HELP ME OR NOT

[verna2]

PRetty please a list of all the meds that can cause TD.
No websites; they ask what med until it is too late.....
I know that tramadol, valium, phenorbabital, trazadone, redomex plaquenil...etc    BUT, I took them.
ender@ pandora.be

[Ramsden5044]

Your strength is incredible and I admire your courage. I have been damaged by an Ssri and I have a rare adverse affect from it called PGAD. I am trying to advocate for the people with this disorder from Ssri's but I don't know where to start. If you would like to know what i have you can google PGAD and how they think it is related to restless legs and therefore might be a movement disorder or a dopamine imbalance in the brain. It is devastating and has ruined the quality of my life and the sad thing is like TD there is no cure and no effective treatment for the PGAD if they would study it and if doctors would recognize that it happens than maybe we could get some answers. I know it has to have something to do with dopamine as I also got restless legs with it. It all happened while on an SSRI and got worse when I quit the SSRI.  

[ILADVOCATE]

I try to only use natural remedies that are of scientific value but I do research. I'll look up the book. Sounds interesting. There has been some research into medical marijuana and efforts to isolate the active compounds and that could be worthwhile. I just don't want the personality altering effects of the drug. Please don't think that you don't want to live. Whenever I think that even as I did last night not on my own but becauase the Tizanidine (which I am going to have the neurologist titrate me off) gave me feelings of depression and suicidal ideations (as had the Clonidine which its clinically related to) I say to myself "I want to live so I can ensure this doesn't happen to other people. I want to let other people know. I want educate other people. I want to empower other people". Then it stops. Everytime. Even with a medication that brought it on. Everyone can contribute in their own way. If you recover with the rhodiola post your experience. Or any other natural remedy or medication in study. Or if you find out that people have developed tardive dyskinesia and its not on warning labels on the medications that caused it, that's something right there to fight against. I always turn feelings of negativity and loss into advocacy and empowerment. Then the constructive action I take negates the destructive thoughts. I put an entry on the most common online dictionary on tardive psychosis. My psychiatrist will back that up although he might not have before. That result and the ones here are coming up first in google searches as well as my posts here. If I weren't around that never would have happenned. And now I have the support of the people who prescribed me the medications that caused it. I educated them and am advocating with them now. I am not the only one going through it and I can work to help other people who are, work to help educate the public and work within the system to identify means of treating it and developing new medications that don't cause it. I have to be a part of that. That's why I'm around. You might understand it in that regard.

[verna2]

Hello,You should have spoken and I am sure that you could now. I don't know if you read Kevin Trudeau's book :More Natural Cures Revealed....
I started it and I do't know where it went to BUT  he is more convincing than these people who take soooo much money to make you worse.

If I had known then what I know now; I think that I would have let them kill me faster.....with a gun? Even marihuana would have helped with the pain........
To tell you the truth, who wants to live like me?

[ILADVOCATE]

As I said in my post anyone who has a reason to feel an individual practiticioner or facility has committed a medical error should file a complaint. As for specific medications it depends on whether a doctor uses them because of the fact that they trust that are the safest or most effective medication in that class or because they recieved promotional literature from the company. I would hope most doctors are ethical. You should note that because of lawsuits that every antipsychotic has warning boxed labels stating that they can cause tardive dyskinesia and diabetes. I do feel bad that I did not file a complaint against the psychiatric hospital in 1991 (I will not name it for confidentiality reasons) where they let me go into a dystonic reaction two days in a row because they did not have anti-cholinergics available immediately (I recieved a shot of Benadryl hours later, I could have died) and when they told my mother about the long term side effects of antipsychotics said "he may get tremors". As you know and my psychiatrist has told me tardive dyskinesia can be masked by the antipsychotics that cause it and emerge at any time and reach extreme levels of severity. But when I went back to that hospital voluntarily to go on Clozaril (voluntarily, outpatient) I asked them about making sure I didn't get akathesia and they said "Cogentin is on hand at any time". That's because they had changed their practice because people had filled a complaint and I was not treated badly there at all. I would feel safe going there again. And although this is extremely rare, I did get akathesia from Clozaril and need a side effect pill and was given it. The only thing that I felt bad about was that I did not speak out at the time. There are ways to file a complaint within the system to have issues addressed and to fight for change on a large scale level. Now that the antipsychotics have warning labels letting people know about tardive dyskinisesia and all ethical psychiatrists tell their consumers that its a risk, that part has been accomplished. But people some people need antipsychotics and that is what's available. That's why we need to advocate to have better medications come out, one class of antipsychotics I'm on which are the glutamate antagonists. You took other forms of medication and I would hope newer ones are available that don't cause tardive and will replace the old. But it doesn't happen by itself. And to have better treatments for tardive dyskinesia identified and put into clinical practice. All of this is going to take some large scale advocacy as I've been doing within the system. And it is acheivable. If you find the rhodiola to be helpful let us know how. Because if they developed that natural remedy into a medication it would benefit everyone but they need to know more. Knowledge is empowerment and strength as well as education and advocacy. We can share our experiences and let people, including neurologists who may not know about rhodiola, know how we benefitted and then they are more likely to consider using it. That's one step right there in the right direction.

[verna2]

No, I am not commenting on your knowledge ,help, position, NO...
I am commenting on all those doctors who give out meds to enrich their pockets, it helps them economically and they son't know the harm that they cause their patients....as much as I respect ans trust some of them; Others should be LYNCHED

[ILADVOCATE]

I hope that you are not commenting on what I posted. I have only posted about treatment that will help people. The rhodiola helped me with my tardive conditions. I hope you can find it to be of help. The glycine is an antipsychotic that is a glutamate antagonist, a class of medications that do not cause tardive dyskinesia. Doctors are people. They need to be informed too. What an average physician might not know a high level researcher would. I have obtained factual information from the FDA research studies and obtained treatments out of study with the help of my psychopharmocologist. I am getting the information out there through advocacy and awareness. I advocate to make a difference. There are new medications in study and once they are out there, due to research and yes I would say due to advocates such as myself no one will ever get tardive dyskinesia again. It is my life's work.

[verna2]

What's the use of all your sympathies and empathies: are you aware that people are getting worse instead than better? Doctors don't know much and even though they think of their pockets; I am sure that they would treat their family differently.

I am loosing my respect to all these websites that are supposed to help and all they dis turn in circles... I can do that by myself.
Verna 2

[ILADVOCATE]

Yes I'm aware of all this but one thing that's important to know is new antipsychotics in study that don't cause tardive dyskinesia that don't have the severe side effects of Clozaril and promote a fuller recovery. I was tried on Clozaril and could not tolerate the side effects which were severe. My psychopharmocologist monitored me taking glycine outside of a controlled study (the study is here):
http://www.schizophrenia.com/research/javitt.htm
He approved this post and will be writing up the results in a psychiatric journal
There is also a new antipsychotic that is a glutamate antagonist that will be in Phase III
study next year:http://www.nytimes.com/2007/09/03/business/03drug.html?_r=1&oref=slogin
As my psychiatrist could confirm I have made a full mental recovery from glycine and once these medications are available, in not causing tardive conditions and diabetes they will be beneficial to anyone who needs them. As for the tardive conditions, I am on Klonopin, Flexaril, Skelaxin, Methocarb and Tizanidine. In addition, after a presentation from a researcher from Columbia I started the natural rhemedy rhodiola and found it to be of great help. Additionally, I am in a study for tardive psychosis though I know that condition hasn't been confirmed yet ,my psychopharmocologist is aware that I may meet the criteria for it. He uses standard treatment and methodology and is a respected member of the APA and once these studies are published I'll be happy to provide links.

[dr_simran]

Hello verna2,
TD has been observed after exposure to various substances eg, L-dopa, amphetamine, metoclopramide, the prototype TD is the orofacial ie, buccolingual, masticatory, hyperkinesias induced by neuroleptics antipsychotic dopamine D2-receptor blockers. People with other movement disorders and those with diabetes mellitus are at increased risk of TD.
Primary prevention of TD by using the lowest effective dose of neuroleptic for the shortest period of time is recommended. When TD is diagnosed, reduce or discontinue the causative agent if possible. The risk of a permanent movement disorder must be weighed against the risks of exacerbating psychosis. In addition, TD may initially worsen after discontinuing neuroleptics
• Atypical neuroleptics may control psychosis while reducing the risk of TD. While traditional neuroleptics primarily block D2 receptors, atypical neuroleptics bind variably to dopaminergic, serotonergic, alpha-adrenergic, histaminic, and muscarinic receptors.
o In particular, clozapine has been recommended as treatment for patients with TD who require antipsychotics. Clozapine is one of the most effective atypical neuroleptics for treatment-refractory schizophrenia. Although clozapine has been associated with TD (Ertugrul and Demir, 2005), the incidence of TD with this and other atypical agents appears markedly less than that of traditional neuroleptics. The benefits of clozapine may result from its affinity for the D4 receptor. However, risperidone and clozapine may be ineffective in treating negative and positive symptoms in some patients. Treatment with clozapine requires regular hematologic evaluation to avoid fatal agranulocytosis.
• Other anecdotal treatments include vitamin E, levodopa, benzodiazepines, botulinum toxin, reserpine, tetrabenazine, and dopamine-depleting agents. Ondansetron, a selective 5-hydroxytryptamine-3 antagonist, has helped some individuals with TD. Discontinuation of treatment with anticholinergics may relieve TD. A controversial strategy to treat TD is continuing and/or increasing the dose of the dopamine antagonist.
• Tardive blepharospasm can respond favorably to reduction or cessation of dopamine antagonists. Individuals who must be treated with neuroleptics often respond favorably to atypical neuroleptics. Additional treatments to consider include anticholinergics, dopamine-depleting agents, benzodiazepines, clozapine, and botulinum toxin.
• For tardive tics, remove the causative neuroleptic if possible. If the patient cannot tolerate absence of the neuroleptic, substitute an atypical neuroleptic. Pimozide, clonidine, and haloperidol can be helpful in some patients with tardive tics.
• Clozapine has treated tardive tremor successfully. Propanolol is useful for tardive akathisia.
• Clonazepam has been reported to successfully alleviate the symptoms of TD and spontaneous oral dyskinesia.
Refer http://www.emedicine.com/neuro/TOPIC362.HTM
Best