Antipsychotic Medications Gave Me TD, A Real Brain Disorder
I have a brain disorder. A real brain disorder. It’s not made up. It's called Tardive Dyskinesia and it was caused by antipsychotic medications that I was prescribed to help control my bipolar disorder. And the kicker? I don’t believe I ever had bipolar disorder. I haven’t been depressed, suicidal, manic, psychotic or anything but happy since I got off my bipolar medications. It was the best decision I ever made in my life. I just wish I had made it a little sooner.
Didn't Realize or Recognize Signs of TD
[caption id="attachment_397" align="alignleft" width="250" caption="Cristina Fender taking antipsychotic medications for bipolar disorder (left) and after stopping medications (right)"][/caption]
In 2009, I began having tardive dyskinesia symptoms, a serious side-effect of the antipsychotic medications I had been prescribed. My hand moved at night of it’s own accord. I thought it was stress and anxiety. I had no idea what it was. It hurt, but I ignored it.
After a year of blogging about living with bipolar (Bipolar Vida), I went to college full-time. I completely failed all my classes two semesters in a row. My doctor’s response was to put me on more bipolar medications. After failing the second semester, I declared war on all the medications that weren’t making a shred of difference to my mental health and I stopped taking them. That was in the spring of 2011.
Diagnosed with Tardive Dyskinesia
Late last year, I finally learned what was wrong with me. The hand, arm, neck, and leg movements resembled dystonia and Parkinson’s. I went to over ten doctors before one could finally point me in the right direction. Several doctors told me that I had a brain disorder, but none of them could pinpoint exactly what it was and how they could help me. I was told that it was "all in my head" by half of those doctors. I knew they just didn’t really know what it was, but just because they weren’t sure, did it mean it was okay to make me feel inadequate? I finally received a correct diagnosis of tardive dyskinesia.
Antipsychotics have caused tardive dyskinesia in over 200,000 patients in the United States. And that’s a conservative number because many patients won’t even notice it and since most only get 15 minutes during a visit to see the psychiatrist, it's possible your doctor won’t notice it either.
I Never Thought It Would Happen To Me
Most patients suffer from tardive dyskinesia only a couple of years before it leaves their system. I’ve been suffering for four years and it’s progressing. There may come a time when I can no longer use my left hand and arm and when I will no longer be able to control and hide my TD symptoms from others.
After learning my diagnosis, I was so angry with myself. Why hadn’t I done more research on all of the side effects that were listed on those white leaflets that came with the medications? Oh, yeah, I know why. I never thought it would happen to me.
The drugs had made me so complacent that I never questioned my doctor.
Do you know what pharmaceuticals are derived from? Natural plants and toxic chemicals. Chemicals, in my opinion, that make you sicker than you ever were before you started taking them. For example, did you know that many antidepressants contain fluoride? Fluoride slowly, but surely poisons the brain and causes complacency. I was on antidepressants for most of my twenties and thirties. I can’t pinpoint that was the medication that sent me over the edge, but the possibility of being right is highly upsetting. It makes me wonder what other toxic chemicals are they putting in our mental health medications and it makes me sick to my stomach to think that most mental health patients have no idea what they’re ingesting.
Understand the Mental Health Medications You're Taking
Before you pop another pill in your mouth, ask yourself the question, “Do I really need this?”
I do not give this advice lightly. I spent over five years on antidepressants, several different antipsychotics, lithium, Ambien, and Xanax. I was a zombie. I was a shell of the person I was before I ever was on those medications. They numbed me, yes, but they also filled me with chemicals that caused the my brain disorder.
I no longer follow a doctor’s prescription. My treatment plans have been devised from my own meticulous research. I choose how I’m to heal my body. I’m not following along blindly like a good little complacent patient anymore. The only guinea pig I want to be is my own.
(ED. NOTE: This is the author's account of her personal experience and not medical advice. You should not stop taking medications on your own. Always consult your doctor about any medical or mental health concerns that you have.)
This blog was written by:
Cristina Fender started blogging in 2006. Her personal blog, "Raw Writing for the Real World of Bipolar Disorder", and her blog on HealthyPlace.com, "Bipolar Vida", won many awards, including being named “Top Patient Expert” and “Top Health Blog” by Organized Wisdom. Today, Cristina blogs at Guinea Pig about tardive dyskinesia and advocates for a more holistic approach to mental health. You can also connect with Cristina on Twitter and Facebook.
To be a guest author on the Your Mental Health Blog, go here.
Author, G. (2014, February 11). Antipsychotic Medications Gave Me TD, A Real Brain Disorder, HealthyPlace. Retrieved on 2023, June 3 from https://www.healthyplace.com/blogs/yourmentalhealth/2014/02/antipsychotic-medications-gave-me-td-a-real-brain-disorder
Author: Guest Author
What are the main antipsychotics most of you are referring to? If you don't mind my asking?
I know this is not a comment, But a question? I'm just Very interested to know??
Thank you for sharing your story with us. As a dr, my opinion is that the benefit of taking the medications outweighs the risk of side effects. Bipolar disease can make you dangerous for yourself and for your loved ones or the community. Yes, the medicines have side effects like all medicines, and yes they can be debilitating if they appear. Its hard to believe your dr didnt inform you about them, or what to look for and if he didnt thats a big mistake from his part. However i find the advice you give to people to stop using their medications, wrong, dangerous and irresponsible. Maybe u were misdiagnosed, thats a possibility, or you havent showed symptoms YET. Most medications take a while to clear your system, and maybe ur state or mind is better due to ur life situation . I havent examined you, i cant know for sure. What i do know is that somebody who goes to medical school for 6 years, residency training for 5 years and work with psychiatric patients for years is much more capable of advising you than a single individual patient who may or may not be seeing things clearly.
I guess my initial reaction to this article was anger. And the feeling that the article is a little bit irresponsible. Absolutely psych meds have brutal side effects (believe me I know) but mental illness also KILLS. It takes years to accept it is sort of a risk vs benefit situation. So to encouraging people to stop taking meds because they are full of poison is a bit extreme and in my opinion quite dangerous.
Also, the writer's proclamation that she never had anything wrong with her in the first place - ummm evil as the mental health system may seem I doubt doctors were just force feeding her drugs for the thrill or it. Usually they must identify a symptom or two. Also she says she's better than ever since stopping. That's is misleading as you can't just ditch these pills - if you're gonna stop you should taper under a doctor's care.
I want to be informed but next time write with a little more balance.
my daughter had TD too at age 12 when we took her off ADHD meds. Her shaking progressed to the point that she could not sit on the couch as she would fall off. A few hospital visits, a few shots of Cogentin, and she was finally diagnosed with TD. She had to be hospitalized for over a month until her symptoms and blood work were back to normal. This a very scary side effect from some meds and can be permanent if not dealt with immediately. We were fortunate that after a number of months her symptoms disappeared and she has remained this way for 7 years. However, she is very cautious about what meds she puts in her body now.
I was never as depressed taking antipsychotic and mood stabilizers for the last 3 years of my life as I am now. I am slowly weaning myself off them to avoid adverse reactions because my body has gotten so used to them. As far as I am concerned these medications have stolen my life. The antipsychotic in particular caused facial tics and other musular problems. They may have served an initial purpose to help me get over a difficult period but their prolonged use has made me depressed, unmotivated and completely ambivalent about my life in general. I have felt suicidal and self harmed while on these medications that were supposed to help me not hurt me and that is why I am no longer willing to stay on them. I want my life back!!!
my son is chemically sensitive and affected by his environment - perfume etc. Psychiatrists call this delusional therefore schizophrenia diagnosed. Forced injections have caused his weight to go from 11 stones to 18 stones in less than 2 years. He suffers severe abdominal pain daily (he is affected by chemicals in medication, has severe anxieties (didn't use to have) can't keep his legs still in bed, lost personality. I know he hasn't mental illness but psychiatrists won't listen.Now has dribbling incontinence. I am afraid for him. He is being made ill by forced medication. Psychiatrists won't admit to doing harm so won't stop. Both distraught.
It seems to me that the majority of people who are advocating going off of meds claim that they were misdiagnosed when they were put on meds- and are doing better without them. And I think that there is a lot of over diagnosis. This is a really serious problem. But what about the people who have "something." I'm not going to argue about what mental illness is right now. But what if you had several serious mood episodes that left you unable to function and your life at risk before you were ever put on meds? I just don't know to what extent the experiences of those who don't think that they were misdiagnosed can be compared to those who were- and to what extent our experiences will be the same or different. I do think that there is too much emphasis on medication- and way too much use of antipsychotics in particular- but I think some people benefit from meds.
I have been off medications since 2011. It's been two years and I haven't had any sign of mental illness. I do believe I was misdiagnosed and I believe there are thousands, if not millions, like me out there. Look at my before and after pics. Pictures such as those don't lie. I look so sick in the first and so healthy in the second.
I offered my story as a warning. Don't follow your doctor blindly. Do your research. HOWEVER, even if you do your research and ask questions there are still things about pharmaceuticals than are more dangerous than not taking them--things you just don't know about until people like me speak up.
I researched and blogged about bipolar disorder for five to six years. I know there are triggers and there's depression and suicidal thinking. I do not offer this informative story for glory. I offer it so others can benefit from my experiences.
I don't believe that pharmaceuticals are the way to go when there is so much research that points to more natural alternatives that can alleviate most bipolar symptoms. Cannabis oil is making great strides in brain tumors, anxiety and depression. Many states have legalized medical marijuana and the federal level is changing it's view on it's illegality. Research cannabis oil. It gives you all the efficacy of marijuana without the high. My suggestion is to find a holistic and more natural alternative to pharmaceuticals that make your brain better, not worse.
That is a scary thought , I have been on so many antidepressants and anxiety meds because I am married to a narcissist.Trying to divorce him is even scarier.
Something similar to this happened to my husband when he began taking Lipitor. He had taken Lithium and Thorazine for 37 years with no side effects and has a lived a healthy, successful life. He began taking Lipitor after a heart attack at 66 years old, and his hand began jerking and arm and was diagnosed with ParkinsonISM, until we did some research and found out that Lipitor can cause these symptoms. He went off the Lipitor and all his hand functions, etc. were returned completely. He had no lasting effects.
I am very concerned when I read articles that might encourage people who are ill to stop their medications. It sounds like this person may not have bipolar disorder at all, but most people who do have the illness, do need medication. Please do your own research and consult your own doctor. Sometimes the symptoms don't show up for a while and may mislead someone into thinking that they don't need the medication. If you do decide to go off your medication, please make sure you have someone close by to help monitor your situation. I am also a little concerned that we will hear back from this person in a couple of years saying that she crashed or had some type of psychotic experience. Take care of yourself.
I do take meds, I'd like to take less, but at this point in my life I don't think I could get off of them without taking a year or two off of work. So I've kind of accepted it. But I do worry a lot about TD. I did some searches of PubMed, and it seems that there is a least a partial oxidative component to it. In people, Ginko seems to have some of the best evidence for it. In rats- most of the antioxidents and resveratrol. So I'm taking my antioxidents. Plus my current doc actually checks me for involuntary movement (he is the first one who ever has). So hopefully I would catch anything early. But I do know that sometimes it is only when you reduce the dose that the movements develop because the drug is masking them. These are not benign drugs.
Something that has helped me find direction and protection is W.R.A.P. developed by Mary Ellen Copeland when she was on welfare with no where to turn. Google it. Wellness Recovery Action Plan. I have one, and I’m a certified facilitator of it. You organize all your wellness tools that work for you, figure which ones you have to do daily, look at your triggers and figure out action plans so they don’t make you feel so bad, examine how things look when they are breaking down and make action plans for that so things get better not worse, and also you create a crisis plan just in case, where you name everything that will happen, who will help,who will not, how long, where, when, etc… if you ever get hospitalized. Anyways it’s a lot of work but it is another tool I use to keep well and when it works I don't need as much medication.