Half life: the lithium years
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 used to experience, before I had properly worked through unresolved trauma.
The negatives 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. The label, and the fact of being on long term psychiatric drugs, have a nocebo effect, which affects self-esteem and recovery prospects. I heard today that lithium can reduce life expectancy to 70 years if taken on a long-term basis.
The fear of suicide is great among doctors and family members, as well as among patients. 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. A company recently bought the two leading brands in the U.K. and threatened to discontinue one while jacking up the prices by twelve times for the other. I had been considering seeing how I got on without lithium for some time. This served as a final straw.
Even after 22 years and a solid recovery it still took me time to pluck up the courage to withdraw. I had to feel very solid within myself, get to a point in recovery where I was not getting triggered, cut out unhelpful relationships which were causing distress and make significant changes to my lifestyle.
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 test to demonstrate that I have bipolar, 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 is a product of the collective consciousness of the psychiatrists who diagnose it.
Lastly, as a businessman I can see that the financial value of a patient suffering a chronic condition is 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 how 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 for them and for the pharmaceutical companies that they work with.
I had been talking to my psychiatrist 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; he had previously told me that relapse would be inevitable.
His suggestion was 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 a decade. I was able to contain the symptoms by going for a long walk and felt better the next day. Nonetheless, the experience scared me. I was unable at that point to distinguish between withdrawal effects and relapse, and decided to reinstate the original dose.
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 severe chest, back and leg pains. The emotional side effects include 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 this 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 five months into my taper and have reduced from 800mg to 550mg so far.
Armed with a jewellery scale and a spreadsheet, I micro-taper, removing tiny amounts from the capsules every day, weighing and tracking my doses on a chart.
The good news is that I have started dreaming again and am feeling a return of my passion and joie de vie, which has been deadened for so many years on this drug. There has been a lot of emotional release, which has been cathartic. It is as if I am 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, friends and a therapist. I have also stayed in contact with my psychiatrist so far. He knows me well. For all of our disagreements, I respect his dialogical approach, and appreciate the therapeutic support he has given me over many years.
My first goal is to recover completely from what he and others in his profession call bipolar disorder, and to be living proof that this is not a chronic condition. My second goal is to help others to recover in the same way.
Jim Miller
Barbados
7th June 2021
