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So, my name is Katie. I suffer from severe acid reflux, which is why two and a half years ago I was given metaclopramide in the UK, where I was studying abroad. I was never told any of the horrific "side effects" that could be caused by it, and after being on it for only two days I developed what I know in my heart to be tardive dyskinesia (and/or some other form of brain damage that causes your muscles to move/spasm and your body to not work properly) though I was never given a diagnosis by a medical doctor because every time I went to a neurologist they denied that anything was wrong with me or tried to tell me what was happening was normal. For the past almost 3 years now, I have suffered immensely, and my condition is constantly evolving. It began anxiety and intense brain fog, to the point where I couldn't drive because I felt unsafe. I had excruciating, unexplained pain all over my body, painful muscle twitches/spasms, many which were not outwardly visible (some of which were) and the feeling or actual sensation that my body/head was shaking rapidly which made me nauseated and irritable. On top of this, normal body processes were disrupted, I got worse symptoms when I was sick and my immunity was compromised, I was punished by my body (in the form of overwhelming brain fog and worsened shaking/spasms) when I got aroused by my boyfriend, stayed up too late, thought too hard, listened to music at the wrong time, ate certain foods, or got acid reflux (which was all the time since that's what I was taking the medication for to begin with.) Many of these thing evolved systematically-meaning the symptoms changed slightly as they got better and it was a constant cycle of things getting better and then worse and then a little better than before, up until I reached the point I am at now.
I am tired of the medical community treating this like a side affect, an allergic reaction, or just an unfortunate plague that has hit our community of people. I was poisoned. What happened to me was not inevitable; something that heals in such a systematic way and lasts for years to a lifetime is not an "allergic reaction." I have compared my symptoms and healing process to people who have suffered traumatic brain injuries/strokes and there are very many similarities. TD isn't a “condition”, it is a form of brain damage. They damaged our brains. Why are we letting them fool us? They maimed us and left us for dead, basically- left as freaks to a life of limitations and pain with no support (monetary, emotional, or treatment-wise) to help us through. We are unpaid medical experiments with almost no knowledge of what they did to us and what is going on in our brains (THEY don't even know, and they don't care much to try and find out. There is only a tiny amount of TD research going on right now, and you can bet its not the doctors or drug companies who did it doing the funding out of compassion for what they did.)
I am angry, and my life is broken, and I am tired of being powerless against a system with a lack of responsibility, or care to stop this. And it's not like we were unknowingly given this—they knew. And have known since at least the 80s, but probably before then too. The harm of this medication is too great to risk. No one would take it, knowing what it could do, if they had it for one day. The number one rule of medicine is DO NOT HARM. You do not knowingly give a sick patient something that can not only make them sicker, but disable and destroy them for the rest of their life.
I want to tell my story and be heard and acknowledged, most importantly by the medical community who turns a deaf ear or treats me like I'm crazy for feeling this way, and becoming upset when I expose them for what they are doing. I AM A VICTIM. And I want to DO something. I want OTHER people to do something. I want people to research a way to FIX my brain, not mask it with more drugs that f**k up other parts of me to mask the symptoms (like that new EXPENSIVE drug that depletes your dopamine supply so that you don't get symptoms because your brain can't process them anymore because it was DAMAGED--funny, isn't dopamine what makes us happy?)
Does anyone else feel the same? Is anyone else tired of being complacent with this crap? We're only powerless alone, but together, they will have to hear us.
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