Tardive dyskinesia-Is anyone else angry and want to do something about it?

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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 thisthey 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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  • Posted

    You should see a neurologist specializing in TD. Mine diagnosed my disorder after studying my physical symptoms  and, listening to me, within 30 minutes. Presently I am taking Xenazine but overtime causes TD... In about a month I will switch to Austedo which treat TD specifically. 

    I wish you the best of luck in finding the right neurologist.

    • Posted

      If you actually read my post, you would have seen that I in fact saw three, all of them told me there was nothing wrong with me and there was nothing they could do. The first one, a dumbass, sexist male in my hometown who sized me up based on age and appearance, looked me over, said i was fine, and refused to do any tests on me. When I begged to get an MRI because that's what one doctor overseas, where the damage happened, told me to do, he approved it but then told the insurance behind my back I didn't really need it so we got slapped with a bill for thousands of dollars. The second was a TD specialist at one of the best hospitals in boston, the closest city to me, who told me I didn't have TD because I also had tremors (despite me trying to tell her I had read stories from other people in forums having TD muscle spasms and tremors after taking the drug, but apparently those don't count because they're on the internet) but that "whatever I had would go away." She then reffered me to a cognitive behavioral specialist (which I did not go to) to try and "change how I feel about my 'muscle movements'". The third, a neurologist in a city in my state, told me my muscle twitches were normal and that I should see a counselor to learn how to handle my overeacting to normal body functions. So after being told by three neurologists your essentially crazy or just desperate for attention, when the pain is happening right there in front of them, you don't exactly want to go back ever. It pretty much made me except there was nothing I could do about my situation but be angry and cringe through it.

    • Posted

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  • Posted

    Hi.  You are right TD is damage to brain caused by medication;  and doctors have known about it for many decades.  I got TD from the anti-psychotic Geodone.  I found out later that I had taken similar drugs for years.

    Why in the hell you were given such a dangerous drug for acid reflux is beyond me .... for me, it was some treatment-resistant form of life-long depression.

    I wonder how old are you?  I'm now 68.  For me, it's at least 10 years ....I cannot answer you about anger ..... depression is my usual state.  But, Good for you !!  Get angry for the rest of us.

    How can I help you .... 

    First, what do you know now about the drug metaclopramide ?

    • Posted

      Hi Kris11713!

      I don’t know anything about metaclopramide. I just did a quick research and found out it was prescribed for a short period of time. I too was prescribed anti-psychotic medication for years and when I stopped taking all of it that’s when I developed TD. I should not say that I developed TD after stopping the meds because I’ve been told it was already a condition but was masked. Like I said in my previous post I’m switching to Austedo next week, although Xenazine helped a lot.  My neurologist has great hope. I’m 64...

      About your anger, let it out, in a positive way though.

    • Posted

      I'm 23. This is my third year since. I am only now getting to the point where I feel well enough to work full time, because the tremors and brain fog aren't zapping my energy as much as they used to. 

    • Posted

      I still cant work full time though, but almost. But what I make with all the debt accumulated from not being able to work for two years, it doesnt pay my bills 
  • Posted

    F**k being positive. The only thing I'm positive about it that we got screwed over-why should I chose to let out my anger in away that's controlled and deemed acceptable by society that doomed me to this fate? A life of limitations which i am shamed for when i cannot support myself or do what others expect of me because of them. Just now my own mother excuse me of riding the system because my disability did not allow me to work, so not only do I have to deal with the pain I am going through, but the pain of being told by people I should take it gracefully and be okay with it. and only react in ways that suit them.  My muscle spasms didn't censor themselves when I was crying out in pain, hoping for them to stop just briefly. Succumbing to society will never create change. I want to do more than vent and meditate on why I shouldnt feel the way I feel or act out. I want to fight. It's time we got what we deserve.

  • Posted

    OK.  I'll help .... where do we start?

    Does anyone else suspect that tar dive dyskinesia eventually expands or worsens?  I seem to have painful dystonia in my neck, which many many efforts and MDs cannot address (maybe they don't even believe me?)

    This condition, worse than my TD, is devastating my life.  Sometimes I want to give up.  

    Again, anybody think TD can go into the neck?

    • Posted

      oh 100%. ive read about several cases of td in the neck, and lots of people say it gets worse. mines been changing the whole time ive had it. after about 3 days after my initial "reaction" to the drug, I developed nerve pain. now after 2 years most of my brain fogs gone, but I have worse spasms. at first you couldn't see most of my tics and spasms, now they are more powerful and painful and actually quite visible. but of course the medical community will never admit the drug caused this, they'll keep trying to say you had another condition and just didn't notice it, and thats why it changes, despite that everything started with the drug at the exact time you took it. And then they'll send you on a wild goose chase trying to get diagnosed until you're drained of all your energy, funds, resources, and remaining health.  I had one doc tell me when I came in and told him what happened the second day I was on the drug that he had to test me for all kinds of diseases first because they were the most common to cause those symptoms (like parkinsons, low vitamin d, an exhaustive list). Despite me reiterating the precise timing when the symptoms started was when I took the drug and that other people had the same experiences and I never had any symptoms before, he insisted he "doubted the drug would cause it, but he would keep an open mind" (which as awful as it was, was better than the other doctors who denied it was happening altogether.) Its a racket. a complete setup. they know whats going on. and they know we cant do anything without a diagnosis. so they play dumb to keep us subdued and unable to fight back. they dont want us to get better or get justice. they want to be able to avoid accountability.

      As for giving up, Heck I want to kill myself all the time. But I also am scared of dying and want to live out the rest of my life. It makes for a constant internal struggle- I know I will never be normal again, and that makes living kind of not worth it, but then again, I would be equally angry with not existing anymore because those f**kers made my life so awful it drove me to kill myself. I cry a lot.

      But the way I see it is as least if I stay angry, I am not giving in. I am not accepting my fate. Maybe I can still change something.

    • Posted

      Well, Kris11713, I don’t know if it gets worse but I absolutely believe it evolves into new symptoms. Basically now that I read back my comment I think it’s the same as you said. I’ve been having new and terrible symptoms that could be due to the medication I have to help TD! Go figure. I will be on new meds this week. My neurologist said it’s supposed to make things better. I’ll believe it when I experience it. If you want to know the name of meds I take simply ask I’ll be happy to tell you.
    • Posted

      Yes, Lucie, tell me names of drugs from neurologist.  For instance, Amantadine is an anti-cholinergic.  Did you see my msg to Katie ?
    • Posted

      Kris, i took Xenazine for three years up until this morning. Right now I’m on Austedo. I don’t know the specifics, my husband is very knowledgeable about them. As of sleeping aid I take Lunesta. I’m also on different medication for something unrelated to TD. 
  • Posted

    Has anyone looked into BOTOX ?  I'm inclined to try it .... tomorrow, actually.

    Katie, do you have an idea of How to express our anger?  Also on Disability --- no, just retired now, so these should be my good days.  Bah Humbug ....  I could say worse.  I wonder what you said that admins deleted ?

    There are brain-fogging reasons to be skeptical of drugs used to treat TD ---- a class of drugs known as anticholinergics and many others with anti-cholinergic effects.  One won't hurt you, but used in combo w/ several others will cause dementia symptoms.  It happened to me.

    I found a long list of them; many are over the counter remedies ... like pills to sleep or to stop diarrhea.  Xanax is one.

    I'm going to go look up my muscle relaxant Baclofen right now.

    later.

    • Posted

      I don't want to express it. I want change.  I want to demand it. I want to stop having a reason to be angry. What can we do to make them help us? I'm thinking activism: protests, showing up on talk shows, anything to call attention to what they've done. I didn't make this post to start a therapy group, I want to make our cause known and bring it out of the shadows of expressing emotions and learning how to cope. I want something done about it. I want them to fix us.

    • Posted

      I mean, not that we can't get therapy along the way, I'm all for us all venting and getting support.

    • Posted

      for starters, I'm thinking, we deserve to know exactly how that drug damaged our brain, what it changed, and not just a guestimate hypothesis that hasn't been really looked into or validated. They say it caused us to be over sensitive to dopamine, but how does that explain the brain fog? the systematic changes over time? The symptoms that mimic TBIs? There is something bigger that was done here, and we need/deserve to know what. That is the first step to really fixing us, not managing or covering up symptoms. We need to know what they did to us, and exactly what damage was done to which parts of our brain. How do we pressure the medical community into researching this, in a way that benefits us, not them? Social shame is one of them, if we get enough people to protest what happened, to write articles about it, to make the public aware. Everyone cares about cancer. Thats why there's so much research. How do we get people to care, to call them to action?

    • Posted

      Katie,  You call "them" the "medical community."  I had been thinking pharmaceuticals, but it was a well-meaning, but neglectful doctor who gave me the drugs.  So far, though, we do not have a common drug or even the diagnosis for which drugs were perscribed.

      The anti-psychotics were used decades ago;  I suspect few doctors today have witnessed what happened to patients in those "asylums."  My doctor told me (later of course) that the newer drugs were not as likely to cause tar dive dyskinesia.  He failed to monitor me closely enough .... though I saw him often .... such that other people I knew saw my strange movements long before he did.  Of course, I didn't know what to look for   what was possible etc.  I had taken Seroquel, Trazadone and others before Geode and I had no idea such permanent damage could be done to me.

      I am not even slightly psychotic, but doctor said these drugs might help with my relentless and nearly-untreatable depression.  And there was some benefit, for awhile.

      You have a good idea about published research, which must have begun before we were born.  I wonder if TD-causing drugs have a common ingredient  .... molecular structure, whatever.  Maybe I'll look up "history of tar dive dyskinesia"?

      Do you know how to start a web cite?  There have to be others.

      Oh, sorry to be so cynical, but I believe there is No Way to get (or pressure)  "the medical community into researching this, in a way that benefits us, not them."  quoting you.

      What are TBIs that you refer to?

      What is your background?  I mean we are not doctors or chemists or neurologists, etc.  I wonder where you are, too .... not that it matters.

      Kris  PS  have you thought of writing a book?

    • Posted

      well if there is no way out as you say, why do we even bother doing anything? Why don't we just kill ourselves now? Because I'm pretty damn sure a life with this condition is not worth living. If there's no way out on earth, then the only way out is suicide.

      Why are you even responding to this forum? You clearly don't want/believe in change, just want to advertise which drugs you're on and how you're managing it. Go find a forum about managing TD if you only want to talk about managing it and showing sympathy for "well meaning" (but responsible for your lifetime of hell) doctors. I started this forum for people who want to push for a real solution.

       

    • Posted

      I mean maybe you're okay with beliveing there is no way out, you're 68. But I have my whole life ahead of me. I can't live the rest of my life like this. I would rather die than accept that.

    • Posted

      Yeah, I'm old and I'd probably be angrier if I were as young as you.

      Right now, there is no way to repair the damage to brain.

      Katie, I worry for you and believe me I've been there;  I want you to list for yourself your reasons to not die .... not soon.  I've looked up "suicide" on I'net and all I got was some prevention hotline.  When I just wanted to talk about it, but not with a Hotline.

      Why don't you write to me and others about how TD damages your life and your anger?  And, list reasons to live on;  like who loves you?  I'm NO therapist; but I know anger and frustration at doctors, and sometimes at the entire human species!  Sorry admins keep censoring what you write.  It might help someone   and you.

    • Posted

      Kris do you have an email? If you are still willing to chat I think I would like to take you up on that. I know I haven't been on for some time; it got to hard for me to think about for a while. Sometimes I can't even think or talk about this stuff because the reality becomes too painful. I have to go into a sort of state of denial to be ok with existing for a couple of months.

      You keep saying there's no way out;  There's no way to repair the damage brain. It’s so depressing to hear the actual words. I know that it’s true and it’s one of the reasons I want to kill myself all the time. The one hope I have that keeps me going is the thought that my reward is that one day I’m gonna be normal again. I’m gonna wake up not be in pain. I’m gonna get sick or stressed out and not have a response from my body that’s ten times worse. I’m gonna have a boyfriend and I’m gonna be able to lay next to him and not be punished for it. That’s honestly the worst. It’s as if I get close to someone and someone presses an electric shock button, like “bad dog”. I’m bad for being loved. That’s what my body says. How can I stare into a future where five years down the road, ten, twenty, indefinitely, that’s what I have to look forward to? Punishment for existing. For being human. Every birthday? Every christmas? Every day I come home from work and there’s a million problems. Oh and I have to rest because my TD. My arms hurt cuz my TD. I can’t function or I’m late on an assignment cuz I was too depressed about my TD.

      I'm saying they have an obligation to look for a way to repair it, until it's found.  There should be people right now, doing everything they can to figure out exactly how they damaged us. They don't even know what they did. They should. I need for them to find a way to fix it. It’s my only hope. I can’t accept this as my normal. Why would I fight to live in a world that doesn’t think I deserve to be normal? That I can just ignore this and be fine? A world where my pain is minimalized and people don’t care what they do to others? I want justice.  I want justice for us. I want the people who did this to be locked in jail for what they did. People go to jail for committing torture. People should go to jail for programming our bodies to torture themselves forever. It's the same thing. Torture is torture. But more than jail, I want them to do something to make my life better. I want restorative justice. I want my life and my brain to be restored. They owe it to us. And we shouldn’t have to ask for it. If a pilot crashed a plane into a house, they would be expected to pay the damages. If a plumber broke your toilet and flooded your house instead of fixing it, they would be expected to pay the damages. If you took someone’s life, you would be expected to go to jail. Well they took my life. They took all the vibrancy from it, my ability to work and support myself properly, my ability to be happy since I’m always fighting pain.

      But it’s useless right? I mean they’ll never find a way to fix my brain before I die. They don’t even care to try. I mean to think otherwise is naiive, nuts. What hope do I have then? I really just wanna off myself. Finish what they started. They just left me here, to deal with it alone, after all. It really is the only way out. I just can’t picture going 50 more years like this, no matter how many good things there are in my life. At some point you just get tired of temporary distractions and you want something more permanent, and there is no permanent solution that involves me continuing to exist. I need a permanent fix and I need it now.

       

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