Lithium Toxicity and an Almost-Human Hospital

Eric Coates
27
1573

As I tell people all the time, I’m psychotic all day long, every single day, whether I’m on medication or not. (It takes too long to explain the difference between being psychotic and being schizophrenic, so I just keep it simple and say “psychotic” most of the time.) The simple fact that you happen to be able to act normal and the fact that you’re being forced to take medications that don’t really do anything to change what’s going on in your head doesn’t mean that you aren’t, in your own way, fully capable of keeping your shit somewhat together and at the same time still be what other people would consider to be completely nuts. If you actually saw what was going on — or, more to the point, could actually hear what was going on — in my head most of the time, then you’d realize how honest about all of that I’m being. I am not being “medicated successfully.” In fact, medications are sort of pointless for me at this point, if not downright harmful, not only because they might be slowing my process down but because they’re physically dangerous.

As just one sort of example of all this, there’s lithium. When they first started forcing me to take lithium during my last long admission, I was as annoyed and pissed off by that fact, as one almost always is when being forced to take any medication, regardless of what it is. After all, I had wanted to go through my own experience and my own process in my own way, in the way that I knew worked and that I believed in, and to be set back once again (possibly) by a drug was exactly what I didn’t want. I still believed that, basically, you have to go through being crazy for as long as it takes and just have faith that you’ll get to the other side at some point. Of course I could see that medications sometimes had a short-term benefit. There were some very psychotic and potentially dangerous people that I saw come out of psychosis with the help of medications, but that doesn’t mean that they wouldn’t have been better off if they simply had the right environment to go through the experience all the way and come out as new and possibly more interesting and happier people at some point. I myself have experienced the calming effect of lithium, which kicks in very quickly after you take it for a while (once it has built up in your system) and I have even liked it. But, as I already knew, lithium is a notoriously toxic substance, and if it isn’t managed carefully enough, can have some very nasty effects.

I discovered the effects of lithium the hard way myself, and I probably didn’t go through anything half as bad as what some people must go through. Some people end up dead.

One day I started having some physical problems, but at that point I had no idea what was causing them. Bear in mind, I was getting my blood tested every week — my psychiatrist required it — for my lithium levels, but it seems that the lithium toxicity came on too fast to catch it. And believe me, it wasn’t fun. As one website describes lithium toxicity:

The signs of lithium toxicity are easy to identify but fatal to ignore. In fact, too much lithium can lead to coma, brain damage or death.

Signs of lithium overdose or poisoning are:

1. Persistent diarrhea.

2. Vomiting or severe nausea.

3. Coarse trembling of hands or legs.

4. Frequent muscle twitching such as pronounced jerking of arms or legs.

5. Blurred vision.

6. Marked dizziness.

7. Difficulty walking.

8. Slurred speech.

9. Irregular heart beat.

10. Swelling of the feet or lower legs.

I had all of these but the last three. But just reading the list doesn’t really give you an idea of what it’s like.

First, the diarrhea started. Not a real big deal, but noticeable, and most definitely an inconvenience if you want to walk anywhere, like I do all the time — but not so terrible that I couldn’t live my life. But then the dizziness and the weakness started, and so did the trembling. Suddenly, I could barely get up and walk around, and when I went to sit down again I’d simply lose control and sort of spin and flop down like a fish on the dock. At the same time, my hands started to not just shake but, as this list says, there was “coarse trembling of hands or legs” and “frequent muscle twitching such as pronounced jerking of arms or legs,” although to get a really accurate picture of what it was like, you have to think of that fish on the dock again. I’d start to raise my hand, and suddenly it would start flapping back and forth like the flipper of a whale, sometimes going back and forth a few times a second over a range of six inches or a foot or so in distance, and the higher I raised my hand, the more pronounced it would become. It got to the point where I could barely eat or drink anything, and when I did try to drink something I had to use both hands to keep it stable enough to get the drink to my mouth. Then the gagging and vomiting started.

When it got to the point where I was too weak to stand up for any real length of time, I called my mother and asked her to take me to the hospital — the same hospital where I’ve been confined a couple times and where they post a guard every time I come in because of the threats I made when I was stuck there for three weeks and I got sick of the abusive treatment of the night staff. I was forced to sit down outside my apartment while I waited for her to come pick me up, because I was both too weak to stand and I would have reeled around if I’d tried to.

The first time I went to the hospital for this problem, they diagnosed me with something else entirely and basically ignored most of what I was saying. This led to a short hospital stay, during which time things stabilized (I think they had cut down on my lithium) and then I went home again and the symptoms re-emerged a couple days later, and just as badly. This time the doctor, a man for whom I ended up having great liking and respect, homed right in on lithium toxicity. I think that drugs themselves and the potential toxicity of different drugs was one of his special interests, because he enlightened me about what lithium could do to you in mere moments and, once we were talking, mentioned how he learned about them in a toxicity class he’d taken as part of getting his degree. He diagnosed me without hesitation.

The good side of all this is that he immediately solved my problem. The bad side of it was that he contacted my psychiatrist, at first just to consult with her, at which point she immediately “revoked” my so-called “conditional discharge” from the state hospital, which meant that I was going back whether I really “needed” it or not. She decided that — contrary to my testimony that I was taking my lithium exactly as prescribed — that I must be drinking so much alcohol that I wasn’t aware enough to take my lithium the way I was required to (that I was taking too much, which is sort of an odd contradiction when the simple fact is that I don’t want to be on any drugs at all), because she had decided that it would take the state hospital (and what might turn out, for all I knew, to be another months-long stay there) to straighten me out.

Thanks, lithium citrate.

The only good thing about it all was that it turned out I was going to be on ISU.

I’d been to ISU once before — about a month before — though for what reason, exactly, I forget. I believe that I missed a couple appointments in the space of a week or so, simply by forgetting I had to be there, and they decided to drop the hammer on me. That it seemed pointless at the time is all I really remember about it.

The adult, “acute care” units — Units C, D, and G — at New Hampshire Hospital are entirely different from a much newer unit, opened in the last year, that is called ISU, which stands for the “Inpatient Stabilization Unit.” The whole idea of ISU is to get people who might be having a short-term problem — something like a medication adjustment that their psychiatrist thinks they need — or who might “need” to be assessed but who then might not turn out to be having any problem at all in the estimation of the staff once they’d been assessed, and to get these short-term cases off the longer-term (and difficult to escape) units so that people who didn’t “need” a longer stay would be able to get out of the system more quickly. They would be happier about it, and they also wouldn’t clog up the system. Which, as far as I’m concerned, is just about the best idea — maybe the only good idea — to come out of our state’s “mental health” system that I’ve heard in a long time.

The unit, first of all, is laid out completely differently from the other units. Instead of the unit being organized as a group of hallways with all the rooms located off them, and where the sheer monotony and inhuman quality of the environment always has a few people pacing up and down the hallways for hours at a time, ISU is basically just one big room with everything — the nurses’ station, TV area, the eating and group meeting area with its row of tables — more or less all in one place. The bedrooms, the nurses’ station and office, the medication room, and the kitchen are all right off this one big central room. Second, it is run entirely differently from the other units, and I mean entirely differently. The first thing they ever did the first time they brought me in, which was at 8 o’clock at night, was take me into the kitchen — actually into the kitchen? whaaat? — and brew a fresh pot of coffee so I could have a cup. Getting a cup of coffee at 8 — even decaf — on the other units would never have happened. And instead of the kitchen being just a closet — it’s literally a converted closet on the other units, with barely enough space inside to turn around — there is not only space to move around but a fridge and some cabinets and a table, all of them stocked with different kinds of snack foods. What you want to ask yourself, after being used to conventional psych wards, is: What the hell is this place, anyway? This isn’t New Hampshire Hospital. This is something else entirely.

Then there’s the staff. Instead of most of them seeming harassed or stressed out or just plain too busy, running around all the time or being distracted by another “patient” whenever you need them, they are cheerful and and relaxed and upbeat and friendly. They all seem to genuinely like what they’re doing. It’s not that I haven’t met some great and even some very happy “mental health workers” on other units, because I have. Plenty of them. But on this unit, everyone seems to be happy. For the most part, the “patients” don’t seem frustrated; they don’t have to stand around the nurses’ station, waiting 10 minutes at a time for someone to finally give them that piece of nicotine gum. They mill around, watch TV, do whatever — without seeming completely pissed off all the time (there are exceptions, of course: there always are), or always bitching about the nurse or their psychiatrist, or screaming in the middle of the day area and getting a code called on them. There aren’t a bunch of people restlessly pacing, or rushing to get to the kitchen door if they happen to spot a “mental health worker” going into it. It’s just one big, communal space that’s laid out more like an open-concept house than your usual hospital-style psych unit where everything is put together for the efficiency of the space rather than for the humanity of the environment. If you need a snack, you got to go into the kitchen and grab what you wanted, instead of waiting as an exasperated “mental health” worker had to put on gloves and struggle as patiently as they could to spread peanut butter with a bendy plastic spoon on some bread for the tenth time that day. If you needed a bathroom, there was one between every two bedrooms — between them and connecting them, not off the hallway that happens to be between them — which means that people might have a sense of ownership and respect the space and not spread their garbage all over the place. If you want a little quiet and solitude, every bedroom is a single, so you don’t have a roommate throwing their stuff all over the room and hogging the bed next to the window and snoring all night. And instead of having 28 different “patients,” all demanding the attention of a staff that can’t keep up with them, there are only 10, and the staff can handle them easily.

The place is almost human.

In fact, it was the kind of place that I’d basically been looking for a couple years earlier. Aside from the fact that it was actually part of a hospital, it was more or less like a small group home or facility, and it’s run by staff who seem to really like what they’re doing and who are directed by a psychiatrist who not only doesn’t seem annoyed or burned out by her job, but who seems to enjoy her work, to do it as conscientiously and considerately as possible, and to sincerely like people.

So I was going to ISU again. That much, at least, was a relief.

You have to be transported there, of course. How they do it in New Hampshire, circa The Year of Our Lord 2017, is for a couple of sheriff’s deputies to come in, shackle you — chains between the ankles, handcuffs attached to a belt around your waist — and they put you in the back of their car. This particular pair — they’d transported me before — like to drive like a bat out of hell the whole way, which always scares the living shit out of me because I’m not only in terror of their driving but of what would happen if something simply went wrong with the car.

Anyway, we got there, and the lovely doctor — she really is a lovely person, and easily the best psychiatrist I’ve known, and I’ve known quite a few, to my regret — got me right off the lithium, which my own psychiatrist (not chosen by me, but imposed on me by the “conditional discharge” system) apparently wanted to keep me on. All I can say is thank God for ISU and its staff.

Which brings us back to lithium toxicity. The simple fact is that lithium never made a dent — not for a single moment — in what was going on in my head. Did it make me a little more relaxed, purely on a physical plane? It did. But it did nothing at all to change what’s going through my mind or what I might have been doing with my time. I am, to put it quite plainly, a true schizophrenic, and that means I’m schizophrenic all the time. It doesn’t change. It’s all day, every day — no exceptions. I will put my “crazy” up against your “crazy” any time, no matter who you might be, and I’m pretty sure I’ll win. I hear voices that talk about God, the aliens, and about secret government programs all day long and sometimes even all night long, and I believe in practically all of it. Its sheer logical consistency has me convinced. Drugs, for me, are completely pointless. They don’t even make a dent in what I believe or in what goes through my head.

Which brings me to my penultimate point, which is that I would appreciate very much if everyone with a psych degree or a medical degree would simply get the hell out of my life until actually invited into it, keep their moralistic behavioral agendas to themselves (which is where they belong), and to please let me go through what I have to go through without their interference. I haven’t committed a crime, and I am sick of being treated like a criminal simply because I happen to believe differently than you do. Please, please, please go away. To those of you who do actually heed my words and then go away: thank you very much. You seem like nice people. And the next time I need to be poisoned, whether it’s with lithium or some other toxic substance, I think I can take care of it myself. It will be done more efficiently, and at least I will know what’s happening. That might finally cut down on all my “distress,” which you seem to be so worried about and yet, contrary to how much you like to talk about it, I don’t actually feel.

Again, thanks very much. Now please get the hell out of my life.

27 COMMENTS

  1. Thanks for sharing your story. Yes, horrific but more narratives like yours need to be told. Otherwise, psychiatry will continue to abuse and ignore our voices, voices that are the most important to treatment, the system, and care in general. People deserve better, you deserve better. I have been hospitalized repeatedly and, no, its no vacation. Trapped and helpless, trying, and trying, to make sense to get to the outside. I am glad they figured out the toxicity in your blood, something that should have been noticed, identified, much sooner than having to go through what you did. You are a true survivor. Stay well.

  2. “Yet lithium never made a dent — not for a single moment — in what was going on in my head. ”

    Why would you want some kind of a drug to alter what was going on inside of your head?

    Why for that matter would anyone want a psychotherapist to alter what was going on inside of your head?

    I think that is the original problem, what keeps the mental health and psychotherapy system going.

    • “Why for that matter would anyone want a psychotherapist to alter what was going on inside of your head?”

      When one has ‘brain zaps,’ which were caused by antidepressant discontinuation syndrome. But one had been lied to by a PCP, and didn’t even know they’d been put on a mind altering antidepressant, since it’d fraudulently been called a “safe…med.” One would logically think maybe a psychotherapist or psychiatrist would have an answer.

      But, unfortunately, our “mental health professionals” know nothing about the adverse effects of the psych drugs the doctors are prescribing, so they are worthless and “irrelevant to reality,” and about as anti-“professional” as people can get.

      The psychologists and psychiatrists didn’t even know ‘brain zaps’ were a common symptom of antidepressant discontinuation syndrome until 2005, as pointed out by this hubris filled article.

      https://www.researchgate.net/publication/247806326_'Brain_shivers'_From_chat_room_to_clinic

      • Someone Else, what I would say is that psychotherapy and psychoanalysis have always been cons. They depend upon the same sorts of circumstances which would make one susceptible to psychiatry and drugging.

        They are not actual alternatives because they are not redress for wrongs. They don’t restore the civil and social standing of the survivor. Rather, they are just new ways invented of abusing the survivor.

        And you know as well as I how Freud betrayed his original patients, the 14 female hysterics.

        If he were to have gone the other way, he would have had to have become a lawyer, instead of a psychoanalyst.

        It is exactly the same with all of the American varieties of psychotherapy, no redress, just turning it back onto the survivor.

        If you want to say it sometimes does some good, well yes, eventually the survivor realizes that psychotherapy is pointless.

        CA Gov. Gavin Newsom, Attorney General Xavier Becerra announce legal action on immigration
        https://www.youtube.com/watch?v=J3volw6DXXw

    • Well if you’re having homicidal or suicidal fantasies, urges, an inner or auditory voice urging you on, hopefully you’d be open to a medicine to banish such ideas and impulses.

      Our commenter shares that he’s a schizophrenic, so I’m surprised he was on lithium anyway. Maybe he had been misdiagnosed.

      If you’re a true Type 1 Bipolar and you have repeatedly wrecked your life during mania with psychotic features, you decide to try lithium therapy, you actually ask for it. And for a lot of us it is the single most effective medicine at preventing manic episodes and reducing the rate of suicide. Yes, it has some nasty side effects, a narrow therapeutic index, the potential to damage the organs and with acute toxicity unchecked, kill. But make no mistake, mania running wild is more dangerous. THe last time I had to be hospitalized it was at gunpoint. I emerged to discovered I had given away over 10,000 to various people, mostly complete strangers. An earlier manic episode had already cost me a career that spanned well over a decade. One manic episode ended my relationship and led to me spending thousands of dollars just to win back the right to see my son.

      So, my hands shake and I take beta blockers and even those don’t work all the time. Still going to take lithium. And I’ve lost hair and gained weight, still going to take lithium. And I had to start taking another medicine to control polyuria and diabetes insipidus, but lithium is still worth it so far. Cause being completely out of my mind was interesting once upon a time, but now it’s just harming my family. While I wouldn’t mind getting wrongfully shot by some terrified cop in our city, I want to see my son grow up. A settlement wouldn’t do as much for him as a stable father will.

      For a long time I had the anti-psychiatry mindset and had read the best people from that school of thought, Szasz’s The Untamed Tongue for example. Thing is, those psychiatry critics are almost never actually profoundly mentally ill. So sure, psychiatry sucks in lots of ways, but at this moment it’s better than nothing most days.

      • Been there, done that, got the T-shirt (but maybe not at gunpoint!).

        I have learned that if I am having impulses, urges, and dangerous inner voices – that there is something underneath them. That they are valuable companions in this journey called life – and if they ramp up, it is because I have been ignoring them, shoving them down (and this repression makes me more dangerous). Only I can control my moods – the lithium only dampened them down so that I was unlikely to even know what they are – much less how they could help me (instead of harming myself and others).

        It is not a lithium deficiency.

        You feel very strongly the need to be controlled by the lithium. When the time comes, and they send you for dialysis, and you can no longer take the lithium, what will you do then?

        In this society, we are called to often behave in non-human fashions, in the name of conformity. It may be that some of us need the Soma to survive the society we have built. It’s my desire that we can all be free of this mental and emotional control, free to be the humans we were born to be. I do recognise that it may not be practical for so many (like my own loved ones, who are also controlled by drugs & psychiatry) to be free of these shackles.

        So I’m not picking on you – but just sharing that I believe there is another way besides destroying your organs with the lithium. My beliefs may or may not apply to you.

      • Hello, I am the author of Life After Lithium, which is not yet published. I want to share with you that if you take lithium you will experience renal failure. You are likely to die of it, or die of something related such as cardiac failure or stroke. Kidney disease leads to diabetes and you might die of that.

        Your doctor should tell you about the wonderful lives people have on dialysis. You’ll be married to a machine three days a week, six hours a day. Do you want your life ruined by that? You’ll be forced to stop working, and go on disability. I’ve got more news. Most people die during the first year of dialysis.

        If you have already started lithium, your creatinine, which is a blood level, has already risen to an alarming level. Don’t expect your doctor to properly inform you about this, either. You will notice symptoms in a decade. You aren’t likely to live past your 50s.

        Your choice.

  3. My condolences Eric.

    Judging from your narrative alone you sound normal in that you’re reasonably angry at being treated in a shameful fashion like a criminal when you have done nothing wrong. The only thing they were punishing you for was being put in harm’s way by your shrink.

    So they handcuffed you and locked you up for the crime of BEING POISONED by your alleged doctor.

    Psychiatry is insanity.

    Drugs never helped me either. Voices like yours deserve to be heard. You’re not alone.

  4. Eric, thanks for this. I had that issue as well as was misdiagnosed at a private for profit psychiatric hospital. As a professional I had known folks of my profesdion not only unhappy but leaving it. I was not consulted but told.
    I ended up in solitary and the discharge plan was for nursing home placement according to an aide. It never happened but very scary to say the least. Got the papers and the plan was for nursing home placement but in red stamped was Lithium Toxicity. Never told.
    I am sorry for what has happened. Lithium Toxicity knowledge has been around since the 1950’s when Lithium was introduced. There was no need for what we and others were put through.I hope for better days for you and all.

  5. “Now please get the hell out of my life.” My sentiment to the “omni-potent moral busy body” “mental health” poisoners, attempted thieves, and pathological liars too. Good God, they’re so intrusive. Learn to live and let live instead. Thanks for sharing your story, Eric.

    • They (the specialists) are talking about mental health fundamentalism all the time.People in hospitals (monotheistic prisons for polytheistic psyche) are those beyond naive mental health assumptions (Desecrates mind+ theology).
      What about them? Why they do not have a right to their own identity?
      Where are people who understand the great meaning, or language, of psychosis, depression ? Where are those who were suppossed to support human pathology? Because we have enough of Desecrates rationalism and christian theology in the place of PSYCHOlogy. They are anti psychological terrorists. Monotheism is the the greatest enemy of the psyche, because monotheistic psychiatry is a theological hatred against psyche.
      Psychiatry sees only sins and shame in psychological reality.

      Mental illness exists only for limited monotheistic mind. For polytheistic mind, pathology does not exists, because for polytheistic mind psyche is not a problem to solve.

  6. Please continue to have your kidneys tested, that is, creatinine level for one thing, and keep track of your electrolytes, especially if you have any more leg swelling. Don’t expect the doctors to tell you the truth. They won’t! They’ll blame anything BUT their drugs.

    I also took lithium exactly as prescribed for 12 years. I was taken off of it in 1996. In 2011 I started having renal symptoms and the doctors did not admit the lithium had caused it and never informed me I had kidney disease. Looking back, by 40 I was likely in State 2 CKD and certainly in Stage 3 well before I turned 50. I never knew until I was 55 and in renal failure. Even after they revived me they never admitted it. I had to find out myself.

    You CAN treat CKD with natural medicine. In fact, I would recommend anyone who has ever been on lithium to maintain a low sodium diet for starters, which will slow down the progression of any damage you have.

  7. Well said Eric. We’re talking human rights here. Why is it that the worst serial killer has more rights than people who think differently? The elderly are another group whose rights are routinely trampled. In any case, this is why I personally have had to escape my profession–psychiatric nursing–because what we do is morally indefensible. Many nurses in the system are moulded to operate robotically as cogs in the machinery of the psychiatric-pharmaceutical industrial complex but suffer from moral conflict about it (once they see what is actually going on). But not enough stand up and say something about it; too afraid of losing their jobs and registration. Not that anyone in power would listen anyway. There are too many vested interests and there has been too long a history of entrenched oppression. A tradition of not-so-benevolent dictatorship by self righteous and deluded do-gooders. The self-delusion of many “helpers” that they are doing good is their shield against the horror of reality. For psychiatry to admit how much damage it has done and continues to do is unthinkable. Such clear eyed self-reflection mighty bring the whole house of cards down. However it is good to read about a humanely run ward, even within the system.

    • Wow, really powerful comment, and succinct in its clarity.

      “There are too many vested interests and there has been too long a history of entrenched oppression. A tradition of not-so-benevolent dictatorship by self righteous and deluded do-gooders. The self-delusion of many “helpers” that they are doing good is their shield against the horror of reality.”

      I’ve used the phrase “delusional do-gooders” myself. This is absolute truth, the whole story in three easy-to-read sentences. Thank you, please write more.

    • Esmeralda, thanks for speaking out. As Alex stated this is a powerful comment! Thanks for posting this truth-telling comment and I also hope you write more!

      As you say not enough in the system are willing to stand up and say something about the harm being done and the ones dictating or perpetrating the harm are “self-righteous” and/or deluding themselves to protect themselves and their interests.

  8. You were lucky. They never look at the drugs as the cause of the symptoms.

    Your persistent contact with the Other Worlds might mean that shamanic training will be of value to you.

    I don’t mean to downplay your torment – just want to mention, that they might be valuable, if heeded and harnessed for the good of all.

  9. Quote: “I am, to put it quite plainly, a true schizophrenic, and that means I’m schizophrenic all the time. It doesn’t change. It’s all day, every day — no exceptions. I will put my “crazy” up against your “crazy” any time, no matter who you might be, and I’m pretty sure I’ll win. I hear voices that talk about God, the aliens, and about secret government programs all day long and sometimes even all night long, and I believe in practically all of it. Its sheer logical consistency has me convinced.”

    Eric. I know this was more of an aside, but I just can’t seem to get away from your statement here. It breaks my heart to hear you say this, even though you put ‘crazy’ in quotes. I never saw my wife that way even though she could easily match you in every way.

    I hope someday our culture radically changes it perspective on hearing voices. I’m very sorry for how you have been treated because of our cultural and scientific ignorance.
    Sam

  10. Thank you for sharing the story Eric,
    terrifying as usual, to hear about the psychiatric ordeal.

    May I ask you more about your voices? As you, I took it in my own hands (I don’t hear them all the time, but I definitely see another reality), and decided that it’s all consistent and makes more sense than the age of reasoning. I like ‘my voices’, it is an integral part of who I am.
    I am curious, but it’s a very personal question.

  11. Dear Eric
    Sorry to hear your experience with lithium but glad you got in and out of hospital relatively ok
    I think of all the contributers to this site I look forward and enjoy your pieces the most as they are completely honest and pure no agenda no ranting just your life as it is and we are lucky to have your willingness to share. you always impact my perspective-thankyou

  12. Thank you for this conversation. You’re not alone in your pleas for less intrusion, less control, less moralization, less secrecy and less abuse. Well written and well said. It is an abusive system to patients. I think we can oppose, object and fight back. A conversation is a good place to start. Thanks.