My name is Jim and I’m from London.
I had two major manic episodes in my twenties, followed by depressions, and a minor episode in my early forties. The first came after the loss of my father to suicide. The second when I was experiencing family problems after the birth of my first child. The third when I was getting divorced. I was hospitalised and given a diagnosis of bipolar disorder at the age of 29, during my second episode. I’m now 51. I have been on lithium since receiving the diagnosis.
Lithium has its pros and its cons. The main positive is that it reduces the likelihood of suicide. It also dampens down the extremes of anxiety and depression that I experienced in early recovery, when my trauma was unresolved.
The negatives with lithium are that it needs careful monitoring, has side effects, only some of which are fully understood, and is provided as a treatment in perpetuity with no hope for recovery. It can affect kidney and thyroid function over time. It also restricts the range of emotions that I experience and affects my self-esteem. I heard today that it can reduce life expectancy to 70 years old if taken on a long-term basis.
The fear of suicide is great among doctors and family members. I had lost my father to suicide, and as a father myself I did not want to take any risks in that regard. I think that is why I was prepared to take the advice of professionals and comply with the prescription for so many years.
Until recently lithium was a reasonably priced drug, although a company recently bought the two leading brands in the UK and threatened to discontinue one while jacking up the prices by twelve times for the other. I felt disgusted by this. I had been considering seeing how I got on without lithium for some time, and this served as a sign that the time was right, and a further encouragement to stop.
I had been on lithium for 22 years and it still took me a long time to pluck up the courage to withdraw. I had to feel very solid within myself, get to a point in recovery where I wasn’t getting triggered by things, and have cut out some unhelpful relationships which were affecting my mental health.
My doctor had told me that bipolar disorder, the diagnosis that I had been given, is a chemical, biological and genetic condition that I will be living with for the rest of my life. Three things concerned me about this.
The first was that a psychiatric diagnosis is not a true diagnosis, it’s really just an opinion. There is no objective test for bipolar, and the process by which a diagnosis is given is to compare the symptoms listed by the patient with the agreed diagnostic criteria. My own experience was that the symptoms I experienced improved significantly with each episode as I gained more insight into what I was going through and learned how to take care of myself. I saw a discrepancy between the claim that this was a chronic condition and my own experience of being able to work through the challenges and ameliorate the symptoms. It seemed to me that if I could improve my experience from one episode to the next, then why could I not fully recover?
The second, was that when I asked for supporting evidence to back up these claims about the condition being genetic, chemical or biological, none was forthcoming. I have never been given a genetic test to demonstrate that I have bipolar, or any kind of chemical or biological test, and I have never seen any scientific evidence to suggest that such a thing as bipolar, beyond being a descriptive label for a cluster of symptoms, even exists. The medical establishment’s view seems to be that as I have suffered mania, psychosis and depression in the past, that is sufficient evidence that I have a chronic condition and need to be medicated for the rest of my life. An alternative explanation is that the medical profession have a label for certain symptoms of emotional distress, expressing as severe mood swings. They do not know how to cure these symptoms, and so tell the patient that she is suffering from an incurable disease. There is no evidence that the diagnosis that they provide is actually a verifiable medical disease, and through a process of collective delusion they appear to turn a diagnostic label into a chronic disease. In fact, whereas the symptoms are all too real, and can without a doubt prove fatal to the sufferer, the chronic disease exists only in the collective consciousness of the psychiatrists who diagnose it.
Lastly, I have a critical and contrarian mindset, and a background in financial services. It occurred to me that the financial value of a patient suffering a chronic condition is a lot higher to the companies manufacturing the drugs and the private doctors that monitor those prescriptions than a curable condition would be. When I was working as an investment banker in the 1990’s I remember being appalled that the bank’s advice to clients was always to take the route that would generate the largest fee for the bank. Could the same be happening here? Have the world’s psychiatrists decided that bipolar is a chronic condition because they do not know how to cure it yet and in any case it is more lucrative that way. This question would come up relatively frequently in discussions with my psychiatrist, who is a private psychiatrist and who charges £265 for a session. He would tell me, “you have a chronic condition”, I would think “you would say that, wouldn’t you”.
I had been talking to him about coming off lithium for a couple of years before I felt fully ready. I think he could sense when I was because he eventually said that if I did want to try he would be supportive. This was a big change in attitude, as he had previously told me that relapse would be inevitable if I stopped taking it. His support was to suggest that I reduce my dose in four, equal quarterly amounts over a four month period. I tried this approach, and within ten days of the first reduction I hit a period of stress and experienced hypomania for the first time in decades. I was able to contain the hypomania by going for a long walk and felt better the next day. Nonetheless, the experience scared me, and I reinstated the original dosage.
I shared this experience with my GP, who suggested reducing in eighths not quarters. I tried this a little while later and found that the withdrawal effects at that level were brutal. The psychological withdrawal effects are a fear of suicide, and some suicidal ideation which was in no way related to my otherwise generally good mood. The physical side effects included chest, back and leg pains. The emotional side effects are strong feelings of sadness, some anger and some fear, as well as occasional anxiety. There is a sense of having to deal with a much wider range of feelings than I am used to, and at times of heightened emotion this can be a challenge to contain. There is also some brain fog, feelings of mental disturbance and exhaustion.
It was only while I was struggling with these withdrawal symptoms that I started discovering the world of online psychiatric drug withdrawal, and finally started connecting with people who had some knowledge and experience of how to get off psychiatric drugs. The individuals running these sites are inspirational. I want to mention Laura Delano at Inner Compass and Adele Framer at Surviving Anti-depressants, both of whom welcomed me personally and provided helpful advice on how to do it, as well as the hope that it can be done. I also want to mention the lithium withdrawal group on Facebook, which is a tight-knit and very supportive group. They and so many others are doing an amazing job of cleaning up the mess.
I am now micro-tapering and doing well. I reduce my dose overall by between 5 and 10% a month, decreasing in very small amounts every few days. The withdrawal effects seem to have gone. Others in the groups are having the same success using this approach. It is still early days. I am three months into my taper and have reduced from 800mg to 650mg so far. It is not surprising that it is taking some time to get used to having less lithium in my blood after 22 years. I am lucky that I am not in any rush. I micro-taper, pause to see how I feel at regular intervals and then continuing when I feel ready. I have learnt about the logarithmic aspect to drug tapering, which makes sense to me, and I’m prepared for the withdrawal effects to increase as my dosage decreases. I have also learnt how to really listen to my body, and to trust what I hear.
The good news is that I have started dreaming again and am feeling better within myself for much of the time. There has been a lot of emotional release, which has been cathartic. It is as if I am slowly and gradually awakening from a deep altered state, which had entirely supplanted my reality, and in which every sensual and emotional connection with the world had been numbed. I have been living in this altered state for so long that I have totally forgotten what the real world looks and feels like. As I withdraw, every day brings joy of long-lost connection with loved ones and the world around me.
I feel well supported by family and friends, and most critically by the peer-to-peer communities. I have stayed in contact with my psychiatrist, although I feel as though I am now educating him about withdrawal, based on what I’ve learnt from others online. He continues to be sceptical as to whether somebody with a bipolar disorder diagnosis will be able to come off Lithium without either a relapse or a reinstatement of the full dosage. I continue to see him because, lithium aside, I respect his dialogical approach and appreciate the therapeutic support he has given me over so many years. My goal is to recover completely from what he and others in his profession call bipolar disorder, to be living proof that the condition is not a chronic one, and to help others recover in the same way. This withdrawal process is an important step on this path.
6th April 2021
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Jim is withdrawing from lithium after 22 years