Comments by Samantha Long

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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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  • 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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  • 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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  • 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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  • 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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  • 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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