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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by greywolf on September 11, 2012, at 21:30:10
Haven't been around here in a long time. Thought I would stop back in to see what's up and to pose a question to long-time treatment veterans.
I have been treating for bipolar depression for about 20 years, and I have been in active CBT for severe OCD for 9 years. I have been hospitalized many times, have had experimental VNS surgery, even spent a month at a research clinic for OCD.
Basically, I have been on all the ADs, anti-psychotics, mood stabilizers, benzos, etc., available in the US at a therapeutic level during this journey. Most meds I have tried multiple times. Right now I am taking Tegretol, Saphris, Luvox, and lithium. I was on lithium many years ago, and it's being added now just on the off-chance that it might be somewhat beneficial.
I am frustrated. I have great faith in my doctor and my therapist, but it seems that I've reached the end of the line when it comes to pharmaceutical alternatives. I'm not exaggerating when I say that I've tried just about everything during these years of treatment, and other than a handful that had immediate and serious side effect, I have tried them all long enough to establish whether there was any therapeutic benefit.
So, what to do? I am told that there is a new AD just around the corner that is very different than what's on the market now, but I have heard that soooo many times before. Sure, I'll wait for it, but my basic question is what do you do when nothing works? I'm tired of hospitals and ICU and several short-term mental health stays each year. I've been treated and helped by some wonderful people, but it's just not coming together.
Your thoughts would be appreciated.
Greywolf
Posted by greywolf on September 11, 2012, at 21:49:00
In reply to Bipolar/OCD long-term med issues, posted by greywolf on September 11, 2012, at 21:30:10
Oh, I forgot to include that I have also had ECT. And I started the screening process for TMS, but the treatments are not covered by insurance and are too expensive for me to cover (about $8500).
Posted by jono_in_adelaide on September 11, 2012, at 22:13:39
In reply to Bipolar/OCD long-term med issues, posted by greywolf on September 11, 2012, at 21:30:10
Have you tried a high dose SSRI (say Zoloft 200mg) along with an NARI (say nortriptyline - dose determined by blood levels) along with an atypical antipsychotic (say risperidone or olanzapine or quietipine sr at night)
Both atypicals and NARI's have been shown to boost the action of the SSRI's in OCD, attacking the OCD with three drugs with different modes of action might get you over the line, or atleast somewhat closer to it.
I believe that in certain extreme cases, psychosurgery still has a small role to play - and you seem to be at the end of the line, so it might be worth looking into.
Also it might be worth considering treatment at a highly specialised institution, for example the Menninger Clinic
Posted by jono_in_adelaide on September 11, 2012, at 22:13:48
In reply to Bipolar/OCD long-term med issues, posted by greywolf on September 11, 2012, at 21:30:10
Have you tried a high dose SSRI (say Zoloft 200mg) along with an NARI (say nortriptyline - dose determined by blood levels) along with an atypical antipsychotic (say risperidone or olanzapine or quietipine sr at night)
Both atypicals and NARI's have been shown to boost the action of the SSRI's in OCD, attacking the OCD with three drugs with different modes of action might get you over the line, or atleast somewhat closer to it.
I believe that in certain extreme cases, psychosurgery still has a small role to play - and you seem to be at the end of the line, so it might be worth looking into.
Also it might be worth considering treatment at a highly specialised institution, for example the Menninger Clinic
Posted by Phillipa on September 11, 2012, at 22:52:35
In reply to Re: Bipolar/OCD long-term med issues, posted by jono_in_adelaide on September 11, 2012, at 22:13:48
Greywolf I remember you. How high did you go on the Luvox? Did it eliminate the OCD? Which form do you have of OCD. I didn't know bipolar and Ocd went together. Right now Scott is trialing minocycline with lamictal and doing well. How the ocd fits in I don't know. Phillipa
Posted by jono_in_adelaide on September 11, 2012, at 23:11:21
In reply to Re: Bipolar/OCD long-term med issues, posted by jono_in_adelaide on September 11, 2012, at 22:13:48
I know the mere mention of psychosurgery brings up images of "One flew over the cuckoos nest" and such like, but it has changed a lot since then, and if you have tried every possible alternative, it might be worth considering - I know I would atleast closely look at if if i hadnt found a cocktail of drugs to keep my anxiety, panic attacks and depression at bay.
I'd first look at deep brain stimulation, then at what if anything psychsurgery might have to offer, preferable at a center like MenningerFrom the Wikipedia article on Psychosurgery
Psychosurgery today:
All the forms of psychosurgery in use today (or used in recent years) target the limbic system, which involves structures such as the amygdala, hippocampus, certain thalamic and hypothalamic nuclei, prefrontal and orbitofrontal cortex, and cingulate gyrus all connected by fibre pathways and thought to play a part in the regulation of emotion.[19] There is no international consensus on the best target site.[19]
Anterior cingulotomy was first used by Hugh Cairns in the UK, and developed in the US by H.T. Ballantine jnr.[12] In recent decades it has been the most commonly used psychosurgical procedure in the US.[19] The target site is the anterior cingulate cortex; the operation disconnects the thalamic and posterior frontal regions and damages the anterior cingulate region.[19]
Anterior capsulotomy was developed in Sweden, where it became the most frequently used procedure. It is also used in Scotland. The aim of the operation is to disconnect the orbitofrontal cortex and thalamic nuclei.[19]
Subcaudate tractotomy was the most commonly used form of psychosurgery in the UK from the 1960s to the 1990s. It targets the lower medial quadrant of the frontal lobes, severing connections between the limbic system and supra-orbital part of the frontal lobe.[19]
Limbic leucotomy is a combination of subcaudate tractotomy and anterior cingulotomy. It was used at Atkinson Morley Hospital London in the 1990s[19] and also at Massachusetts General Hospital.[20]
Amygdalotomy, which targets the amygdala, was developed as a treatment for aggression by Hideki Narabayashi in 1961 and is still used occasionally, for example at the Medical College of Georgia.[21]
There is debate about whether or not deep brain stimulation (DBS) should be classed as a form of psychosurgery.[22]
Endoscopic sympathetic block (a form of endoscopic thoracic sympathectomy) for patients with anxiety disorder is sometimes considered to be a psychiatric treatment, despite it not being surgery of the brain. There is also renewed interest in using it to treat schizophrenia.[23] ESB disrupts brain regulation of many organs normally affected by emotion, such as the heart and blood vessels. A large study demonstrated significant reduction in "alertness" and "fear" in patients with social phobia as well as improvement in their quality of life.[24]
Posted by greywolf on September 11, 2012, at 23:18:37
In reply to Re: Bipolar/OCD long-term med issues, posted by jono_in_adelaide on September 11, 2012, at 22:13:39
> Have you tried a high dose SSRI (say Zoloft 200mg) along with an NARI (say nortriptyline - dose determined by blood levels) along with an atypical antipsychotic (say risperidone or olanzapine or quietipine sr at night)
>
> Both atypicals and NARI's have been shown to boost the action of the SSRI's in OCD, attacking the OCD with three drugs with different modes of action might get you over the line, or atleast somewhat closer to it.
>
> I believe that in certain extreme cases, psychosurgery still has a small role to play - and you seem to be at the end of the line, so it might be worth looking into.
>
> Also it might be worth considering treatment at a highly specialised institution, for example the Menninger ClinicThanks for your thoughts. I have been the way of SSRIs combined with SNRIs/anti-psychs many times. I've been fortunate to also have several pyschiatrists review my lengthy med history, but they have nothing to add in terms of new strategies. None of the combos have had any significant beneficial effect on the OCD. The only combo that has had even a small effect has been Anafranil and Tegretol, but it was inconsequential in the face of my OCD symptoms.
Therapy twice a week has been the only thing allowing me to keep pace with the OCD. I was fortunate enough to treat for several years with a noted US specialist in CBT for OCD, and I spent a month at the University of Pennsylvania Center for the Study and Treatment of Anxiety, which is one of, if not the, best OCD treatment centers in the country. While the treatment was helpful with some of my low-order behaviors, the big ticket items were left untouched.
I'm trying hard to keep a positive mindset and to move forward with the current regimen, but I feel like all this effort the past few years has been going merely to treading water. It's kind of worn me out.
Posted by greywolf on September 11, 2012, at 23:48:44
In reply to Re: Bipolar/OCD long-term med issues, posted by Phillipa on September 11, 2012, at 22:52:35
> Greywolf I remember you. How high did you go on the Luvox? Did it eliminate the OCD? Which form do you have of OCD. I didn't know bipolar and Ocd went together. Right now Scott is trialing minocycline with lamictal and doing well. How the ocd fits in I don't know. Phillipa
Hi Phillipa. Nice to hear from you again. I hope you are well.
I'm at 300mg of Luvox. Although Luvox is used to treat OCD, I tried the SSRI route repeatedly and found that the only somewhat effective med was a tricyclic. I'm taking the Luvox right now primarily for anxiety mitigation because I can no longer take benzos (I got to 14mg/day of Xanax with no benefit, so they're no longer prescribed for me). I have had two courses of Lamictal, to no avail. Minocycline as an adjunct is interesting, but given the inconclusiveness of studies involving OCD, it seems a reach at this point. It is something to talk to my doctor about, though, so thanks for mentioning it.
As to the type of OCD I have, well I have checking and counting behaviors galore, but the most disturbing are obsessional bad thoughts (believing that performing an act while having a negative thought will cause harm to come to others if I don't pray that it doesn't; having thoughts about injury or death to family and friends that must be countered by prayer rituals so that the imagined harm does not become reality). CBT has helped me get a handle on the lower order issues, but the obsessional bad thoughts are unbelievably difficult to control, and cause great anxiety.
Posted by greywolf on September 11, 2012, at 23:51:20
In reply to Re: Bipolar/OCD long-term med issues, posted by jono_in_adelaide on September 11, 2012, at 23:11:21
> I know the mere mention of psychosurgery brings up images of "One flew over the cuckoos nest" and such like, but it has changed a lot since then, and if you have tried every possible alternative, it might be worth considering - I know I would atleast closely look at if if i hadnt found a cocktail of drugs to keep my anxiety, panic attacks and depression at bay.
>
>
> I'd first look at deep brain stimulation, then at what if anything psychsurgery might have to offer, preferable at a center like Menninger
>
> From the Wikipedia article on Psychosurgery
>
> Psychosurgery today:
>
> All the forms of psychosurgery in use today (or used in recent years) target the limbic system, which involves structures such as the amygdala, hippocampus, certain thalamic and hypothalamic nuclei, prefrontal and orbitofrontal cortex, and cingulate gyrus all connected by fibre pathways and thought to play a part in the regulation of emotion.[19] There is no international consensus on the best target site.[19]
>
> Anterior cingulotomy was first used by Hugh Cairns in the UK, and developed in the US by H.T. Ballantine jnr.[12] In recent decades it has been the most commonly used psychosurgical procedure in the US.[19] The target site is the anterior cingulate cortex; the operation disconnects the thalamic and posterior frontal regions and damages the anterior cingulate region.[19]
>
> Anterior capsulotomy was developed in Sweden, where it became the most frequently used procedure. It is also used in Scotland. The aim of the operation is to disconnect the orbitofrontal cortex and thalamic nuclei.[19]
>
> Subcaudate tractotomy was the most commonly used form of psychosurgery in the UK from the 1960s to the 1990s. It targets the lower medial quadrant of the frontal lobes, severing connections between the limbic system and supra-orbital part of the frontal lobe.[19]
>
> Limbic leucotomy is a combination of subcaudate tractotomy and anterior cingulotomy. It was used at Atkinson Morley Hospital London in the 1990s[19] and also at Massachusetts General Hospital.[20]
>
> Amygdalotomy, which targets the amygdala, was developed as a treatment for aggression by Hideki Narabayashi in 1961 and is still used occasionally, for example at the Medical College of Georgia.[21]
>
> There is debate about whether or not deep brain stimulation (DBS) should be classed as a form of psychosurgery.[22]
>
> Endoscopic sympathetic block (a form of endoscopic thoracic sympathectomy) for patients with anxiety disorder is sometimes considered to be a psychiatric treatment, despite it not being surgery of the brain. There is also renewed interest in using it to treat schizophrenia.[23] ESB disrupts brain regulation of many organs normally affected by emotion, such as the heart and blood vessels. A large study demonstrated significant reduction in "alertness" and "fear" in patients with social phobia as well as improvement in their quality of life.[24]
>
While I am not afraid of surgery and, indeed, have had surgery to implant the experimental VNS stimulator as part of a trial, DBS is very much a last resort. Admittedly, it looks like I am at last resort time, but DBS is pretty scary to me.
Posted by Phillipa on September 12, 2012, at 0:20:36
In reply to Re: Bipolar/OCD long-term med issues » Phillipa, posted by greywolf on September 11, 2012, at 23:48:44
I'm sorry and very time consuming also. Since it's in the anxiety spectrum what other options other than benzos. I know what you mean that a ton of xanax. Mine just doesnt work. Now makes me tired instead of full of energy. Phillipa
Posted by jono_in_adelaide on September 12, 2012, at 0:45:41
In reply to Re: Bipolar/OCD long-term med issues » greywolf, posted by Phillipa on September 12, 2012, at 0:20:36
Unfortunatly benzos dont work for COD (though they can make it easier to live with your OCD)
The first drug to have a significant effect was clomipramine (although there had been talk of some people feeling subjectively beter on Nardil and Thorazine), this was virtualy the only treatment until the SSRI's came along.
Unfortunatly, despite everything we have, we still dont have enough.
Posted by jono_in_adelaide on September 12, 2012, at 0:49:49
In reply to Re: Bipolar/OCD long-term med issues, posted by jono_in_adelaide on September 12, 2012, at 0:45:41
Greywolf - might be worth having a read of this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2838907/?tool=pubmed
Very besy wishes and very best luck from down under
Posted by Greywolf on September 12, 2012, at 5:35:20
In reply to Re: Bipolar/OCD long-term med issues, posted by jono_in_adelaide on September 12, 2012, at 0:49:49
> Greywolf - might be worth having a read of this:
>
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2838907/?tool=pubmed
>
> Very besy wishes and very best luck from down underThanks much. I have read a lot about DBS and have consulted with surgeons who perform the surgery. It's just a big leap for me. The VNS surgery was pretty limited, though it took longer than anticipated. Brain surgery is a tough one. I may well be at that point, but it's distressful.
Posted by phidippus on September 12, 2012, at 18:15:43
In reply to Bipolar/OCD long-term med issues, posted by greywolf on September 11, 2012, at 21:30:10
OCD is just something you have to live with. I've lived with it for 13 years now. ERP proved to be the best therapy for it and really reduced my obsessions. As far as medications go, I had great benefit from Clomipramine, Mirtazapine and am currently taking Viibryd. The addition of Abilify reduced intrusive thoughts. Vyvanse nearly eliminated my OCD. My cocktail:
Lithium 1200 mg
Abilify 10 mg
Viibryd 60 mg
Vyvanse 60 mg
Klonopin 1mgHere are some medications you may not have tried for your OCD:
Zonisimide - Can treat bipolar depression and is a glutamate antagonist, which makes it good for OCD
Keppra - reduced my OCD a whole bunch also can be used as a mood stabilizer
Lyrica - can reduce OCD/anxiety
Prazosin - It is hypothesised that prazosin in combination with a Serotonin Reuptake Inhibitor (SRI) might possess an anti-obsessive compulsive disorder (OCD) modulating effect by raising dopamine (DA) levels in the synaptic cleft in the prefrontal cortex and inhibiting extracellular DA concentrations in the nucleus accumbens
Memantine - NMDA antagonist.
Ketamine - obliterated my OCD for a day or two.
Eric
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