ISEPP Conference -- Oct. 28-29, 2011

[Barbarannamated]

I am planning to be at this conference in LA this weekend. Is anyone else going to be there or have any recommendations for people/sessions to see? I've communicated w the current head of the organization, Al Galves, and he suggested I hear Robert Whitaker (already planned!), Jeff Lacasse, David Cohen, and Jonathon Leo.

 

Barb

[compsports]

I am planning to be at this conference in LA this weekend. Is anyone else going to be there or have any recommendations for people/sessions to see? I've communicated w the current head of the organization, Al Galves, and he suggested I hear Robert Whitaker (already planned!), Jeff Lacasse, David Cohen, and Jonathon Leo.

 

Barb

 

I am so jealous:)

 

Have a great time. By the way, when I looked at the list of speakers, I would have had a hard time choosing. But I think I would have made the choices that you did.

 

CS

 

PS - Isn't Cohen, Peter Breggin's co-authors on one of his books? In light of Breggin's split from the organization, that is ironic

[Altostrata]

Please say hello to Bob Whitaker, Mark Foster, and Amy Smith on behalf of SurvivingAntidepressants.org and in general let people know we're here!

[jake]

Barb, I will be at ISEPP on Saturday. Maybe we can attend a lecture or do lunch, if you wouldn't be embarrassed.

[jake]

Barb, Jacqueline Sparks, who is speaking today at ISEPP Conference, teaches a great class on' Outcome informed approaches to change'. It sounds like your husband would benefit by attending. Would he be give her ideas a chance?

[Barbarannamated]

Jake,

Thanks for the suggestion about Jacqueline Sparks. So many great speakers...hard to choose!

Not sure of my schedule for rest of today/Sat, but will be at panel discussion at 3:15.

Barb

[jake]

Isepp conference showed me that there are some drs willing to talk publicly about the over-prescribing,side-affects,and withdrawal affects of psych meds. However there was a lot of people saying the same things without anyone ( that I heard ) saying what they feel can be done to ease the problem. I appreciate the speakers standing up and addressing these issues,but they need to go one step further. I wasn't able to attend the open discussions on Saturday but when I did attend on Friday I was able to speak about the frustration that people feel about the lack of acknowledgement or care for those of us undergoing w/d symptoms. This is part of our lives each day yet they tend to act as if w/d will not take long and will not have any major affects. BS!!! Lets admit w/d exists and that there should be a treatment plan for each w/d for each med on the market.

[jake]

Barb, Sorry I didn't get to meet you at the conference. I didn't check my phone until later Saturday afternoon. You write with a great deal of knowledge on this subject.Did you discuss what was said at the conference with your husband? Does he help you with your research ? Did you go to the dinner?

[Altostrata]

Thanks for the info, jake.

 

What I would like to do is contact each of the MDs concerned about withdrawal, add them to our resources list, and get them into a private conference to discuss tapering techniques.

 

I could sure use some help with contacting the doctors! If you'd like to help, let me know.

 

Which doctors were concerned?

[jake]

Alto, The drs that seemed concerned were Keith Hoeller,David Stein,Randy Cima,Maryann Krikorian. Each seemed to address the issues directly either in their presentations or when asked about them.

[Altostrata]

Thanks, jake. If anyone would send me their e-mail addresses in pms, that would be very helpful.

[Altostrata]

jake or Bar, can you recall what the doctors said about withdrawal in more detail?

[Barbarannamated]

Jill Littrell, PhD, has alot going on. Spoke w her quite a bit although I missed her talk to hear Mark Foster. Jill is going to send me her slides. She's doing research w immune/endocrine system involvement in depression.

 

Joseph Tarantolo, MD, was not only disappointing, but infuriating! He's Chairman and gave closing remarks after upbeat message by David Oaks. Tarantolo asked if anyone was pissed off (as people are ready to leave). No response. Then David said something general as if to divert attention from Tarantalo. Tarantolo comes back with 'well, I talked to someone who is pissed--a nurse practitioner who said the conference didnt address the problems when discontinuing meds.' Okay...this got my attention. Keep in mind, half the crowd is gone by now and most others ate packing up.

Tarantolo goes on to say that this is his specialty in Washington DC and he's come to conclusion that it may not be possible for some people to ever DC and recover due to the damage of long term use. Then he just walked off stage, end of conference. I was stunned and, naturally, hunted him down immediately. WTF kind of bombshell is that to drop as a closing remark??! A few people were gathered around him asking about his earlier talk about 'healing in groups' as his wife was signaling him to break away for dinner engagement. I asked for explanation for the last comment b/c I know many people having a tough time with antidepressant withdrawal and DC.

His reply: "I was referring to long term AP use... such dirty drugs, cause decrease in brain mass and, I dunno, that vant be aa good thing.... there's not a problem w ADs.... oh, there's my wife, gotta run...thanks for coming" and he was gone! I was stunned. I'll definitely be letting ISEPP know my feelings on that when I collect them. That was wrong in so many ways.

 

On a good note, I talked with Robert Whitaker for a few minutes. Told him my feelingds that these drugs have to be talked about as the multi system, full body neurohormones that they are. The information must get directly into the hands of the front line treaters and specialties that are using them based on psychiatry saying they are safe (and havent bothered to correct) This cannot just be discussed and debated w/I the MH community, most of whom can't prescribe or are ensconsed in academia, and expect changes to take place. 70% of ADs are being prescribed by PCPs, Peds, OB/GYN, pain med (as you all know) and they still think they're oh-so-safe. I believe some have gotten the message that they're not as effective as once thought, but w/o knowing the risks, they'll continue to use 'just in case' while they unknowingly 'remodel' people's entire neuroendocrone system. Robert did say that he believes SS/NRIs will be shown to be much more problematic in near future. I voiced my opinion that the ones perceived to be safe are most insidious problem b/c of that perception. Dangers of APs are documented and awareness is increasing which leads to some caution.

 

I wasn't impressed by Sinaikin, although he did make a good point about the split btwn psychiatry and neurology..."as soon as a behavioral disorder can be caught on film or lab tested, it falls under domain of Neurology."

 

It was a good conference with incredible knowledge. As Jake mentioned, the action plan is lacking, IMHO.

 

Many kudos from Robert, Mark Foster and others for your work here, Alto!

[Barbarannamated]

Alto,

I may have missed points within talks I didnt attend, but there was very little mention of w/d and the overwhelming perception seems to be that it is difficult w APs and minimal w ADs. Mark Foster talked the most about it. He says he wd the most toxic agent 1st, the AP. Decreases by 10-25% every 2 weeks. Talked lifestyle changes, etc. It was a small portion of his 45 minutes. There were no talks dedicated to WD issues. All talks were very rushed w little Q&A.

[compsports]

Alto,

I may have missed points within talks I didnt attend, but there was very little mention of w/d and the overwhelming perception seems to be that it is difficult w APs and minimal w ADs. Mark Foster talked the most about it. He says he wd the most toxic agent 1st, the AP. Decreases by 10-25% every 2 weeks. Talked lifestyle changes, etc. It was a small portion of his 45 minutes. There were no talks dedicated to WD issues. All talks were very rushed w little Q&A.

 

Barb and Jake,

 

Thank you for your updates and for letting these folks know that they aren't going far in enough in speaking about withdrawal.

 

How the heck did they decide that withdrawal from ADs is minimal?

 

WTF, tapering an AP by 10-25% every two weeks? These drugs may need to be tapered as slowly as 2.5 to 5% every 4 to 8 weeks.

 

I love Dr. Foster but in my opinion, that would be a way too fast taper for many people.

 

Great conversation with Bob.

 

CS

[Altostrata]

I'm getting a feel for the terrain. There's nothing there. Good news is, we're pioneers and we can figure it out as we go along.

 

Next year, we'll focus the conference on withdrawal. This is still such a big black hole and so needed in the real world!

 

Okay, let's start recruiting doctors to be withdrawal resources for people visiting this site. We'll train them if necessary in a private conference for this very purpose.

 

Can you guys reach out to folks from the conference? Here's a suggestion of what to write them:

 

Hello, Dr. ____ :

 

I belong to a peer support Web site for antidepressant withdrawal, http://SurvivingAntidepressants.org. Many of our community are suffering from withdrawal syndrome brought on by too-fast tapering and weird regimens involving alternating dosages directed by their doctors. The symptoms of discontinuation syndrome are consequently ignored.

 

Our members are from all over the world.

 

We are looking for doctors who will help patients taper slowly, if necessary, and who will recognize withdrawal symptoms and taper even slower if need be. We would like to post their names and contact information here: http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/

 

Please let me know if you can recommend any doctors to help taper patients off psychiatric drugs.

 

Thank you,

 

[your moniker here]

 

 

Please adapt this as you'd like.

[jake]

Of the speakers I attended w/d was mentioned in passing but that was about it.Maryann Krikorian was asked about w/d and she said she believes w/d is not only common but just as big a problem for some as their original diagnosis. That was it. No further explanation,even when asked directly.Barb is correct in her feelings about Dr Tarantolo. I heard him make several comments as if we were idiots and his s**t doesn't stink. He has that'I've got the degree,you need to listen to me' attitude. From what I've read from Barb and Alto you 2 have it head and shoulders in knowledge over him.

[Barbarannamated]

Alto,

There was a general sense that ADs are overused and depression diagnosed far too easily as we've discussed before. However, very few seemed to understand the difficulty DCing. Everyone seems to readily understand longer term changes and dangers w APs (metabolic, cardiac, etc.), but only the more immediate risks w ADs (mania, suicide). Also, the change in brain mass w APs was mentioned several times although nobody translated that into clinical or functional terms.

[compsports]

Alto,

There was a general sense that ADs are overused and depression diagnosed far too easily as we've discussed before. However, very few seemed to understand the difficulty DCing. Everyone seems to readily understand longer term changes and dangers w APs (metabolic, cardiac, etc.), but only the more immediate risks w ADs (mania, suicide). Also, the change in brain mass w APs was mentioned several times although nobody translated that into clinical or functional terms.

 

Barb,

 

Again, thank you and Jake for the updates.

 

I was wondering if anyone has any thoughts as to why these folks don't understand the difficulty of DC'ing antidepressants. That is just mind blowing to me.

 

CS

[Altostrata]

....Robert did say that he believes SS/NRIs will be shown to be much more problematic in near future. I voiced my opinion that the ones perceived to be safe are most insidious problem b/c of that perception....

 

I wonder what Robert Whitaker was hinting at? I know he's been working on a new article for mass media publication.

 

Agree that complacency about antidepressant safety is a HUGE issue! I wouldn't be surprised if they are connected to rise in adult diabetes.

 

About Dr. Tarantolo -- doctors can be really difficult to work with. But the only way out is through.

 

Thanks for the compliments, folks.

[Barbarannamated]

CS,

I think that ADs, even among these people, are still viewed as relatively benign in terms of long term safety. The treatment-emergent risks--agitation, aggression, mania, suicide--are known and acknowledged (and often treated as bipolar). The sexual problems are known. The emotional blunting is known by some, but I think it may be perceived as a form of sedation that will reverse upon discontinuation and not a result of neuroendocrine remodeling. The AAPs were perceived to be safe when they were first marketed b/c they didn't have risk of EPS of older typical APs. They became less specific to dopamine but varied affinity to muscarinic, histaminic, anticholinergic/cholinergic, 5HT, etc receptors, and side effects began to emerge, esp the metabolic ones w Zyprexa. The effects of APs are visible and measurable. ADs are not viewed in this detail except in research and even then, there isn't great awareness of the multiple systems effected. I suspect that if Zyprexa did not cause the horrible weight gain and diabetes, the knowledge of risks wouldn't have come to light. There are some who feel that some of the atypicals (Ability, for example) are less harmful than SSRIs.

I came away from the conference with the strong feeling that most believe APs and stims are the real problem. Very little attention to SS/NRIs. We need to differentiate between classes of drugs and also between the serotonergic antidepressants. Some have greater dopamine-dependent side effects which are tied into immune system and --i suspect--various WD syndromes.

[jake]

I believe one of their biggest problems is they are afraid to say they were wrong for prescribing or recommending these meds which are now showing the cracks in their armor. It has been my experience that drs have a very difficult time saying they were wrong. They work very hard at covering their own asses,i.e.-avoiding the subject.

[Barbarannamated]

I think Robert W was thinking endocrine issues w ADs b/c we had just talked briefly about looking at whole body and not just brain. I always try to use 'neurohormone' rather than neurotransmitter and avoid 'psychiatric' and 'mental health' in favor o neuroendocrine'

[compsports]

Thanks Barbara.

 

Your explanation as to the reasoning of the professionals makes total sense. But when we're talking about drugs that alter brain function, I don't see how a medical professional can minimize the damage of ADs especially when there is information that it exists.

 

Just so you know, I am not criticizing you but the logic of these folks.

 

I am curious as to why you want to differentiate between the drugs. Perhaps I am missing something but I am concerned that if that starts being done, that we will minimize the plight of people on a drug that isn't thought to be as serious.

 

Thanks again for your explanation as it greatly explains alot.

 

CS

 

In my opinion, I think differentiating between the class of drugs is not a path we want to go down. Any med that alters brain function can cause horrific side effects and if we start making distinctions, we risk minimizing the pl

 

CS,

I think that ADs, even among these people, are still viewed as relatively benign in terms of long term safety. The treatment-emergent risks--agitation, aggression, mania, suicide--are known and acknowledged (and often treated as bipolar). The sexual problems are known. The emotional blunting is known by some, but I think it may be perceived as a form of sedation that will reverse upon discontinuation and not a result of neuroendocrine remodeling. The AAPs were perceived to be safe when they were first marketed b/c they didn't have risk of EPS of older typical APs. They became less specific to dopamine but varied affinity to muscarinic, histaminic, anticholinergic/cholinergic, 5HT, etc receptors, and side effects began to emerge, esp the metabolic ones w Zyprexa. The effects of APs are visible and measurable. ADs are not viewed in this detail except in research and even then, there isn't great awareness of the multiple systems effected. I suspect that if Zyprexa did not cause the horrible weight gain and diabetes, the knowledge of risks wouldn't have come to light. There are some who feel that some of the atypicals (Ability, for example) are less harmful than SSRIs.

I came away from the conference with the strong feeling that most believe APs and stims are the real problem. Very little attention to SS/NRIs. We need to differentiate between classes of drugs and also between the serotonergic antidepressants. Some have greater dopamine-dependent side effects which are tied into immune system and --i suspect--various WD syndromes.

 

[compsports]

I believe one of their biggest problems is they are afraid to say they were wrong for prescribing or recommending these meds which are now showing the cracks in their armor. It has been my experience that drs have a very difficult time saying they were wrong. They work very hard at covering their own asses,i.e.-avoiding the subject.

 

That is interesting Jake.

 

Also, how do we know they still aren't prescribing them? My reason for asking is I listened to Breggin's interview with psychiatrist Doug Smith. He had written a column several years ago stating he had quit prescribing meds. But yet in this interview, he said he did although he claimed it was not that often.

 

I know Breggin is no longer part of this group but my point is it makes me wonder how folks who claim they are for psychiatric drug reform really practice what they preach.

 

CS

[Altostrata]

I agree, there is much more focus on antipsychotics and the more severe psychiatric diagnoses.

 

Guys, if you could help me by getting the e-mail addresses of the people you mentioned above, I'd appreciate it. I'd have to surf and Google to find them, and I don't have the time.

[Barbarannamated]

Alto, yes. I will get those asap. They weren't listed anywhere, but can track down.

 

CS, Exactly what Alto said: APs and schizophrenia perceived as more serious, drugs more toxic. If there was an obvious adverse effect like weight gain/diabetes w ADs (and class action suits), I think they'd be getting more attention.

 

Q: when an AP is used for depression, does it become an AD? I have all sorts of thoughts along those lines...

[compsports]

Alto, yes. I will get those asap. They weren't listed anywhere, but can track down.

 

CS, Exactly what Alto said: APs and schizophrenia perceived as more serious, drugs more toxic. If there was an obvious adverse effect like weight gain/diabetes w ADs (and class action suits), I think they'd be getting more attention.

 

Q: when an AP is used for depression, does it become an AD? I have all sorts of thoughts along those lines...

 

Thanks Barbara.

 

Well, when I saw the recent television add for Abilify, it was initially advertised that way in my opinion at the beginning of the ad. I almost destroyed my television set out of anger.

 

To answer your question, I see it as adjunct treatment. For example, if fish oil was added, we wouldn't be calling it an AD.

 

I will stop here before I go on a rant as I think you get my drift. What are your thoughts?

 

CS

[Barbarannamated]

CS,

There shall be many destroyed TVs. :-/

 

The antipsychotics ads are unbelievable. ANYONE listening and thinking about what they say should be outraged.

"....if your antidepressant isn't working, ask your doc about ADDING Ability (choose your poison)."

 

Q: if your AD is not working, HELLO!!... why continue using a drug that is not working ??! I can't think of another class of drugs that is used (and advertised) that way. Many treatments have a step-therapy approach (hypertension, for example), but I'd have to do a search on any that recommend adding a drug to one that us not working. Imagine the outrage that would create in Infectious Disease if it was suggested to add a 2nd antibiotic to one that was not working. That would create antibiotic resistance/superbugs.

I am aware of anticonvulsants that are indicated only as adjunctive therapy when seizures aren't completely controlled. Those clinical trials are complicated b/c it would be dangerous to take someone off of an anticonvulsant that IS working to some degree.

It all comes down to measurable conditions vs psychiatry w no measurable objective parameters.

[compsports]

Hi Barb,

 

When a relative was alive, two antibiotics were given to quell the c difficile infection she had unfortunately picked in an hospital. But the doctors had no choice because at the time, those were the only two antibiotics that were known to work with the condition.

 

I think with meds in general, don't they switch them and only if nothing works, do they start combining drugs?

 

Of course, the motto in psychiatry is add as many ineffective drugs as possible. Of course, I am being sarcastic but that is how it seems.

 

I wanted to complain to the station that ran the ad but due to cognitive impairment, I was not able to do it. But if I see one again and have the name of the company, I will try to follow up.

 

Yeah, the logic of running that ad is pretty bad. Next time psychiatrist provide their anecdotal BS that antidepressants work 70% of the time (sounds like quote from the fraudulent star D studies), I will have ask why these ads are appearing if ADs are so effective.

 

CS,

There shall be many destroyed TVs. :-/

 

The antipsychotics ads are unbelievable. ANYONE listening and thinking about what they say should be outraged.

"....if your antidepressant isn't working, ask your doc about ADDING Ability (choose your poison)."

 

Q: if your AD is not working, HELLO!!... why continue using a drug that is not working ??! I can't think of another class of drugs that is used (and advertised) that way. Many treatments have a step-therapy approach (hypertension, for example), but I'd have to do a search on any that recommend adding a drug to one that us not working. Imagine the outrage that would create in Infectious Disease if it was suggested to add a 2nd antibiotic to one that was not working. That would create antibiotic resistance/superbugs.

I am aware of anticonvulsants that are indicated only as adjunctive therapy when seizures aren't completely controlled. Those clinical trials are complicated b/c it would be dangerous to take someone off of an anticonvulsant that IS working to some degree.

It all comes down to measurable conditions vs psychiatry w no measurable objective parameters.

 

[Barbarannamated]

I was just reviewing notes from conference. Talk by David Antonuccio, PhD, about antidepressant study outcomes showed data collected by Eric Turner in 2008 w/ graphs showing positive and negative data 2 ways:

1) FDA VIEW vs. 2) JOURNAL VIEW

1= all data submitted to FDA for approval (many negative outcomes)

2= data published in journals and used for marketing purposes (positive outcomes far outweigh negative).

*internet search will yield Journal View

This difference was astounding! I have to get info and slides from him. Keep in mind, these categories do not include data that has been buried, never getting to FDA. So, the picture gets even worse! I'm not certain how one accesses info from FDA that has not been published. Is this the same info accessed by FOIA?

[Altostrata]

Yes, I think you can get it through FOIA.

 

There's some kind of unpublished information on prolonged withdrawal syndrome out there. Peter Haddad alludes to it, Richard Shelton knows about it, and a psychiatrist high up in the UCSF faculty told me Alan Schatzberg knows about it (the psychiatrist knew about it, too, but still refused to discuss it with me).

 

I don't know where it is. Maybe in the GSK stuff re Paxil. Perhaps you can get the info out of Richard Shelton at Vanderbilt.

[Barbarannamated]

Hi Barb,

 

When a relative was alive, two antibiotics were given to quell the c difficile infection she had unfortunately picked in an hospital. But the doctors had no choice because at the time, those were the only two antibiotics that were known to work with the condition.

I think with meds in general, don't they switch them and only if nothing works, do they start combining drugs?

 

CS,

Trying to access memory thru the cobwebs. especially w nosocomial bacterial infections which are tougher to treat than community-acquired, I believe that more than one antimicrobial may be used. I THINK C difficile is caused by other antibiotics killing off natural flora (like antibiotics--->yeast infection). I didn't work w antibiotics in hospital settings--a different beast. Outpatient infections generally treated 'empirically' based on which pathogens generally cause certain infections (strep/respiratory, E coli/UTI, etc) and choosing appropriate antibiotic. Culture and Sensitivity (C&S -usually done at offside lab) sometimes sent for if inf doesnt clear -- show exact bacteria and what antimicrobials it is sensitive to. The Sanford Guide (updated yearly, i believe) provides this info on thousand of bacteria, concomitant conditions and treatment guidelines, considerations, etc). Many docs carry the pocket version w them. It is *like* the DSM, but backed by SCIENCE! So, I guess it's not at all like the DSM. Sorry!

Please excuse if this is off-topic. Ive been mentally comparing psychiatry to other specialties to draw parallels and all I'm reinforcing is how outrageously unscientific psychiatry is. I'm collecting questions and comparisons that docs (outside psychiatry) *should* have tuned into if they think at all. Alas, most don't question the text or journal they learned from.

[Barbarannamated]

Yes, I think you can get it through FOIA.

 

There's some kind of unpublished information on prolonged withdrawal syndrome out there. Peter Haddad alludes to it, Richard Shelton knows about it, and a psychiatrist high up in the UCSF faculty told me Alan Schatzberg knows about it (the psychiatrist knew about it, too, but still refused to discuss it with me).

 

I don't know where it is. Maybe in the GSK stuff re Paxil. Perhaps you can get the info out of Richard Shelton at Vanderbilt.

 

I think the pharma company is supposed to provide any info to docs requesting info on certain side effect or interaction, etc. I was amazed at the infomoment they had on file (unpublished, of course). Seems too easy, but I'll try that and the FDA.

[Altostrata]

You probably have to request the info by drug/manufacturer. Give Prozac, Paxil, and Effexor a shot -- they've been out there the longest, taken by the most people, and probably have the most reports.

[Dani]

 

Joseph Tarantolo, MD, was not only disappointing, but infuriating! He's Chairman and gave closing remarks after upbeat message by David Oaks. Tarantolo asked if anyone was pissed off (as people are ready to leave). No response. Then David said something general as if to divert attention from Tarantalo. Tarantolo comes back with 'well, I talked to someone who is pissed--a nurse practitioner who said the conference didnt address the problems when discontinuing meds.' Okay...this got my attention. Keep in mind, half the crowd is gone by now and most others ate packing up.

Tarantolo goes on to say that this is his specialty in Washington DC and he's come to conclusion that it may not be possible for some people to ever DC and recover due to the damage of long term use. Then he just walked off stage, end of conference. I was stunned and, naturally, hunted him down immediately. WTF kind of bombshell is that to drop as a closing remark??! A few people were gathered around him asking about his earlier talk about 'healing in groups' as his wife was signaling him to break away for dinner engagement. I asked for explanation for the last comment b/c I know many people having a tough time with antidepressant withdrawal and DC.

His reply: "I was referring to long term AP use... such dirty drugs, cause decrease in brain mass and, I dunno, that vant be aa good thing.... there's not a problem w ADs.... oh, there's my wife, gotta run...thanks for coming" and he was gone! I was stunned. I'll definitely be letting ISEPP know my feelings on that when I collect them. That was wrong in so many ways.

 

 

 

 

What??? Wow...