Lithium: A Survivor’s Guide for Parents

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Part 2 of 2

When I was a young adult, I went into therapy for an eating disorder that went unrecognized. Instead, I was misdiagnosed with bipolar disorder and placed on the drug lithium. My parents did not approve, but as much as they tried to support me, they had no say in the matter.

If your child is a minor, then you do have some say in whether and how your child engages with the mental health system. You may feel frustrated and dismayed in pushing back but remember: You’re also responsible for your child’s well-being. I am appalled at the number of parents who would rather risk seeing their child literally killed by psychiatric drugs than try anything else. Statistically, people who take these drugs tend to die 25 years younger than the rest of the population. If you simply accept what the doctors say, decades from now you may very well be attending your own child’s funeral.

I don’t mean to be harsh here. I respect the decisions people have to make. Please be aware, though, that the doctors are not going to inform you of the things I am about to tell you about lithium.

It is a dangerous drug.  Psychiatrist Peter Breggin describes it as a neurotoxin. Taken as directed it will eventually destroy the thyroid gland and cause kidney failure, and can also cause a rare kidney condition called diabetes insipidus. I have all three of these conditions, and all are from taking lithium. It is not a safe drug for anyone at any age.

Question Conventional Wisdom

Furthermore, “bipolar disorder” is not truly a lifelong condition, if it’s a condition at all, and it’s not due to a chemical imbalance that is somehow magically corrected by lithium. Psychiatric drugs often exacerbate the problems or, more often, create new problems in the people who take them. What the public doesn’t realize is that psychiatry has, for the most part, discarded the chemical imbalance theory popular decades ago. They do not know why or how the drugs help people, or even if they truly do.

Therapy can also be harmful. While the popular idea is that “taking a good look at yourself” might be healing, too much coerced introspection can cause self-absorption. This is a destructive path indeed. The general public is unaware of the addictive nature of therapy, especially long-term therapy, which was the protocol back in the day for many of us deemed “severely mentally ill.”

Our culture has taken a swing too far into the self-improvement realm, which instead of solving social problems, only increases class struggles. We now have a new class division— the sane and the insane — created by the dangerous idea that some people are inferior to others (eugenics). It’s time we started looking outward more and learning about each other. We need to focus on making the world a better place.

I am 61 years old now. I am living on the edge of end-stage kidney disease caused by lithium. If I could undo everything, take it all back, by all means I would not have taken lithium. I would not have started on any psychiatric drug nor gotten hooked on therapy. As I say, my original reason for seeing a therapist was for an eating disorder and somehow, that got twisted around, ignored, and then translated to “bipolar,” “schizoaffective,” or the Diagnosis of the Day.

What They Don’t Tell You

If you are considering lithium for your child, please talk to some adults like me who have taken this drug. Get another opinion. Please check out the drug resources here at Mad in America, for starters.

If your child is not a minor, then the decisions are partly out of your hands. By all means, your adult child should be making the decision whether or not to take lithium. However, from the patient’s viewpoint, it is nearly impossible to make an informed decision while on a locked hospital ward. Patients are rarely given adequate information to make an informed choice. More likely, they are told that for them, lithium is “as essential as insulin is to a diabetic.” This is untrue; while insulin is the only established treatment for diabetes, there are multiple options to ease mental suffering.

Your child will likely not be informed honestly of the consequences of taking lithium— especially the long-term risk of early death or kidney disease. I recall being told with a shrug, “It might make you a little thirsty,” as if it wasn’t very important to know the murky details. I implore parents to take the responsible route. You have more resources at your fingertips than your incarcerated child. Take advantage of your freedom and try to obtain as much unbiased information as possible. Knowledge is power.

On the wards, it is common for personnel there to essentially bribe patients, not allowing them to leave unless they take the drugs they are prescribed. In my experience, most patients complied with this demand. However, some were already hoping to stop the drugs. Typically, these patients who really did know better kept their intentions secret, for obvious reasons. Patients often take drugs just to earn their release from the wards, but after leaving, they stop them, even cold turkey. Stopping suddenly may lead to terrible consequences, but tapering is possible.

Support Your Child’s Choices

If your adult child wishes to stop psychiatric drugs, why not support this notion, instead of being an adversary? You may have supported your child when he decided to major in something you knew wouldn’t stick, or when he dated that girl who turned out to be nothing but trouble. You stood by him all those years. Why not stand with him now?

Along with the Mad in America website, the Icarus Project, Surviving Antidepressants, and the Inner Compass Initiative all have excellent resources and instructions on how to slowly and safely taper off psychiatric drugs.  Check out the “I Got Better” section of MindFreedom International. Talk to psychiatric survivors. Read our stories. I would not trust most doctors to take a patient off drugs safely. My experience is that doctors are not properly trained in how to do this since they assume patients will be on the drugs for life.

If your adult child makes the decision to stay on lithium, then do your best to be supportive of his decision. Nagging isn’t productive. Try to help him understand that the pimples, weight gain, and shaky hands are not a mental illness. They are a consequence of lithium. Be a good listener! Do visit your child in the hospital if that’s allowed, but know that during these visits, you won’t get a real view of what the ward is like. The staff make sure of that! Let him know you are there for him and will help out any way you are able.

Understand Lithium’s Effects

If your child has already experienced the consequences of lithium, be sure also to let hospital personnel know of your child’s medical condition. It is especially important that they understand if your child has or shows signs of diabetes insipidus. This is a rare condition, caused by lithium, that renders the kidneys unable to concentrate fluids. What results is extreme thirst, due to the body’s need to take in extra fluids. Many nurses and even doctors do not know why patients on lithium drink so much. Many even claim the thirst is psychological, or even an addiction.

Be sure that they have a thorough understanding that your child needs to drink extra water. This is vital because it’s not uncommon on the wards to put mental patients on water restriction. This practice is caused by sheer ignorance on the part of the staff and is all too often used as a disciplinary or punitive measure. Water restriction will cause your child to become dangerously dehydrated, especially if the hospital carries it out too long. Patients have died due to misunderstanding about diabetes insipidus. Your advocacy can much improve or even save your child’s life.

If your child already has kidney disease from lithium, know that it is not a death sentence. When I realized I had been lied to for decades, I found it difficult to trust any doctor at all. This has turned out to be a fear that keeps me alive. I do all-natural medicine and it is really working to improve my kidneys and keep me healthy. At 61, I can carry over 50lbs of groceries in a knapsack, can run four miles, and recovered from anemia even though I was told it would never happen. I am also working full-time. They should tell me more things I will never be capable of doing…I would be doing all of them!

Stand Your Ground

As parents, you have more knowledge of what makes your kid tick than any doctor could possibly have. As advocates who stand your ground, you are also setting a terrific example for your child. Showing your child your insistence on thinking logically and independently will inspire your child for decades to come. I know mine did. Thanks, Mom and Dad!

This blog is adapted from a chapter of Julie’s upcoming book, Life After Lithium.

You can read Part 1 of this essay here.

 

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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55 COMMENTS

  1. Julie, I am sorry that you have been taken advantage of and abused by our medial system. We survivors need to be aware that there is a huge industry who will try to now steer us into Psychotherapy, Recovery, Live Coaching, and Salvation Seeking. All this does is further attack our chances of getting justice and a fair chance at live.

    We need to organize and punish perpetrators, seize reparations money, and protect the would be next generation of victims. If we can do these things, we will restore our social and civil standing. But the hurdles in front of us, from the Health and Well Being industry, are huge. None of us can do it alone. The first loss when we are attacked is our ability to organize.

    I know that you already understand this, I am just trying to get the word out.

    Thank you for sharing your story.

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      • “the entire mental health system has to be considered as a lethal attack.” I agree, I’m working on a new painting. I’m thinking I’ll call it “The Great Escape from the Unmentioned War Within – The ‘Mental Health’ Industries’ War Against Its Clients and Our Children.”

        It is compositionally inspired by a Chagall painting named “War.” I swear that man painted the story of my life and dreams. But he was a Jewish artist who survived the Nazi psychiatrists’ holocaust of the Jews, and I’m an American artist who survived today’s American psychiatric holocaust, so we have a lot in common.

        https://www.naturalnews.com/049860_psych_drugs_medical_holocaust_Big_Pharma.html

        It’s a shame the psychiatrists keep repeating the worst of history, over and over and over again. They likely never learn because they’re never arrested for their crimes. Someone should probably arrest these defaming, torturing, child rape cover upping, and mass murdering “mental health” workers.

        Thanks for sharing your story, Julie. I’m glad you survived and escaped, God bless for sharing your wisdom. I agree, lithium is a neurotoxin. Best of luck with your book.

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        • It was my paternal grandmother that turned me onto Chagall. My grandmother was subject to sterilization…this, I am convinced now, was part of the eugenics movement. She was afraid to talk about it, did not dare to say aloud in front of us kids, but I did, eventually, hear it. She had one child and then they cut off her ability to have more. This affected her for her whole life, and totally explains her protective attitude toward me (which, by the way, the shrinks claimed was pathological!). I was her only granddaughter, which ultimately meant I was the daughter she never was allowed to have.

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    • Labeled schizo-affective in the state hospital, I was put on Lithium. Possibly twice. Nasty stuff. I was also put on Synthroid for the hypothyroidism I developed due to the Lithium I was taking. Imagine that, double bad. The dosage for mood-disorders is almost at the toxic level, and so it’s not something you really want to do. I’ve known people who have had their kidney’s shutdown on the drug, and one person who had to have a Kidney transplant because of Lithium. Life is precious. Do the math, and you can figure it out for yourself. Lithium has to be one of the reasons the mortality rate for people said to be suffering from serious psych disorder labels is so high. Lithium is a drug I would not recommend people take.

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  2. Think it is very unfortunate Kay Redfield Jamison wrote her books extolling the
    Virtues of lithium. Think it sucked many people into thinking they “needed” this toxin and that it was a miracle treatment. Moncrieff’s writings expose the flaws in the research and literature regarding this drug. Points out people who take lithium become more likely to have more episodes and “relapses” than if they’d never taken the poison.

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    • Yes, it is sad that Jamison recommended that people poison their kidneys. Ever wonder why we “mental patients” had pimples? Lithium caused this. The first signs of the kidney destruction will appear in the skin. Your skin, which is an amazing organ, will try to do to work of the kidneys, getting rid of toxins that now, the kidneys can’t filter out.

      At this point of my life, since my kidneys are barely functioning, I allow my skin to do this work. In the northern hemisphere we are approaching summer. Instead of using an air conditioner, I recommend allowing yourself to sweat, which will help to remove these toxins. Foregoing the AC is an inexpensive way to give yourself a sauna. You are saving on your electric bill and also saving your life.

      Survivors of lithium will need to reduce protein, sodium, and phosphorus, but not potassium as usually recommended for those with kidney harm. Also, since lithium causes diabetes insipidus, you should not try to limit water. You will need to drink as much as thirst demands, to avoid dehydration, and also you will need to actively work on keeping up your potassium levels. This can be done by eating potassium-rich foods or, if these are not available, taking a small amount of potassium supplement (I break those commercially-available potassium pills in half). If your potassium has dropped you can tell because you get hiccups and/or very painful muscle contractions (cramping). I don’t know why magnesium will help balance out electrolytes. I’m still researching this.

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      • I would hear Jamison speak in Louisville and wondered how and why of her position. Considering she was the child of military and moved around a great deal, perhaps being in a chain of command family, I can see where the race to run with the other scholars of the academy forces production, production, production. Unfortunately, as we are learning, the house of cards was not built so much to honor the maxim, “do no harm” but rather became a way to process intake.

        How do you know the range of the supplements to be taking? And then, the circadian rhythm in the course of the year?

        Thanks much!

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    • I think having read Kay Redfield-Jamison made it easier for me to accept the script when the p-doc gave me lithium.

      I protested – indicating that I had “bipolar depression” not mania, and apparently the lithium is better for the mania, but she wouldn’t hear it, insisting it was good for depression too. (my GP back home in America said, “OMG but it’s got such a narrow therapeutic window!” as in – the diff between “therapeutic” and “toxic” is extremely close.)

      Egads, I became such a cotton-wool-wrapped zombie that all I could think about was ways to end my misery. And adding “antidepressants” didn’t help, either. Thank you Robert Whitaker, Joanna Moncrieff, Peter Breggin, Will Hall, and Surviving Antidepressants for showing me the truth – and that there was a way out, and that I could live life again.

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  3. Does anyone here know the history of lithium “treatment”? Testimonials of the terrible effects of lithium are great, but if people actually read books, they could discover how absurd it was to “treat” human beings with lithium in the first place. Psychiatry goes to great lengths to obfuscate or suppress its own sordid history. Think about it for a minute. How on earth did anyone think that lithium was something that a human being should ingest? Now, go research the story. If you can still tell me with a straight face that lithium “treatment” was a good idea, then I have a bridge to sell you.

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    • I did a research paper in college on this. It was accidentally “discovered” when experimenters engaged in unrelated research (the name “Schou” rings a bell) noticed the effect lithium was having on guinea pigs. One thing led to another till they saw that lithium had a sedating effect on psych “patients” as well without making them slobber and drool and do the Thorazine shuffle. So people looked much less scary in front of their relatives, despite being emotionally neutered and subject to goiters. Lithium became an instant hit.

      How’s that in a nutshell DS?

      Btw there is no “natural lithium level” that lithium “adjusts”; lithium is a highly toxic trace element in any human body (as is arsenic).

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      • Oldhead gets credit for doing his homework, and guinea pigs figure prominently in the story.

        An A+ paper on the topic would have included a description of the work of John Frederick Joseph Cade. (See: https://en.wikipedia.org/wiki/John_Cade)

        “Since he had no sophisticated analytical equipment these experiments mostly consisted of injecting urine from mentally ill patients into the abdomen of guinea pigs.”

        Say what? Yes. You read that correctly.

        To quote wikipedia again:

        “Cade found that in the guinea pigs injected with lithium carbonate solution, as a control solution, the guinea pigs were more restful. His use of careful controls in his experiments revealed that the lithium ion had a calming effect by itself, but even this finding may have been caused by the toxic effects of an excessive dose of Lithium.”

        LOL! This guy was nuts. Completely wacko. No wonder the entire psychiatric industry still relies on his lithium “experiments” and subjugates human “guinea pigs.”

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          • I remember decades ago when we were all on lithium, a guy told me lithium had given him “diabetes.” I asked him why he thought he had diabetes and he said he knew because he was always thirsty. Sad to say, I was sure he was mistaken. He really meant diabetes insipidus, which has no relation to the other diabetes, although with the other diabetes, thirst can be a sign. The guy also told me about the urine experimentation. I was sure he was nuts! It took me decades before I found out it was indeed true. I also remember being in a “group” where this one guy frequently had to rush out. Again, I figured it was his “mental illness.” This was certainly not why. He was rushing out because he had diarrhea. He also had the shakes really badly and the beginnings of TD.

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  4. Thanks again Julie for getting the word out. I believe that we all need to organize and fight back. Survivors have to make it clear that we won’t stand for Psychotherapy or Recovery, rather we insist on punishment for perpetrators and reparations for survivors.

    I feel that what we are dealing with is what Foucault called BioPower, or BioPolitics. It is basically when people have been so subjugated that they won’t do anything seriously wrong, so that the government is able to regulate them by forcing them to keep on living. Psychiatry, Psychotherapy, Recovery, Salvation Religion, all either partially or totally run by the government now. All used to keep survivors passive, and making up a huge underclass.

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  5. Thanks Julie,

    You’re writing is excellent, and you’re doing a great service.

    I was on lithium myself and had my first suicide attempt when I came off it, but I never went back on it. And I’m happy I didn’t.

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  6. Julie, you are one of few here who deservedly boasts about terminating and refusing all Psychotherapy.

    As I see it, the function of Psychotherapy and Recovery is to destroy the public reputations of the discontented. Any disagreement, he or she must need therapy, or recovery.

    Now sure, we will feel pain and stress, because our social and civil standing have been compromised. We are being placed at risk, our survival is being threatened. So the distress we feel is an evolutionary response.

    And no amount of Psychotherapy or Recovery will ever do anything to help us reclaim our social and civil standing. Quite the contrary, the existence of such institutions only propagates the idea that the discontented are defective. And then as long was we affiliate with such, our natural desires to strike back, to punish perpetrators, to seize reparations, and to protect the next generation of would be victims, get made into evidence of pathology.

    We survivors will have social and civil standing if we organize and fight back. But to do this we have to totally reject Therapy and Recovery.

    So again Julie, not sure how much you agree with my views, but I do commend you, justified bragging about rejecting Psychotherapy.

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  7. Thanks, Julie, for sharing this powerful warning. When people are in desperate situations, they will follow what the so-called experts tell them, especially if a child is having an emotional crisis. I appreciate you sharing your story and good luck to you in everything.

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  8. It was an interesting part of your memoir to read, thanks Julie.
    They used to be aware and talk about Lithium Toxicity but I haven’t heard folks use this phrase.
    I experienced it – confusion, loose bowels, and instead of being medically treated was placed in seclusion and then transferred to the highly monitored back unit where aides were paid to chart our movements.
    It wasn’t until I obtained my records that I saw Lithium Toxity written over another diagnosis and the plan was for nursing home placement. An aide mentioned it to me.
    This hospital was part of the multinational alaphabet soup corporation that has taken over many of the orginislly small psychiatric institutions. Most of my professional colleagues left after they saw what was happening.
    You should write a Manuel for folks and for their families.
    The whole pediatric bipolar stuff in my mind is or borders on child abuse or neglect. I never thought I would ever have to say that. It just doesn’t make any sense except for profit.
    And again- where are the professional vpiices here?
    We still are in echo chamber land.

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    • It IS child abuse to fabricate a diagnosis. We need to think about this because when it comes to the psychiatrization (hmm) of children, this could be a vehicle for nailing social workers and behavior specialists who force children into diagnoses. It would also constitute child abuse for a parent to bring a child to a psychiatrist with the intent of having the child drugged for either their convenience or to collect disability payments for the child.

      As far as adults are concerned, I am not sure where false diagnosis comes into play. I would suspect it falls under malpractice, but it would be much harder to pursue legally.

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    • Good point OH. Psychiatrists don’t diagnose. They impose labels. A diagnosis implies that there is some real illness or disease to identify. That’s not what psychiatrists do. So called “mental illnesses” are not discovered. They are invented. The entire DSM V and every other edition of the DSM is a work of fiction. It is a very dangerous and harmful fiction, but still fiction.

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    • I agree, Oldhead. I state this many times throughout the book, reminding people that there’s no validity to these diagnonsenses. As a writer, though, I have to gently bring the reader to the point of realizing it themselves. As we say, “Show, don’t tell.” It is more powerful that way.

      For instance, in various parts of the book I explain that one psychiatrist on a ward diagnosed every single patient with “bipolar.” We were baffled by this. Some had just left other wards where they were given other diagnoses. Another psychiatrist labeled all female patients with “anger problems.” We knew because we compared notes. We joked about it, too.

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    • Hi, Julie’s editor here. I’m always cognitive of the importance of semantics, and I think the word “misdiagnosis” was appropriate in this case.

      In the story, she shares that she had an eating disorder that went unrecognized. Instead, she got diagnoses including bipolar and schizoaffective. That’s definitely a misdiagnosis!

      That is to say, there actually was a problem she had wanted help in addressing (self-destructive relationship with/behavior regarding food and eating). But no one in the mental health system would see that.

      Julie, what do you think?

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      • Miranda:

        How does one distinguish the difference in the semantics of spoken words and then written words of different languages? For in the struggle to articulate what a thought is trying to convey, while in a different realm of thinking, the capacity to be aware, self aware to engage with a psychiatrist or a panel of psychiatrists is problematic. To understand further, the beauty of thought, thinking, as in the Artistry, that we can convey and be with, there seems to exist a need to edit out an expression that rests from the individual who is trying to speak/communicate an idea? Would you say even that framing a problem is also problematic, if the underlying issue(s) might be masked?

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  9. My advice to always refuse to talk to any Psychotherapy and Psychaitry types. Don’t act like you are afraid of them, threaten that you will exercise the power of Citizen’s Arrest.

    What is all about after all is the accusation that you have failed to comply with the Self-Reliance Ethic.

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  10. Amazing! I would be placed on Lithium in 1976, shortly out of college. And would later be visiting in New Bedford, Mass where I acquired a book, Breaking the Chains: The Crusade of Dorothea Lynde Dix by Penny Coleman. I attempted to work off the Lithium while in grad school in the 80’s which I had not yet heard of David Oaks. In traveling via train to Waterloo, the time between trains afforded me enough space to see the Chagall windows in Chicago Art Institute Museum. The gestalt therapist who would work with me while at Waterloo realized that part of my healing would occur from touch, massage. And what better place to experience said gift, than within Hot Springs. Air conditioning along with perhaps trying to work faster in the South, where one could fry an egg on a car seat, really is counter productive to making decisions that understand energy, that is the light, a visual type of thinking that seemingly is sublime in the creative expressions. I would learn if the therapist or psychiatrist are quick to want to medicate, then I would have to start the search process all over.

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