Sunday, July 6, 2014

“This is a very bad idea, Peter… seriously!”

Several things motivated me to experience the effects of antipsychotic medication. Clearly my professional life has introduced me to many people who take them regularly, and I have seen their effects in members of my close family. And, of course, I also write about mental health issues, and that means touching on the issue of medication. I don’t think anecdotes are valid alternatives to systematic data collection, but I do think personal experience can be helpful – at least for me - in balancing and contextualising the available literature.

There are two rather interesting videos available online (here and here) that show examples of so-called extrapyramidal side-effects of anti-psychotic drugs (dystonia, parkinsonism, akathisia and tardive dyskinesia). I have to confess that they slightly frightened me (especially the first video at 6 minutes in), but they brought home the unenviable choices some people have to make… and especially the idea that the adverse effects of the drugs can sometimes be as bad as the problems they are intended to treat.

Immediately after I posted my intention to take chlorpromazine on social media, there was a flurry of comments from friends and followers.

Some merely referred to the idea as a ‘stunt’, with a variety of slightly off-the-wall analogies. But aside from the usual trivialities of social media, I saw three themes in the comments I’ve received over the past 36 hours.

First, some professionals (psychologists and psychiatrists), people who themselves use services and others sent rather nice messages praising my decision and suggesting that mental health professionals may well benefit from personal experience of the medication prescribed for their clients.

“… well done, brave, all prescribers should experience SEs…”
“… I wish prescribers would do what you're doing as part of their training.
“… have always considered that those who routinely prescribe psychiatric
drugs should first try them…”

The second theme was not explicitly critical, but suggested this was a seriously unwise move. This is an interesting set of comments… it implies that these are dangerous drugs… very dangerous drugs.

“…ill-advised, dangerous, please reconsider…”
            “…brave move... Look forward to the update…”

I happen to believe they are… but they are also taken by hundreds of thousands of people daily. If the medication is so dangerous that it’s unwise to take them, does that have an implication for the very many people who are prescribed them… ?

And this leads on to the third theme of comments; something I’ve heard many times before. That is, if (on the one hand) a person isn’t suffering from a particular illness, the drugs will lead to nasty adverse effects but (implicitly on the other hand) the drugs would be much less unpleasant if someone is ill.

“…drugs can have different effects if u don't have the illness they r
intended for. Eg morphine unpleasant if no pain…”
“…crikey - I'm sorry, I don't know you at all, but please reconsider, it's a
really bad idea to take tablets if not prescribed…”

This speaks to the idea that the drugs ‘normalise’ or ‘correct’ chemical ‘imbalances’. And, therefore (the argument goes) it’s both unwise for me to take them – my dopamine levels are (it’s argued) normal, so the drugs will depress them dangerously.  It’s also (the argument continues)  irrelevant, because my dopamine levels will be depressed to an abnormal state, whereas someone who’s “ill” and who therefore has abnormally high dopamine levels will merely have their dopamine depressed to a normal level… which will be relatively benign for them (I know of one psychiatrist who believed that “the madness soaks up the drugs”). The argument is, then, that my experience tells us nothing about ‘real patients’.

My view is… this medication is contentious, but also extremely common. Very frequently, people have no choice about taking it. Sometimes this is because of pressure from mental health staff who see their role as persuading people to take these drugs.  In many cases people are compelled to take them by force of law. The Mental Health Act allows medication by force if necessary, as thousands of people experience every year. I frequently write about mental health services, and where possible, I think it’s good to have personal experience of things about which you comment.

My understanding is that there’s precious little evidence to support the ‘chemical imbalance’ model – so I don’t accept the idea these drugs will ‘normalise’ the imbalances of “ill” people, but dangerously depress my neurochemistry. Instead, I think the drugs will have the effects that drugs have… and I, like everybody else, will experience them. I guess, on Monday, I’ll find out.


  1. I wish you all the best.
    I was first given chlorpromazine daily in hospital 'voluntarily' as a teenager, thinking it was an antidepressant. I wasn't psychotic and still don't understand their choice of meds. The effects were horrendous, though hard to separate from other things. For example, while on this drug I had a course of ECT, was given Mogadon in addition (many patients were on more than one drug) and endured the frightening hospital environment and bullying by staff. Like many patients, I experienced drowsiness, depression, disorientation, cognitive impairment, tremors, and was then given an additional drug to lessen the extrapyramidial 'side effects' of the neuroleptic meds that were still being prescribed. Five years later and desperate to come off these drugs, I had to battle with the withdrawal effects (which I don't think you'll have if only very short-term use).
    What I'm trying to say is that although experiences will differ depending on context, dosage, how long, individual reactions and so on, I think it will still give you some idea of how these drugs can make people feel. I respect your decision to attempt this, and I hope you will emerge safely with a greater insight into the effects of antipsychotic

  2. How will you avoid over-inflating the side effects you experience because you are consciously looking out for them and almost create them in your mind (hope that makes sense, I know what I mean!)

  3. Was left one pill - aka largactil - following emergency home-visit (no recorded history of clinical depression). Eventually took it reluctantly - needed sleep! - as knew something of it from working in prison (as teacher in late 70s) where it was (still is?) referred to as the 'liquid cosh'. The effect I remember most: the slowing down of my heart which I tried unsuccessfully, of course, to fight. I was horrified at losing control of my own body. Don't recall any further side-effects, not even whether I fell asleep!

  4. I applaud your brave decision to do this Peter. Somehow, I hope you (like many other people) experience horrible "side-effects" (so-called - more like effects). I hope this is then publicised widely, with a view to increasing public awareness, advocating choice, people's right to choose their treatments, rather than being forced to take dangerous toxic chemicals, often against their will, for their supposed "benefit".

    I hope you recover from the effects and do not suffer any lasting damage!

    I wonder whether you will experience any psychotic symptoms. I have long held a theory that the drugs might actually induce/exacerbate the problems they are purported to treat - with a view to increasing drug company profits. Call this conspiracy if you like, but let's see...

  5. As a former patient and pill-taker, I was really happy to read about your experiment. Are you able to work? I hope so! During my three years on olanzapine and lithium, I often felt that if someone from the professionals knew what it feels like to be on these drugs, the communication between doctor and patient could be much better and more could be achieved all round. Being a writer I spent quite some time to find the right words for the strange ways the mind, body, and one's whole life, are altered in unpredictable ways by the influence of these psychiatric drugs. I have collected them here in this book which you might find interesting thank you, all the best!

  6. Wishing you all the best with this Peter. Do you still work or have you retired? Will be v. interested to read of your experiences.

    I was on psychiatric drugs for many years and experienced many bad effects. I became obese and now have diabetes, felt sedated, tired and unable to work, also developed twitching and movement disorders. The doctors don't tell you about any of this and ignore your feelings and experiences. Please tell me how these effects are supposed to make you feel better!!!

    If you ask for a drug review, they change the subject, ignore you, keep you on the same drugs, keep increasing the dose or change to something else, without asking for your opinion about any of this. You can end up on piles of different drugs you don't even want to take, just getting sicker and sicker. Some psychiatrists seem to favour certain drugs over others (are they getting commission? am thinking of the Panorama programme Who Pays Your Doctor?). I say this because other patients seeing the same psychiatrists would be on the same drugs. I have observed this pattern over the years.

    Throughout all those years, I felt ignored and treated like a child with no choice and no voice.

    Glad I'm off them now, as I feel so much better!!!

    However, psychiatrists and doctors didn't help me come off, they all refused to help. Instead, I got support and help from other survivors of the system.

    Hoping your experiment could lead to some positive change. Thank you for doing it.

    With kind regards from Susan

  7. Thank you for doing this. I was on the drugs and have personal exp of extrapyramidal side-effects. These included muscle spasms, twitching, jerking and restriction of movement. Also felt very tired and had to rest a lot of the time. I can testify that these effects are unbearable, very difficult to live with & always advise people not to take the drugs because of this. The doctors don't seem to care though. They want to get people on them, often for life, and think they help.....
    When you go out you feel like a freak. People avoid you because you can't control yr body. They give you funny looks & fear & avoid you. It's like you've got a disease - the plague or leprosy - that they might catch & so they stay away, keep their distance. They don't even talk to you. It's embarrassing. My world got smaller and smaller until I didn't even want to go out, almost became a hermit. Like I said, the doctors don't care.....
    In the end, had to take myself off them, because the psychs weren't willing to help, they wanted me on them for life. I'd like to see how they would feel taking them, even for a short time.....
    It's good you're doing this Peter. I hope you recover from any effects you might get. I more or less have because I came off them in time. But I've seen some who have to live with the effects for life. Hope that doesn't happen to you Peter. But mostly those patients have been on them for years. Hope it goes well.
    Hope some good comes out of this gamble you are taking & that the damage people experience from these drugs will one day come to an end. Have to admire yr courage and thank you for caring Peter.

  8. Applaud you for doing this Peter.
    Those of us who work in the system, if we are honest (and not brainwashed by the system) know that the drugs often do more harm than good, because we see the effects of them on the people we work with every day.
    Unfortunately the public are brainwashed by drug company agendas and propaganda, which centre around selling their products, rather than improving people's health and well-being.
    Earlier this year there was a good article in the BMJ "Evidence Based Medicine is Broken". This highlighted the lack of science and the corruption of drug companies in influencing health policy and practice (available on the net). There is another good book by Peter C. Gøtzsche: Deadly Medicines and Organised Crime: How Big Pharma Has Corrupted Healthcare.
    The truth is that psychiatric drugs are often harmful in many ways. They do not target symptoms, the only positive (if one can call it that) effect being that they tend to sedate people.
    Do people really want to spend their lives in a state of zombiefied sedation, battling various movement disorders, while their risk of heart disease, diabetes and early death gradually increases. Many also become obese, suffer sexual dysfunction and various other problems. How can this be called quality of life?
    We should be speaking out about this, because it is a human rights issue - all the worse because people are forced into taking these harmful drugs, often against their will, by law. Medicine and law are supposed to serve the people not the corporations!
    Health care has become wealth creation, at the expense of the vulnerable - for the doctors and drug companies. Truly Profit before People!!!
    Wishing you all the best!

  9. I disagree with the comment above, stating "the truth is that psychiatric not target symptoms" or that "the only positive effect" is "that they tend to sedate people". While sedation is clearly a sig. problem for many people, this is statement ignores the sig. benefits many of us have experienced, thanks to psychotropics.

    I have a Ph.D. in clinical psych. and worked for years as a clinical psychologist (note: NOT a psychiatrist). I would have continued indefinitely, had an episode of Bipolar Disorder not bowled me over. For months I ignored my symptoms, batting them away, like flies. So I wanted to speak in French all the time (note: I do not speak French). So I needed to dance five hours a day (note: I do not dance). So I also needed to clap for hours at a time, or I felt like I would literally jump out of my skin. So I decorated the entire house in green at 3 am for St. Patrick's Day, and wrote the second section of a 300 pg book in 2 sleepless weeks (note: many revisions required).

    So what? I was a psychologist, I could use psych. techniques to "manage" such symptoms.

    It took being unable to read a simple email (or my children's storybooks, for that matter), as well as the concerns of my family, for me to seek the help I needed, and that included psychopharmacology.

    Did the first drugs worked wonders? Hell, no. For me, the side effects of Seroquel and Lithium (for me) outweighed any benefit. Did I then throw in the psychotropic towel? Hell, no. At this point, I had become terrified of trees (note: trees are actually not scary). I had four children to raise, I needed to become stable again. So I tried Lamictal, a drug that worked wonders until I developed myclonic jerks (note: not so good).

    So I bit the bullet and tried a med that frightened me--Zyprexa (with Wellbutrin and Clonazepam to round out the mix). That was months ago, and (gasp) I remain my skinny self, with my symptoms until much better control. Am I capable of working in a busy clinic? No. Am I capable of caring for my children and writing novels? Hell, yes.

    And so. And so I pop my pills, knowing that any treatment is imperfect, but also knowing that dancing all night, speaking in French, and dressing as a dinosaur for "fun" (I did that, too), is not the life I wish to lead. I am an introverted, shy person. My mind is most precious to me, and the drugs I'm on have given it back.

    So do I find your experiment brave or even illuminating? I suppose as brave and illuminating as living outside for a week to see what being homeless is like.

    Many will speak of how wonderful your experiment will be, how it will shed light on all the side effects that (do) occur. Please, please, remain cognizant that there are many of us out here who would be living a much different (worse) life without them. Be careful with your words. Thank you.

    1. Well said! It's not a simple picture. I think perhaps the problem for health care systems is that comprehensive care is expensive - that is, care that involves providing a person with a therapist to talk to in order to help them cope with day to day life, ensuring the person has a good diet and a safe home, and balancing those things with any medications that might be helpful or necessary. It is indeed much cheaper to just provide meds and leave the individual to sort out the rest.