Editor’s Note: Over the next several months, Mad in America is publishing a serialized version of Peter Gøtzsche’s book, Mental Health Survival Kit and Withdrawal from Psychiatric Drugs. In this blog, he gives advice on what withdrawal symptoms may look like and explains the dangers of—and alternatives to—forced treatment. Each Monday, a new section of the book is published, and all chapters are archived here.
List of withdrawal symptoms you may experience
This list isn’t complete, and cannot be complete, as there are so many different withdrawal symptoms, but we have assembled the most typical ones. Some people feel withdrawal symptoms very clearly, others hardly notice them. They can be worse than anything you have ever experienced before; they can be completely new symptoms; they can be similar to the condition for which you were treated, which will make most doctors conclude you are still ill and need the drug, even if this is rarely the case; they can be symptoms that will make psychiatrists give you additional diagnoses; and they can be the same for widely different drugs, e.g. mania.
When withdrawing, you and your relatives may be surprised that thoughts, feelings and actions may change. This is normal but can be unpleasant. You may not realise if you have become emotionally unstable; in fact, it is quite common patients don’t notice this.
Below are the most important symptoms you may experience. A few of them can be dangerous, see the warnings in the package insert for the drug you are tapering off. If you haven’t spared it, you can find it on the Internet (for instance, by searching for “duloxetine fda” or “duloxetine package insert”).
Flu-like symptoms: Joint and muscle pain, fever, cold sweats, running nose, sore eyes.
Headache: Headache, migraine, electric shock sensations/ head zaps.
Balance: Dizziness, imbalance, unsteady walking, “hangover” or a feeling of motion sickness.
Joints and muscles: Stiffness, numbness or burning feeling, cramps, twitches, tremor, uncontrollable mouth movements.
Senses: Tingling in the skin, pain, low pain threshold, restless legs, difficulty sitting still, blurred vision, light and sound hypersensitivity, tension around the eyes, ringing in the ears, tinnitus, slurred speech, taste and smell changes, salivation.
Stomach, gut, and appetite: Nausea, vomiting, diarrhoea, abdominal pain, bloating, increased or decreased appetite.
Mood: Mood swings, depression, crying, sense of inadequacy, lack of self-confidence, euphoria or mania.
Anxiety: Anxiety attacks, panic, agitation, chest pain, shallow breathing, sweating, palpitations.
Perception of reality: Feeling of alienation and unreality, being inside a cheese-dish cover, visual and auditory hallucinations, delusions, psychosis.
Irritability and aggression: Irritability, aggression, angry outbursts, impulsiveness, suicidal thoughts, self-harm, thoughts about harming others.
Memory and confusion: Confusion, poor concentration, loss of memory.
Sleep: Difficulty falling asleep, insomnia, waking up early, intense dreams, nightmares that are sometimes violent.
Energy: Low energy, restlessness, hyperactivity.
This is just to remind you about what the withdrawal symptoms are likely to be, thereby telling you that what you experience is totally normal. You should therefore not worry, ruminate, or panic about these symptoms, but accept them, unless they are dangerous and increase the risk of suicide and violence, in which case a temporary dose increase might be needed.
We do not recommend that you track your withdrawal symptoms every day, as it would imply an inner focus and constant checking of yourself. You should try to focus on the outside world, telling yourself that this is where you want to be, instead of being drugged away from it.
There are other problems with daily recordings. You have no reference point when you start. Some patients will rate the withdrawal symptoms from the first couple of dose reductions as maximum severity because it is the first time, they experience anything so horrible. Later, if the symptoms get even worse, there is no severity category for that.
It helps some people to write about their thoughts, considerations and feelings in a diary. What matters is that you feel safe with what you do. You should therefore avoid people and situations that can stress you and avoid taking on tasks that are not strictly necessary.
After withdrawal, you may lack energy for a while and may not feel like yourself. This is normal. Do something you like doing, be good to yourself, and be proud about what you have accomplished. You might need psychotherapy to help you get to the root of what it is or was that trapped you on psychiatric drugs.
Keep an eye on your mood. It can take a long time before you are fully stabilised in your new life without drugs. You might need to learn relaxation techniques, if you feel tense.
Dividing tablets and capsules
Unfortunately, our drug regulators have allowed drug companies to bring drugs on the market without having to investigate if problems may occur when patients stop using them and to develop solutions if this is the case.21
Academic psychiatry is also at fault. It has devoted a lot of attention to the short-term efficacy of new drugs and for starting treatment, but virtually none to stopping treatment. It was not psychiatry but the patients who drew attention to the far-too-limited number of strengths of the drugs. Clinical practice was adapted to what pharmaceutical companies sold and not to what the patients needed.
The patients were right to criticise why the companies did not provide the strengths they so clearly needed, and why medical associations and guideline committees did not ask the drug companies to do this. We don’t all use the same shoe size or strength in our glasses, and dogs get dosed according to their weight in contrast to humans.
In this vacuum, we need to be creative. Pharmacists Rüdinger and Toft have prepared some tips about how to take less than the minimum dosage provided by the manufacturers.35
Warning: The box and the package insert will always describe your type of medicine. If it is enteric coated tablets or capsules, they are manufactured in such a way that the active substance does not come into contact with the gastric acid. Therefore, they must not under any circumstances be split or divided because the gastric acid will then destroy the active ingredient.
You can always consult your pharmacy about whether your drug can be split into smaller units. Here are a few main rules:
Most tablets are regular tablets, and the active ingredient is evenly distributed throughout the tablet. If a groove runs across the surface of the tablet, it is easy to split it. This will allow you to get half tablets. Tablets can also be split into four and eight parts, which is often necessary towards the end of the withdrawal period.
Tablets can be cut with a sharp knife, but you can also buy a tablet splitter or a tablet guillotine at the pharmacy.
If you happen to split the tablets into uneven sizes, you can order them according to size, starting with the largest and ending with the smallest bits.
Some tablets are designed to remain in the body for a long time, and they are often manufactured in a way that allows the active ingredient to be distributed throughout the body gradually. These tablets have an addition to their name, for example depot, prolonged-release, and retard. Basically, they cannot be split.
If the sustained-release tablet has a groove, you may break the tablet along it, but do not split the tablet further.
Many drugs are available both as sustained-release and non-sustained-release tablets, and if you need to split a sustained-release tablet, consult your doctor to switch to regular tablets.
Capsules are made of gelatine with the purpose of assembling the powder. They can be opened, and the powder can be dissolved in water. The water will be unclear, but ready to drink. It is possible to prepare the water solution in a plastic syringe with milliliter (ml) divisions, and from this solution you can draw the correct amount according to the dose needed.
Use a 10 ml syringe, add powder to the syringe, and draw water up to the 10 ml line. Turn the syringe upside down or shake it a few times to dissolve the powder. One ml corresponds to 10%, two ml to 20%, etc. Pour the required contents into a glass and drink it.
Sustained-release capsules contain large particles or mini-tablets intended to be released slowly in the body over a long period of time. In most cases, these capsules can be broken, and the beads can be counted. Part of the content can be sprinkled on yogurt or dissolved in water with a syringe as mentioned above.
Replacing the drug to enable withdrawal
In some cases, withdrawal is not possible with the prescribed drug because the tablet cannot be split, or the capsule content cannot be reduced. You may therefore need to replace your drug with another one with similar effect, available in lower strengths. You will need to consult your doctor. Some drugs come also in liquid form, which makes it a lot easier to titrate the correct dose.
Forced treatment, a horrible violation of human rights
We must not forget the patients who, even though they desperately want to come off their neuroleptics, are forced to take them, in the worst cases as depot injections to ensure they don’t “cheat” by spitting out the tablets when the staff is gone.
I have argued at length6 why this horrible violation of human rights must stop. The psychiatrists claim that they cannot practice without coercion, but this isn’t true. Examples from several countries have shown that coercion is not needed. According to Italy’s Mental Health Law, the danger criterion is not a legal justification for forced treatment; it is a case for the police, just as in Iceland, where no chains, belts, or other physical constraints have been used since 1932.6
Physical restraint is an enormous assault on patients who have experienced sexual abuse, which many patients have, some even while they were locked up.
At Akershus University Hospital in Norway, they don’t have a regime for rapid tranquillisation and have never needed one.6 At a psychosis ward in London, they waited on average about two weeks before starting neuroleptic medication on newly admitted people.6 In the end, most patients chose to take some medication, often in very small doses, so it is very well possible that it was respect, time, and shelter that helped them, not the “sub-treatment-threshold doses.” Germany has also shown how it can be done.38
With good management and training of staff in de-escalation techniques, it is possible to practice psychiatry without coercion.39,40
There must be 24-hour support facilities without any compulsion, so that the hospital is no longer the only place you can go to when you are in acute crisis.38 For example, there could be refuges with the possibility of accommodation and where the money follows the patient and not the treatment. We also need social services for people who are on their way back into society after having been in contact with psychiatry.
Psychiatry seems to be the only area in society where the law is systematically being violated all over the world—even Supreme Court and Ombudsman decisions are being ignored.6,41 We studied 30 consecutive cases from the Psychiatric Appeals Board in Denmark and found that the law had been violated in every single case.41,42
All 30 patients were forced to take neuroleptics they didn’t want, even though less dangerous alternatives could be used, e.g. benzodiazepines.43 The psychiatrists had no respect for the patients’ views and experiences. In all 21 cases where there was information about the effect of previous drugs, the psychiatrists stated that neuroleptics had had a good effect whereas none of the patients shared this view.42
The harms of prior medication played no role either in the psychiatrist’s decision making, not even when they were serious (e.g. we suspected or found akathisia or tardive dyskinesia in seven patients, and five patients expressed fear of dying because of the forced treatment). An expert confirmed our suspicion that a patient had developed akathisia on aripiprazole, but on the same page, the expert—a high-ranking member of the board of the Danish Psychiatric Association—recommended forced treatment with this drug even though it was stopped because of the akathisia.42
The power imbalance was extreme. We had reservations about the psychiatrists’ diagnoses of delusions in nine cases. There is an element of catch-22 when a psychiatrist decides on a diagnosis and the patient disagrees. According to the psychiatrist, the disagreement shows that the patient has a lack of insight into the disease, which is a proof of mental illness. The abuse involved psychiatrists using diagnoses or derogatory terms for things they didn’t like or didn’t understand; the patients felt misunderstood and overlooked; their legal protection was a sham; and the harm done was immense.42
The patients or their disease were blamed for virtually everything untoward that happened. The psychiatrists didn’t seem to have any interest in trauma, neither previous ones nor those caused by themselves. Withdrawal reactions were not taken seriously—we didn’t even see this, or a similar term, being used, although many patients suffered from them.
It is a very serious transgression of the law and of professional ethics when psychiatrists exaggerate the patients’ symptoms and trivialize the harms of the drugs to maintain coercion, but this often happens, and the patient files can be very misleading or outright wrong, too.6,31,42,44 In this way, the psychiatrists can be said to operate a kangaroo court, where they are both investigators and judges and lie in court about the evidence, after which they sentence the patients to a treatment that is deadly for some of them and very harmful for everyone.
When the patients complain about this unfair treatment, which isn’t allowed in any other sector of society, it is the same judges (or their friends that won’t disagree with them) whose evidence and judgments provide the basis for the verdicts at the two appeal boards, first the Psychiatric Patients’ Complaints Board, and next, the Psychiatric Appeals Board. It doesn’t matter the slightest bit what the patients say. As they have been declared insane, no one finds it necessary to listen to them. This is a system so abominable that it looks surreal, but this is the reality, all over the world.
When anyone proposes to abolish coercion, psychiatrists often mention rare cases, such as severe mania where the patients may be busily spending their entire wealth. But this can be handled without forced hospitalization and treatment. For example, an emergency clause could be introduced that removes the patients’ financial decision-making rights at short notice.
Furthermore, a few difficult cases cannot justify that massive harm is inflicted on the patients,6 which also makes it difficult to recruit good people to psychiatry. No one likes coercion, and it destroys the patient’s trust in the staff, which is so important for healing and for the working environment in the department.
In many countries, a person considered insane can be committed to a psychiatric ward involuntarily if the prospect of cure or substantial and significant improvement of the condition would be significantly impaired otherwise. No drugs can accomplish that.
The other lawful reason for forcing drugs on people is if they present an obvious and substantial danger to themselves or others. This is also an invalid argument. Psychiatric drugs cause violence6 and they cannot protect against violence unless the patients are drugged to such an extent that they have become zombies.
Treatment with neuroleptics kills very many patients, including young people (see Chapter 2), and many more become permanently brain-damaged.1,6,36,45 There are videos of children and adults with akathisia and tardive dyskinesia that show how horrible these brain damages can be.46 It took psychiatry 20 years to recognize tardive dyskinesia as a iatrogenic illness,45 even though it is one of the worst harms of neuroleptics and affects about 4-5% of the patients per year,47 which means that most patients in long-term treatment will develop it.
In 1984, Poul Leber from the FDA extrapolated the data and indicated that, over a lifetime, all patients might develop tardive dyskinesia.45 Three years later, the president of the American Psychiatric Association said at an Oprah Winfrey show that tardive dyskinesia was not a serious or frequent problem.48
Coercion should be abolished. This is our duty, according to the United Nations Convention on the Rights of Persons with Disabilities, which virtually all countries have ratified.6 The Psychiatry Act is not necessary, as the Emergency Guardian Act provides the opportunity to intervene when it is imperative, and the science shows that it is not rational or evidence-based to argue that forced treatment is in the best interests of patients.6,41,42,49
If you are not convinced, you should read “The Zyprexa Papers” by lawyer Jim Gottstein. It is a book about illegal, forced drugging that destroyed patients. Psychiatrists, lawyers, and Eli Lilly lied shamelessly, and judges didn’t care. Gottstein needed to go to the Supreme Court in Alaska before he got any justice and he ran a great personal risk by exposing documents that were supposed to be secret.50
To read the footnotes for this chapter and others, click here.
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.