patients suffering from psychosis and mania are simply labeled with generic DSM5 diagnoses using with what is referred to as a “Chinese Menu” approach.

      Susannah claims her parents were adamant that her treatment take place in a hospital setting and they fought to keep her from being admitted into a psychiatric facility. She now believes her family’s advocacy to keep her out of a psychiatric hospital is what saved her life.

      During her talk, Susannah states to the “untrained eye” she would have been considered a schizophrenic. She even reads out loud the DSM5 criteria for schizophrenia which matched up to her symptoms.

      Susannah explained that her treating psychiatrists considered her to be an otherwise healthy, normal 24-year old woman. In some of her interviews she claims, the first neurologist she saw told her there was nothing wrong with her.

      A psychiatrist told her she had bipolar disorder and prescribed antipsychotic medications.

      A second neurologist diagnosed her with “alcohol withdrawal syndrome” and prescribed different psychiatric medication.

      While hospitalized, her psychophamacologist diagnosed her with schizoaffective disorder, what she describes as a combination of schizophrenia and bipolar disorder.

      Susannah admits that she was extremely lucky to come under the care of a neurologist with an excellent reputation. Her doctor, Dr. Souhel Najjar, is a Neurologist, Neurophysiologist, Epileptologist and a Neuropathologist at NYU Langone Medical Center. He is also the Clinical Associate Professor of Neurology at the NYU School of Medicine.

      While the other doctors and psychiatrists ignored many of Susannah’s physical manifestations, which included seizures and high blood pressure, Dr. Najjar took that information seriously and spent a considerable amount of time obtaining information about her case from her parents.

      After a month-long hospitalization and very costly testing, a very simple “Draw a Clock” test put Dr. Najjar on the path to making the correct diagnosis. This no-cost test alerted the neurologist to Susannah’s underlying condition of anti–NMDA receptor autoimmune encephalitis

      For Susannah, it took only a relatively simple combination of steroids and immune therapies for her to recover from symptoms that were considered a severe mental illness.

      Susannah now believes it is exceedingly important for psychiatry to adopt a greater vigilance in diagnosing patients to rule out possible neurological causes of behaviors that can be misdiagnosed as severe mental illness.

      Dr. Najjar estimates that nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed.

      “It’s a death sentence when you’re still alive,” Najjar said. “Many are wasting away in a psych ward or a nursing home.”

      Below is another case of misdiagnosis. Two years of a young girl’s life wasted because of the “Chinese menu” approach.

      Does it really matter how rare a condition is?

      If it is a possibility, it should be ruled out.

      Very sad to know so many are refused accurate assessment.

      Kind Regards,
      Maria M.

      Neuropsychiatric systemic lupus erythematosus presenting as bipolar I disorder with catatonic features.

      Posted on November 25, 2012
      Psychosomatics. 2009 Sep-Oct;50(5):543-7.
      Alao AO, Chlebowski S, Chung C.
      SOURCE
      Department of Psychiatry, SUNY Upstate, NY 13210, USA. [email protected]

      ABSTRACT
      BACKGROUND:
      The American College of Rheumatology has defined 19 neuropsychiatric syndromes associated with systemic lupus erythematosus (SLE) involving the central, peripheral, and autonomic nervous systems. Neuropsychiatric manifestations of lupus (NPSLE) have been shown to occur in up to 95% of pediatric patients with SLE.

      OBJECTIVE:
      The authors describe a 15-year-old African American young woman with a family history positive for bipolar I disorder and schizophrenia, who presented with symptoms consistent with an affective disorder.

      METHOD:
      The patient was diagnosed with Bipolar I disorder with catatonic features and required multiple hospitalizations for mood disturbance. Two years after her initial presentation, the patient was noted to have a malar rash and subsequently underwent a full rheumatologic work-up, which revealed cerebral vasculitis.

      RESULTS:
      NPSLE was diagnosed and, after treatment with steroids, the patient improved substantially and no longer required further psychiatric medication or therapy.

      CONCLUSION:
      Given the especially high prevalence of NPSLE in pediatric patients with lupus, it is important for clinicians to recognize that neuropsychiatric symptoms in an adolescent patient may indeed be the initial manifestations of SLE, as opposed to a primary affective disorder.

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  2. Very useful article. Thanks Joanna.

    I am the opposite to Jamie Lowe, having always believed in God and never believed in mental illness, even when they told me I had it, forced the drugs into me and said I had it for life. Finally getting Lithium in 2003 to “augment” the antidepressant Venlafaxine. None of the drugs “worked”. Except to take away my agency, flatten my mood, give me suicidal impulse, take away my motivation, raise my blood pressure and give me bone loss. And a 6 inch metal plate in my fibula to remember it by.

    I hated having to swallow Lithium and didn’t do it for long. It went against the grain. Bad enough getting forced to swallow antipsychotics or having them forced in with a needle, 1978 and 1984. Mental Health Act used in 2002 to coerce me into opening my mouth to the Risperidone. 72hr section. I took it because the psych ward was risky. Mixed gender. Nurses in the staff room. Female dorms overlooked by male patients in single rooms and no nurses around to protect us.

    The Risperidone depressed me, I was given Venlafaxine which depressed me more and the “mood stabliser” Lithium added to the flatness. Nothing else for it, I had to take charge of my own mental health. I met resistance on the last hurdle, coming off Lithium. Dr Kloss, psychiatrist, said I had a lifelong mental illness and spoke of the DSM chart, at a meeting. I told him I didn’t believe it and that I would taper the Lithium by 200mgs a month. I was on 800mgs a day.

    I hadn’t been on it that long, maybe 6mths, but I’d been on max doses of Venlafaxine for at least a year, after swallowing a bottle of the pills in 2002, on impulse and being rushed to Ninewells Hospital in an ambulance on oxygen. My family were annoyed with me and I was annoyed with myself. Gave me a fright. Never had done such a thing before, or since. I am not suicidal by nature.

    By 2005 I was looking for paid work. At a library job interview in the March I was walking down stairs after it, with the interviewer librarians, and caught my foot on the step, didn’t fall, but broke my fibula in 3 places, shattered bone. I was carried out of the library in a chair by ambulance staff to Ninewells Hospital, yet again. Got 6in metal plate on fibula and screw through the ankle. Screw got removed after 6wks or so. With a large screwdriver, I was conscious, local anaesthetic, music playing.

    It wasn’t until reading an article, first on Mad in America, in around 2013, about Venlafaxine causing bone loss in older people if on max doses, that the penny dropped. My fibula fracture made sense.

    Despite tapering the psychiatric drug cocktail and making a full recovery back to “normal” by 2004/5, the schizoaffective disorder still sits in my “notes” and my youngest son, who was treated in the same psych hospital from 2005-12, got “family history of” written in his notes. He got bad treatment because he was his mother’s son. Just as my sisters got bad treatment because they were psych patients in the same hospital as our mother when she got a schizophrenia label. In my earlier years of psych treatment I was fortunate to be treated in a different health board area to my mother. They didn’t “know”my family.

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  3. Thank you, Joanne, for speaking the truth. I’m one of the likely millions of people who was DSM-IV-TR misdiagnosed as ‘bipolar’ due to ADRs and withdrawal effects of an antidepressant / “safe smoking cessation med,” and in my case also a NSAI, and Ultram, a synthetic opioid. Can you imagine not one of my doctors knew opioids can cause odd thoughts? Nonetheless, lithium was the last drug I was weaned off, after a whole bunch of anticholinergic toxidrome gas lighting / “search for the right drug combination” stupidity fest.

    Lithium withdrawal absolutely can cause a drug withdrawal induced manic reaction, even in a person who was healthy and had no mental health issues prior to a bipolar misdiagnosis. I did not experience my first mania until about 6 months after I was weaned off the lithium, however.

    My lithium withdrawal induced manic psychosis wasn’t “destructive and scary,” however, it was more like a healing process, and an awakening to my dreams and the concept we are all apart of a bigger collective “Gaia,” as Paris described in his recent blog.

    To manage my mania, I danced about two hours every morning, plus rode my bike quite a bit. I gardened a lot, and did a major renovation on my home. I also drove around, listening to music lyrics on the radio, and reading people’s vanity plates, both of which oddly coordinated with my awakening / ‘psychosis.’ A person needs time to think through what is happening to them, so it’s unwise to squash this healing process with drugs or confinement, IMO. I also had a creative outlet, and did a lot of painting.

    No doubt a lithium withdrawal induce mania gives one a tremendous amount of energy, or ‘God speed,’ as I felt it was prior to doing my medical research. And therefore recommending exercise, instead of drugs, is a good suggestion. Creative outlets are also helpful, at least they were for me.

    And the absolute worst thing that can happen to a person experiencing a lithium withdrawal induced mania is for them to be taken to a hospital and “snowed” by doctors who misdiagnose this healing process as a return of ‘bipolar.’ That is what is “destructive and scary.”

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  4. Extreme mood variations are hard to handle. The only thing that can “cure” a high or low is the passage of time. After the peak high or low to keep the person restrained (psychiatry as crime prevention) is cruel.

    The effect has been expressed as feeling like turning into a wolf/ lycanthropy

    What is the cause ? The moon is the cause! ( hormone fluctuations) Joke comic from SMBC http://www.smbc-comics.com/?id=1573

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  5. Thanks for all your comments and suggestions. In response to Sandy, I think that sometimes medication is necessary for a severe manic episode, but ideally people should be gradually weaned off over a few months once they have recovered. I have also wondered if just using benzodiazepines rather than antipsychotics might be adequate, and less distressing for the individual concerned. Benzos cause other problems, of course, and the rapid tolerance to their effects that often occurs may limit their usefulness. I really think this should be tested in an RCT though. I know Guy Chuoinard from Canada started one in the 1980s with clonezepam, but I don’t think the full results were ever published.

    However, picking up what Chrys and others have said here, I have also found that people can sometimes learn to manage their mania with little and sometimes no additional medication. Often this comes with time and experience, and being able to make lifestyle adjustments to help them identify early warning signs, take time out etc.

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    • Thank you Joanna for your article and all you do.

      I have a couple of questions which always confuse me when using medication during the acute stages of psychosis or mania is discussed.

      Do you think antipsychotic medication is sometimes necessary during a severe manic episode because the person is so internally distressed, or because the person does not have the option of being in a ‘sanctuary type’ environment where the person could be kept safe during the episode?

      Also in studies such as Wunderink, people talk about using anti-psychotic medication during the acute stage of a psychotic episode and then tapering the medication off. My questions are firstly how can that ever really work if relapses typically follow -do those people go back on medication during the relapse and then go off again and again??? Wouldnt that just be a vicious cycle? And my other question is when is the ‘acute’ stage supposed to be over given that real recovery in these studies seems to take years and years……does the ‘acute’ stage refer to more florid positive symptoms rather than devastating negative symptoms? What about people who seem to be locked in a state of no agency? I Hope my second questions are not too off topic.

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    • Thanks for responding Joanna. I have written an Advance Statement with Consultant Psychiatrist, Dr David Reid, now Clinical Director NHS Fife (Scotland), and have put in it that if I happen to experience another psychosis that I do not want antipsychotic drugs or antidepressants as they do not agree with me. I have written that I would accept a benzodiazipine if mentally distressed. But I do not want to be forcibly drugged or injected.

      I have also said that I would prefer intensive psychological therapies and to be treated at home if possible.

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    • Thank you Dr. Moncrieff , and yes to the idea of ” benzodiazepines rather than antipsychotics”.
      My thoughts were/are not diseased. A benzo such as Ativan removes the feelings of fear and anger. Without fear and anger there is no violence, and communication can take place.

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      • does anyone know anything about using stuff like kava kava instead of benzos for mania/acute psychosis, with the intention just to calm things down and take the dangerous edge off?
        i have found that GABA used at the first hint of spiraling into psychosis can be helpful but once things are in full swing, it’s probably too little, too late
        thanks
        Yudit

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  6. My dad had a bipolar diagnosis and a high dose of lithium for many years. Lithium along with electroshock was one of many things that unfortunately ruined his life.

    A few points relative to this article:

    – There is little reliability or validity behind the nebulous concept “bipolar”; therefore the studies and statements about what works or doesn’t work for “it” should be taken with a grain of salt. One learns more from understanding a person’s story, individual distress experience, and what lead to their particular problems, than from these group studies about what metal works or doesn’t work for “bipolar”.
    – As Whitaker wrote about in Mad In America, studies of “bipolar” in the early 20th century showed a nonchronic course where most people having a manic episode got better and went back to relatively normal lives. Now in the early 21st century, chronic impairment and disability is the norm; this is directly caused by the zombification process, i.e. ingesting high levels of an emotion/cognition-dulling metal into one’s brain for long periods.
    – How pathetic is it to say… “The best “treatment” we have for your grandiose manic feelings/behaviors is to zombify you by giving you one of the metals off the periodic table”? Something to think about if you’re a psychiatrist, and to honestly assess whether you are understanding what might cause your client’s bipolar symptoms or just thinking of them as having “an illness”…

    As for ‘if not lithium, then what?’ – How about psychotherapy and peer groups? If we had studies of long-term psychotherapy or group support (e.g. something like Intervoice, but for mania) for people with “bipolar”, I’d bet a lot of money these would have better results than the metal. There are some good individual reports of people with manic symptoms being treated in long-term psychotherapy – meaning intensive help for 3-5 years – for example, in Murray Jackson’s work Weathering the Storms. They think about the manic symptoms as overwhelming emotional reactions that relate to events in the person’s past/present life, and that can be understood, tolerated and overcome with support. Given how much most psychiatrists suck at helping people with bipolar symptoms, these qualitative individual reports should be given much more weight relative to the sucky “evidenced-based” quantitative reports of how lithium “works.”

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  7. Thanks, Joanna, for enlightening us a little more on Lithium. I developed some kind of thyroid condition, for which I was prescribed drugs, after being prescribed Lithium for the impugned “schizo-affective disorder” some psychiatrist claimed I had. Curiously enough, the thyroid condition disappeared once I threw out the pills. It is my contention that most of the so-called “bipolar disorder” that afflicts this planet is the result more of drugs than of any inherited biological (or mental for that matter) condition. Robert Whitaker points to many of these of iatrogenic pathways to disorder in Anatomy Of An Epidemic. You’ve got people who do cocaine, sometimes in conjunction with other uppers and downers, and as you would imagine, it throws their schedules out of whack. You’ve also got a percentage of the people who use stimulants for ADHD, and a percentage of people who take antidepressants for depression, developing what are characterized as “manic episodes”. Suddenly the case has taken a turn for the worse. Harvard psychiatrist Joseph Biederman was responsible for a big leap in the “bipolar disorder” rate when he inferred that much juvenile ADHD was actually early onset “bipolar disorder”, a move which ultimately sent the “bipolar disorder” rate racing ahead of that for schizophrenia. Obviously, if you diagnose “disease” where it previously wasn’t, the “disease” rate is going to go up. If removal of Lithium actually causes relapse, here then you have another example of chemically induced “bipolar disorder”. I would say that we have a big prescription drug abuse problem even, or perhaps especially, where “medical advice” is followed to the letter.

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  8. Hi Joanna,

    Great article and review of research. There are clearly numerous problems these days with the diagnosis and treatment of bipolar disorder. A major health hazard presently is that bipolar disorder has become the newest fad diagnosis, with many doctors using it for anyone who has mood changes, including in children. These doctors then follow standard protocols and pharmaceutical marketing to put people on concoctions of medications. As your article brings out, any medication that has sedating effects will appear to reduce symptoms from the doctor’s point of view, though these medications can often interfere with well-being and functioning. So much of apparent statistical significance in medication research can be attributed to sedation and other enhanced placebo effects. You point out clearly how variable is the progress and recurrence of what could be called actual bipolar disorder. There are many people who have just one or a few manic episodes. I have seen people who have had some symptoms in adolescence or early adulthood and then never again. Some people may get symptoms later in life. However, psychiatrists who are primarily hospital based, as well as many other psychiatrists, tend to assume the bipolar is a life long condition, partially because they may see primarily people who might have more severe conditions, or who might appear to have increased morbidity due to treatment. I have had many experience with patients who do very well with medication as needed approaches or, as has been pointed out in the comments, with little or no medication and psychological intervention when needed. Of course, in order for these approaches to be successful, people need, good supportive environments, as well as quick access, and good follow-up from treating physicians. I do not use lithium with patients as there are better alternatives. One also needs to work with individuals within their comfort zone, when deciding on what approaches to use. There is no excuse for practicing simplistic flow-chart psychiatry, as all patients are individuals that have different life histories, evolution of symptoms and needs. This is why being a psychiatrist can be difficult, as one has no simple protocols to follow, apart from treating everyone with respect and true care. Psychiatrists are often scared when treating a person who has been diagnosed with bipolar illness, as the possible consequences of episodes can be devastating. Being worried about possible deterioration in a patient is no excuse for over-treating or mistreating people. We can not practice psychiatry defensively and get best outcomes for our patients. Being a patient is even more difficult, as one is putting one’s life in the hands of doctor who can’t have complete knowledge of all possible ramifications of treatment, and cannot know the full picture of an individuals life.

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    • Relative to your last point about “patients putting their life in the hands of a doctor”, people should also be encouraged that they do necessarily not have to “be a patient” at all or for any length of time- i.e. do not have to think about a psychiatrist treating them / a diagnosis as the best approach to their problems. If desired, people should be free to reject the bipolar diagnosis, to avoid treatment from a psychiatrist, to say no to medication, and to seek psychotherapy / non-psychiatric social support to overcome their problems.

      I say this as someone who dealt with a severely “bipolar” father and interacted with psychiatrists and hospitals for many years.

      Lastly, I think we need a new word for “patient.” People with serious emotional problems would be better referred to by a word that recognizes that the “doctor” may know less about their problems than they do, and should not be put on a pedastal. Maybe just “human being” or “person”.

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  9. What interests me is the fact that until the era of drugging people came along what was once called manic depression was a rather rare thing. And, on top of that many people recovered after experiencing one episode of problems and then went on to live rather sedate and “normal” lives.

    Jump to today and all of a sudden everyone and her sister is Bipolar and we have an epidemic. What also interests me is that we went from dealing with something that was episodic to something that is now chronic. How did all this happen? My suspicion, although I’m only a lowly peer worker, is that the drugs that are used to “treat” this condition are the cause of a great many problems. Rather than curing anything the drugs themselves have actually caused an on-going problem for people.

    As far as the lithium is concerned, I’ve never understood how anyone could justify the use of a heavy metal poison as a “treatment”. Why is it justified and ok to slowly poison someone over time and call that a “treatment”. Like so many of the other so-called “treatments” which the mad have been tortured with, I sometimes wonder if the “cure” is worse than the “disease” itself. Why can psychiatry conjure up all these spurious “treatments” that they pull out of their magic hat? I’ve come to the conclusion that it’s perfectly ok to do these things to us simply because we are mad and do not count for anything at all, especially in today’s society.

    I suspect that there are plenty other things that could be used temporarily to help people in this kind of crisis rather than putting them on a heavy metal poison for the rest of their lives; until they die from the “treatment”. Call me cynical if you will but so be it.

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  10. I took Lithium for several years as a result of being tagged with a diagnosis of “bipolar disorder.” Eventually, it began to affect my kidneys and other organs, so I went to a Chinese Medicine practitioner, and she said were I to learn what ‘grounding’ is and practice it daily with diligence, and that were I to balance my kidney chi with herbs, then I’d be able to heal naturally and leave all medication behind. She was 100% correct.

    That was 15 years ago. I’ve no health issue at all since I completed my recovery from the withdrawal, either mental, emotional, or otherwise. It was all made up, and once I woke up to how the diagnostic/medication system operates, that led to full healing, integration, and transformation, because I was no longer making those same mistakes and following this misguidance.

    On the other hand, I had an uncle who died of kidney failure from having taken Lithium for over 25 years. That stuff is toxic, and there are so many alternatives because there are actually different perspectives on what this HUMAN polarity is about. Not all see it as a psychiatrist would. That is merely one perspective, and not one which has served us well in any way whatsoever. Chinese Medicine gets results from their way of seeing and doing things, which is diametrically opposed to psychiatric perspective.

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      • Hi Fiachra, grounding is being connected to the earth for balance, the way we ground electrical currents. Our bodies, minds, and spirits are energy, and when we are not grounded, we experience stress, dissociation, illness, agitation, worry, paranoia, and all kinds of potential imbalances, because when we are not grounded, we are not in synch with ourselves and in perpetual uncertainty. This causes perceptual distortions, chronic fear and anxiety, and also adrenal surges and exhaustion, what Chinese Medicine calls “tired but restless syndrome.” (And what we call ‘mania’).

        Grounding is something to do daily, for energy nourishment, the way we eat to nourish our physical bodies. It connects us to our natural state of being, from which society, in general, has strayed so far away. This website is a good summary of it:

        http://healing.about.com/od/grounding/tp/grounding.htm

        It can be done through mindfulness, but more so, it is a conscious intention to come back to center and connect to the earth, and specifically to draw earth energy into our bodies, for balance, healing, and continual well-being. It also supports clarity and feeling good, uplifted. It is naturally calming to the mind and soothing to the spirit, and something that can benefit anyone, and also something I feel most people could stand to do, for the benefit of everyone.

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        • Thank you very much Alex. You describe it eloquently. I can see what you mean, and why it works.

          I hope the Chinese recognise the value of the natural methods, as these solutions contradict “mental illness”.

          Thanks again.

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          • That’s exactly right. When the question goes from “am I sane or not?” to “am I grounded or not?” then the paradigm has shifted, ‘mental illness’ becomes irrelevant, and we’ve brought ease and clarity in our lives. That’s truly all it takes. The hard part is breaking old habits of belief and allowing our perception to evolve past the group think. Easier said than done, but well worth the effort in my experience. Indeed, it is a viable and realistic solution.

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          • A few things I wanted to add about the value of grounding that I find really helpful to remember always, which hopefully might speak to some people—

            When grounded, one is in present time, inherently, so therefore, we are not attached to our issues from past time when grounded; that is, there is no trauma in that moment, because grounding brings us into pure present time, and post-traumatic stress is, by definition, past time. Personally, I feel most of what we are talking about when we talk about disabling mental distress is some kind of post-traumatic stress, even if on a subtle level. A lot of what is truly traumatic can easily be written off and neglected in an unenlightened environment. That suppression and denial of trauma is what leads to the more stigmatizing diagnoses.

            The thing about pts is that these are habits of thought which we unwittingly repeat because there tends to be no closure or resolution from the past. In present time, the resolution to trauma is to practice present time focus, grounded, and this re-routes those neural pathways that continually remind of trauma, the habits of thought. This changes our perspective entirely, to see our past in a new way, from a grounded perspective. That gives it meaning and purpose, something which propels us into deeper awareness, from which we can grow and evolve.

            Earth energy is the most powerful natural healing agent we have available, which is why root vegetables are always highly recommended, for example. We need the earth to heal—‘Mother Earth.’

            When we see the trauma from a new perspective—grounded in present time—then we can achieve new clarity, that which resolves the inner conflicts that had become chronic. This shifts our entire world view, mostly from our hearts, as integrating our splits is what increases our capacity to love. New life experiences follow, better manifestations. We can experience joy.

            So that’s an extremely valuable result of practicing grounding on a daily basis, in that our focus changes to where we have more inner peace, as well as control over what we are manifesting in life.

            When we are not grounded, manifesting is way more of a challenge, and we generally have to depend on others. Grounded in present time is where we find our personal sovereignty. One of my teachers says, “It’s like a light bulb turning on.” Indeed, it is.

            Being not grounded inhibits our ability to manifest what we want, and instead, we end up manifesting by default, which is where we risk becoming a victim of our own manifestation. The whole point of healing is to gain control of our personal experience so that we can create what we most desire (including that which we need to heal from anything), because in a grounded state of being, we know our inner guidance, without a doubt, and therefore, our unlimited creative capacity. Without grounding, we’re spitting into the wind trying to manifest.

            Grounded vs. not grounded is the difference between ease vs. effort, clarity vs. confusion, and scarcity vs. abundance. That is a fact! Ask anyone who knows about grounding. THE most basic and vital lesson in all my healing, it all started with getting myself grounded, and learning what that means. Now, it’s a lifestyle, as if I suddenly began to eat food after starving most of my life. Can’t say how grateful I feel to have finally learned how critical it is to be grounded, if we are to be happy, healthy, prosperous, and at peace.

            I hope it catches on because it DOES bring peace, at least it’s the necessary start of it, which is why grounding is the cornerstone of my healing practice. If we’re not grounded, we will not receive healing and life will be much harder than it need be.

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  11. I too have the dreaded “Bipolar I.” If it wasn’t for my somewhat affluent parents supporting me, it’d be “schizophrenia” and I’d be pumped full of some sort of antipsychotic on an involuntary basis. As is, I’m on a lovely 4 drug cocktail (no lithium or depakote, praise God), chasing the side effects wirh Orthomolecular. My counseling is pleasant convo and talk about meds. Such is the nature of Community Mental Health around this part of the US.

    Anyway, I enjoyed this article. Its crazy, how little evidence is there for any one (often noxicous) pill, much less combinations of little pills. I think maybe the rat race is one reason psychiatry flourishes. Who has the time and resources to step out of society, slow it down for a moment, truly recover? Very few. Factor in how blaming the brain shifts the focus from society and family dynamics to a “sick” individual, plus profts involved, and…you’ve got a hot mess.

    It seems to me that psychiatry sometimes offers “treatment” through penance. Lithium, for instance; “harsh, but effective.” You tolerate it, you suffer for your sin of being crazy, bad, what have you. I would argue that clozapine falls in the same category…”treatment=pain” is also “highly effective treatment=lots of pain.” I don’t get it.

    Me, I’m on coerced “voluntary” treatment. Take your pills, dearie, or you go to either jail or a mental hospital. Definitely better than what your typical Community Health patient gets, but…yeah. The places where law and psychiatry intersect show you the true nature of both.

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    • Y.I.S.”Take your pills, dearie, or you go to either jail or a mental hospital. ”

      I think only if you have a court order ( coming from some kind of illegal act you performed) , do you have to take pills.

      If you were just a criminal , you would be forgiven in time. As you have a “mental illness” diagnosis, you are never forgiven for doing something wrong.

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  12. my friend diagnosed with bipolar who has been on drugs for decades had a violent father, has had a host of horrible things happen to him and almost lives with a drug addict with whom he has a very difficult life.

    You know what I am going to write next:

    All of this is ignored by services.

    I’d be interested in knowing how the Open Dialoge teams in Western Lapland and elsewhere deal with mania.

    I will leave it there.

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    • When I was briefly doing involuntary hospital evals (and I let go almost everyone I saw!) I ran into at least a half a dozen young women diagnosed with “bipolar disorder,” all of whom had severe childhood abuse histories, none of which were documented or considered of particular importance to their psychiatrists. One was 17 and developmentally delayed, emotionally about age 6. She was raped. Was depressed for about a year, then disclosed the rape, and immediately became aggressive. I learned this in a 10-minute conversation with her mom. No note of this in the chart. “Bipolar disorder.” Not even a rule out of PTSD. I got her diagnosis changed so at least they’d have to give her some kind of talking therapy, but I was appalled. After that job, I knew I could not work in the mental health system any more. It is more insane than any of the clients it purports to serve.

      Bipolar has become a catch phrase for anyone who is emotionally unstable for any reason. It’s total BS. I did see a few “classic” bipolar presentations, but they were not served well, either – drugs and “case management,” which meant making sure they stayed on their drugs. No kind of therapy or exploration of how and when this started, and very little skill development on how to cope when things started to feel out of control. It was a joke, except it was not at all funny. And don’t get me started about foster kids…

      —- Steve

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        • I am an advocate for children in the foster care system, and mostly manage volunteers who do the front-line advocacy. It’s called the Court Appointed Special Advocate (CASA) program and there are such programs all across the USA. I like it because I can help kids get better lives and I can also speak my mind and follow my conscience without having to worry about offending my bosses or colleagues. My history as a counselor/mental health worker is very beneficial in being able to talk mental health jargon with the arrogant elite in the mental health world, and in being able to see through the usual deceptions in proposed diagnosis and treatment of these poor kids, most of whom have nothing at all wrong with them except having had the bad luck to have parents who have not provided what they needed.

          What about you?

          —- Steve

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  13. If not lithium, then what? How about potassium?
    Lithium carbonate and lithium orotate are toxic in any amount. Potassium is found in every cell in the body.
    The symptoms of potassium deficiency or an inversion of the sodium/potassium ratio are the same as “mental illness”.
    The drug of choice for “mood swings” prior to lithium carbonate was potassium bromide, and it actually seemed to work quite well. The downside was bromine toxicity, and like all the “old bromide” preparations it was withdrawn from the market in the early 1960s.

    Another attempt to make a bio-available from potassium is potassium chloride (K-Lyte). Again, chlorine is a toxin and common side effects of potassium chloride include nausea, vomiting, stomach discomfort or pain, and diarrhea. Frequent blood level tests are also required for safety, and it is a prescription-only medication.

    No one should employ mineral supplementation without a tissue mineral analysis. Blood tests are not an accurate indicator of bio-available mineral levels in the body. Should such a test indicate a potassium deficiency, we have today a non-toxic source of potassium readily and inexpensively available, chelated potassium. More information here. http://www.arltma.com/Articles/index.htm

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          • Thank you for alerting me to the sale of a lithium supplement by Analytical Research Labs. I will call them and inquire about it.

            I first learned about ARL and the Russell Charts when I worked in the nuke weapons industry. ARL was doing personality profiles based on hair analysis for security clearance purposes back in the 1970s. Lithium is a important defence element, used in the hydrogen bomb, for air purification on submarines and spacecraft, and now of course for batteries. Its toxicity in any amount has been recognized for years and you can verify this in the US Toxic Substances Act. It is absolutely non-essential for good health, mental or physical.

            The Russell Charts are very advanced tables of the elements which show that lithium has the strongest affinity for fluorine and potassium for bromine. This may explain why lithium carbonate causes kidney damage, especially if the user is drinking fluoridated water. Lithium fluoride is a rare earth glass frequently used in camera lenses.

            ARL is a for-profit business. Perhaps they are just reacting to customer demand. As you probably know, there is a great deal of irrational hype surrounding lithium. The chelated lithium they sell is probably harmless in trace amounts.

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          • I just got off the phone with ARL. As I suspected, they are just reacting to customer demand. They never suggest lithium as a supplement for their tissue mineral analysis clients. As I have said before, one should never take any mineral or even vitamin supplement without a tissue mineral analysis.

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  14. Thanks so much for this piece Joanna. I have helped a number of people who have chosen to get off lithium after an initial diagnosis of bipolar. And I entirely agree that the long term health implications far outweigh the potential for reducing “episodes.”

    I think we need to move towards examining how to help people work through manic states without reliance on any long term pharmacological agent. There can definitely be place for the short term use of psych drugs- especially benzos- in the case of strong episodes of mania/psychosis.

    At the same time, there is a strong move by alternative mental health practitioners to examine non-pharmacological tools – including managing environment, diet, herbal medicine, acupuncture, etc that I have seen in my practice as effective in helping people- even in strong heightened complex manic states.

    Most all of the relapses I have seen into mania have been due to people stopping meds- usually due to their horrendous side effects. I believe that the mania that occurs afterwards is almost always iatrogenic in nature- due to the withdrawal.

    We would not look at a heroin addict who is withdrawing and experiencing horrendous hallucinations, severe anxiety, panic and insomnia as having a mental illness. Why do we call someone experiencing withdrawal off of lithium “mental illness?”

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    • “There can definitely be place for the short term use of psych drugs- especially benzos- in the case of strong episodes of mania/psychosis.”

      I agree with the above regarding sort term use. If only the psychiatrists and other physicians could be this prudent, and not prescribe SSRIs, benzos, neuroleptics, etc., and combinations thereof, for months, years, and decades!

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  15. The original experiments were done on prisoners of war.

    I think a lot of people probably died but they don’t make it into the official history.

    https://en.wikipedia.org/wiki/John_Cade

    His 1949 article here
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2560740/pdf/10885180.pdf

    Basically he used his own urine “sane piss” and urine from people he thought were mad and started injecting guinea pigs. Some dies more slowly than others. Later on he started injecting people with more or less the same results. The names of these human sacrifices are lost to history.

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  16. In 1992 I had full-on a manic psychotic breakdown and landed in hospital. The mega-doses of Haldol they gave me didn’t even touch the sides, so they tried ECT. The whole experience was brutal.

    It put me off seeking help from psychiatry again – I never went back for more. If I’d followed doctor’s orders and stayed on the Haldol long-term I don’t know how I’d be now.

    Over time I worked out a way to keep the mania in check. Sleep is the key, and it involves short-term Zopiclone when things start to feel dicey. I use this: Flowchart: Am I going nuts? Link to flowchart: http://www.auntiepsychiatry.com/AuntiePsychiatry/Auntie%20Psychiatry.html#Flowchart1

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  17. “I don’t believe in God. . .” is, tied with the Washington Post’s piece on Alison Hymes, the mainstream media’s best article on Mad Rights and Mad Health in the year 2015.

    It’s evident now that Ms. Lowe’s psychiatrist had no desire to ever set Jamie free from the deadly and dehumanizing control of mainstream and pro-force psychiatry. Embarking upon a lifestyle of abstinence from psychiatric drugs and psychiatric brainwashing is risky, time-consuming, and labor intensive for even the mildest forms of mental illness. But for people such as Ms. Lowe or myself who live with what are now considered to be serious mental illnesses, a clinician’s ambivalent or lukewarm commitment to our emancipation from mainstream and pro-force psychiatry will do nothing more than make us needlessly suffer and expose them as the quacks they really are. If Ms. Lowe’s circumstances were similar to my own, she would not even have had a long shot at breaking her physical and emotional dependency on psychiatric drugs and psychiatric brainwashing without a YEARS-LONG period of rehabilitation that consisted of live-in housekeeping and home health care, a hiatus from demanding professional and social obligations, rehospitalizations to manage the relapses, and CFT (compassion focused therapy). This doctor behaved negligently and maliciously by withholding these services from a patient whom they agreed to assist in leaving the mental health system and by failing to inform them of the potential for negative outcomes during a termination of treatment which would be almost entirely unsupervised and unsupported. Understandably, the trauma of those negative outcomes had sapped Ms. Lowe of the energy she needed to act upon her dormant instincts of self-preservation and begin to question both her doctor’s motives for abdicating his responsibilities to her and her friends’, family members’, employers’, and neighbors’ reasons for making her feel “menacing” and “unbearable”. Exhausted and stripped of hope and self-worth, Ms. Lowe was compelled to resign herself to a lifetime of pharmaceutical roulette and unstable, inauthentic relationships with herself and with the people who remain invested in her as long as she conforms to the norms of our sanist world. This was the only possible result from the unprofessional, deceitful, malicious, and reckless choices that Ms. Lowe’s doctor made regarding her care, and I doubt that he would ever want her living any other way.

    Unfortunately for the lay reader of this article, they are not likely to glean that from this propaganda which subtly but fervently advocates for able-normative supremacy and for the sanist mental health care policies it spawns, the two of which had torpedoed Ms. Lowe’s recovery from her mental and iatrogenic illnesses. A person who has not yet had the opportunity to learn the truth about recovery from mental illness will be fooled into thinking that a Mad person’s “recovery” is the 15 to 20 year window of time that precedes their early death from the psychiatric drugs they consume to aid their efforts at masquerading as an able-normative person. This masquerade, as Ms. Lowe makes perfectly clear in her op-ed, is played by the Mad person in order to make their appearance, speech, behavior, and needs palatable to the able-normative majority. Though the costs that Mad people incur as they endeavor to appease a sanist world are social marginalization, self-alienation, a weakened body, and premature death, this article will lead the lay reader to rationalize these affronts to human dignity as the punishment meted out by God-like psychiatrists to Mad people for being “menacing” and “unbearable” genetically deformed scourges. Ms. Lowe’s readers will deduce this from her op-ed just as she herself deduced this from the people who inculcated her own hatred for herself so many years ago.

    The apparently stigmatizing effect of this message on Mad people, at first glance, seems amplified by the fact that it was written by a Mad woman. Upon closer analysis, however, one can recognize and appreciate its power to debunk the sanist attitudes that have and are continuing to ruin and snuff out the lives of so many Mad people, her life not excluded. Ms. Lowe has written, to date, the best first-person account of internalized sanism that I have ever read. Far from being a mere cautionary tale of the Mad person’s tragic fate in the mental “health” systems and the greater society, Ms. Lowe’s account accomplishes the very difficult task of rejecting a stigma which is still ruling and may someday end her life. Perhaps without even realizing it, her story is an example of the proverbial gun which this world aims at the hearts of Mad people – destroy yourself or we will do it for you. In one sense this is a “Sophie’s Choice” because no matter who pulls the trigger, the Mad person will never keep their life. Viewed through the eyes of a woman who, at some level, is probably aware that she’s staging a last-stand rebellion against a world which will not let her live, the former “Choice” means so much more than that. It says, without a shadow of a doubt, that there is nothing worth fighting to live for in this world that turns Mad people into beggars, guinea pigs, clowns, or inmates. Life, in this world, is valuable enough to live for, but not to the bitter end. By making her “Choice”, Ms. Lowe scoops the self-hatred out from inside the recesses of her soul and then flings it back out into the world from where it originated. Sometimes people can’t save their lives and must settle instead for saving their power to leave a scar on the world that’s killing them off.

    Jamie Lowe’s complex and intimate account of her struggle with mental illness and her defiance of sanism speaks the thoughts that many Mad people can’t or are afraid to express. Her contribution to the Mad Pride Movement is truly a blessing.

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  18. I realize articles like “‘I Don’t Believe in God, But I Believe in Lithium’” are published to facilitate further dialog. However, as someone whose life has been ruined by biopsychiatry, I find these pieces very tough to read. I cannot wait until the day we’re able to move beyond all of this spin.

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  19. I’m very happy this article has come out. I was just here to MIA to look up another article and found this. I”ve been trying to get together a group of lithium survivors. Maybe a mailing list where we can bounce ideas around. I tried asking on facebook but I am not on facebook anymore. If you are interested you can email me [email protected] (okay to publish my addy here) or just post here how you feel about such a list.

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  20. I was given lithium for the following reason:
    “We don’t know what else to try. What the heck! Give it to Julie! She’ll try anything!” That capsule might as well have been Life Cereal, and I might have been Mikey. Little Miss Compliant.

    Either way, I did not have bipolar. I was at Gould Farm at the time, having been enslaved there following a suicide attempt. I told them I had an eating disorder. Upon my arrival, they told me they didn’t treat eating disorders. They said, “That’s okay, you look depressed. We will treat you for that.” Then, they filed paperwork for me for disability. On the form, the psychiatrist wrote schiz simply because that’s what he put on everyone’s form. I’m rather sure of that, since we know now how much he hated paperwork. We also learned about four years later that he’d been practicing without a medical license for years.

    By then, my thyroid had shut down and I had diabetes insipidus. He had been fired from Gould Farm and had fled the state. In his wake, there were two suicides that I knew of. I don’t believe the victim’s families were ever informed. I don’t know if there were subsequent suicides that I never found out about or in his private practice. It took the psychiatric people 27 years after that to stop claiming I had “psychological polydipsia” and come to their senses. They finally figured out that I had had diabetes insipidus all along. They continued to accuse me of faking my need for water, and continued to bully me until my kidneys failed and I almost died in mid-2013. Is this not gross malpractice, one event after another?

    My mind is made up. It is confirmed that the insomnia I have is due to trauma from the abuse that I endured while inpatient at Mass General and another hospital in Boston. More malpractice. I am going to demand that these folks that did the worst of the abuse pay for the treatment that I now need to resolve the trauma and get a good night’s sleep. I intend to demand that they pay out of pocket. And apologize. As for Charles Capers, the Gould Farm doctor that was wild with the prescription pad, I have no clue if he’s alive. Maybe his estate will pay.

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  21. This was quite an interesting article, and not being familiar with this area, I was surprised at the extent to which much of the data supporting maintenance treatment in bipolar disorder can be explained away as a rebound effect.

    Nonetheless, a few points of concern:

    1) I was surprised to see Jamie Lowe’s description of her positive personal experience dismissed by reference to theory and clinical trial results on this site, where positive clinical trial data is so frequently dismissed by referral to patient anecdotes. What is our standard of proof here? Individual patient anecdotes, randomized clinical trials, or whichever happens to make psychopharmacological approaches looks worse in any given situation?

    2) “It has proved impossible to demonstrate that people receiving modern drug treatment for manic depression do any better than those who don’t, or didn’t.” I would say that problems with design issues and failing to properly consider the possibility of withdrawal phenomena does not show that “it has been impossible to demonstrate” better results, merely that it has not necessarily been done.

    For example, PMID 2237512 describes a trial in which people stabilized on paliperidone were randomized to continue paliperidone or switch to placebo. The median time to relapse was 283 days in the placebo group and 558 days in the paliperidone group. 283 days hardly seems attributable to a rebound effect.

    3) In pointing out the 40% relapse rate at 6 years in patients “known to be compliant” with lithium therapy in reference 15, Dr. Moncrieff fails to mention the study’s conclusions that ” Lithium carbonate was significantly more effective than placebo in preventing relapses” over this time frame.

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  22. Lived experience the nonsense atom smasher ! Auntie Dottle anytime over pretension , organized pseudo scientific clinical trials . Put that lipstick on that expensive pig , tell em we need more study’s to establish , that evidence based pseudo science rocks , while we cash in on dispensing poisons to them and their babies . Yes we have unmitigated gaul. , thats all. The dust bin beckons.

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  23. About 25 years ago, my friend’s step-uncle was a successful emergency room physician in Boston. At about 35 years of age, this physician had some type of “nervous breakdown” that left him depressed and unable to work. He then went down the biological/drug route of treatment.

    I further recall my friend’s step-uncle began manifesting mood swings and mania for which lithium was added to his regimen. Around this time, my friend was at Thanksgiving dinner with the physician and asked him to pass the salt. My friend told me his hand was “shaking like a leaf” as he passed the salt.

    To my knowledge, the above individual never recovered or worked again, his liver was damaged by the lithium, and he remains heavily drugged to date. He lives on a disability pension from the hospital he worked for.

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  24. Some pseudo science free Traditional Naturopaths , Richard Schultz ND ( http://www.herbdoc.com ) Linda Page ND ( Wrote the great book “Healthy Healing”) Check out what they do at the google ( Paracelsus Klinic ) (yes with a K) also the Gerson clinic which has to operate across the border in Mexico (Dr. Max Gerson was Albert Schweitzer’s doctor. ) because they interfere with the AMA pseudo science cancer management and money extraction machine . Likewise with heart disease.
    Believe Alex who comments quite often at MIA. He should be invited to blog at MIA. Even I on a person by person individual basis know better what to do non coercively concerning bi polar, mania depression etc, then 99.99% of psychiatrists but all I’d probably hear is auntie doetle , auntie doetle, auntie doetle .( I’ve mentioned what works before so have others .) Then big pharma would take all the herbs I know to work and make them unavailable. They and cartel partners are trying to take control of supplements and herbs and can not be trusted . Oh yeah, they are not beyond protecting their interests with moral code free actions. I’ll teach anyone with need face to face for free . My email is http://[email protected] Yes that includes you Joanna Moncrieff ,MD

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  25. I’m really glad this conversation is happening, I would love to see a lot more written about lithium use and coming off of it successfully. It’s definitely giving me a lot to think about and share with others. After reading Joanna’s article and most of the comments on this thread I feel compelled to respond with an alternate viewpoint I am not seeing in this conversation:

    I’ve been taking lithium for 13 years and I’m really grateful for it. I’m also consider myself to be really intelligent and not emotionally or physically stunted from taking it.

    What I don’t see reflected in this article or any of the comments below it are the studies Robert Whittaker quoted in Anatomy of An Epidemic about “core responders” to lithium – that there are a small percentage of people diagnosed with bipolar disorder who have a really good, long term reaction to lithium. He didn’t put that in his book because it fit with his argument, he put it in there because he was being honest and wanted to reflect that he had done his homework and I’ve always respected him a lot for that. Lithium also doesn’t fit in with the critique of big pharma profits always running the show because no one makes money off of lithium, it’s a salt and it’s long since off patent.

    I want to say two seemingly contradictory things that are brought up for me by this conversation (because the world is complicated after all):

    1. Reading these words makes me want to slowly taper down off my lithium and get out of the trap that I’ve obviously gotten myself wrapped up in for more than a decade. I never planned to be on this drug for so long and it terrifies me to think of my kidney’s shutting down, growing old too quickly because I’ve been putting so much of this salt into my body for so many years. It’s exciting to hear about people coming off of it successfully because I’ve heard so many stories over the years of people coming off of it really badly.

    2. I have such an incredibly full life, I feel such strong emotions and I’ve wrestled with so many of my demons, and I still have a lot of wrestling to do. I touch the stars with my consciousness, I feel connection to spirit so much larger than myself, I have deep, solid friendships and love in my life. I feel purpose when I get up in the morning, I have good work to do in this world. I don’t feel like lithium has tapped my energy in a bad way, I feel like its given me lead weights to put on my wings so I can fly without fear of getting to close to the sun. That’s been my personal experience.

    When people tell me that lithium is a “brain disabling agent” (Peter Breggin) or that I’m being taken advantage of my psycho pharma complex, that I’ve been duped into poisoning myself, I shrug my shoulders. That’s certainly not how it feels to me. Would I go back in time and try and keep myself out of the psych system, damn straight. But I’ve learned to choose my battles and I know a hell of a lot of other people don’t have a choice as to the situations they end up in.

    There is a particular psychology I’ve witnessed and participated in over the years in the community of folks that read this website: a fear that someone’s decision to take a medication invalidates someone else’s strongly held world view. When we started The Icarus Project in 2002 we started our community guidelines simply: If you take psych drugs you are welcome here, if you don’t take psych drugs you are welcome here. I’m sorry if my decisions to take psych drugs make some folks feel uneasy. The truth is, reading this article and thread make me feel uneasy about my decision to take lithium. Maybe I’ll be inspired to start tapering down after all. But damn, that’s going to mean taking even better care of myself, and I already spend so much energy doing that. I’ll decide how I’m going to pick my battles.

    In my view the evidence that lithium helps prevent episodes of manic depression is far too weak to outweigh the harms it can cause (which commonly include thyroid damage, kidney damage, and acute neurological toxicity at doses very close to those used in practice, hence the need for blood monitoring). Manic depression is a highly variable condition. Some people have many episodes, some people few, and the pattern of episodes varies throughout life as well. Long periods of remaining well are not necessarily evidence of a treatment’s effectiveness. What we would need to demonstrate the efficacy and value of lithium is a prospective randomised trial in which people who had not previously been on long-term drug treatment were randomly allocated to start lithium or placebo. At present, my view is that the evidence that lithium might be effective is not strong enough to justify such a trial, given the health risks associated with it.

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    • I’m glad that lithium hasn’t been so disabling for you. It’s interesting for me to see how it affects different people in different ways. My husband took lithium (with an antipsychotic) for 20 years before tapering off slowly. The slow taper probably helped some but he still became very delusional, gradually over a year after stopping, and went on something else, something milder (just 20mg of ziprasidone) for a year or so before stopping that too. But everyone’s different and it doesn’t have to be like that for you – especially as I see from your writing that you’re not experiencing what my husband did on lithium, which was that he couldn’t express his emotions even though he felt them acutely, which was a certain kind of torture.
      Afterward, I thought that made sense to me, because lithium is an anti-convulsive drug and one of the aims of drugs for epilepsy is to separate the left and right hemispheres of the brain so that seizures don’t affect the whole brain, but only part. If so, then it made sense that a person could feel in the right brain and not be able to translate it into words in the left brain. And lo and behold, when my husband came off the lithium, he felt like a million dollars, suddenly able to be a normal person. Despite 3 psychotic breaks since, he won’t go back on the drugs. Somehow, we’re going to have to figure out another way.
      I wish you all the best with whatever decision you make – that you should be able to fly high and even get burned sometimes and deal with it and grow from it.
      Yudit

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      • Thanks so much, Yudit. It’s good to hear your husband figured out a way to get off of it. When I think about coming off my lithium the first thing I worry about is the effect it’s going to have on the people closest to me – my partner, my family, my good friends. I’ve been such a train wreck in the past, caused a lot of pain and chaos to the people around me. I think about having kids and I’m scared of being a crazy dad. But in the end I want to be around for the people I love, I’d like to hold onto my kidneys!

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        • “I’m scared about being a crazy dad.”
          My husband was a very crazy dad, and we have a bunch of kids, oldest one 15 during the last psychotic episode so definitely aware enough to see that something was “weird.”
          And yet, when my husband was supposedly crazy, he wouldn’t come home, telling people that, “i can’t let my kids see me like this.” Doctors don’t like to hear that kind of thing because it kind-of upsets their preconceived notions of what being crazy means. My husband knew exactly what was going on, even a lot better than other people, because he saw at a depth that is closed-off to “sane” people.
          So, in short, what i’m trying to say is don’t be worried about being a crazy dad. If only “sane” people worried about getting angry at their kids, neglecting them emotionally, and all the other stuff their kids suffer from. From how you write, it sounds like any kid you have would be getting a great father.

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    • Hi all. Another interesting discussion. Sacha, if it works for you at this point in your life it’s okay. I have successfully stopped taking Lithium and all meds but it took years of trial and error and ultimately a change in environment.
      I think everyone needs a carillon call to change. My was lithium toxicity in the hospital. Awful , awful especially since I had tried to stay away from that drug for so long.
      I was female in an emotionally abusive relationship so I was prime for the dx.
      Altered states can be scary and it is something to worry about with children. My kids have so far handled it. They are slowly beginning to understand.
      I am glad I am off meds. My life is so much better. But I had severe side effects and was not myself. I was scared myself but so far so good at this point.
      You have to be ready and have a good support network and the gift of time.
      Not all people are willing to commit.
      What we need is freedom to choose what we as informed patients choose to take or not take. Nothing else!

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  26. Sascha, I personally respect your decision. I, too, was not a zombie on lithium. However, I am clueless to this day as to how for 27 years they never figured out that I had diabetes insipidus. How could that be when I informed them of constant thirst and they saw me drinking that much? And after my kidney function began to drop, for roughly two years, while it was under 40%, I was never informed. After my acute renal failure and full code, this, too, was deliberately hidden from me and I found out because I found papers by accident. Since then, I have met many other patients who have had information regarding lithium deliberately hidden from them. I believed I was taking it with informed consent. However, I wasn’t. I did ask many questions and I am a highly intelligent person. I did not have a guardian. There was no reason to hide any of it from me that I can tell. I am not deaf and I am able to speak and communicate in the same language as my treators. I’m stumped, except that maybe they just thought I was “mentally incompetent” or, sadly, “just not worth it.”

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    • Sascha, Thanks for sharing your story. What you write reminds me again that really all we need is true informed consent for treatment.

      The world IS complicated and people have such different experiences…..what we need is honest information and then the ability to make a choice,…….once people have the opportunity to make informed choices, we would have people both on and off medication who were receiving good care , and then we would finally have the subjects to be able to do further research that compares people with and without medication. These kinds of studies could really help fine tune where and when medications may be helpful.

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  27. Yes, it’s complicated. My beloved boyfriend jumped off the roof while in withdrawal from alcohol cold turkey. He got a lifelong psych diagnosis he never should have been given, and died at 45 in 2003 from the drugging. He died 17 years sober, and, God bless him, helped many other drunks get sober. He was a paraplegic when I met him Thanksgiving weekend 1986. We were 28. Of course, “staff” told us it would never work, but we dated anyway, and stayed together all those years. I realized nine years after his death that he, too, had had undiagnosed diabetes insipidus. We used to “drink” together, mostly water or soda or iced coffee. The day he died, I had just ordered tickets for the two of us for a minor league baseball game. We had been many times. He always told me he wanted to catch a baseball in his hands, and give to a child, just to see that child smile. That was the kind of man he was.

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  28. You want my honest opinion? I’m 57 and I’ve lived in South America now a year. Here, I believe for economic reasons, people can’t afford doctors and so we just buy the drugs we want. No prescription. No doctor controls your life. Do people abuse drugs? Not really. People use herbs a whole lot, and marijuana is legal. This town has 7,000 people in it, probably one psychologist, and no psychiatrists at all. You can buy vino in any store and it’s cheaper than soda, though I don’t like it myself. There are more pet dogs than people, and no, I have never found statistics to prove that one. I’m guessing in this tiny town there are five vet offices and ten vets working overtime in them. Drugs are cheap. I think most adults can decide for themselves and don’t need “doctor” to make that decision. Ask your spouse if you need help, or your pals. They’re a better judge than some stuffy dude you meet with for ten minutes who is is a rush who only wants to hear about “symptoms.” Especially now that medicine in USA is done assembly-line style and is all hooked into “insurance.” Here in Uruguay I can buy any drug I want, though at first, I felt shy about it., not knowing the language at all when I arrived. I purchase very few altogether but it’s a comfort knowing that if I need something I am not fingerprinted and “doctor approval” is never needed. USA should have similar freedom. Buy ’em like vitamins. I always dreaded the day CVS “tracked” people and I went in there, swiped my CVS card, bought a bottle of, say, fish oil, and the auto machine said in a loud voice, YOUR SHRINK DISAPPROVES. GO TO JAIL AND DO NOT COLLECT $200. I am glad I deal in pesos now.

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  29. “Joanna Moncrieff, MD (MIA Author) on July 1, 2015 at 7:45 am said:
    I have also wondered if just using benzodiazepines rather than antipsychotics might be adequate, and less distressing for the individual concerned.”

    I take very small amounts of benzo’s to sleep at times and I find that quite quickly I develop a tolerance for them. I try not to do it for more than a couple nights. I get the sense that they are very hard on my system and leave me feeling really groggy. I’m not convinced that taking benzo’s instead of lithium makes the most sense for me. I imagine that if/when I end up tapering off the lithium I’ll be relying on benzos for sleep. It will probably be pretty disruptive, as compared to lithium, which has been pretty steady for a long time now. I’m going to do everything I can to take care of my precious kidneys though!

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  30. I did a research paper on lithium way back when. I remember that, when its effect on guinea pigs was accidentally discovered, what was most attractive to researchers was that it had the same affect-deadening effect of Thorazine without producing the “pseudo-parkinsonian” symptoms and tardive dyskinesia associated with it and the other phenothiazines.

    In other words, you could now take the “patient” out to dinner without fear of embarrassment.

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  31. Yes, Duane, this is what my mother was arguing when I was first put on Lithium and she herself saw that I had improved, and also, she noted that no one was listening to what I was saying about WHY I had improved. I was trying to tell them at Gould Farm that the lithium carbonate stopped my binge eating, so to me, it was like a miracle pill. Not only did they say, “That’s not possible,” but they claimed I never had ED. My mother argued that Li is a trace element and maybe I even needed it. What she never told anyone was that she herself had suffered the exact same ED that I had had when she was a teen, so you’d figure she would relate somehow. The Farm claimed I had made a remarkable recovery and seemed “stable,” however, I was thrilled to be able to eat without fear of bingeing. I read a number of recent studies stating that Li is indeed effective for some binge eaters. They also noted that most gain on lithium and I lost weight. They had no explanation. So there, Gould Farm! I am still in shock that over three decades they never took me seriously.

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    • Julie,

      Thanks for the comment. It would be interesting to see more studies, using *small amounts of orotate form*. It seems to show benefit with Alzheimers Disease, along with other conditions.

      Small amounts seems to be the key, but it’s hard to know who would want to fund a lot of studies… Not a lot of money in it.

      Duane

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  32. My issue, with many of these “treatments” is not what happened, but the subsequent coverup of that harm that was the greater harm. If they truly considered me a worthwhile human being, then they would have been honest and said, “We made a grave error,” or, “We did something totally unnecessary,” or, “We were deceitful,” and, “What you are experiencing is a direct result of what we did to you.” Instead, I got more bogus diagnoses to cover up the harms from “treatment.” The later treatments were for the coverup diagnoses, so I never needed them. This is what happens when you are in the System too long. I feel that this is pretty much the norm for most of us lifers.

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  33. Julie Greene writes: “how for 27 years they never figured out that I had diabetes insipidus”

    When I told my p-doc that I had it, and that it was a side effect of the lithium, she said, “Is not!” We had a few moments of “Is too! Is Not!” until she looked it up and said “hmmm. so it is.” (If I had a dime for every time I educated a doc like this. I thought they went to school for that?)

    I was never prescribed lithium in the USA, my doc was aware of my hypothyroid condition, and thought, as Dr. Moncreiff did, that the “narrow margin of treatment” for lithium, was not worth the risk.

    But upon arriving in Australia, and saying the dread word: bipolar, out comes the lithium salt. Apparently in MOST of the world, it is the “go-to” drug for bipolar.

    I lost my thyroid. I developed mysterious semicircular rashes on my inner arms, torso, and inner thights (dermatologist called it latin for “bumpy skin” and gave me strong cortisone cream – which cleared the rash, but only for as long as I used the cream.)

    I kept telling my medical professionals that this looked like a toxic reaction. But I was only the “patient” and so it wasn’t tended to.

    Combined with statins and PPI’s, I became suicidal, so she added a lame SNRI (reboxetine, only used in the EU, and maybe not even there anymore)…..

    It started with the PPI’s, my chemist said: not for long term use, damaging to bones. Then the statin. My mood lifted immensely coming off the statin.

    But by then my gut was also ruined, and the diabetes insipidus started.

    I eliminated the Reboxetine in a slow, 10 month long taper. My p-doc laughed at how careful I was being, but I, like Sascha, don’t want to ruin what little life I have left – I don’t want to damage my friendships, or my husband.

    I used the Icarus Guide, 10% of current dose a month – or longer. Doing so, I have come off of 60% of the Lithium, and – lo and behold, the rashes are gone! The gut is still a struggle, but my creatinine numbers get better in direct portion to my taper.

    My mood – well yes, I have ups and downs. I have had 1-2 extreme manic episodes in my life – but now, post-menopausal, my life is not so dramatic anymore. I have chosen low stress pathways – and while it feels “lazy” it may just be what is right for me. I do not anticipate any more extreme moods.

    You can follow my story at Surviving Antidepressants: http://survivingantidepressants.org/index.php?/topic/5234-jancarol-reboxetine-first-then-lithium/

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  34. Oh my goodness I never had bad pimples as an adolescent, but as a 26 year old right up through age 38, I looked as though I were in the height of adolescence. My whole face, or sometimes, only 1/2 my face, was covered with acne from lithium. That alone made me unable to get a job. Not only that, but I was jeered at by shrinks over and over and one PCP said I was “dirty.” None of them considered it might be the lithium. All mental patients back then had pimples. And almost all were overweight from the drugging and were told we were lazy because we were out of work.

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  35. Postscript: I am one of the lucky ones: my withdrawal has not included akathisia, acute restlessness, muscular dystonia. “Just” organ failure: thyroid, kidney, adrenals, and possibly a reason for my hysterectomy, too. But of course, none of this can be proven. Auntie Dottle.

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