Harmed by Psychiatric Drugs Prescribed for Acid Reflux

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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.

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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.

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23 COMMENTS

  1. Thank you for sharing your journey. It’s incredible that they would prescribe you such a dangerous drug for acid reflux! It makes me so mad to hear of everything that you went through, including being told to just “ignore” your disabling symptoms if they come back. It’s as if they are trying to recruit you into their cult of “ignoring the side effects”.

    My wife used to have heartburn and found out, quite by accident, that regularly eating radishes helped calm down her stomach. More generally speaking, trying an elimination diet (to try to identify offending foods) as well as trying to eat as much whole foods as possible may help too. Of course, this is not to say that everybody’s reflux will be cured by these methods, but I often wonder why doctors don’t prescribe simple lifestyle strategies like these first, instead of immediately handing out dangerous drugs as if they were totally harmless.

    Keep up the good work and I wish you good luck on your ongoing journey of recovery.

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    • Thanks for your kind words.

      I did a reflux elimination diet for years but actually an elimination diet that targets inflammation has been far more effective at controlling my reflux symptoms.
      I also noted that controlling anything that triggered allergy helped.

      I noted in my blood my esonophils were raised and my reflux symptoms diminished when I replaced my mattress of all things.

      I found a potential link between reflux and esonophillic osophagitis, which has to do with inflammation of the windpipe due to inhaled allergens.

      I now manage my reflux without meds and its better than its ever been, but has taken hard work. I’ve had to be inventive and disciplined.

      Worst thing about this is the metoclopramide did not actually help any of my symptoms.

      When I visited the neurologist he said my symptoms were much better and I agreed as my akathisia had diminished significantly but I actually had quite a hugh level of physical disability still.

      Akathisia consumes your mind, consideration of my other symptoms were secondary to that and was just relieved to have some respite. I have some peripheral nerve pain but it’s nothing compare to the hell of tardive akathisia.

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        • Thanks for the tip. Hopefully these will be useful for anyone looking to manage symptoms without medications, if they are concerned about side effects.

          I avoid lots of meat as it boosts serotonin and I know from when I tried 5HTP as a suppliment or went to have a meat platter at Hickory’s it’s very bad for my neurosymptoms, never mind my reflux!

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  2. is metoclopramide antipsychotic.l am using metoclopramide for constipation. metoclopramide prescribed to me the doctor( note:psychiatrists are not a doctor. psychiatrists are like a fake doctors in turkey). I bought from the pharmacy when it was good to me.a rare side effect of antipsychotics is sudden unexplained death.ıt lie that the psychiatrist requests to prevent suicide. if psychiatrist requested to prevent suicide antipsychotics does not prescrib. there is a possibility dying for antipsychotics. nurses in psychiatry clinic were looking into their mouths for see you swallow after they drank the drug by force

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    • Metoclopramide is a dopamine receptor antagonist which means that it blocks the action of dopamine in the brain. This is also considered to be the way that anti-psychotics work, but metoclopramide is not considered to be an anti-psychotic. However, it carries exactly rhe same risks.

      I have never heard of it being taken for constipation, there are far safer ways to treat constipation in my opinion.

      Severe symptoms may emerge upon starting, changing the dose or stopping the drug, so you need to seek advice if you plan to do any of those things.

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    • I bought metoclopramide from the pharmacy for constipation but there is no black mark on the box. I am not advocating this or l am not saying something. l think really drugs which is being bought in turkey is odd. I do not trust psychiatrists no way because psychiatrists lie. l suffered for psychiatrist. l have to live with my family because of psychiatrist. l am hating everything for psychiatrist and state and society

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    • I had never heard of a black box warning until after my reaction. I think it is really down to us to consider the risks for ourselves because of failure to warn us at the point of prescription.

      I do this now with doctors on the very rare occassion I need a drug for an infection or something and doctors question why I do this. I got told by a doctor when prescribing a different drug ‘just take it, nothing will happen to you’.

      It’s an infringement of our human rights to not be told about the consequences of drugs or be met with hostility when we do question it.

      After all I live with disability now and was very quickly dumped by the medical profession afterwards with no help or support. It’s a lose/lose situation.

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  3. Samantha, firstly, I extend my sympathy to you for having been so abused by your doctors. I have been also. I’m also a sufferer of akathisia—Acute, tardive and ultimately chronic. And of several other iatrogenic damage. The emotional trauma from being denied, dismissed and/or gaslighted is no small thing either. I am really sorry you had to go through that. All this suffering just so a few people can stay rich and powerful is beyond tragic.
    I’m very glad to hear you are recovering. Best wishes to you and to us all!

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    • Hi Blu,

      Thanks for your kind words. I agree that the way doctors treated me compounded the trauma of the experience. After engaging with hundreds of people with iatrogenic harm over the past five years, I can only include it’s systemic psychological abuse. However, everyone I have spoken to where doctors believed them and got ‘treatment’ are all worse off, their harms worsened. They

      Doctors just don’t know what this is and certainly do not understand it. How can you treat what you do not understand?. Until there are definite diagnostic tests linking causes and patients reporting successful treatments there can be no trust.

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  4. Thank you for sharing your story, Samantha, also for pointing out the black box warning and fact that, as a dopamine receptor antagonist, metoclopramide should technically be classified as a neuroleptic / antipsychotic.

    IMHO, it’s shameful that American doctors think messing with “a neurotransmitter made in your brain [that] plays a role as a ‘reward center'” – in other words – prescribing a drug that can reduce a patient’s “reward center,” is acceptable human behavior. I personally think this is morally repugnant, and blatantly anti-American.

    https://my.clevelandclinic.org/health/articles/22581-dopamine

    God bless you in your continuing healing journey, Samantha. I’m glad your akathisia and dyskinesia have largely subsided, mine mostly did too, thankfully.

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    • Thank you. Yes dopamine has hundreds of important biological functions. When I learned that the action of metoclopramide was pretty non specfic I was horrified. I saw one fMRI study which showed how the dose was distributed in the brain, it was everywhere. This is the problem when only target effects are studied and acknowledged and the aeitiology of side effects are not known or studied, just listed as a series of observations. When you dig into the potential causes of side effects it’s pretty eye opening. I’m glad your symptoms have mostly resolved, they are very distressing.

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  5. Brilliant Sam,

    Your ideas are well informed and evidenced so anyone reading can really understand what is going on out there. For those of us who have looked and the evidence and engaged the people dealing with these issues is incredibly obvious but for the others, they need to understand for themselves and for us, after all we are all connected.

    On that note, you bring up a really excellent point about patient engagement. Why aren’t the patient voices being reported on, documented and emphasized in the data? Doctors opinions are overly emphasized, especially when they are not experiencing first hand what is occurring – so the most critical part of the interaction, the experience and practical knowledge is not present in their findings.

    And on the other hand the patience experience which has the most relevance and detail is dismissed, when it provides the most impactful, specific and meaningful data available.

    If we scrutinized very carefully just a small number of patient experiences and learned form them we could know all the most important details of how a medical treatment works and its effects. However doctors can observe an endless number of patient experiences and never know the most important aspects of how medical treatments are working and effecting people. This is perfectly articulated by your piece here.

    I am particularly grateful on your information on akathisia.

    Thank you so much for writing it up!!!

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    • I would not just say that “patient voices” should be reported on, they should be CENTRAL to any analysis, while doctors’ opinions should be considered secondary. As long as “patient experiences” are of secondary concern, we will continue to have a system that oppresses those it’s supposed to help!

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    • Hi James,

      Thanks. I think it is important for people to understand what is self evident to those that have been harmed. It is those people I want to reach because those that are already harmed know it. They had their bubble burst, psychological/emotional safety and cultural conditioning gone in an instant. It is a psychic shock that cannot really be understood until it is experienced. How we delude ourselves around how the world operates and how we view opposing views as some sort of interesting intellectual debate until it impacts us with raw visceral force.

      Culturally we have covered up the patient voice and given our power away to the experts and we are paying for it. Hitchcock had it right in his original idea of gaslighting. I try to highlight this with figures. How many people reporting highly consistent figures is enough to be believed? how else can we be heard?. That is what struck me when I entered the groups, the sheer number of people, the same story over and over and how could I as someone who worked in social care for so long, be completely unaware of it?

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  6. i’ve just “stumbled upon” this blog and am so grateful to you samantha. acid reflux is a very common issue as people age. at age 68, i’ve been gradually becoming aware, from friends’ reporting their experiences (with all kinds of problems that arise with aging), how easy it can be to take that drug your “doctor” prescribes for a condition that may not even be terribly severe, without researching that drug.

    your story has reinforced my recognition/acceptance (since a bad experience after breast cancer surgery, due to anesthesia drugs and/or being given an antibiotic i was known to be allergic to) of how important it is to do thorough research and carefully consider the risks before taking any prescription drug. especially one with a black box. and thanks to the internet, one can find reports from many many patients of their experiences.

    but what i mainly want to say to you is thank you, thank you. for your efforts to communicate to as many people, as yet unharmed, as you can what they could be walking into in “blissful ignorance”. given your struggles, what you have managed to do with what you’ve been given is amazing and inspiring. so many people will draw inspiration, hope, and strength from your example. and, of course, the work of all those working in the same ways to spread awareness of the risks anyone takes walking into a medical office seeking help and unquestioningly doing as they’re told.

    keep up the good work and know that your work is a huge help to many and is deeply appreciated, by many who cannot express that directly to you.

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  7. I’m currently in the UK and have akathisia, I saw a locum Dr who just said restart medicine. Mine was caused by withdrawal from an antidepressant I was put on 13 years ago for depression. Later found out the cause was a thyroid disorder not depression. Left on it for all these years and I stopped it to quickly. Causing akathisia. How do I get better, please I’m desperate at the minute, I’m really struggling. I’m not going back to the Dr’s quite frankly after the thyroid misdiagnosis and now this, there lack of knowledge and inability to listen to there patients scares the hell out of me.
    Will I get better. I can’t sleep or eat very much, agitated, restless legs, panic. I’ve learnt alot online so that’s helping.
    I cannot believe how much they’ve let you down. I’m so sorry you had to experience what you’ve gone through. You are one strong lady, I only hope I can be the same. Thank you for your story

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