In 2017, I was prescribed metoclopramide for acid reflux. The drug has a black box warning and the risks associated with the drug are so severe that the medicines and healthcare products regulatory agency had written to all GPs in the UK in 2014 restricting its use.
At the time I was unaware that metoclopramide is in the same drug class as antipsychotics with the same potential for serious side effects. As far as I was concerned, the action of the drug was on the stomach not the brain or central nervous system. When I speak to other people who have been affected, this is the thing that catches them out; they do not think doctors would administer a drug with such potentially severe consequences for nausea, reflux, or headache. This is not a one-off, there are other drugs in the same class administered for the same ailments.
I had been taking metoclopramide for a while and in December 2017 I knew something was wrong within an hour of taking it. I had twitching in my muscles and my first experience of akathisia. It is hard to really describe how bad akathisia is. In the patient information leaflets it is often described as restlessness paired with insomnia. I would describe it as my nervous system being tortured, all my sensory nerves being stripped with knives, a complete inability to rest or lie down and extreme insomnia. At one point I had virtually not slept for 18 days.
Akathisia is associated with suicide. I have spoken to hundreds of people with akathisia, and they want to live. This is different from suicide caused by depression where people want to die. They are faced with a choice like those trapped in a burning building: face the flames or jump from the window. Many drugs have the potential to cause akathisia, often people do not realize what it is until they have it, then it is often too late. I was 40 years old when I first experienced akathisia, and it was outside of any bodily experience that I had had up until that point.
The acute akathisia and dystonia that I experienced were denied by my GP until I complained to NHS England, and they acknowledged my reaction. I was repeatedly told that akathisia was unlikely because of the low dose and because it was ‘rare.’ However, in the letter written to GPs in 2014, although reactions are more common in longer and higher doses it can occur after one dose and the British national formulary lists neurological reactions as common, i.e., 10%. A recent study has shown how our understanding of drug dosing is changing with some psychotropic drugs occupying between 25-30% of our brains on doses of just 1mg. The action of metoclopramide is not specific and dopamine is the predominant catecholaminergic neurotransmitter in our brain, controlling numerous important biological functions: control of muscles, memory, hormones, and emotions being but a few.
Nobody knows what causes akathisia, there are no diagnostic tests, so it comes down to medical opinion and is frequently misdiagnosed as anxiety or panic. By that point I had joined support groups to find that misdiagnosis and denial of neurological symptoms caused by drugs were commonplace, and support groups often containing thousands of people (67,125 in this user-led study) had a group knowledge that was contrary to my understanding having worked in care for 20 years.
As far as I am aware there is zero research being conducted into the cause of akathisia and it’s not been given any attention or funding. Akathisia was first described in 1901 and drug-induced akathisia in 1960 (i.e., it’s not new). When drugs are released onto the market, their target effect, such as suppression of acid secretion in proton pump inhibitors is studied. All other effects are not studied but noted. ‘Side effects’ in this context is a bit misleading as it is just a term for a drug effect that is outside of the reasons why the drug was developed. They do not speak to the intensity or severity of side effects which can be just as potent or more potent than the intended effect.
Take proton pump inhibitors, for example: it is well known by veterinarians that they reduce the flow of fluid around the brain and spinal cord and have been used to treat buildup of fluid on the brain. My point being that medical focus is on treatment effect rather than side effects, and medical knowledge and practice is influenced as much by medical culture as it is by scientific inquiry. Treatment effects are accepted and promoted, side effects ignored, downplayed, and diminished. Imagine going to your GP and telling them your drug for reflux affects fluid on your brain; you will be met with the same reaction I was when I reported known drug side effects.
About twelve weeks after my drug reaction, I developed abnormal muscle movements and other horrible symptoms which led to me being an inpatient. I was initially diagnosed with tardive dyskinesia which was later reassessed by a neurologist as being functional neurological disorder. My akathisia had returned with a vengeance and what in my opinion was tardive (delayed) akathisia which is extremely difficult to treat. My experience on the ward was traumatic; other patients were angry on my behalf from observing my treatment and being subjected to assessments of my social interactions with staff was humiliating. After five days, given that I wasn’t being offered any treatment and that I was finding the whole experience psychologically damaging, I discharged myself so I could focus on my recovery and agreed to outpatient testing.
Most doctors I saw viewed these side effects as a short-term, self-limiting problem. People I talked to in the groups had more chronic symptoms with an average resolution of 4-5 years. Of course, most people in these groups are there because of the chronic nature of their symptoms, as those with more acute symptoms soon leave or don’t search for more information, but the numbers of people in those groups and the consistency of their experiences was striking. My neurologist saw me as an outpatient and shortly discharged me, saying “Your symptoms may come back at some point in your life, if they do, just ignore them.”
Shortly after my stay in hospital, I saw a psychopharmacologist whose opinion was that my symptoms were drug-related and I should try to avoid prescription drugs for the rest of my life. I agreed with him given the experiences of other group members who had repeated episodes of more and more severe drug reactions, and given the fact that I had now developed sensitivity to many substances, including food. This is a symptom commonplace in the groups and listed in metoclopramide side effects as immune hypersensitivity.
There are no diagnostic tests for tardive (delayed) symptoms caused by many classes of drugs so it comes down to medical opinion, and my experience in the groups was that it was hardly recognized and diagnosed as functional neurological disorder. Indeed, the website that patients are given to explain functional neurological disorder now lists an adverse drug reaction as a potential trigger. I knew only two people in a group of over a thousand where their symptoms were acknowledged, and many thousands of people were in a similar position. There was no difference between the symptoms of people whose reactions were acknowledged or those that were denied. I knew from my association with the groups that many patients and professionals had petitioned to try and get symptoms acknowledged and prevent further harms.
However, what is not denied is that this drug and others have the potential to cause significant disability, whether the diagnosis is tardive dyskinesia or functional neurological disorder. FND Action’s website has a description: ”(FND) is a brain network disorder that can encompass a diverse range of neurological symptoms including limb weakness, paralysis, seizures, walking difficulties, spasms, twitching, sensory issues and more. Anyone of any age can receive the diagnosis. For many symptoms are severe and disabling, and life changing for all.”
Although it is the opinion of doctors that these kind of drug reactions are rare, functional neurological disorder is not, with 1 in 6 people having a neurological condition and up to a third of patients seeing a neurologist being diagnosed with FND.
In my opinion it is only right that patients are aware of the possibility of neurological side effects and significant disability from these sorts of drug reactions, regardless of any dispute about diagnosis. The dispute about diagnosis leads to inaccurate figures of people who are reporting neurological symptoms as a result of drug reactions. The problems with either diagnosis remain liability and lack of treatment options, leaving patients disabled without any financial, practical or emotional support or understanding. Doctors’ answer to this is that assessments should be completed on the basis of how disability affects functioning, but often the first question asked is ‘what is your diagnosis?’. I was reliant on my partner and thankful for his support, but our relationship has recently broken down, leaving me looking at living independently for the first time since becoming disabled. I know of people with akathisia whose losses are compounded, and when they lose everything, they often then lose their life.
My question from this experience is how can the real risks of taking a particular medication be evaluated if the data provided by patients is dismissed by medical professionals?
My subsequent answer must be to include and read about patient experiences in my decision to take any drug. I feel that if there are thousands of people suffering in an online support group, questions need to be asked and I use groups with high numbers of consistent reports to now evaluate risk for myself.
The other problem I see is the approach to risk by doctors as they tend to see these side effects as short-term and evaluate risk in general terms. There may be other factors in the decision that means the evaluation of risk should be more individual. I have a history of severe drug reactions, so the risk calculation should have been different. In addition, I made assumptions about drug prescription and regulation. Now, having read about drugs that have black box warnings, I would not have thought these drugs would be allowed to be prescribed, but they are and without sharing that information with patients, it’s not informed consent.
I am writing this piece nearly five years since my reaction and my recovery has been very gradual. I decided to speak out following the successful resolution of my medical negligence case against the NHS, to try and give people a picture of my whole experience so that they can make their own judgements and hopefully informed decisions. I would like to thank my solicitors for their support.
I am physically disabled, have very mild infrequent episodes of akathisia, and cognitive issues, but have continued to work part-time as a disability advocate. I am now looking at increasing my hours so that I can live independently and I am saving/fundraising for suitable equipment and accommodation to allow me to do so. I am emotionally and psychologically scarred from my interactions with a disbelieving and unsupportive medical system. The worst of these was the labeling of symptoms as a mental disorder when I knew that further psychiatric medications that caused akathisia could be prescribed.
I am relieved that my akathisia has largely resolved and that my disability remains stable. I have adapted my life around my difficulties, and now, through my own hard work, have some quality of life back that I started striving for in 2018.