Posted by yxibow on September 28, 2009, at 16:10:59
In reply to Geodon, TD, Effexor.....HELP!!, posted by delna on September 28, 2009, at 3:42:15
> Hi,
> I really need help and advice. I really don't trust psychiatrists anymore (with good reason). This is a bit long so I really appreciate it if you do manage to read it!!
>
> Background:
> -I have bipolar I (with disabling depressions and very rare mixed states)
> - I have terrible OCD (which can become psychotic)
> -I have severe fatigue/sleepiness (unless I am high)
>
> My problem is this; I was put on Geodon after every drug had failed to lift my depression and get me out of my own world (sitting in bed all day)
> It really worked like magic and for the first time ever in my life I felt normal- I even had a job and a life. It stimulated me (even though paradoxically it knocked me out at night and left me comatose)
> But then I developed severe pain on it and had to give it up. It turned out to be tardive pain syndrome (which no doctor picked out including 4 psychiatrists, 5 neurologists and 2 pain specialists). After trying every nerve pain killer, I was in fact going to have a pudendal nerve block and restart Geodon despite excruciating pain because it made me feel so good. It was by pure chance that I stumbled upon an article on tardive pain syndromes which i showed to my pdoc who agreed that this is what the pain was. So basically this means that atypical antipsychotics are out for me (because my brain is already sensitized and I am prone to full- fledged TD)I wouldn't completely write Clozaril off the list -- it may help your Tardive syndrome.
I am sorry you have this condition -- it is highly unusual and I believe a sign in psychiatry and neurology that TD itself manifests no pain, so pain syndromes are considered neuropathic and not TD.
It's something that has to be pointed out by other people also, and at least 1/3 of TD cases resolve themselves. 1/3 remain the same, and 1/3 may become worse.
However what you seem to have may fall into the Tardive Dystonia side of the spectrum, and that does have pain, but it has far more treatments, including Seroquel, Zyprexa and Clozaril itself (which has never proven to cause TD exclusively -- I know never isn't always never ... and rarely TDy [dystonia]). Dopamine agonists also work (although with psychosis I dont think that would be a good idea for you). Anticholinergics and Valium as well.
As for the nerve condition, only a neurologist, as you have seen, could diagnose it so I'm not disagreeing at all.I may or may not have Tardive Dystonia in my legs and arms, but I've lost muscle mass being sedentary and I am on Seroquel, which did cover it up, so I can't tell you how things are there. I hope it receded.
Have you ever tried Lyrica or Neurontin, as augmenters ? They could also be effective for neurological pain.
Equally Savella (milnacipran) could be helpful for pain as has been approved for fibromyalgia recently and is an SNRI, also possibly doing double duty.You may need a higher dose (120mg) of Cymbalta if you chose that road (and that also helps pain syndromes), although higher doses don't always mean a difference from 60mg... it varies by person.
And the Effexor, an SNRI also might help with pain and depression.
As for OCD, the "N" part of the SNRI may aggravate it or not... depending on how you respond to that part of the transmitter side... I am much different in that regards these days, so don't take that as what others would feel.
Lamictal also was a good suggestion, I guess you have been on it before, and it can be dosed from what I've heard as high as 600mg especially since you have Bipolar.
So I think it would be worth trying, if your doctor has heard anything about it, Savella... it is new though so I don't know about adverse reports, or higher dose Effexor or Cymbalta.Lamictal at a higher dose could cover the Bipolar side and is an antidepressant in its own right, for unipolar itself.
Lyrica if that doesn't clash with things might help with the anxiety with OCD a bit, and that would also help with neuropathic pain.
I'm sorry this syndrome has affected you... it doesn't mean it won't recede. It is also your choice to continue on the same antipsychotic or a less potent one like Seroquel... unfortunately those with Tardive syndromes may have to continue on the same offending (or another) AP... and yes, I know by my own body that it is accumulating and I am very sensitive to it.Affective disorders tend to have more sensitivity to APs.
But, its partially patching things together (not like it used to but still keeping me functional enough at the moment) and the benefits at this point still outweigh the risks, even though it aggravates a non-Tardive oro-facial tic that the medicine likely induced.
So those are just some suggestions..
-- tidings
poster:yxibow
thread:918794
URL: http://www.dr-bob.org/babble/20090921/msgs/918853.html