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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by alienatari on July 7, 2005, at 21:54:58
What has it been, a week, not even? And my TD is back and it is annoying me plus it hurts my mouth :(
What should I do? I really dont want to be on this drug.
I really dont want to take antipsychotics. Even if I do have a psychotic disorder.
I really dont know :(
Any suggestions? I'm still very depressed, its not like the zyprexa has taken away my depression. Its not really doing me anything so I dont know.
Any suggestions I would appreciate. Thank you and take care
Chris :(
Posted by iforgotmypassword on July 7, 2005, at 23:20:18
In reply to Tardive Dyskinesia from Zyprexa... AGAIN!, posted by alienatari on July 7, 2005, at 21:54:58
:( i'm sorry to hear this, i hope it resolves quickly... i seem to remember pain in mouth as well for some reason. i'm pretty sure it was zyprexa. god, i really wish there was a good way we could know what these side effects mean.
Posted by xbunny on July 8, 2005, at 6:02:43
In reply to Tardive Dyskinesia from Zyprexa... AGAIN!, posted by alienatari on July 7, 2005, at 21:54:58
> What has it been, a week, not even? And my TD is back and it is annoying me plus it hurts my mouth :(
>
> What should I do? I really dont want to be on this drug.
>
Probably not any help sorry but are your symptoms TD or EPS (muscle clenching, twitching, shaking etc). For EPS you might be able to take procyclidine or similar drugs and see if that helps it. Im not sure of whether taking these drugs with atypicals is ok so hopefully someone will correct me if Im wrong.> I really dont want to take antipsychotics. Even if I do have a psychotic disorder.
Sorry you have found you require antipsychotics. For me it was a bewildering and difficult thing to come to terms with. It took me several years before I could make myself take antipsychotics on any kind of a regular basis. Again probably not much help but I have been taking them for a long time now and, despite many ups and downs, these days I am very well and barely notice them anymore. Finding the right drug(s) can be difficult and there are many as well as horrible side effects. In my opinion however compared to untreated psychosis they are the lesser evil.
Buns
Posted by ed_uk on July 8, 2005, at 14:04:16
In reply to Tardive Dyskinesia from Zyprexa... AGAIN!, posted by alienatari on July 7, 2005, at 21:54:58
Hi Ali,
I'll reply in my email :-)
~Ed xx
Posted by med_empowered on July 8, 2005, at 17:54:09
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN! » alienatari, posted by ed_uk on July 8, 2005, at 14:04:16
hey! Do you have TD or EPS? Either way, really, my frist reaction would be to get off the Zyprexa and try something else. Is an anti-psychotic absolutely necessary for your condition(s)? If you look to more alternative mental health practices, you'll find docs who either do without antipsychotics completely or use extremely low doses of them, often on a limited (rather than continuous) basis....so, you might be asked to take an antipsychotic for a month or two, and then be slowly tapered off. Just a thought. Aside from that...Cogentin is the old school standard for EPS...I've heard of it being used with Risperdal, but I dont know if its Zyprexa-compatible. Propranolol and benzodiazpenes are also useful for EPS, but full-blow TD is best managed by withdrawal of antipsychotics. Anti-oxidants (Vitamins E, C, the B-Complex, Alpha Lipoic Acid, Coenzyme Q10, Selenium) *may* help treat/prevent TD, since some believe its caused by oxidation in the brain caused by neuroleptics (the anti-oxidants would theoretically mop these up)...its certainly worht trying. Good luck!
Posted by Phillipa on July 8, 2005, at 19:15:57
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by med_empowered on July 8, 2005, at 17:54:09
Chris, I know Ed will help. Feel better. Fondly Phillipa
Posted by Sebastian on July 8, 2005, at 19:44:25
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN! » alienatari, posted by xbunny on July 8, 2005, at 6:02:43
I only took AP's for a while because they were the expensive ones, I figured they must be better. Think I was right I don't find SSRI's that great, even though I take them.
Posted by Sebastian on July 8, 2005, at 19:49:28
In reply to Tardive Dyskinesia from Zyprexa... AGAIN!, posted by alienatari on July 7, 2005, at 21:54:58
I think you should quit zyprexa and try some thing else. No point in taking a drug you don't like.
Posted by yxibow on July 8, 2005, at 21:41:51
In reply to Tardive Dyskinesia from Zyprexa... AGAIN!, posted by alienatari on July 7, 2005, at 21:54:58
> What has it been, a week, not even? And my TD is back and it is annoying me plus it hurts my mouth :(
I've had facial fasciculations for several years on Seroquel, I can concur with feelings around the mouth. But they've been identified consistently as EPS. They come and go sporadically through the day or week but they dont last long.One characteristic that separates TD from EPS is that usually one is not aware of the disorder unless someone points this out. (this is information from several TD experts).
How frequent does the troublesome symptoms of the mouth occur and how long do they last ? I'm not discounting that you may or may not have TD, but there is a very equal chance that it is EPS if it has only been a week. TD, tardive, almost always means "late in treatment". Everyone varies of course, but that is generally the case and especially with newer atypicals.
There is always Seroquel and if it is really TD, and your doctor can make a case for it for your insurance, there is Clozaril. Its almost the same as Zyprexa chemically but the compound is vastly different.
I hope you feel better and find something right for you.
Posted by med_empowered on July 9, 2005, at 5:48:03
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by yxibow on July 8, 2005, at 21:41:51
hey! I don't know your situation exactly, but I would like to offer some advice: if you think you may have true TD (not simply EPS), you may want to ask a DIFFERENT doctor to diagnose the condition. Some of the most expensive lawsuits psychiatrists have faced have dealt with TD. From the late 1970s, through the early 1990s, and into the present era with heavy use of atypicals, lawsuits regarding TD have cost psychiatrists millions upon millions of dollars (one Risperdal lawsuit I recently read about ended in a jury award of over $3 Million; the woman had severe tardive dyskinesia and tardive dystonia and was unable to walk, and had difficulty eating, swallowing, and breathing). I'm not saying "sue your doctor," but I am saying that psychiatrists have a really, really BAD history of diagnosing TD, especially when dealing with their own patients and financial liability. If you do in fact have TD, the doctor who makes the diagnosis should be able to do what he/she can for treatment and/or refer you to others for help. Since this doctor has no vested interest in your diagnosis, the odds of an accurate diagnosis are higher (still, psychiatrists tend to miss even flagrant TD all too often; sometimes, you're better off going to a neurologist, or even a GP). If you do have TD, you could try Clozaril...however, even Clozaril has had some EPS/TD associated with it, along with NMS, heavy sedation, drooling, and weight gain. Personally, my advice would be to find a doc willing to treat whatever it is you are dealing with WITHOUT neuroleptics. The only sure-fire way to avoid TD/EPS is to avoid antipsychotics entirely. The big difference between all the atypicals, including clozaril, and the old antipsychotics seems to be the frequency and severity of side effects such as EPS and TD...the new drugs still cause problems, but seem to do so less often and to a more modest extent. That said, NMS rates with the atypicals is probably as high as with the old drugs.
Posted by yxibow on July 9, 2005, at 15:16:32
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by med_empowered on July 9, 2005, at 5:48:03
> hey! I don't know your situation exactly, but I >would like to offer some advice: if you think you >may have true TD (not simply EPS), you may want >to ask a DIFFERENT doctor to diagnose the >condition. Some of the most expensive lawsuits >psychiatrists have faced have dealt with TD.
..management of antipsychotic medications and their usefulness is a difficult balance, but at the end of the day, sans complete psychosis, it is informed consent to take them despite their potential consequences. It's an unfortunate balance, one that I or anyone who takes them has to take into account :/
> I'm not saying "sue your doctor," but I am >saying that psychiatrists have a really, really >BAD history of diagnosing TD, especially when >dealing with their own patients and financial >liability.
Actually I would believe that a psychiatrist should have a good, if not overprotective sense of diagnosing TD considering the high costs of malpractice insurance. But diagnosing TD is subjective, yet at times crude and simple -- most often done with the AIMS (Abnormal Involuntary Movement Scale). A doctor who doesn't perform this at some reasonable interval whether interactively or observationally is not looking for TD enough.
>If you do in fact have TD, the doctor who makes >the diagnosis should be able to do what he/she >can for treatment and/or refer you to others for >help.
There is nothing wrong with a second opinion (I've been there too).
>(still, psychiatrists tend to miss even flagrant >TD all too often; sometimes, you're better off >going to a neurologist, or even a GP).
This I would say is a subjective opinion, I can't refute or not.
>If you do have TD, you could try >Clozaril...however, even Clozaril has had some >EPS/TD associated with it, along with NMS, heavy >sedation, drooling, and weight gain.
This I almost completely agree with... Clozaril has its place but with socially unpleasant side effects, almost zero TD, but most seriously a 2% chance of agranulocytosis (low white blood count).
>Personally, my advice would be to find a doc >willing to treat whatever it is you are dealing >with WITHOUT neuroleptics. The only sure-fire way >to avoid TD/EPS is to avoid antipsychotics >entirely.
It's hard to treat a florid psychotic disorder without neuroleptics unfortunately, with the possible exception of Amoxapine which is a neuroleptic in disguise. But I do not know the patients full dx.
>The big difference between all the atypicals, >including clozaril, and the old antipsychotics >seems to be the frequency and severity of side >effects such as EPS and TD...
As so far shown, definately so, especially with the newest of the atypicals.
Posted by med_empowered on July 9, 2005, at 20:56:03
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by yxibow on July 9, 2005, at 15:16:32
OK...about the post...if you read the psychiatric literature, starting in the 80s, there was a HUGE concern over litigation. Part of the problem is that, historically, shrinks in the US have kind of half-*ssed it when it comes to TD. Serentil and Thorazine hit the US market in 1954, the first mentions of the TD syndrome were in the international literature by the end of the 1950s, and by the 1960s the "Thorazine Shuffle" was being noticed by anyone involved with those receiving neuroleptics. In 1968, the FDA finally required that neuroleptics come with a TD-risk warning. However, it wasn't until 1980 that the APA organized the TD task force to actually study the phenomenom. With the introduction of atypicals, shrinks have, by and large, once again taken the "TD: dont ask, dont tell" policy as their professional MO. As for neuroleptic-free treatment of psychotic disorders...everyone, I'm sure, has heard of Mosher's Soteria House. There isn't one in the US, but there is a Soteria-style facility in Germany, and one may open in Alaska in the next couple years. Even neuroleptic pioneers such as Deniker, who was heavily involved in the early phase of Thorazine research and development, have come to take a more critical view of antipsychotics. Deniker's essay, "Should the neuroleptics be withdrawn?" is a striking example of this. Furthermore, if you read actual studies regarding the prevalence of TD, you find that many psychiatrists--from the young interns to the old practitioners--tend to miss the signs of TD, especially in earlier stages. Finally, I find your critique of Clozaril--as highly effective but having "socially undersirable consequences"--to reflect an utter lack of empathy for those who have psychotic disorders. Having interacted with people on Clozaril, I can tell you that the "socially undesirable" side effects make life on the Ultimate Neuroleptic unbearable and undesirable for many people. Yes, the psychosis is controlled, but spontaneity, humor, introspection, wit, and personality also find themselves effectively "controlled" during treatment with Clozaril and many other neuroleptics.
Posted by yxibow on July 10, 2005, at 2:14:34
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by med_empowered on July 9, 2005, at 20:56:03
> Serentil and Thorazine hit the US market in >1954, the first mentions of the TD syndrome were >in the international literature by the end of the >1950s, and by the 1960s the "Thorazine Shuffle" >was being noticed by anyone involved with those >receiving neuroleptics.
I do not deny this -- we didn't know -- the first neuroleptic actually was reserpine, by accident, I believe. Its an unfortunate fact that the most powerful medications we have for individuals with serious psychotic disorders come with the price of potential TD, especially the earliest medications.
This is what I meant by informed consent, or as informed as one can be, given the conundrum that an individual in serious danger of harming themselves or others may not technically fit an "informed consent" state until stabilised.
Its a catch 22 for all antipsychotics, and is still a state where we are in the development of such drugs -- 'the operation was successful but the patient died'
> In 1968, the FDA finally required that >neuroleptics come with a TD-risk warning. However, it wasn't until 1980 that the APA organized the TD task force to actually study the phenomenom. With the introduction of atypicals, shrinks have, by and large, once again taken the "TD: dont ask, dont tell" policy as their professional MO.This, while I don't want to get into an argumentative state I do believe is absolute rubbish. There is every indication in todays practice, especially with the introduction of atypicals, that the least dosage required is followed. Still some individuals may benefit only from higher dosages which may put them at risk of TD. It is a lumping together of all psychiatrists to say that there is some nefarious plan or callous disregard of their patients. There are indeed bad psychiatrists. But if one is to look closer at those who have entered the field, be it psychiatry or psychology, one may very well discover that they went into it for very personal reasons -- family members, friends, those who affected them enough with the suffering of biochemical disorders that they felt a calling.
I don't suffer from a psychotic disorder but a complex anxiety driven one which would take quite a while to explain -- again, with informed consent I take Seroquel because it betters my life, one that was ripped away from me several years ago. But I know, that even with peer reviewed studies such as a British one that one could extrapolate the likelyhood of TD with quietapine is on the order of 1/4% per year give or take. Do I risk TD or do I want to manage my life the best I can? Its a hard one to take, one that scares many away from promising treatment, though even TD can be reversible in at least 30% of the time and made no worse in another 30%.
> As for neuroleptic-free treatment of psychotic >disorders...everyone, I'm sure, has heard of >Mosher's Soteria House.I cannot comment on alternative practices in the realm of psychiatric drug discussion. There may be visionaries who try psychotherapeutic methods, and for some it may succeed. For some who suffer from schizophreniform disorders, an "awakening" in later life sometimes occurs where medication treatment is no longer necessary. This is probable in the case of John Nash ('Beautiful Mind').
>Finally, I find your critique of Clozaril--as >highly effective but having "socially >undersirable consequences"--to reflect an utter >lack of empathy for those who have psychotic >disorders.Rather I was trying to use the most neutral and succinct vocabulary I could possibly use to follow the ethos of this forum. Socially undesirable -- I meant in the most painful sense for the sufferer of a psychotic disorder. I could have gone on to describe the littany of effects that Clozaril can have on an individual but I chose to summarise it in that way. If it was found to be offensive, it was meant in an entirely different fashion I assure you, just as the effects of TD can make a sufferer feel shunned from society, the side effects of medication, such as in the treatment of cancer, can also do so. I believe the statement was taken too literally but I retract how it was phrased.
>Yes, the psychosis is controlled, but >spontaneity, humor, introspection, wit, and >personality also find themselves effectively >"controlled" during treatment with Clozaril and >many other neuroleptics.This is known as "blunting" and is common among virtually all neuroleptics, and which I suffer to a degree from Seroquel as well. So I can and certainly do sympathise with this. The "there" isnt quite "there". And even to a lesser degree this can occur with SSRIs.
But are we to deny patients in desperate need of some collectivity of their daily lives, or are we to admit, yes, we've come a long way since 1950, but we have many years to go. And in the here and now, we use what we can. I only wish we had more.
Posted by SLS on July 10, 2005, at 8:24:31
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by yxibow on July 8, 2005, at 21:41:51
> > What has it been, a week, not even? And my TD is back and it is annoying me plus it hurts my mouth :(
Quite wrongly, I have usually avoided posting along threads where TD or akathisia are the dominant topics. People are usually absolutely convinced that they are suffering these things when they really are not. I guess I don't like to invalidate people's feelings. Besides, what if I'm wrong? I would be suggesting that someone continue to take the offending drug and perhaps make things worse. It really should be the doctor that makes the differential diagnosis between EPS dystonia and TD and between anxiety and akathisia.
I agree with yxibow.
I think there is simply some confusion as to what acute EPS dystonic reactions are versus the more chronic and latent tardive dyskinesia. This is, of course, an important distinction. TD is usually irreversible, and does not disappear when the drug is discontinued.
This a complex area that I don't feel qualified to comment on.
- Scott
Posted by ed_uk on July 10, 2005, at 10:58:13
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by SLS on July 10, 2005, at 8:24:31
Hi everyone,
I hope alienatari doesn't mind me speaking on his behalf! Alien - correct me if I anything which I say is incorrect :-)
AFAIK, alienatari developed a TD-like disorder while taking amisulpride (Solian) - it consisted of abnormal involuntary movements of the jaw. It persisted for a few months after discontinuation and then remitted. He later developed similar symptoms while taking Zyprexa. Again, the symptoms decreased significantly after several months without Zyprexa. Alien has also suffered from acute EPS in the past, particularly dystonia and akathisia, which responded to Cogentin.
Alienatari has taken all the atypical APs available in Australia apart from clozapine. He has taken a few typical APs as well. He has also taken most (all?) of the available ADs apart from Nardil.
Since alien suffers EPS on Seroquel and Zyprexa, as well as the other APs, clozapine might be useful if his psychosis gets worse.
~Ed
Posted by SLS on July 10, 2005, at 11:28:43
In reply to Re: Tardive Dyskinesia from Zyprexa... AGAIN!, posted by ed_uk on July 10, 2005, at 10:58:13
Again, I am no expert on TD, but I would be reluctant to return to anything that produced orofacial dyskinisias. Clozaril probably makes the most sense.
- Scott
This is the end of the thread.
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