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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
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)When I was on Geodon I was on:
Lexapro (for OCD)
Provigil (for sleepiness- I always need this whatever the drug regime)
Lamictal 200mgGeodon withdrawal was excruciating and I was out for 4-5 months. Finally I settled on Lamictal 200, High dose Provigil (400-600mg) and Wellbutrin and Lexapro.
Unfortunately my depression has returned with a bang. I dont get out of bed. I am so close to suicide (which I have told my doctor)
I am out of choices.
-SSRIs only help my OCD not the depression.
-Effexor has worked in the past at high doses but that is because it made me high (I dont how it will work now that I am on a mood-stabilizer)
-Lithium has no effect on me at all
-I have tried unconventional drugs like Mirapex as well
-I am a TCA non-responder and because I have inherent sleepiness I cant tolerate themMy pdoc has suggested Parnate (which I have tried before and sedated me a lot) but I am willing to give a try (since he promised it would become stimulating at the right dose) but it is supposedly not good for OCD. My OCD only responds to SSRIs and SNRIs (not even antipsychotics). And since SSRIs are dangerous with MAOIs they is no option of adding one to Parnate. Dose anyone have actual experience with Parnate and OCD?
He also suggested Clozapine(!) but from what I have read it has no antidepressant properties.
I really feel out of choices and because I am very sleepy by nature sedating ADs are not an option for me.
I am reconsidering high dose Effexor or duloxetine (which I tried but did nothing in particular)
Am I missing anything?
Any suggestions greatly appreciated
Thanks for reading.
Love D
Posted by Phillipa on September 28, 2009, at 12:03:19
In reply to Geodon, TD, Effexor.....HELP!!, posted by delna on September 28, 2009, at 3:42:15
What is tardive pain? How bout a second opinion? Does the doc know you're close to suicidal? Phillipa
Posted by delna on September 28, 2009, at 12:39:25
In reply to Re: Geodon, TD, Effexor.....HELP!! » delna, posted by Phillipa on September 28, 2009, at 12:03:19
> What is tardive pain? How bout a second opinion? Does the doc know you're close to suicidal? Phillipa
Thank you Phillipa for the reply...
Tardive pain falls under the same umbrella as TD'Oral and genital tardive pain syndromes.
Ford B, Greene P, Fahn S.Neurological Institute, Columbia-Presbyterian Medical Center, New York, NY.
We report the development of chronic painful oral or genital sensations in 11 patients with tardive akathisia, tardive dyskinesias, or tardive dystonia. In each case, the pain syndrome became a source of profound distress for the patient, overshadowing all other concurrent neuropsychiatric symptoms, and requiring treatment. Agents effective in treating tardive dyskinesia and tardive akathisia, such as catecholamine depletors, proved effective in reducing the painful sensations. Our observations support the concept of tardive pain as a complication of chronic neuroleptic exposure.'
In the main text which I bought the authors postulate that it is a separate syndrome that can occur in the absence of any motor symptoms yet it means that the same abnormalities have been produced in the brain that can lead to full TD
Yes, he knows I'm really suicidal but I live with my parents and I am practically on suicide watch. I've had a second opinion. problem is no one can say this is not tardive pain syndrome because there is absolutely no other explanation for Geodon related genital pain....
Thanks
D
Posted by polarbear206 on September 28, 2009, at 12:46:56
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)
>
> When I was on Geodon I was on:
> Lexapro (for OCD)
> Provigil (for sleepiness- I always need this whatever the drug regime)
> Lamictal 200mg
>
> Geodon withdrawal was excruciating and I was out for 4-5 months. Finally I settled on Lamictal 200, High dose Provigil (400-600mg) and Wellbutrin and Lexapro.
>
> Unfortunately my depression has returned with a bang. I dont get out of bed. I am so close to suicide (which I have told my doctor)
> I am out of choices.
> -SSRIs only help my OCD not the depression.
> -Effexor has worked in the past at high doses but that is because it made me high (I dont how it will work now that I am on a mood-stabilizer)
> -Lithium has no effect on me at all
> -I have tried unconventional drugs like Mirapex as well
> -I am a TCA non-responder and because I have inherent sleepiness I cant tolerate them
>
> My pdoc has suggested Parnate (which I have tried before and sedated me a lot) but I am willing to give a try (since he promised it would become stimulating at the right dose) but it is supposedly not good for OCD. My OCD only responds to SSRIs and SNRIs (not even antipsychotics). And since SSRIs are dangerous with MAOIs they is no option of adding one to Parnate. Dose anyone have actual experience with Parnate and OCD?
>
> He also suggested Clozapine(!) but from what I have read it has no antidepressant properties.
>
> I really feel out of choices and because I am very sleepy by nature sedating ADs are not an option for me.
>
> I am reconsidering high dose Effexor or duloxetine (which I tried but did nothing in particular)
>
> Am I missing anything?
>
> Any suggestions greatly appreciated
> Thanks for reading.
> Love D
>Delna,
Effexor/lamictal combo work great for me.
Effexor 300mg
Lamictal 200mg.
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
Posted by delna on September 29, 2009, at 3:21:08
In reply to Re: Geodon, TD, Effexor.....HELP!!, posted by polarbear206 on September 28, 2009, at 12:46:56
I think that's what I think I am going to try. High dose Effexor...with the lamictal
Thanks
Posted by desolationrower on September 29, 2009, at 17:33:13
In reply to Geodon, TD, Effexor.....HELP!!, posted by delna on September 28, 2009, at 3:42:15
might try fluoxetine as your ssri. has 5ht2c antagonism like geodon.
also, what i've been suggesting a lot, NAC. helps OCD, extrapyramidal sx, bipolar depression.
desipramine isn't fatiguing as TCAs go. a tca might help wiht the pain thing too.
how high was the geodon dose
-d/r
Posted by psychobot5000 on September 29, 2009, at 20:15:20
In reply to Geodon, TD, Effexor.....HELP!!, posted by delna on September 28, 2009, at 3:42:15
For what it's worth, I have OCD and have been on Parnate. It did not exacerbate my OCD. I think the medical literature may be slightly-oversensitive to risks of combining drugs with stimulant-like characteristics with OCD. It could be worth a try for you.
Posted by polarbear206 on September 29, 2009, at 23:23:42
In reply to Re: Geodon, TD, Effexor.....HELP!! » polarbear206, posted by delna on September 29, 2009, at 3:21:08
> I think that's what I think I am going to try. High dose Effexor...with the lamictal
> ThanksPlease let us know how it goes. I wish you the best and will keep my fingers crossed for you!
Posted by delna on October 3, 2009, at 14:47:46
In reply to Re: Geodon, TD, Effexor.....HELP!!, posted by desolationrower on September 29, 2009, at 17:33:13
> might try fluoxetine as your ssri. has 5ht2c antagonism like geodon.
Used prozac. Totally unless except for my OCD
>
> also, what i've been suggesting a lot, NAC. helps OCD, extrapyramidal sx, bipolar depression.
>
> desipramine isn't fatiguing as TCAs go. a tca might help wiht the pain thing too.Post stopping Geodon- pain is gone :)
>
> how high was the geodon dose
Pretty low -60mg> -d/r
Thank you!
Posted by delna on October 3, 2009, at 14:50:37
In reply to Re: Geodon, TD, Effexor.....HELP!!, posted by polarbear206 on September 29, 2009, at 23:23:42
> > I think that's what I think I am going to try. High dose Effexor...with the lamictal
> > Thanks
>
> Please let us know how it goes. I wish you the best and will keep my fingers crossed for you!You know my doctor convinced me that Parnate was the way to go considering I had such dangerously suicidal depression. So I've gone for that and it seems to be helping. problem is I dont know what will happen when the OCD comes back- Parnate doesnt appear to be promising 4 that :(
Thanks for your concern
TC
D
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