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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 17 of 17. This is the beginning of the thread.
Posted by fido on February 23, 2015, at 15:39:36
Hi,
I read a book written by a psychiatrist about treatment resistant cases. The book contains all kind of reports from hard cases which the author (Swiss Psychiatrist) treated as patients.
I actually thought that this book would be encouraging cause the title said that it's about supposedly treatment resistant cases.Anyway, what really dragged me down is that the author described the diagnosis of the patients, the drugs which were being tried out and what doses was used and also how they progressed. And many of the patients basically went from one antidepressant to the next one. All the time they were adjusting doses and raising doses and measuring the serum concentration of the antidepressant. The psychiatrist kept these patients in very close touch and he intervened much more often than a normal psychiatrist would do it.
This is already discouraging cause my psychiatrist tells me to take a certain dose and then I see him again in 8 weeks. But this is a very long time and if I don't make progress then he will say raise the dosage further and then I see him in another 8 weeks.
But the author raised dosages much faster and always kept track of wether the patient improved or not.
Many times the serum levels of the antidepressants were so low that he had to use ultra high doses, like for example one patient was on 2000mg fluvoxamine!!!Anyway, what really got to me was that many of the patients ultimatively did not really get well. It was always an up and down. Many times it seemed like the patient was doing much better only to get a relapse a few months later and suddenly the old drugs didn't work anymore!
This is really discouraging. I dont know how often this happens but when I think about that even IF you find a drug which actually works (which is already very difficult) and then it might only work for a short time then this is totally discouraging. :(What also really surprised me is that the author almost in all cases used mood stabilizers like lithium even in patients without bipolar depression!
It sounded like without mood stabilizer it's not possible to stay stable over a longer period.Now I'm unsure what to think. Does this mean everybody with strong unipolar depression should take an antidepressant and mood stabilizer?
What was also interesting is that the author also frequently used ritalin in patients without adhd which had low energy as a side effect of antidepressants. This seems very uncommon.
Posted by Robert_Burton_1621 on February 23, 2015, at 20:12:12
In reply to Discouraged after reading book on resistant cases, posted by fido on February 23, 2015, at 15:39:36
> This is really discouraging. I dont know how often this happens but when I think about that even IF you find a drug which actually works (which is already very difficult) and then it might only work for a short time then this is totally discouraging. :(
>Hello Fido,
I can sympathise with your sense of discouragement. However, because there doesn't appear to be any clinical consensus about the definition and sub-classification of treatment resistant depression, it is often a difficult and time consuming process to identify effective agents or combinations of agents to address it.
Another point may be that "treatment resistance" may simply be a description of a patient's non-response to a succession of agents which are themelves not optimal for his or her underlying type of depression.
The whole question as to why effective treatments "poop-out" is a really difficult but I think pressing one. Many people here have experienced this, and it can be by turns frustrating and profoundly dispiriting.
All in all, though, I think the extent of treatment resistance is very much underestimated. You will find a number of people here still persevering with alternative medications after a number of failures. But there are also success stories, some qualified others unequivocal. I would keep up hope as best you can.
You might like to do some research yourself on pubmed, for instance, for other studies or treatment strategies.
> What also really surprised me is that the author almost in all cases used mood stabilizers like lithium even in patients without bipolar depression!
Lithium as an augmenting agent may be described as a "mood stabiliser" but that description does not exhaust its pharmacological effects. It has been a first-choice augmentation agent to an anti-depressant for many, many years. It may act serotonergically, though there are people here with much more accurate knowledge about such things than me.
Atypical anti-psychotics are also used as augmenting agents to kick start anti-depressant response or (relatively) long-term. I never consented to long-term combination therapy because of the side-effects of AAP use (metabolic syndrome, especially).
> What was also interesting is that the author also frequently used ritalin in patients without adhd which had low energy as a side effect of antidepressants. This seems very uncommon.
Amphetamine adjunctive therapy is not that uncommon in cases of later-stage treatment depression, though obviously it needs to be managed with care.
May I ask what medications you have tried?
I do hope you obtain sufficient information and guidance from your psychiatrist. I agree that 8 weeks is a long time to be left on your own and self-assessing.
Posted by fido on February 26, 2015, at 9:52:44
In reply to Re: Discouraged after reading book on resistant cases » fido, posted by Robert_Burton_1621 on February 23, 2015, at 20:12:12
Hello!
I'd be too scared of AAPs and Lithium. Lithium has a lot of side effects. I was thinking maybe I could try Lamictal but I'm not sure if this is a good idea. I read that it could lower seizure threshold when you take it and then get off it. If this is true then it would be too scary for me.
The cases in the books had already tried many drugs and were labeled as treatment resistant by their prior doctors.
I thought that the book would be full of happy endings which are encouraging but not so. It rather dragged me down to read how many patients felt better and then relapsed and then they switched drugs or increased doses, felt better for a while and then relapsed again. It made it look like even IF you feel better and think it's finally working it can get worse again at any time. This is damn scary!What was also surprising is that the author often times increased doses and then suddenly an antidepressant which wasn't working before started to work. For example somebody is on 100mg citalopram and it's not working. Then they raise to 120mg and suddenly it's working. To me this makes no sense. I'd have thought that if 100mg do nothing then 120mg also will not work. But if such a small increase can make a difference then this makes me wonder how many of the ADs which I tried and which didn't work might have worked at higher doses.
I have tried so far:
citalopram 20mg 1 month
remeron 30mg 8 weeks
wellbutrin 300mg 8 weeks
agomelatin (useless imo)
tianeptine 37,5mg (4 weeks, made me feel worse)
memantine 20mg 5 weeks (didnt really make a difference)
lexapro 20mg + ritalin LA (12 weeks, didnt work)
anafranil 75mg (sides effect were too strong)
cymbalta 60 (3 weeks, not working) then increase to 90mg for 2 weeks, also not workingi am now trying out strattera for ADHD but I'm pretty sure it won't work. wellbutrin also didn't work.
i could try strattera + lexapro cause i have lexapro at home but i'm not sure if this is a safe combo.
Posted by SLS on March 11, 2015, at 6:59:53
In reply to Re: Discouraged after reading book on resistant cases, posted by fido on February 26, 2015, at 9:52:44
> citalopram 20mg 1 month - Too low. 40 mg
> remeron 30mg 8 weeks - Too low. 45 - 75 mg
> wellbutrin 300mg 8 weeks - Any increase in energy?
> agomelatin (useless imo) - Good for rapid cycling bipolar
> tianeptine 37,5mg (4 weeks, made me feel worse) - Clue?
> memantine 20mg 5 weeks (didnt really make a difference) - Too low. 40 mg
> lexapro 20mg + ritalin LA (12 weeks, didnt work) -
> anafranil 75mg (sides effect were too strong) - Startup side effects only? Start at 25 mg
> cymbalta 60 (3 weeks, not working) then increase to 90mg for 2 weeks, also not working - Too low 120 mgDid any drug give you more energy? It is likely you will need two or more drugs.
Lithium at low dosages helps with depression when combined with an antidepressant.
Moderate dosages of Lamictal helps with depression when combined with an antidepressant.
MAOI?
Effexor/Pristiq + Remeron?
Effexor/Pristiq + Wellbutrin?Neural stimulation?
- TMS
- DBSI am beginning to entertain the thought of using DBS.
- Scott
Posted by Deahoidar on March 21, 2015, at 23:59:30
In reply to Re: Discouraged after reading book on resistant cases » fido, posted by SLS on March 11, 2015, at 6:59:53
You might want to think twice or more before you go in for DBS. I have been a DBS guinea pig and I know a number of others. The outcome isn't nearly as rosy as it might appear. There are a good number of "casualties" for every success. And even the "success stories" may not be as successful as you think.
Posted by SLS on March 23, 2015, at 2:54:23
In reply to Re: Discouraged after reading book on resistant cases, posted by Deahoidar on March 21, 2015, at 23:59:30
> You might want to think twice or more before you go in for DBS. I have been a DBS guinea pig and I know a number of others. The outcome isn't nearly as rosy as it might appear. There are a good number of "casualties" for every success. And even the "success stories" may not be as successful as you think.
Thanks for the feedback.
What has been your personal experience with DBS?
I just don't want to go the rest of my life this way (chronic bipolar depression). I remember all too well what it was like to be free of it.
Thanks.
- Scott
Posted by Robert_Burton_1621 on March 23, 2015, at 4:21:23
In reply to Re: Discouraged after reading book on resistant cases » Deahoidar, posted by SLS on March 23, 2015, at 2:54:23
> > You might want to think twice or more before you go in for DBS. I have been a DBS guinea pig and I know a number of others. The outcome isn't nearly as rosy as it might appear. There are a good number of "casualties" for every success. And even the "success stories" may not be as successful as you think.
>
> Thanks for the feedback.
>
> What has been your personal experience with DBS?
>
> I just don't want to go the rest of my life this way (chronic bipolar depression). I remember all too well what it was like to be free of it.
>
> Thanks.
>
>
> - ScottHi Scott,
I can't speak at all from experience, but the idea of undergoing it had also seriously crossed my mind before I found a psychiatrist willing to prescribe an MAOI. I am aware that there is intensive research being done in Sydney on Direct Current Stimulation (I'm assuming that's the same modality as "DBS"?). This link is to the institute conducting the research, it's pretty basic info bu may be helpful:
And a couple of examples if recent academic findings:
Loo C, Alonzo A, Martin D, Mitchell P, Galvez V, Sachdev P. Transcranial direct current stimulation for depression: 3-week, randomised, sham-controlled trial. British Journal of Psychiatry 2012; 200:52-59.Player, M. J., Taylor, J. L., Weickert, C. S., Alonzo, A., Sachdev, P. S., Martin, D., Loo, C. K. Increase in PAS-induced neuroplasticity after a treatment course of transcranial direct current stimulation for depression. Journal of Affective Disorders. 2014; 167:140-147.
I'm really impressed by your desire to pursue all effective treatment options. I know just what you mean.
Posted by SLS on March 23, 2015, at 8:51:43
In reply to Re: Discouraged after reading book on resistant cases » SLS, posted by Robert_Burton_1621 on March 23, 2015, at 4:21:23
Hi, Robert.
> Hi Scott,
>
> I can't speak at all from experience, but the idea of undergoing it had also seriously crossed my mind before I found a psychiatrist willing to prescribe an MAOI. I am aware that there is intensive research being done in Sydney on Direct Current Stimulation (I'm assuming that's the same modality as "DBS"?).DBS stands for Deep Brain Stimulation, and involves the implantation of electrodes into the brain. Direct current stimulation is known as DCS and involves the transcranial application of electricity similar to ECT. Confusing, I know.
Thanks for the links. I won't forget to look into DCS.
Here's another one:
Thanks for your concern and taking the time to provide information.
- Scott
Posted by Deahoidar on March 24, 2015, at 8:08:42
In reply to Re: Discouraged after reading book on resistant cases » Deahoidar, posted by SLS on March 23, 2015, at 2:54:23
> > You might want to think twice or more before you go in for DBS. I have been a DBS guinea pig and I know a number of others. The outcome isn't nearly as rosy as it might appear. There are a good number of "casualties" for every success. And even the "success stories" may not be as successful as you think.
>
> Thanks for the feedback.
>
> What has been your personal experience with DBS?
>
> I just don't want to go the rest of my life this way (chronic bipolar depression). I remember all too well what it was like to be free of it.
>
> Thanks.
>
>
> - ScottScott, I can relate to your not wanting to go through life suffering this way. I was at the very end of my rope when I agreed to DBS. Everything I read and heard was very encouraging. What I didn't know was that the unfavorable results weren't always available, so I got a skewed perspective on DBS.
The clinical trial was a nightmare, with my being denied access to medications and threatened with hospitalization and removal from the treatment study. I stuck with it, only to have the FDA determine that continuing the study would be futile, as the chance of benefitting from DBS was less than 18%. Certainly, I was not benefitting from it.
In addition, as time went on I learned that a number of other study participants experienced significant, even horrible, adverse effects.
While there are a few patients who have benefitted from DBS, there are many many more who have not, and many have been left to suffer with significant disabilities as a result. It really is a roulette wheel.
If you are interested, let me know. I have a considerable library on the subject.
Posted by Robert_Burton_1621 on March 24, 2015, at 9:58:10
In reply to Re: Discouraged after reading book on resistant cases » Robert_Burton_1621, posted by SLS on March 23, 2015, at 8:51:43
> Hi, Robert.
> DBS stands for Deep Brain Stimulation, and involves the implantation of electrodes into the brain.
>Oh gosh, that indeed is a big difference! So DBS is surgically invasive? I wonder whether it is prudent to attempt non-invasive stimulation modalities prior to even considering invasive ones?
Very informative.
> Thanks for your concern and taking the time to provide information.
>No need to thank me - if only I knew more! We're all in this together, in many ways.
>
> - Scott
Posted by Robert_Burton_1621 on March 24, 2015, at 10:01:47
In reply to Re: Discouraged after reading book on resistant cases » SLS, posted by Deahoidar on March 24, 2015, at 8:08:42
> I have a considerable library on the subject.
Deahoidar. I'm sorry to hear of your unfortunate, and (it seems) clinically brutal, experience with DBS. I am very interested in reading any citations to research you may be minded to share.
Posted by SLS on March 24, 2015, at 10:12:17
In reply to Re: Discouraged after reading book on resistant cases » SLS, posted by Deahoidar on March 24, 2015, at 8:08:42
> > > You might want to think twice or more before you go in for DBS. I have been a DBS guinea pig and I know a number of others. The outcome isn't nearly as rosy as it might appear. There are a good number of "casualties" for every success. And even the "success stories" may not be as successful as you think.
> >
> > Thanks for the feedback.
> >
> > What has been your personal experience with DBS?
> >
> > I just don't want to go the rest of my life this way (chronic bipolar depression). I remember all too well what it was like to be free of it.
> >
> > Thanks.
> >
> >
> > - Scott
>
> Scott, I can relate to your not wanting to go through life suffering this way. I was at the very end of my rope when I agreed to DBS. Everything I read and heard was very encouraging. What I didn't know was that the unfavorable results weren't always available, so I got a skewed perspective on DBS.
> The clinical trial was a nightmare, with my being denied access to medications and threatened with hospitalization and removal from the treatment study. I stuck with it, only to have the FDA determine that continuing the study would be futile, as the chance of benefitting from DBS was less than 18%. Certainly, I was not benefitting from it.
> In addition, as time went on I learned that a number of other study participants experienced significant, even horrible, adverse effects.
> While there are a few patients who have benefitted from DBS, there are many many more who have not, and many have been left to suffer with significant disabilities as a result. It really is a roulette wheel.
> If you are interested, let me know. I have a considerable library on the subject.
THANK YOU!!!
- Scott
Posted by Deahoidar on March 24, 2015, at 14:32:40
In reply to Re: Discouraged after reading book on resistant cases » Deahoidar, posted by Robert_Burton_1621 on March 24, 2015, at 10:01:47
> > I have a considerable library on the subject.
>
> Deahoidar. I'm sorry to hear of your unfortunate, and (it seems) clinically brutal, experience with DBS. I am very interested in reading any citations to research you may be minded to share.
>
>As you may be aware, clinical trials with negative outcomes are very rarely published. Some articles worth reviewing are:
Unusual Complications of Deep Brain Stimulation.
Neurosurg Rev
DOI 10.1007/s10143-014-0588-9A Randomized Sham-Controlled Trial of Deep
Brain Stimulation of the Ventral Capsule/Ventral
Striatum for Chronic Treatment-Resistant
Depression
http://dx.doi.org/10.1016/j.biopsych.2014.11.023And especially,
Deep Brain Stimulation for Treatment-resistant Depression:
Systematic Review of Clinical Outcomes
(T. Morishita et al)
Neurotherapeutics
DOI 10.1007/s13311-014-0282-1There are many more, but that's a start. What I can tell you is that DBS is significant brain surgery with significant risks. And the benefits are far from certain. Would I do it again? Probably not. But then, I would probably be dead. I figured why not.
Posted by SLS on March 25, 2015, at 0:04:57
In reply to Re: Discouraged after reading book on resistant cases » Robert_Burton_1621, posted by Deahoidar on March 24, 2015, at 14:32:40
What site in the brain did your DBS target?
I am not familiar with the ventral capsule/striatum being a target of DBS historically for depression. I have seen Brodmann' Area 25 and the nucleus accumbens targeted. I would like to see a RCT of DBS at these sites.
- Scott
------------------------------------------
> > > I have a considerable library on the subject.
> >
> > Deahoidar. I'm sorry to hear of your unfortunate, and (it seems) clinically brutal, experience with DBS. I am very interested in reading any citations to research you may be minded to share.
> >
> >
>
> As you may be aware, clinical trials with negative outcomes are very rarely published. Some articles worth reviewing are:
>
> Unusual Complications of Deep Brain Stimulation.
> Neurosurg Rev
> DOI 10.1007/s10143-014-0588-9
>
> A Randomized Sham-Controlled Trial of Deep
> Brain Stimulation of the Ventral Capsule/Ventral
> Striatum for Chronic Treatment-Resistant
> Depression
> http://dx.doi.org/10.1016/j.biopsych.2014.11.023
>
> And especially,
> Deep Brain Stimulation for Treatment-resistant Depression:
> Systematic Review of Clinical Outcomes
> (T. Morishita et al)
> Neurotherapeutics
> DOI 10.1007/s13311-014-0282-1
>
> There are many more, but that's a start. What I can tell you is that DBS is significant brain surgery with significant risks. And the benefits are far from certain. Would I do it again? Probably not. But then, I would probably be dead. I figured why not.
>
Posted by stargazer2 on April 1, 2015, at 10:38:25
In reply to Discouraged after reading book on resistant cases, posted by fido on February 23, 2015, at 15:39:36
Hi all...I haven't written in awhile but used to be a frequent flyer.
I have TRD with more than 30 years on meds, ECT (2011), TMS (2014). Once again I find myself at the edge of life and going through a new medication trial. I have been on Seroquel 150XR, Lithium 300,and recently added Pristiq 50. As of yesterday, I have begun Buproprion 150XR and increased my lithium from 300 to 900.
My life has been a marginal one, always going in and out of life with the inability to work for the last 5 years after a divorce that brought me to my knees.
I do not feel that my condition ever really improves for long and it is a constant battle to find meds that will help.
I did recently have a genetic test done which isolated the meds that might be the best ones for me and they include MAOs which I have used quite often and many of the stimulants. I also take generic Adderall XR I forgot to say.
So, all in all the battle has been long and frustrating. Many times I have almost given up.
Posted by Deahoidar on April 1, 2015, at 13:30:13
In reply to Re: Discouraged after reading book on resistant cases » Deahoidar, posted by SLS on March 25, 2015, at 0:04:57
I participated in a study of Brodmann areas 24/25, aka the sub-callosal singulate. My first battery pack didn't last even a year. I volunteered to be a test subject for a rechargeable battery (which is not approved for use in the U.S.) So far it is working pretty well with recharging every 3-6 days.
I would be thrilled if it improved my depression but I haven't see that yet. Time will tell.
Posted by Deahoidar on April 1, 2015, at 13:41:52
In reply to Re: Discouraged after reading book on resistant cases, posted by stargazer2 on April 1, 2015, at 10:38:25
> Hi all...I haven't written in awhile but used to be a frequent flyer.
>
> I have TRD with more than 30 years on meds, ECT (2011), TMS (2014). Once again I find myself at the edge of life and going through a new medication trial. I have been on Seroquel 150XR, Lithium 300,and recently added Pristiq 50. As of yesterday, I have begun Buproprion 150XR and increased my lithium from 300 to 900.
>
> My life has been a marginal one, always going in and out of life with the inability to work for the last 5 years after a divorce that brought me to my knees.
>
> I do not feel that my condition ever really improves for long and it is a constant battle to find meds that will help.
>
> I did recently have a genetic test done which isolated the meds that might be the best ones for me and they include MAOs which I have used quite often and many of the stimulants. I also take generic Adderall XR I forgot to say.
>
> So, all in all the battle has been long and frustrating. Many times I have almost given up.
I believe I can empathize. I too have struggled with major depression for over 30 years. You mentioned MAOIs. Have you and your psychiatrist tried a regimen of high dose MAOIs accompanied by a potentiating agent? Different MAOIs work differently for different patients, but they can require careful administration. Often, treatments are halted before truly exploring the therapeutic range. This is one example of where the FDA recommended dosages are set too low.
There are some good articles out there, as well as great information on this site.
(see, www.dr-bob.org/tips/split/MAOIs-in-high-doses-and-wi.html)
I have found that 140mg Parnate with ritalin and lithium to potentiate have been helpful when nothing else was.
I hope you find something that works for you.
This is the end of the thread.
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