Tardive dyskinesia-Is anyone else angry and want to do something about it?
Posted , 11 users are following.
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.
0 likes, 27 replies
lucie41026 katie6557
Posted
I’ve never heard of Botox helping side effects related to TD. Interesting though. As of dementia related to medication supposedly treating or helping symptoms of TD, it’s scary.
At this moment I am devastated. I started having these problems about three months ago. It’s getting worse. I shake violently from head to toe, my vision is impaired (everything I see is moving up and down very fast), I got no balance (I fell yesterday and hurt myself pretty badly), difficulty speaking. A week ago I had to call for an ambulance. I spent the day at the hospital. They gave me Ativan and a medication to to calm the tremors. It worked but the day after everything came back. I started a new medication today. Went from Xenazine to Austedo. I am skeptical.
So, yes, I am angry.
kris11713 lucie41026
Posted
How sure are you of your diagnosis ? To me, just little 'ol me, your condition sounds much worse than tar dive dyskinesia.
I still wonder what drugs you've been given and you said your condition started only 3 months ago ? Mine started years ago.
Have you asked for a second opinion?
How was your health before this began?
So sorry the ER did not help you more.
mick59318 katie6557
Edited
Hey there Katie. excuse my many typos, as im typing from my phone...but i wanted to make contact before it slipped my mind. your story is so incredibly relateable to mine, that i registered on this site just to comment. ive never heard someones TD described so closely to mine and so similar in how it has debilitated your life, i could honestly almost cry. i dont know where to start. i would like to comment to further when i get to my computer. im male and now 30 years old. i have been suffering with TD for over 12 years now. when i was 18 years old, i was prescribed abilify to see if it would help my mood swings. 3 days later i had a deathly seiszure and from then on i have had this "forever evolving" tardive dyskinesia that has ruined every aspect of my life. i have been seeing neurologist now for the entire 12 years. they first diagnosed it as "unspecified muscle movement disorder" which was first treated with loads of benzos (xanax, klonopin). those drugs ruined so much but thats a whole other story. eventually i gained a tolerance and they tried to control it with botox for the past 10 years with almost no positive effect and lots of negative effects due to incompetent neurologist. i cant begin to describe how it stole my entire life and every goal and dream i have ever had. i want to stop here so i dont lose this text. my phone is like that. i will continue in another text but am getting tired. as long as it is ok with you, id like to tell you more about my story in a message or w
e . im not sure how this site works as I just signed up to contact you like I said. it is so amazing to hear somebody talk about their life and such a similar way, I am in all and it's a little embarrassing to admit but I want to cry ha. a good cry. im going to show my family this very soon becasuse i have never been able to get them to believe, let alone understand how its made me broke me to feeling "sub-human" and isolated
yvonne53774 katie6557
Posted
Hi Katie, how are you now? You made me cry. I am very angry too, dream of writing a book, my experience is long.
After struggling all my life with no answers I was forced to leave my career as I couldn't do it anymore due to physical pain and weakness, I was 30 and had just acquired a mortgage, which I lost.
For some reason my doctor refused to believe it was physical and insisted that Prozac would help. Stupidly I took them. On the third day I went into spasm, rocking from the waist, arms and legs flaying out. If I try to control it, it builds until I can no longer hold it in. My eyes rolled back, my tongue was sucking into throat, lots of things, lasted a couple of hours then went away. I reported it but got told I was overeacting and was offered more medication which I refused.
I had already seen an analyst who agreed I had real physical pain, not in my head.
Jump to xmas 2013. I was suffering awful nausea, couldn't eat, went down to 6 and a half stone. Had a diagnosis of hypersensitivity by now too. Was given Metoclopramide, it was the fifth day when it started again, I recognised the feeling from 14 years earlier, it is the most uncomfortable experience under the skin, all muscles going into spasms. I couldn't speak but made awful noises, I thought my heart would fail. FOUR hours later, I was already wearing a fentanyl patch for pain but it had peeled off with my sweating, (I never got pain relief through my skin!) and I still do not know why I did it but I put it in my mouth. It had been on me for too long and shouldn't have had any strength to it but within 15 minutes the whole seizure went away....I was so relieved. I thought it had gone, like before, but as the fentanyl subsided the spasms came back.
It took four days to recover enough to do research, read tardive dyskinesia on the paperwork that came with the meds, also that it shouldn't be given to hypersensitives or people under seven and a half stone in weight!
Watched others online and read a lot to confirm it.
I Yellow Carded it, the UKs way of making patients feel they've done something useful!
I reported it to many doctors, neurologists etc., been laughed at, called a liar, need psychiatric care etc., generally fobbed off constantly.
I am now petrified. The tardive is incredibly awful, I cant find the words, I have been using fentanyl to keep it away but its still there.
One lovely doctor believed me when he saw footage of me. He tried high dose tetrabenazine but no luck, then high dose clonazapam but still its there. Funny thing was, even on those high doses I didn't notice I was on anything......did he fob me off nicely, were they placebos?
Can you let me know how you are please?
Another thing, my mum took meto's for years and years, she complained when the government stopped her having them under new guidelines, she never had one side effect!
Love, peace and care to you.
ingrid44605 katie6557
Posted
Hi, so sorry to hear about your experiences. My son's life has been changed dramatically by anti psychotics too. He already had autism and now he has chronic sleep issues, mood swings, abnormal movements, twitches, tics, speech problems, anger etc. My happy child is only 20 and is a shadow of his former self. i too believe it has caused brain damage. i also dont understand the apathy in some of the responses. i am furious. these drug companies are pure evil.