Over the years I have received many stories from patients, so many that I could write an interesting book based on them. In November, I received an outstanding account from a patient whom I had met when I lectured. I reproduce here this patient’s journey as she presented it to me, shared at her request. She was seriously harmed by psychiatric drugs; her life became endangered; and she suffered an excruciating withdrawal phase because she did not receive the necessary guidance. But she is doing well today.
She gave birth to her second daughter in 2002 after a hard time with “all kinds of trials and hormone treatments.” After giving birth, she wasn’t well. She was afraid of losing her daughter and of not being able to protect her well enough. The doctors diagnosed her with depression, and she was told it was perfectly normal and that she should just take Effexor (known as an “antidepressant” but more accurately called a depression pill) so that her brain would work again. Possibly for the rest of her life, but at least for five years.
Her life changed markedly. She put on 50 kg (110 lbs) and had several weird episodes that she didn’t understand. Once she wanted to dig a sandbox for her children, but she ended up putting an entire trampoline 70 cm into the ground by removing seven cubic metres of soil with a shovel. Another time she knocked a wall down in the kitchen without warning and without being a craftsman in any way, because she felt the family needed a smart conversation kitchen. One day during a job clarification process, she told the job consultant that she would like to study to become a lawyer even though she is dyslexic and would never have been able to do this.
She saw a psychiatrist again, and 15 minutes later the case was clear — she had become bipolar. She was sent for psychoeducation and was told that her condition would definitely last for the rest of her life. She was trained in how to notice even the little things that confirmed that she was ill, and special care was taken to ensure that she took her medicine.
“They managed to put a massive fear” in her, she said, and she clearly identified herself with a sick person who had to tackle life in a certain way in order to survive.
Time passed and she ended up leaving her husband of 15 years. In 2013, she met her current husband, and he asked quite quickly “what the sickness was all about,” because he couldn’t see it. After a year and a half, she surrendered and agreed to make a small trial with a small withdrawal of the medication. He was happy with that because he had seen several times how disastrous it went when she forgot to take the medication. For example, she once ruined a trip to a summer amusement park because she had forgotten to bring the medicine with her. As the day went on, she got worse and worse with headaches and vomiting, and she was slightly confused and just wanted to lie down and sleep until she got the drugs again.
Her medication list included Effexor, later switched to Cymbalta (two depression pills), Lamotrigine and Lyrica (two anti-epilepsy drugs) and Seroquel (an antipsychotic). In addition, she was given medication for the adverse effects caused by the drugs and for her metabolism. This is a dangerous cocktail. Depression pills double the risk of suicide, not only in children but also in adults,1 2 3 4 antiepileptics also double the risk of suicide,5 and both depression pills and antiepileptics can make people manic,6 which happened to her, thus giving patients an erroneous diagnosis of having become bipolar.
The withdrawal process took two and a half years, with her husband helping as best he could to make the process as gentle as possible. They did not understand it at the time, but discovered along the way, what the receptor saturation curve means, namely that you need to reduce the dose less and less the longer you come down. There are not many doctors who know this,7 and the official recommendations, e.g. from the Danish National Board of Health,8 are outright dangerous because they say that you should reduce the dose by 50% every time you taper depression pills. Thus, already after two reductions, you are down to only 25% of the starting dose. This is far too quickly when you come down to the small doses, and her life became endangered.
She was scared to death that it would end wrongly and was often thinking about giving up and therefore introduced several pauses in the process. Thoughts of suicide were extremely pressing during the times when she tapered, because it was totally horrible. Inexplicably, she had accepted that she obviously hated life and wanted to put an end to it. She is otherwise an energetic girl who loves life and who has never had suicidal thoughts until she started taking drugs, nor after stopping them. But the withdrawal process was completely “crazy,” she said, and she often considered whether taking her own life would be more humane.
During withdrawal, she had some “wildly weird experiences.” On the good end, she took it upon herself several times just to listen to nature and the birds. It was a powerful experience, because she could not remember when she had last experienced this in the years she was “doped.” A little sadder were the other symptoms that came during the withdrawal. The abstinence symptoms included dives that could easily be interpreted as depression, and during withdrawal of Lyrica, she was anxious and felt that life was unbearable. One morning in the bath she began to cry, because just feeling the water on her body was not something she had noted for many years.
This was when she came to know two of my books on psychiatry and found out that everything she had experienced was well known and perfectly normal. It was really shocking to her to read about how it is normal practice to be exposed to the hell she had been through, but also liberating to discover that it is normal, that she probably wasn’t sick, and that there was nothing wrong with her.
By the end of the withdrawal, she had a strange experience where, for almost half a year, she was almost crooked in her body. She constantly had a feeling of tipping to the left and had a hard time walking straight. During several periods, other muscle groups failed. When she once played a game where a stick is thrown after some wooden blocks, her hand didn’t release the stick when she tried to throw.
After withdrawal, things started to get better and better, and she wanted to work again, even though she had been out of the job market for many years and was on disability pension. With great support from her husband, she planned to take a business driver’s license and drive a taxi, but “Oh no, oh no! There was a big no from the police.” They sent a letter stating that her driver’s license was time limited and that she would need to provide documentation every two years that she was not sick.
“The fact that they choose to throw an extra diagnosis after someone who is on depression pills is pretty terrible,” she told me. “Today, I must renew my driver’s license every two years for that reason. But you wouldn’t imagine how hard it was to avoid them taking it away completely. When I contacted psychiatry because of my contact with the police, they first refused to see me — because I was well. So, I couldn’t get their help to prove that I wasn’t sick and thus fit to drive. After intense pressure from me, my own doctor finally persuaded them to take me in for a talk and make a statement. It dryly noted that my ‘illness’ wasn’t active. I could have strangled them, because that means I’m still sick and, in the eyes of the police, one that needs to be monitored in the future.”
She completely disagrees with the bipolar diagnosis. She never had manic episodes before starting on the medication, and never had them after she quit. But the diagnosis is glued to her for the rest of her life, although it is well known that depression pills can trigger mania and thus cause the psychiatrists to make a wrong diagnosis, although it is “just” a drug harm and not a new illness. It is a medical mistake to make a new diagnosis as if there is something fundamentally wrong with the patient, when the condition could easily be due to an adverse effect of the medication.
She gave up the idea of becoming a taxi driver. She became a coach and went on studying to become a psychotherapist. She works with many different people and also helps patients taper off their depression pills, with great success. They are reclaiming life and seeing it move forward. She knows it is important to support them when they withdraw so that they will not face the same situation as she did. There are many thoughts and fears, and many people have difficulty defining themselves if they are no longer sick. So, the combination of tapering and therapy seems to have an extremely beneficial effect.
It is difficult to convince people that stopping the medication is a good idea. They firmly believe in it, because they are told they are sick, but even worse, there is great pressure from the relatives. She has felt on her own body what it means to stand alone with the withdrawal. Today, she no longer sees her family. They maintained the claim that she was ill and just needed to take her medication. This mistaken view is nourished by the fact that most websites still falsely claim that people fall ill with depression because of a chemical imbalance.9 If you believe in this, you also believe that you cannot do without the medicine.
A few years ago, she bought the domain name medicin-fri.dk (medicinefree.dk) in order to, in cooperation with others, one day be able to provide information about taking medicine and the harms, as well as provide help and support for withdrawal. There is a massive need for information dissemination. Too few people know about the problems or have ever heard of them. She wants to change that and wants to make sure that she does not give incorrect advice and information. She therefore wrote to me and asked if I knew about others who would like to join an organised network about these issues. I certainly do. I co-founded the Council for Evidence-based Psychiatry in England in 2014 and the International Institute for Psychiatric Drug Withdrawal in Sweden in 2016 and am a member of the board in both organisations. I also have a list of people who would like to help with withdrawal, and I have posted practical tips and tricks on my website, deadlymedicines.dk.
In addition to her daily work with clients, she lectures, but finds it difficult to “be allowed” to get the message out. She has lectured for Psychiatry in the Capital Region about being bipolar, which was easy. Everyone obviously wants to see a sick person and hear her story. But a success story that calls the system into question is not considered interesting.
She is passionate about changing things and has, for example, established several self-help groups and lectured for the Depression Association; volunteered in the Red Cross and started groups for lonely people; and mentored young people at the Families’ House in Esbjerg. Today, she is active in Better Psychiatry in Esbjerg and suggested they invited me to give a lecture. They did not know who I was, and the chairman introduced the meeting by saying that if more money was allotted to psychiatry it would probably be okay. I started my lecture by saying I wasn’t sure this was a good idea. If more money came in, even more diagnoses would be made, even more drugs would be used, and even more would end up on disability pension because they cannot function when they are drugged.10
She wants to give a lecture entitled “Surviving psychiatry,” inspired by my books, Survival in an Overmedicated World: Look Up the Evidence Yourself and Deadly Psychiatry and Organised Denial. Today, she finds it overwhelming to live a life that, after 11 years of medication, she thought was completely out of reach. Although her past life was “foolishly handled by various psychiatrists and other well-meaning doctors,” she does not want to mess it up and ask for access to her patient files. She would rather look ahead and inform others via websites and lectures about how harmful it is to blindly become medicated — often for no reason at all.
She is convinced that virtually none of her strange experiences during the 14 years she was drugged would have happened if she had not been given medication. Her memory suffered a severe blow because of the drugs, but it is improving.
She cannot understand why the doctors didn’t stop this drugging themselves. There was nothing that could justify her massive drugging, and when she gained weight from 70 to 120 kg, the doctors also did not respond, besides giving her medication to increase the metabolism, which was “completely nuts … It was extremely disabling in every conceivable way and in itself almost something they could give a depression diagnosis for, because it was a sad thing to expose your body to.”
She considers the system to be hopeless. You can’t blame her for that. The colossal overuse of psychoactive drugs produces chronic patients, often based on problems that are inherently temporary.
Perhaps you would want to know who this remarkable woman is. She has given me her permission to reveal it: She is Sandra Toft.
Peter Gøtzsche, MD Deadly Psychiatry and Organised Denial: Professor Peter C. Gøtzsche, MD, co-founded the Cochrane Collaboration. He has published more than 70 papers in the top five general medical journals, and six books, most recently, Death of a whistleblower and Cochrane’s moral collapse (UK link). He is currently crowdfunding to launch the new Institute for Scientific Freedom with the goal of preserving honesty and integrity in science.