![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 22 of 22. This is the beginning of the thread.
Posted by sweetmarie on July 29, 2001, at 4:18:21
I am a UK `visitor` to this site.
I belong to an organisation called `Fellowship of Depressives Anonymous` (FDA), which is a charity run by and for sufferers of depressive disorders (and their carers).
As a sufferer of so-called Treatment Resistant depression, I am hoping to put together an article about this condition for submission in the Newsletter. I`ve been meaning to do this for a few months now, but have been too ill and haven`t got round to doing it. An article in the last Newsletter has decided me to finally write this article.
The article is about the Vagus Nerve Stimulator, and it`s success for people with treatment resistant depression. I am aware of this treatment, and do not dispute it`s usefulness in the treatment of sufferers like myself (and would certainly not rule it out for my own treatment if it were appropriate).
The aspect of the article which I am seeking to dispute is the assertion that a certain percentage of sufferers can not be helped AT ALL by medications - "As many as 30% of those affected fail to respond to either drugs or ... electro-convulsive therapy". The article ends by pointing out that the Vagus Nerve Stimulator is effective for 40% of those who try it, which leaves "...about 10 - 15% of patients with depression who respond to absolutely nothing."
I am currently being treated at a specialist unit for patients with Treatment Resistant depression. Whilst the unit is careful to say that there are `no guarantees` that a medication (or combination of medications) or other form of treatment will `work`, the medical professionals - in particular the professor who is in charge of my treatment - are convinced that help can be found for ALL sufferers (which obviously includes the use of the Vagus Nerve Stimulator). For this reason, the professor prefers to refer to this condition as `difficult to treat` depression rather than `treatment resistant` depression, a term which suggests that NO treatment will ever be found.
It has been my experience that there IS a medication/combination of medications/other treatment options (VNS, ECT etc.) for everyone. As a sufferer of TR depression, I have done much research into the condition. By this I mean that I`ve read books, articles, spoken to other sufferers, trawled the Net and spoken with psychiatric proffessionals. The result of this has been that depression CAN be treated, but the uncertainty centres around `What?` (treatment) and `When?` (will this be found).
What I am looking for is input from fellow Dr Bob web-goers on this condition. Specifically:-
* Those who have proved difficult to treat, and their understanding of their condition;
* What medical professionals have said;
* Information gained from other `difficult to treat` sufferers (possibly from being in hospital/support groups etc.)
* Information gained from literature/articles/internet research. I`d be particularly interested in any websites.
I am going to approach my professor for a `quote` on the subject when I go back to hospital (tomorrow) so that I can include it. Meanwhile, ANY info would be TOTALLY gratefully received.
Thank you so much for reading this incredibly long post. I hope you can help.
Ta,
Anna.
p.s. Obviously, I also want to hear from those who have been told that they are `hopeless cases`, and about who exactly has told them that. I could be completely wrong, and there are those of us who are `hopeless cases`, but this is not what I have gathered, and - more importantly - I refuse to accept it and admit defeat.
Posted by JahL on July 29, 2001, at 6:40:06
In reply to TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by sweetmarie on July 29, 2001, at 4:18:21
> The aspect of the article which I am seeking to dispute is the assertion that a certain percentage of sufferers can not be helped AT ALL by medications - "As many as 30% of those affected fail to respond to either drugs or ... electro-convulsive therapy". The article ends by pointing out that the Vagus Nerve Stimulator is effective for 40% of those who try it, which leaves "...about 10 - 15% of patients with depression who respond to absolutely nothing."Hi.
We've spoken about this before. I've been classed an 'unhelpable case' by about 6 English pdocs now (& 1 American).
I've heard the 10-15% figure bandied around before. However before (English) pdocs start talking about 'treatment-resistance' they ought to define what constitutes 'treatment'. All the pdocs up to, but not including my present one, have been happy to brand me 'treatment-resistant' based upon non-response to SSRIs, TCAs & MAOIs. Well by my reckoning that would render 30-50% of depressives 'resistant' (ie lack of *remission*).
Fact is only APs & AEDs have helped at all so far & up until a month ago I was forced to order these over the Net.
Then you've got stimulants (which I had to fly to the US to get a trial of) & (more controversially) opioids. Of course there is no way UK pdocs will even consider either of these. But it's beyond me how pdocs can class you as T.R. w/o offering the full range of viable treatments.
Given our limited understanding of the brain it wouldn't surprise me if there existed a hard-core of 'Untreatables', but like y'self I don't like to be defeatist in my attitude. And I especially don't appreciate defeatism in pdocs, who seem particularly susceptible to it.
J.
Posted by sweetmarie on July 29, 2001, at 9:06:05
In reply to Re: TREATMENT RESISTANT DEPRESSION » sweetmarie, posted by JahL on July 29, 2001, at 6:40:06
> We've spoken about this before. I've been classed an 'unhelpable case' by about 6 English pdocs now (& 1 American).
>
> I've heard the 10-15% figure bandied around before. However before (English) pdocs start talking about 'treatment-resistance' they ought to define what constitutes 'treatment'. All the pdocs up to, but not including my present one, have been happy to brand me 'treatment-resistant' based upon non-response to SSRIs, TCAs & MAOIs. Well by my reckoning that would render 30-50% of depressives 'resistant' (ie lack of *remission*).
>
> Fact is only APs & AEDs have helped at all so far & up until a month ago I was forced to order these over the Net.
>
> Then you've got stimulants (which I had to fly to the US to get a trial of) & (more controversially) opioids. Of course there is no way UK pdocs will even consider either of these. But it's beyond me how pdocs can class you as T.R. w/o offering the full range of viable treatments.> Given our limited understanding of the brain it wouldn't surprise me if there existed a hard-core of 'Untreatables', but like y'self I don't like to be defeatist in my attitude. And I especially don't appreciate defeatism in pdocs, who seem particularly susceptible to it.
Hi Jah
I was wondering about you - glad to hear from you again.
I think that many (most) psychiatrists (and GPs for that matter) from this country are either limited in knowledge, limited in imagination, obstructive regarding patient input, or just plain useless. Or all of the above. This general attitude is one of the reasons behind my decision to write a feature on treatment resistant depression. Far too many sufferers are told that they are untreatable, precisely for the above reasons. What I want to do is to (hopefully) empower other depression sufferers NOT to accept this `diagnosis`. I`m lucky to have a psychiatrist who encourages my input, and also because I`m being treated by a specialist in TR depression (Professor Ferrier from the RVI, Newcastle). HE tells me that he will never run out of treatment options; i.e. there are so many meds/other types of treatment that probability dictates this.
A non-response to TCAs, MAOIs, and SSRIs ought not to render a sufferer `treatment resistant`, as it has done in your case. To me, it smacks of laziness on the part of the psychiatrist.
Medication treatments are being developed all the time, and advances are being made - not fast enough perhaps, but research is continuing. So, I find it very destructive for any psychiatrist/GP to label someone treatment resistant, because it simply can`t be known. And, whilst it can`t be known, it is surely better to remain positive than to tell someone that they cannot be helped.
I`m assuming that APs are anti-psychotics, but what are AEDs? Also, what are opoids?
You are right in what you say about our limited understanding of the brain. But again, this is being looked into more and more, and more and more is being understood. Also, there MAY be a number of `untreatables`, but we don`t know that for sure.
This country in general (i.e. your basic `man in the street`) is largely misinformed, and therefore tends to be wary/downright prejudiced when it comes to mental health issues. Also, the NHS services (treatments, psychiatrists, after care etc.) leave much to be desired. There is a LOT of room for improvement, and ... well, it makes me cross basically, but that`s a digression.
I suppose that part of what I want to do is de-mystify the whole area. I think, anyway.
O well - enough of that.
Thanks for replying. I hope that things are not too bad,
Anna.
P.S. Any further input still wanted. Please ...
Posted by virgil on July 29, 2001, at 14:41:40
In reply to TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by sweetmarie on July 29, 2001, at 4:18:21
> I am a UK `visitor` to this site.
>
> I belong to an organisation called `Fellowship of Depressives Anonymous` (FDA), which is a charity run by and for sufferers of depressive disorders (and their carers).
>
> As a sufferer of so-called Treatment Resistant depression, I am hoping to put together an article about this condition for submission in the Newsletter. I`ve been meaning to do this for a few months now, but have been too ill and haven`t got round to doing it. An article in the last Newsletter has decided me to finally write this article.
>
> The article is about the Vagus Nerve Stimulator, and it`s success for people with treatment resistant depression. I am aware of this treatment, and do not dispute it`s usefulness in the treatment of sufferers like myself (and would certainly not rule it out for my own treatment if it were appropriate).
>
> The aspect of the article which I am seeking to dispute is the assertion that a certain percentage of sufferers can not be helped AT ALL by medications - "As many as 30% of those affected fail to respond to either drugs or ... electro-convulsive therapy". The article ends by pointing out that the Vagus Nerve Stimulator is effective for 40% of those who try it, which leaves "...about 10 - 15% of patients with depression who respond to absolutely nothing."
>
> I am currently being treated at a specialist unit for patients with Treatment Resistant depression. Whilst the unit is careful to say that there are `no guarantees` that a medication (or combination of medications) or other form of treatment will `work`, the medical professionals - in particular the professor who is in charge of my treatment - are convinced that help can be found for ALL sufferers (which obviously includes the use of the Vagus Nerve Stimulator). For this reason, the professor prefers to refer to this condition as `difficult to treat` depression rather than `treatment resistant` depression, a term which suggests that NO treatment will ever be found.
>
> It has been my experience that there IS a medication/combination of medications/other treatment options (VNS, ECT etc.) for everyone. As a sufferer of TR depression, I have done much research into the condition. By this I mean that I`ve read books, articles, spoken to other sufferers, trawled the Net and spoken with psychiatric proffessionals. The result of this has been that depression CAN be treated, but the uncertainty centres around `What?` (treatment) and `When?` (will this be found).
>
> What I am looking for is input from fellow Dr Bob web-goers on this condition. Specifically:-
>
> * Those who have proved difficult to treat, and their understanding of their condition;
>
> * What medical professionals have said;
>
> * Information gained from other `difficult to treat` sufferers (possibly from being in hospital/support groups etc.)
>
> * Information gained from literature/articles/internet research. I`d be particularly interested in any websites.
>
> I am going to approach my professor for a `quote` on the subject when I go back to hospital (tomorrow) so that I can include it. Meanwhile, ANY info would be TOTALLY gratefully received.
>
> Thank you so much for reading this incredibly long post. I hope you can help.
>
> Ta,
>
> Anna.Hi Anna,
I don't know if this is something that you already have or might help but try:
http://www.musc.edu/psychiatry/fnrd/tms.htm
I believe they are doing some of the main research in this area in the US.
Virgil
Posted by JahL on July 29, 2001, at 15:15:06
In reply to Re: TREATMENT RESISTANT DEPRESSION » JahL, posted by sweetmarie on July 29, 2001, at 9:06:05
> I think that many (most) psychiatrists (and GPs for that matter) from this country are either limited in knowledge, limited in imagination, obstructive regarding patient input, or just plain useless. Or all of the above.All of the above. I don't have a lot of time or respect for the medical establishment.
> Far too many sufferers are told that they are untreatable, precisely for the above reasons. What I want to do is to (hopefully) empower other depression sufferers NOT to accept this `diagnosis`.
More power to you. Someone needs to increase awareness.
>I`m lucky to have a psychiatrist who encourages my input, and also because I`m being treated by a specialist in TR depression (Professor Ferrier from the RVI, Newcastle). HE tells me that he will never run out of treatment options.
Sounds like you've struck gold. I saw a Prof. @ the Maudsley. The arrogant, ignorant p**** was lucky I didn't knock him spark out when he told me to "stop smoking pot & get a job". His solution to a life-long (BP) depression. Fortunately (for him) I saw sense & just walked out.
> A non-response to TCAs, MAOIs, and SSRIs ought not to render a sufferer `treatment resistant`, as it has done in your case. To me, it smacks of laziness on the part of the psychiatrist.My sentiments entirely.
> I`m assuming that APs are anti-psychotics, but what are AEDs? Also, what are opoids?AEDs= Anti-Epileptic Drugs (mood stabilizers); Valproate & Lamotrigine for me.
Opioids= class of drugs comprising opiates & various synthetic derivatives. Or something like that. Elizabeth's yr expert on that one. Something I'm looking into.
> This country in general (i.e. your basic `man in the street`) is largely misinformed, and therefore tends to be wary/downright prejudiced when it comes to mental health issues.I think Brits are ignorant in most matters medical, but especially with rgds to mental health. Healthcare is a passive experience in the UK; we're given it on a plate. Our US counterparts seem much more informed on health matters & are more pro-active in seeking treatment. Probably has to do with aggressive drug company advertising & *choice*.
>Also, the NHS services (treatments, psychiatrists, after care etc.) leave much to be desired.
Our healthcare system, as it is at present positively encourages doctor laziness & complacency. Disgruntled patients don't have the option of going elsewhere & treatment expectations are deliberately lowered so that desperately under-funded hospitals can meet spurious govt. 'performance targets'. (Let's not forget also that mental illness can be costly to treat since treatment is often intensive & protracted. 'Better' to direct resources towards minor ops, giving multiple, *visible* results)
Kind of depressing in itself, huh?
Good luck in yr quest to enlighten (you'll need it!).
J.
Posted by virgil on July 29, 2001, at 15:16:59
In reply to TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by sweetmarie on July 29, 2001, at 4:18:21
Anna,
You also might try plugging in "Vagus Nerve Stimulation" in the search box at the top of the pscyho-babble page. I brought up 147 instances of it being discussed here. You might also try just VNS. It looks like there might be some information you might use. Additionally, try the links page it also has an extensive amount of other sources. Good luck,
Virgil
Posted by virgil on July 29, 2001, at 15:25:05
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by virgil on July 29, 2001, at 15:16:59
> Anna,
>
> You also might try plugging in "Vagus Nerve Stimulation" in the search box at the top of the pscyho-babble page. I brought up 147 instances of it being discussed here. You might also try just VNS. It looks like there might be some information you might use. Additionally, try the links page it also has an extensive amount of other sources. Good luck,
>
> VirgilOn second look there aren't that many posts relevant to vagus nerve stimulation.
Go to the search box at the top of Psycho Babble. Click under the box where it says "search with options". Then on the next page enter VNS, and check "all of the above" to include all postings from '98 on. It should yeild 38 posts. Try it again with "vagus nerve stimulation" in parantheses and you should get 31.
Hope this helps,
Virgil
Posted by PaulB on July 29, 2001, at 16:24:30
In reply to TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by sweetmarie on July 29, 2001, at 4:18:21
> I am a UK `visitor` to this site.
>
> I belong to an organisation called `Fellowship of Depressives Anonymous` (FDA), which is a charity run by and for sufferers of depressive disorders (and their carers).
>
> As a sufferer of so-called Treatment Resistant depression, I am hoping to put together an article about this condition for submission in the Newsletter. I`ve been meaning to do this for a few months now, but have been too ill and haven`t got round to doing it. An article in the last Newsletter has decided me to finally write this article.
>
> The article is about the Vagus Nerve Stimulator, and it`s success for people with treatment resistant depression. I am aware of this treatment, and do not dispute it`s usefulness in the treatment of sufferers like myself (and would certainly not rule it out for my own treatment if it were appropriate).
>
> The aspect of the article which I am seeking to dispute is the assertion that a certain percentage of sufferers can not be helped AT ALL by medications - "As many as 30% of those affected fail to respond to either drugs or ... electro-convulsive therapy". The article ends by pointing out that the Vagus Nerve Stimulator is effective for 40% of those who try it, which leaves "...about 10 - 15% of patients with depression who respond to absolutely nothing."
>
> I am currently being treated at a specialist unit for patients with Treatment Resistant depression. Whilst the unit is careful to say that there are `no guarantees` that a medication (or combination of medications) or other form of treatment will `work`, the medical professionals - in particular the professor who is in charge of my treatment - are convinced that help can be found for ALL sufferers (which obviously includes the use of the Vagus Nerve Stimulator). For this reason, the professor prefers to refer to this condition as `difficult to treat` depression rather than `treatment resistant` depression, a term which suggests that NO treatment will ever be found.
>
> It has been my experience that there IS a medication/combination of medications/other treatment options (VNS, ECT etc.) for everyone. As a sufferer of TR depression, I have done much research into the condition. By this I mean that I`ve read books, articles, spoken to other sufferers, trawled the Net and spoken with psychiatric proffessionals. The result of this has been that depression CAN be treated, but the uncertainty centres around `What?` (treatment) and `When?` (will this be found).
>
> What I am looking for is input from fellow Dr Bob web-goers on this condition. Specifically:-
>
> * Those who have proved difficult to treat, and their understanding of their condition;
>
> * What medical professionals have said;
>
> * Information gained from other `difficult to treat` sufferers (possibly from being in hospital/support groups etc.)
>
> * Information gained from literature/articles/internet research. I`d be particularly interested in any websites.
>
> I am going to approach my professor for a `quote` on the subject when I go back to hospital (tomorrow) so that I can include it. Meanwhile, ANY info would be TOTALLY gratefully received.
>
> Thank you so much for reading this incredibly long post. I hope you can help.
>
> Ta,
>
> Anna.
>
> p.s. Obviously, I also want to hear from those who have been told that they are `hopeless cases`, and about who exactly has told them that. I could be completely wrong, and there are those of us who are `hopeless cases`, but this is not what I have gathered, and - more importantly - I refuse to accept it and admit defeat.Hi,
I had a thorough read through your post and the responses it has received because it interested me. You seem to have done a lot of research and Im not sure anything I say will be new to you other than my own persoanl experiences but I hope I can help you.
I am from the UK too and have gone through the NHS for treatment of depression and anxiety.
On first going to your GP in the UK I believe it is common practise for him/her to prescribe an SSRI. If the person does not respond then the GP can maximise the dose. When I relapsed on Paroxetine and did not respond to an increase in dose up to 40 mg I was switched to Venlafaxine. I responded but then relapsed again.At this point my GP considered me treatment-resistant and made a referal for me to see an NHS psychiatrist. As a GP I guess it wasnt his job to treat a person, like me who obviously needed specialist care and also he couldnt prescribe some of the drugs I thought were options at this stage-Moclobemide(Manerix) and l-Tryptophan(Optimax) . He mentioned that he thought treatment-resistant depression is serious because the success rate of treatment becomes lower after a patient has relapsed.
If I were writing an article about treamtnet-resistant depression I would consider the followiing factors to be worthy of criteria for determining a treatment-resistant case:
-Unresponsive/relapse on SSRI and after an increase in dose of SSRI
-Further non responsive/relapse on a dual acting antidepressant-TCA, Venlafaxine, Mirtazapine
or/and MAOI.
-Non response to psychotherapy alone, or in combination with antidepressant treatment
-Further non response/relapse when given augmentation strategies to potentiate antidepressants-Pinodol, lithium, tryptophan, atypical antipsychotics
-Unresponsive to ECT or VNSAs you have trawled the internet Im sure you have come across Dr Ivans Depression Central which contain new, good information on VNS as well as treatment-resistant depression:
http://www.psycom.net/depression.central.html
As for going about getting treatment for treatment-resistant depression in the UK I got the impression after I saw the NHS psychiatrist that it was out of the NHS's hands. If I wanted help then I had to see a private psychiatrist. The NHS psychiatrist was very limited in his options available to me-'we could try another SSRI'. I got the impression that he had many patients to see on the NHS.
Good luck with the article
PaulB
Posted by sweetmarie on July 29, 2001, at 18:15:27
In reply to Re: TREATMENT RESISTANT DEPRESSION » sweetmarie, posted by JahL on July 29, 2001, at 15:15:06
I saw a Prof. @ the Maudsley. The arrogant, ignorant p**** was lucky I didn't knock him spark out when he told me to "stop smoking pot & get a job". His solution to a life-long (BP) depression. Fortunately (for him) I saw sense & just walked out.
That`s outrageous. I thought that the Maudsley were the `other` establishment for TR depression in the UK (the Royal Victoria Infirmary being the other. The unit where my sister works - in Cambridge - used to have a couple of beds for TR depression, but that folded when the prof there left). I was considering going there, but I`m glad that I didn`t. Un-f***ing-believable.
Anti-Epileptic Drugs (mood stabilizers); Valproate & Lamotrigine for me.
I am taking Lamotragine as part of my treatment (Venlafaxine/Mirtazapine/Lamotragine). I was hoping that the Lamotragine would do the trick on it`s own but no such luck.
Opioids= class of drugs comprising opiates & various synthetic derivatives. Or something like that.
Well, that`s never going to be `allowed` in this country.
Our healthcare system, as it is at present positively encourages doctor laziness & complacency. Disgruntled patients don't have the option of going elsewhere & treatment expectations are deliberately lowered so that desperately under-funded hospitals can meet spurious govt. 'performance targets'. (Let's not forget also that mental illness can be costly to treat since treatment is often intensive & protracted. 'Better' to direct resources towards minor ops, giving multiple, *visible* results)
Kind of depressing in itself, huh?
I totally agree. It`s a shambles and completely unacceptable.
Good luck in yr quest to enlighten (you'll need it!).
You`re not wrong.
Thanks,
Anna.
Posted by sweetmarie on July 29, 2001, at 18:26:20
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by PaulB on July 29, 2001, at 16:24:30
> I am from the UK too and have gone through the NHS for treatment of depression and anxiety.
> On first going to your GP in the UK I believe it is common practise for him/her to prescribe an SSRI. If the person does not respond then the GP can maximise the dose. When I relapsed on Paroxetine and did not respond to an increase in dose up to 40 mg I was switched to Venlafaxine. I responded but then relapsed again.Yes, I believe that`s the reccommended `sequence` of events. I don`t think that all GPs operate that way, though.
> At this point my GP considered me treatment-resistant and made a referal for me to see an NHS psychiatrist. As a GP I guess it wasnt his job to treat a person, like me who obviously needed specialist care and also he couldnt prescribe some of the drugs I thought were options at this stage-Moclobemide(Manerix) and l-Tryptophan(Optimax) . He mentioned that he thought treatment-resistant depression is serious because the success rate of treatment becomes lower after a patient has relapsed.
Not very encouraging - or even strictly accurate.
> If I were writing an article about treamtnet-resistant depression I would consider the followiing factors to be worthy of criteria for determining a treatment-resistant case:
> -Unresponsive/relapse on SSRI and after an increase in dose of SSRI
> -Further non responsive/relapse on a dual acting antidepressant-TCA, Venlafaxine, Mirtazapine
> or/and MAOI.
> -Non response to psychotherapy alone, or in combination with antidepressant treatment
> -Further non response/relapse when given augmentation strategies to potentiate antidepressants-Pinodol, lithium, tryptophan, atypical antipsychotics
> -Unresponsive to ECT or VNSYes, I agree. And even then I don`t believe that the psychiatrist should `write off` a patient. My first psychiatrist informed me that there was `nothing further` he could do for me. This was after the failure of Imipramine, Lithium and ECT. I was totally devastated. Luckily, my GP helped me to change psychiatrists.
> As you have trawled the internet Im sure you have come across Dr Ivans Depression Central which contain new, good information on VNS as well as treatment-resistant depression:
>
> http://www.psycom.net/depression.central.html
>
> As for going about getting treatment for treatment-resistant depression in the UK I got the impression after I saw the NHS psychiatrist that it was out of the NHS's hands.Complete rubbish. I was referred to the RVI by my psychiatrist. It`s NHS run, and available for all treatment resistant patients (and very good).
Then I had to see a private psychiatrist. The NHS psychiatrist was very limited in his options available to me-'we could try another SSRI'. I got the impression that he had many patients to see on the NHS.
Probably. No excuse, though. >
Thanks for replying and good luck in the future.
Anna.
Posted by sweetmarie on July 29, 2001, at 18:28:48
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by virgil on July 29, 2001, at 15:25:05
Virgil
Thanks for taking the time to respond to my post. It`s all very helpful.
Cheers,
Anna.
Posted by susan C on July 29, 2001, at 22:01:12
In reply to TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by sweetmarie on July 29, 2001, at 4:18:21
Hi, I have kept an eye for your posts, not too long ago, you sounded so sad. I am glad to hear the change and challenge in your 'voice'. Here are my contributions:
I am in the US
I have had been dx as 'chronic clinical depression' then bipolarII. I think it sounds like in UK they may say more quickly you are resistant on the GP level. Here I got referred to pdoc by Gynocologist when I was searching for answers to PMS in the late 80's and she discovered I was clinically depressed and referred me to pdoc who was the only one in town who dealt with the 'biochemical causes of depression' I never went to my gp for treatment. When I got exasperated with pdoc as not investigating enough after 12 years and him thinking my manic times were when I was 'doing good' (I live in small town) I changed pdocs. Now I travel 1 1/2 hours to see new doc.
After listening very carefully, and identifying genetic and possible seizure like disorder, my new pdoc started trials on AED. I have tried 4. The last was Depakote. Which has kind of worked. As a result, he has said, you have something, maybe not bipolar, but something isn't right with your brain. He doesn't think it is thyroid, it has a 5% chance of being MS. My pdoc suggested VNS as my symptoms indicate a possible seizure like disorder and that the VNR has been used successfully on 10,000 people with refractory Epilepsy. When I think about that, that is pretty impressive, considering how debilitating Epilepsy is. Depakote has kind of worked and I just posted a thread on starting Keppra, a new AED, levetiracetam. Earlier on this board I posted a query about left/right brain communication and studies that have been done on that and in general understanding how the brain works. http://www.dr-bob.org/babble/20010725/msgs/71977.html
We still have a black box here. There has not been enough study to say..if you have these symptoms and you do this then your brain changes this way. I think some day that may happpen. Question: have they done PET/MRI/SPECT studies on VNR patients? He said, based on my depression score (?) I would qualify for a trail of VNS at the University of Washington (State, in Seattle, WA) being directed by Dr. David Dunner. I have not investigated it, as I do not want to go through an operation. I want to try medications first. And like your pdoc, my pdoc says, there are always new ones to try.
In the other posts, descriptions of the illness and what treatment resistant means, may be different in UK that US. There are many sites (depressioncentral) that have the official DM something something.
I hope this has been of help. I am a little confused at the moment. Good luck with your article. Post it here, please?
> I am a UK `visitor` to this site.
>
> I belong to an organisation called `Fellowship of Depressives Anonymous` (FDA), which is a charity run by and for sufferers of depressive disorders (and their carers).
>
> As a sufferer of so-called Treatment Resistant depression, I am hoping to put together an article about this condition for submission in the Newsletter. I`ve been meaning to do this for a few months now, but have been too ill and haven`t got round to doing it. An article in the last Newsletter has decided me to finally write this article.
>
> The article is about the Vagus Nerve Stimulator, and it`s success for people with treatment resistant depression. I am aware of this treatment, and do not dispute it`s usefulness in the treatment of sufferers like myself (and would certainly not rule it out for my own treatment if it were appropriate).
>
> The aspect of the article which I am seeking to dispute is the assertion that a certain percentage of sufferers can not be helped AT ALL by medications - "As many as 30% of those affected fail to respond to either drugs or ... electro-convulsive therapy". The article ends by pointing out that the Vagus Nerve Stimulator is effective for 40% of those who try it, which leaves "...about 10 - 15% of patients with depression who respond to absolutely nothing."
>
> I am currently being treated at a specialist unit for patients with Treatment Resistant depression. Whilst the unit is careful to say that there are `no guarantees` that a medication (or combination of medications) or other form of treatment will `work`, the medical professionals - in particular the professor who is in charge of my treatment - are convinced that help can be found for ALL sufferers (which obviously includes the use of the Vagus Nerve Stimulator). For this reason, the professor prefers to refer to this condition as `difficult to treat` depression rather than `treatment resistant` depression, a term which suggests that NO treatment will ever be found.
>
> It has been my experience that there IS a medication/combination of medications/other treatment options (VNS, ECT etc.) for everyone. As a sufferer of TR depression, I have done much research into the condition. By this I mean that I`ve read books, articles, spoken to other sufferers, trawled the Net and spoken with psychiatric proffessionals. The result of this has been that depression CAN be treated, but the uncertainty centres around `What?` (treatment) and `When?` (will this be found).
>
> What I am looking for is input from fellow Dr Bob web-goers on this condition. Specifically:-
>
> * Those who have proved difficult to treat, and their understanding of their condition;
>
> * What medical professionals have said;
>
> * Information gained from other `difficult to treat` sufferers (possibly from being in hospital/support groups etc.)
>
> * Information gained from literature/articles/internet research. I`d be particularly interested in any websites.
>
> I am going to approach my professor for a `quote` on the subject when I go back to hospital (tomorrow) so that I can include it. Meanwhile, ANY info would be TOTALLY gratefully received.
>
> Thank you so much for reading this incredibly long post. I hope you can help.
>
> Ta,
>
> Anna.
>
> p.s. Obviously, I also want to hear from those who have been told that they are `hopeless cases`, and about who exactly has told them that. I could be completely wrong, and there are those of us who are `hopeless cases`, but this is not what I have gathered, and - more importantly - I refuse to accept it and admit defeat.
Posted by ChrisK on July 30, 2001, at 3:29:25
In reply to TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by sweetmarie on July 29, 2001, at 4:18:21
Anna,
I am 38 and have spent most of my adult life sufferring from depression. I got to the point when I thought it was untreatable and I would succomb to a suicide attempt that didn't fail. After one such failed attempt I found a pdoc who worked with me on a weekly/monthly basis to find the right meds.
I found Zyprexa (AP) to get rid of the constant nasty thought s of suicide. And much later I found Mirapex to get rid of the anhedonia/apathy that were a great part of my life. It was a struggle through many years but I feel like I have my life back now.
If it weren't for sites like Dr. Bob's I don't know if I would have found the right combination for me. After too many years of failure I was ready to give up (and tried) but now I have been able to come around thanks to the medicine. I think there is hope because I made it through. Others can do the same, it's just a matter of time and energy.
Chris
Posted by sweetmarie on July 30, 2001, at 9:19:38
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by susan C on July 29, 2001, at 22:01:12
> Hi, I have kept an eye for your posts, not too long ago, you sounded so sad. I am glad to hear the change and challenge in your 'voice'. Here are my contributions:
>
> I am in the US
>
> I have had been dx as 'chronic clinical depression' then bipolarII. I think it sounds like in UK they may say more quickly you are resistant on the GP level. Here I got referred to pdoc by Gynocologist when I was searching for answers to PMS in the late 80's and she discovered I was clinically depressed and referred me to pdoc who was the only one in town who dealt with the 'biochemical causes of depression' I never went to my gp for treatment. When I got exasperated with pdoc as not investigating enough after 12 years and him thinking my manic times were when I was 'doing good' (I live in small town) I changed pdocs. Now I travel 1 1/2 hours to see new doc.
>
> After listening very carefully, and identifying genetic and possible seizure like disorder, my new pdoc started trials on AED. I have tried 4. The last was Depakote. Which has kind of worked. As a result, he has said, you have something, maybe not bipolar, but something isn't right with your brain. He doesn't think it is thyroid, it has a 5% chance of being MS. My pdoc suggested VNS as my symptoms indicate a possible seizure like disorder and that the VNR has been used successfully on 10,000 people with refractory Epilepsy. When I think about that, that is pretty impressive, considering how debilitating Epilepsy is. Depakote has kind of worked and I just posted a thread on starting Keppra, a new AED, levetiracetam. Earlier on this board I posted a query about left/right brain communication and studies that have been done on that and in general understanding how the brain works. http://www.dr-bob.org/babble/20010725/msgs/71977.html
>
> We still have a black box here. There has not been enough study to say..if you have these symptoms and you do this then your brain changes this way. I think some day that may happpen. Question: have they done PET/MRI/SPECT studies on VNR patients? He said, based on my depression score (?) I would qualify for a trail of VNS at the University of Washington (State, in Seattle, WA) being directed by Dr. David Dunner. I have not investigated it, as I do not want to go through an operation. I want to try medications first. And like your pdoc, my pdoc says, there are always new ones to try.
>
> In the other posts, descriptions of the illness and what treatment resistant means, may be different in UK that US. There are many sites (depressioncentral) that have the official DM something something.
>
> I hope this has been of help. I am a little confused at the moment. Good luck with your article. Post it here, please?Hi Susan
Thank you for replying and sharing your experiences - and thanks for looking out for my posts too. I think that I`m feeling quite angry at the moment, which is often a good motivator (I find).
All the info you`ve given me is useful. I`ll certainly post the article (IF I manage to get it finished in time for the deadline, which is 5th August - 6 days` time).
Keep up the fight.
Love,
Anna.
Posted by sweetmarie on July 30, 2001, at 9:59:20
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by ChrisK on July 30, 2001, at 3:29:25
> I am 38 and have spent most of my adult life sufferring from depression. I got to the point when I thought it was untreatable and I would succomb to a suicide attempt that didn't fail. After one such failed attempt I found a pdoc who worked with me on a weekly/monthly basis to find the right meds.
>
> I found Zyprexa (AP) to get rid of the constant nasty thought s of suicide. And much later I found Mirapex to get rid of the anhedonia/apathy that were a great part of my life. It was a struggle through many years but I feel like I have my life back now.
>
> If it weren't for sites like Dr. Bob's I don't know if I would have found the right combination for me. After too many years of failure I was ready to give up (and tried) but now I have been able to come around thanks to the medicine. I think there is hope because I made it through. Others can do the same, it's just a matter of time and energy.Chris
Thanks for replying. Sounds like you`ve had a rough time, too. I don`t know about you but I feel like I`ve missed out on a really important period of my life (i.e. my mid to late 20s, and early 30s - so far, I`m 34 now). But, I`m pleased to hear that things are better for you now.
I think that a good psychiatrist (one that will work WITH you and not autocratically) is absolutely essential. I don`t know where you live, but in this country (UK) good psychiatrists are few and far between. I really am very lucky to have such a good one.
Dr Bob`s site was a real `find` for me too. I don`t think that I`ll go far wrong as long as I`m still in regular contact.
Thanks a lot,
Anna.
Posted by JohnL on July 31, 2001, at 4:33:20
In reply to TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by sweetmarie on July 29, 2001, at 4:18:21
Disclaimer, mileage varies. However, in my experience, treatment resistant depression usually means the doc and the patient are barking up the wrong tree. In other words, they are trying drugs in the wrong category.
It's a hit-and-miss game, since we all have unique chemistries, unique problems in those chemistries, unique genes, unique personality and circumstances. Based on what I have seen in others over the years, based on exhaustive research, and based on this board, the highest potential for success in TRD involvs combinations of any of these:
Prozac
Zyprexa
Adrafinil
Amisulpride
Risperdal
Forget everything else until these have been exhausted. My TDR has been successfully treated with 20mg Prozac + 5mg Zyprexa + 300mg Adrafinil. It is worth noting that while these drugs are working miracles for me, they are doing so at the minimum doses. It's just my opinion, but the farther away a drug is from treating the true underlying problem, the higher the dose is required. The closer it is to the real problem, the lower the dose.
John
Posted by Lorraine on August 1, 2001, at 10:46:03
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by JohnL on July 31, 2001, at 4:33:20
> Disclaimer, mileage varies. However, in my experience, treatment resistant depression usually means the doc and the patient are barking up the wrong tree. In other words, they are trying drugs in the wrong category.
>
> It's a hit-and-miss game, since we all have unique chemistries, unique problems in those chemistries, unique genes, unique personality and circumstances. Based on what I have seen in others over the years, based on exhaustive research, and based on this board, the highest potential for success in TRD involvs combinations of any of these:
> Prozac
> Zyprexa
> Adrafinil
> Amisulpride
> Risperdal
> Forget everything else until these have been exhausted. My TDR has been successfully treated with 20mg Prozac + 5mg Zyprexa + 300mg Adrafinil. It is worth noting that while these drugs are working miracles for me, they are doing so at the minimum doses. It's just my opinion, but the farther away a drug is from treating the true underlying problem, the higher the dose is required. The closer it is to the real problem, the lower the dose.
> John
John: Just want to say it's nice to see a success story and to see you still giving on the board. When I read your posts it makes me happy. I had a partial response to prozac years ago--I'm reluctant to go back on it because it takes so long to go off it. Also my pdoc is not yet at the point where he'd be willing to try Adrafinil. (He may get there--we still have some major drug classes to work thru--I'm on Parnate now, day 2). Still, I keep your little recipe for success in the back of my mind and appreciate your posts. :-)
Posted by Zo on August 1, 2001, at 18:08:13
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by JohnL on July 31, 2001, at 4:33:20
John L - First, thanks for being on this board! I read you a lot!
Maybe I asked you this in another thread, but what would you advise for someone who did magnificently well on Zyprexa, but for whom the weight gain and blood sugar problems forced me to go off it? My pdoc and I are currently combing the web, thinking about Zyprexa and Glucophage. Both Geodon and Ripserdal made me unpleasantly fatigued and dopey, during first week, so didn't continue.
Am presently on Dex (happily, long term,) Effexor, and now, without Zyprexa, need trazadone & a benzo to sleep. This is 3rd week of Omega-3 trial for BPII, so far nothing much. Don't tolerate TCAs, SSRIs or Prozac, allergic to Wellbutrin. Other dxs: ADD, TLE and CFS.
My head was the clearest ever, with Zyprexa.
Do you see Adrafinil as a possiblity, in this mix? Any other med suggestions? Am willing to import!
Thanks so much,
Zo
Posted by Zo on August 1, 2001, at 18:10:43
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by JohnL on July 31, 2001, at 4:33:20
np
Posted by JohnL on August 2, 2001, at 5:19:08
In reply to Re: John L - long » JohnL, posted by Zo on August 1, 2001, at 18:08:13
Hi Zo,
My first hunch would be to try to deal with Zyprexa again. And have your doctor work with you on the blood sugar issue. The longer you take it the less the side effects should become. I understand though if that is not an acceptable option. Risperdal is a good subsitute, but the trick is to stick with very low doses, like in the .25mg to 1mg range. If your doses were higher than that, there is the possibility you could go back and try Risperdal again at these low doses.It would require some time consuming creative online searching, but Amisulpride or Sulpriride would be good candidates. They are hard to get though without a prescription.
I always suggest Adrafinil and have a lot of faith in it. That's because most people who try it end up liking it. Like all meds, there have been some failures with it however. But for the most part it has proven much more useful at this board to a lot of people than all the regular USA psychiatric meds we talk about. So I would definitely keep Adrafinil on your radar screen.
But based on your response, I think the best bet would be to try to figure out a way to work with Zyprexa. If that just can't be, then the other options are worth exploring.
John> John L - First, thanks for being on this board! I read you a lot!
>
> Maybe I asked you this in another thread, but what would you advise for someone who did magnificently well on Zyprexa, but for whom the weight gain and blood sugar problems forced me to go off it? My pdoc and I are currently combing the web, thinking about Zyprexa and Glucophage. Both Geodon and Ripserdal made me unpleasantly fatigued and dopey, during first week, so didn't continue.
>
> Am presently on Dex (happily, long term,) Effexor, and now, without Zyprexa, need trazadone & a benzo to sleep. This is 3rd week of Omega-3 trial for BPII, so far nothing much. Don't tolerate TCAs, SSRIs or Prozac, allergic to Wellbutrin. Other dxs: ADD, TLE and CFS.
>
> My head was the clearest ever, with Zyprexa.
>
> Do you see Adrafinil as a possiblity, in this mix? Any other med suggestions? Am willing to import!
>
> Thanks so much,
> Zo
Posted by Zo on August 2, 2001, at 22:46:25
In reply to Re: Zo, posted by JohnL on August 2, 2001, at 5:19:08
> Hi Zo,
> My first hunch would be to try to deal with Zyprexa again. And have your doctor work with you on the blood sugar issue. The longer you take it the less the side effects should become. I understand though if that is not an acceptable option. Risperdal is a good subsitute, but the trick is to stick with very low doses, like in the .25mg to 1mg range. If your doses were higher than that, there is the possibility you could go back and try Risperdal again at these low doses.
>
> It would require some time consuming creative online searching, but Amisulpride or Sulpriride would be good candidates. They are hard to get though without a prescription.
>
> I always suggest Adrafinil and have a lot of faith in it. That's because most people who try it end up liking it. Like all meds, there have been some failures with it however. But for the most part it has proven much more useful at this board to a lot of people than all the regular USA psychiatric meds we talk about. So I would definitely keep Adrafinil on your radar screen.
>
> But based on your response, I think the best bet would be to try to figure out a way to work with Zyprexa. If that just can't be, then the other options are worth exploring.
> John
>
> > John L - First, thanks for being on this board! I read you a lot!
> >
> > Maybe I asked you this in another thread, but what would you advise for someone who did magnificently well on Zyprexa, but for whom the weight gain and blood sugar problems forced me to go off it? My pdoc and I are currently combing the web, thinking about Zyprexa and Glucophage. Both Geodon and Ripserdal made me unpleasantly fatigued and dopey, during first week, so didn't continue.
> >
> > Am presently on Dex (happily, long term,) Effexor, and now, without Zyprexa, need trazadone & a benzo to sleep. This is 3rd week of Omega-3 trial for BPII, so far nothing much. Don't tolerate TCAs, SSRIs or Prozac, allergic to Wellbutrin. Other dxs: ADD, TLE and CFS.
> >
> > My head was the clearest ever, with Zyprexa.
> >
> > Do you see Adrafinil as a possiblity, in this mix? Any other med suggestions? Am willing to import!
> >
> > Thanks so much,
> > Zo
Posted by sweetmarie on August 3, 2001, at 16:07:29
In reply to Re: TREATMENT RESISTANT DEPRESSION - INFO NEEDED, posted by JohnL on July 31, 2001, at 4:33:20
To Everyone
Thanks for all your input - it`s been dead helpful.
I will say that which meds/combos chosen for each individual is `shaped` to an extent by their psychiatrists, and what experiences their psychiatrists have had in the past (with different meds). This is why it`s ESSENTIAL for sufferers of TR depression to find (and stick with) good and `progressive` psychiatrists. They are pretty thin on the ground (well, they are in this country anyway).
Thanks again,
Anna.
p.s. as it`s one day away from the closing date for news articles (in the newsletter), I don`t reckon I`ll get mine in on time. This is actually good in a way, because I`ll be able to put more thought into it, and hopefully get more info.
SO ... any more views/feedback/stories still gratefully received.
This is the end of the thread.
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