Posted by: Jane | January 8, 2011

Refusing Psychiatric Meds

I am going to share with you all a story about how I refused psychiatric meds and engaged in willful noncompliance and how I got away with it. I am going to tell you what meds I was on and how I went off them without anyone’s permission but my own. I am going to teach you by example how to wage successful noncompliance.

At the age of fourteen I was coerced to take lithium carbonate and perphenazine under duress. I was told that if I did not take the drugs willingly, that I would be restrained and injected every time. Since I had just been restrained mere days earlier, the freshness and intensity of that trauma was overpowering. I was reliving the incident as I was being threatened with more of the same. It was one more assault that I had had to endure over the course of my young life back then.

Even though I wanted to fight with everything I had, I could not bear to struggle and lose against such insurmountable force. Six adults versus one teen patient, over and over again. I took their meds because it was preferable to them dehumanizing me and treating me like an animal and getting the ‘treatment’ anyway, as I was tied down to a bed. My taking it under duress was less of a blow to my ego, but it was a blow nonetheless. Every fiber in my being screamed, “Noooo!” when I stopped resisting and submitted in front of the nurses station.

By the next day I was out of it. It was just Psychotropic City. I became an undead. Not fully alive but not fully deceased either. Zombiefied on Trilafon, a drug known to induce a chemical lobotomy. I was not allowed to be ‘me’ for six months after that. Dry mouth. Shaky hands. Drooling. Twitching. They didn’t tell me even half the side effects, I guess because they didn’t want to scare me.

I had been diagnosed with manic depression, nowadays called bipolar disorder 1. They told me that lithium and antipsychotics were medicines for people with ‘chemical imbalances’ and that I had to take the drugs for the rest of my life. That I had no choice.

The drugs destroyed me. I lost ten or so IQ points right off the top. I looked like I had Parkinson’s. A few photos of me back then taken when my Dad visited me, show my eyes look glassy and half-lidded. As though I was literally half-asleep, standing up. I blew up like a lab rat in an experiment, gaining over seventy pounds. Kids started making fun of me at school, a time when, if any of you remember your teens, appearances are everything.

For me to be getting insulted and ridiculed for being fat actually woke me up a little. It was surreal. When I was growing up people used to ask my folks if they fed us because I was so scrawny back then. But all it took was six months of high doses of lithium and Trilafon and I became a blimp. Sweatpants and sweaters were the only outfit that fit comfortably. I was disgusted with myself. I hated myself and my life and the lack of control over my body’s metabolism as well as the lack of control over my own life.

I got desperate enough that I nearly killed myself while I was living in lockdown. I tried to hang myself in a closet, but I aborted the attempt at the last second because I did not want to die in that place on those drugs like this, with my body and mind ruined. The next day I pretended to take the meds during morning med time like a good compliant little patient but I secretly palmed them. Then I eloped. That is, I ran away.

The first step in succeeding with something like that is trust. That means you have to take the meds for awhile under supervision until they have become accustomed to the predictability of your compliance and they no longer watch you carefully. When you have that trust and you have a physical rapport with whomever is giving you the meds, you can deceive them. They won’t be on the lookout for it. Take deep breaths, remain calm, don’t give anything away with body language. That is how I did it.

I slowly got my wits back as the clamps of the neuroleptic and the fog of lithium eased off. By chance, I happened to see and went over to read a very important piece of legalese called, ‘The Patient’s Bill of Rights’. The Patient’s Bill of Rights states that beyond a certain age (fourteen, fifteen, or sixteen, depending on the state you live in), you are entitled to informed consent and the right to refuse medical treatment. So let’s take a moment to examine what that really means.

What is informed consent? Informed consent means you have every right to know everything about your medical treatment and the condition(s) you’ve been diagnosed with. Psych meds absolutely count as medical treatment. Informed consent means you have to be told by your doctor or psychiatrist the full range of potential side effects and the short and long-term risks of drug treatment.

For example, one of the effects of antipsychotics is Tardive Dyskenisa, which is permanent CNS damage. When you take antipsychotics, you are playing Russian Roulette. Every month that goes by that you are on antipsychotics like Risperdal, Geodon, Abilify, Haldol or Seroquel, you depress the trigger with the barrel of the gun against your temple and the cylinder turns.

This was something I was not told about when I was started on Trilafon and I consider it absolutely to be a relevant piece of information about the drug I was on that you can bet would have effected my choice to accept treatment—had I been allowed to accept or reject it in the first place. Antipsychotics had their origins as insecticides and dye compounds. Which is something else I would have wanted to know before starting treatment. To have informed consent about taking antipsychotics is to know that this class of drugs causes brain volume reduction over time.

Another example. Lithium makes your blood toxic. The constant flow of lithium-poisoned blood through delicate filtering nephrons can slowly lead to kidney poisoning and acute renal failure. The longer you are on lithium, the more likely that future looms on you. Was I told about this by my Pdoc? No way. I was told lithium might give me “a little dry mouth and some minor weight gain, nothing to get alarmed about.” Lies. It was like having a sand dune for a mouth. No stoner has ever experienced cotton mouth like anyone who was ever on 1500mg lithium daily. Not even close. I gained plenty of weight and although at first, I tried to ignore it, as I got bigger it got harder to deny that it was happening. Once I started getting picked on at school for it, I worried about it a lot.

Needless to say, had I been informed about the full range of potential short-term effects and long-term ramifications, you better believe I would have refused meds. At the age of fourteen, I had no choice. At the age of fifteen, I did have a choice. And I exercised that choice. I said, “No more!” to taking meds and I got away with it. The reason I got away with it is because (in principle) you can not be forcibly treated if you are not a clear danger to yourself or others.

Sooner or later, someone is probably going to figure out that you stopped taking meds. They are going to take this seriously so you had better as well. With that said, here is some roleplay to try out.

Concerned Parent: “Why did you stop taking your meds?”

You: “Because I don’t like how they make me feel and I don’t want to take them anymore.”

Concerned Parent: “You have no choice.”

You: “Actually, you are wrong. I am Xteen-years old and I have the legal right to refuse medical treatment and I am refusing to take meds.”

Concerned Parent: “You are sick. You have to take meds.”

You: “Wrong again. I feel fine. I have not had a manic or depressive episode in X weeks or months. I am not sick. And because I am not sick, there is no reason to be taking medications. So I refuse.”

Concerned Parent: “You are in Big Trouble!”

You: “So? What are going to do? Hit me? Assault me with harsh language? Try to force me? You can’t. It’s unlawful. You do not have the right.”

Concerned Parent: “We are grounding you until you comply!”

You: “So what?”

Concerned Parent: “We are taking your internet access and cellphone!”

You: “Ow. Sorry, I am NOT taking drugs for problems I don’t have.”

Concerned Parent: “You will be grounded forever!”

You: “Wrong. I will walk out of this house when I turn eighteen and you will not and can not stop me.”

Concerned Parent: “Why must you do this? Can’t you see you’re hurting us and yourself? Why can’t you just comply? It’s for your own good. It’s medicine. It’s good for you, to help you deal with your imbalances.”

You: “Look, I’ll never learn to control my emotions as long as drugs are doing it for me. My mind is made up. I refuse psychiatric medications. I will not take them.”

The key thing to remember in making informed consent and right to refuse work for you is being able to pass a mental health assessment. They did not hesitate to deceive you through omission of important information, the full reality of meds. Nor did they tell you the truth about suffering from the symptoms of bipolar.

The truth is, some people can learn to handle their mood swings without psych meds. I am one of them. I was told I couldn’t do it. But they told me wrong. Either they lied, or they didn’t know, either way, they were wrong. So don’t feel too bad when I tell you that sometimes part of passing a mental health assessment is deceit and lying through omission. If you want to make it into adult age without iatrogenesis (psych med induced damage) then you are going to have to lie. Big Pharma lies. Your parents lie. Your Pdoc lies. You will lie because that is one of the ways to level the playing field.

Let’s take a minute to talk about the physical effects of going off drugs. The first thing I noticed was how good and alive I felt as the shackles of psych meds slipped off my mind! I started to feel my old self again!

What I am going tell you next, I learned only after the fact, and not before. By refusing meds abruptly, I discontinued in what is commonly called, ‘cold turkey withdrawal’. I went off meds cold turkey and I had zero negative effects. No bad reactions at all. None whatsoever.

Not everyone who discontinues abruptly has only good effects and no negative effects. But I was only told this when it was fait accompli or, after the deed was done and it was too late to go back and do it ‘by the book’. I was not told there was a by-the-book method of withdrawing. In fact, at the time, there was no such thing. Since the early 90s, much has been learned about the process of the brain coming off psych meds. Since then, some books have been written about how to do it in as safe a way as possible.

Why should there even be a book on how to come off meds safely? Well it turns out that there is some risks involved with abrupt discontinuation. The longer a person is on psych meds, the more artificial changes are made to their brain. The brain grows new receptors to deal with neurotransmitter receptor antagonizing, which is an effect that neuroleptics have on it.

Sometimes, for some people, sudden withdrawal causes neurotransmitter rebound psychosis. Which is basically your brain going a little haywire to have it’s neurotransmitter uptake no longer mangled and the effect of the bonus receptors your brain grew in an attempt to regain it’s normal homeostasis. Your brain is kind of overdosing on a neurotransmitter that it was underdosing on. But it is only temporary.

One way to avoid potential side effects of withdrawal is to follow what is called a ‘taper regimen’. In a nutshell, tapering is just what it sounds. A gradual, incremental lowering of the drug by dosage over a drawn out period of time.

Reasons why you should or should not consider tapering include:

  • The length of time you were on meds.
  • The number of different psych meds you are on.
  • The strength of the dosages.
  • Your age and weight.

The first three, duration, dosage and quantity are related to how addicted your brain might (notice I said ‘might’) be to the drugs. Generally it seems, at least from what I’ve read, the longer you are on meds, and the higher the doses, and the greater the number of drugs in your cocktail, all have a direct bearing on how thoroughly your brain has been rewired due to the drugs.

The last item, age and weight, is mostly anecdotal. People in their middle age with major obesity seem to have a much harder time rebounding uneventfully from abrupt discontinuation. In fact for them, tapering may not only be the best way to come down, but also the safest and least likely to cause problems. Plus you have an additional complication with significant weight gain in that many if not most psych meds are fat soluble, in order to pass the blood-brain barrier, to deliver their ‘medicinal’ effects. Unfortunately this means that trace amounts of the drugs have a tendency to get stored in your body as well.

Speaking strictly for myself and my own individual case, while I was severely overweight for what was normal and ideal at that age and for my body type. I was not obese. I was chubby and flabby, but not so overweight that I had mobility issues or couldn’t still wipe my ass from behind. I had been on high doses of psych meds to be sure, but only for six months. I would not have tapered if you had scared me with every cold turkey horror story in the book.

This is how I see tapering. Imagine a nasty, slimy, rusty, jagged piece of metal stuck inside you. Image not only the physical pain, but also the mental anguish. The disgust with the dirty sliver that is violating your bodily integrity. It’s in you. You want it out of you. Now. Right now. Not a week from now. Not a month from now. Not two years from now. Right frakking now. No debate. Just pull it out and get it gone, the sooner the better.

That’s how I felt about getting off psych meds and that’s how I did it. I just stopped and yanked the sliver out. I did not have to live in disgust as the drug continued to poison my body and mind month after month as I tapered down. But I did not know that tapering was the ‘proper’ way to go about it anyway.

Some people who write about mental health issues like to say, “Don’t go off meds without doctor supervision.” But what happens when your doctor is not on your team? They don’t give any answers or advice for that. It’s like they just assume everything is hunky dory and ideal and you and your doctor are working together for your health care. But not everyone has that ideal.

I am not joking around here. This is serious. I did not get to pick my treatment team. They were picked for me, including my psychiatrist. The whole point of guerrilla noncompliance is not informing people what you are doing. So sometimes, in order to save yourself, you have to take full responsibility for your health care, including whether or not to discontinue treatment and how to go about it, as well as who to inform, if anyone.

The truth is, you won’t know if you can handle cold turkey detox from psychiatric medications until and unless you try. It’s your body and your life. You may not have to taper. In that case that means no longer suffering the ignominy of paying for or taking daily, a drug you have decided you no longer want any part of. That is the beauty of cold-turkey. Your brain will rebalance itself quickly without having a tapering dosage still causing you pain and grief day after day. Just know that if cold turkey does not work, you may need to taper.

You don’t score good patient points with anyone for drawing out withdrawal. But it is something you should give thought to if you have been under the onslaught of psych meds for some years. However, cold turkey does in fact work, and my experience is proof of it. From what I’ve read, I was at the extreme edge of the ‘safe’ zone. Just six months on the drugs. Beyond that the risk of withdrawal effects certainly go up, but are still not 100 percent guaranteed.

So I hope this article has helped you learn how better to assert yourself if you are receiving drug treatment against your will or under coercion. It also helps if you remember this bit of advice: You will come out looking a lot better if you remain calm and polite while discussing your noncompliance. Chances are your folks or caregivers are the ones who are going to flip out when (if) they find out you went off meds and why. Be classier. Keep it together. Show them that you are more in control of yourself than they are of themselves. It’s that or press the trigger against your head again next month, and hope for the best.

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Responses

  1. The story as I know it, many kids believe they are ill, and want to take “medication”.
    The child or teen has had strong emotions ( they are still children, do babies cry outloud?), and then been tricked into believed they have a disease. Their emotions are an illness. Short attention span is a medical illness.
    They want to be a “good” child for their parent(s) who feed, cloth and buy them stuff, so want to take the drugs that make them “good” robots.
    All of a sudden mankind has developed brain chemical imbalances?

    • There may be something to that now, but I don’t remember anyone wanting to be medicated when I was growing up. It’s the media that tells everyone that meds are for treating chemical imbalances and psych meds were not advertised on TV when I was growing up.


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