MIA Blog Entry by Dr. Shipko on WD

[compsports]

What do you all think about this MIA blog entry by Dr. Shipko on WD?  Not exactly optimistic.

 

http://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/

 

CS

 

Administrator note: Be sure to read this clarification of Dr. Shipko's piece http://survivingantidepressants.org/index.php?/topic/4787-mia-blog-entry-by-dr-shipko-on-wd/?p=60372

 

 

Edited December 15, 2018 by ChessieCat
added admin note AS/CC bolded

[Altostrata]

I disagree with Dr. Shipko. And we see people recovering from this syndrome all the time.

[GiaK]

I've now left several comments...I think he's acted totally irresponsibly. And I said so.

[GiaK]

Shipko has responded to many folks but has neglected to respond to my critical comments...I find this interesting..perhaps he's thinking about how to do it...

 

hmmm

[compsports]

Hopefull

 

Shipko has responded to many folks but has neglected to respond to my critical comments...I find this interesting..perhaps he's thinking about how to do it...

 

hmmm

Hopefully, that is the situation because you definitely raised some points that deserve a response.

 

I will be honest though about admitting that I am not as upset about his blog entry as most people are.  I am not sure why.

 

Maybe because it seems my life has gone downhill greatly since I started tapering off of these meds so what Shipko was stating wasn't a great shock.   I mean, I really had no choice but to taper them since I was suffering horrible side effects. But to be honest, if someone had forcasted the troubles I would go through before tapering, it would have made me think extra hard about whether I wanted to do this or not. I still would have but at least, having the discussion would have been helpful.

 

I think also I wonder if I had stayed on the meds and had been diagnosed with sleep apnea, if it would have been easier to adjust to sleeping on the machine since I wouldn't have been dealing with withdrawal insomnia. But I know there is no guarantee I would have been diagnosed with it if I had stayed on the meds.

 

CS

[Barbarannamated]

CS,

 

I had a similar reaction.

[compsports]

CS,I had a similar reaction.

Barb,

 

Thanks for letting me know I am not alone in having the reaction that I did. I am sorry you have to deal with similar type issues. It is just sad that no matter how we feel about what was written, we are left hanging on our own to struggle.

[GiaK]

it’s not that I don’t think some people don’t completely recover…but Shipko is saying it unequivocally as though it were written in stone and must be…the fact is if everyone were given appropriate supports to learn and apply the things I and a great many of us are learning and applying those who aren’t recovering very well might start improving…

there are very few people who can address these issues as broadly and holistically as necessary on their own and until there are professionals that can competently help people do that along with holding a space of healing hope, then yeah, we’re gonna have people not making it or taking far longer than necessary…but right now we have no proof that there is necessarily anything inherently permanent about the condition …from my view it’s a massive challenge that may very well be more than some can take…at this moment without meaningful supports 

he was not responsible to not make such nuance clear. 

 

he clearly doesn't even have the skills to help people. he brings up tryptophan and SAME-e...well yeah, that ain't gonna cut it. 

[Barbarannamated]

Absolutely, Gia.

 

There is an infinite number of confounding factors in the overall picture.

 

I THINK Dr. Shipko seems to be using the forum to warn of worst case scenario and is one of very few doctors who has jumped into a conversation with "citizen scientists" (not fond of that term). The other docs will write about it (Breggin, Healy, etc), but few have actually dialogued in a very open and active forum (that I'm aware of). For that, I give Dr.Shipko credit.

[Meimeiquest]

Maybe I am lost in neuro-emotion right now. I thought I had signed off from SA, but I have to come back. I was infuriated by this article. Not that I don't doubt for one minute that the problem is as bad as he says, but basically he said I have worked with this disorder for many years, and there is no chemical we can put in the brain that helps, so I am announcing that there is no hope for difficult cases. Citizen scientists who think otherwise don't even have the name of the disorder right. I think Mr. Edison has discovered one thousand ways not to make a lightbulb...a noteworthy achievement, but certainly not the end of the story.

[mammaP]

I have to say that if I hadn't been here and learned what I have, I would have been in despair

after reading Dr Shipko's article. It is the hope gained from the people here who are recovering 

that has given me some hope. If I read that BEFORE I started tapering I would have felt doomed

to solitary confinement and zombi-ism for the rest of my life. And If I'd read it in full blown withdrawal 

I would have been actively suicidal, I'm sure I would. 

[GiaK]

oh...fyi...he did respond...both on the public thread and directly to my private email.

 

We're going to chat on the phone. I felt much better after he responded. 

[Finn]

I didn't even finish reading that article because I felt it was pessimistic.

[Barbarannamated]

I would like to see Dr. Shipko as he is not far from me, but am very concerned that I will leave even more hopeless than I am.

[compsports]

Oh, that is a tough one Barb. What about emailing him and politely expressing your concerns and see what he says?

 

What do you hope he will do for you? I have found that asking myself that question has been helpful when I debated where or not to see a doctor.

 

CS

[Aria]

When I read his article I cringed. I replied if I had read this before I tapered I doubted it would had stopped me (I was dying on those drugs). Dr. Shipko stated it was 100% no one can come off these drugs and have a life again. I strongly disagree because I'm proof this isn't true.

 

 

GiaK,

 

If you could please tell us a little how your conversation with Dr. Shipko went and if he was enlightened by it??

[Altostrata]

No more Mad In America for me. I can't take the harassment from the commenters, and the mods won't do anything about it.

[Barbarannamated]

I think my different take on his article is because I was relatively functional on the cocktail and "tapered" off of Pristiq because I felt the SS/NRIs never benefitted me and could pull it out of the mix. I still don't believe they helped, but my house of cards was built around them and it collapsed in a big way.

 

And, on further thought....I am far too emotionally fragile to expose myself to anyone who might do more harm with words or actions.

[compsports]

No more Mad In America for me. I can't take the harassment from the commenters, and the mods won't do anything about it.

Alto,

 

I don't blame you one bit for leaving the site after what happened.

 

By the way, I know this is an off topic response but I thank you profusely for creating a safe supportive environment in which we don't have to fear being attacked.

 

CS

[UnfoldingSky]

 

No more Mad In America for me. I can't take the harassment from the commenters, and the mods won't do anything about it.

 

I don't blame you either.  I was reading over there, and thought your comment aimed at the forum was great.

[GiaK]

I very carefully participate in those threads on MIA and don't go back to read responses most of the time...that's the only way I can tolerate it at all.  I learned that trick years ago when Furious Seasons was the forum for that sort of ugliness. And of course I still end up regretting any involvement at all quite often...I've backed off social media in the last couple of days...  http://beyondmeds.com/2013/08/14/the-fall-out/

 

Aria,

I've not talked to Shipko yet. We've exchanged contact info for a phone call is all at this point. I've known Shipko via email groups from several years. I've never talked to him though.

[Altostrata]

In Dr. Shipko's defense, here is his comment appended to his MIA piece that clarifies his position:

 

Comment Link: http://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/#comment-29644 

Author: Stuart Shipko, M.D.Comment:Hi Alto:The term 'citizen scientist' was actually a compliment and not a derogatory term.  The best, and perhaps only, information on withdrawal is coming from the patients themselves.I am not frustrated or angry and have not given up on helping patients to withdraw.  I do want to make a major effort to keep people away from these drugs if their problems are modest and not worth the risk.  Also, the potential tragedy that I see when long term patients on SSRIs try to stop should be something that patients consider before stopping.As far as tapering, the BDZs and the SSRIs are quite different, and I definitely agree that the drugs should be tapered slowly.  What I find, however, is that even with slow tapering this does not ameliorate the longer term problems.  I write this because a lot of patients seem to blame themselves for tapering too fast, when this self blame is unfounded.  They may have tapered very slowly, yet when longer term withdrawal related symptoms occur, they feel that if only they had tapered more slowly things would be OK.  I am by no means giving up on helping people who want to get off of SSRIs, and the autonomic nervous system is certainly implicated as part of the damage that the drugs do, but the withdrawal emergent effects are so variable that at this point I'm reluctant to experiment on patients without a better database.This is not an end point for my work in the area so much as a call to arms on a very difficult problem

 

 

 

I have met and spoken with Dr. Shipko. While he is interested in treating drug damage, he hasn't found anything that worked and can't offer any advice about it.

[alex]

I refuse to read Dr.Shipko.Period.

[Barbarannamated]

In Dr. Shipko's defense, here is his comment appended to his MIA piece that clarifies his position:Comment Link: http://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/#comment-29644

Author: Stuart Shipko, M.D.Comment:Hi Alto:The term 'citizen scientist' was actually a compliment and not a derogatory term. The best, and perhaps only, information on withdrawal is coming from the patients themselves.I am not frustrated or angry and have not given up on helping patients to withdraw. I do want to make a major effort to keep people away from these drugs if their problems are modest and not worth the risk. Also, the potential tragedy that I see when long term patients on SSRIs try to stop should be something that patients consider before stopping.As far as tapering, the BDZs and the SSRIs are quite different, and I definitely agree that the drugs should be tapered slowly. What I find, however, is that even with slow tapering this does not ameliorate the longer term problems. I write this because a lot of patients seem to blame themselves for tapering too fast, when this self blame is unfounded. They may have tapered very slowly, yet when longer term withdrawal related symptoms occur, they feel that if only they had tapered more slowly things would be OK. I am by no means giving up on helping people who want to get off of SSRIs, and the autonomic nervous system is certainly implicated as part of the damage that the drugs do, but the withdrawal emergent effects are so variable that at this point I'm reluctant to experiment on patients without a better database.This is not an end point for my work in the area so much as a call to arms on a very difficult problem

I have met and spoken with Dr. Shipko. While he is interested in treating drug damage, he hasn't found anything that worked and can't offer any advice about it.

His clarification statement makes sense to me. He appears to be exercising due caution / informed consent in both starting and stopping drugs.

[Karma]

So, I think that what Shipko refers to as a "slow" taper is probably a relative term.  Do we know what percentage he recommends as a slow taper?

 

Before I found this forum I was doing a "slow" taper with support from my pdoc ... and I might have made it off Effexor completely had I not destabilized my system by attempting to drop gabapentin by 100 mg while I was riding the fine edge.  The 100 mg gabapentin drop was based on what the medical community considers a "slow" taper. 

 

But I think knowing what I know now if I had made it off of Effexor on my so-called "slow" taper I would have been one of those people Shipko speaks of who ended up with anxiety and depression after a period of a few months off.  Why?  Because my "slow" taper was at a rate of 6.25 mg every 2-3 weeks.  At that rate I suffered everso slight blues the first 3 days after the decrement and then I was fine, so I probably would have made it and I was 3 decrements from being off completely.

 

I have come to the realization that it may well take me another 3+ years to come off of Effexor completely (I am currently at 16.2 mg) because I am now reducing at a rate of 7% off of the previous dose because at that amount I have no adverse effects.  But that is what works for me.

 

We are all individuals and there are mitigating factors.  Blanket statements in my humble opinion are irresponsible ...

 

Karma

[Brandy]

So, I think that what Shipko refers to as a "slow" taper is probably a relative term.

 

Karma, I'm SO glad you pointed this out. This is so very important!

 

I have long experience with withdrawal groups, and if I had a dollar for every person who posts "I tapered very slowly" I'd be wealthy.

 

When I ask their taper schedule, it's usually something like "Well, I cut my pill in half for two weeks, then cut the half pills in half for two weeks, just like my doctor told me to." Aargh.

 

And some have done better tapers, but still with too-large drops and still not following their body's dictates when they should have adapted their tapering as problems occurred, as you so wisely are doing.

 

And I was one of them. I went off paxil in about six weeks, following a taper schedule my truly well-intentioned doctor gave me. He kept reminding me emphatically to go slowly, and I thought that taper schedule was ridiculously slow. tbh, I did it (the six-week taper) only so I could tell him I followed his advice. I thought it was absurd.

 

I had been told when first put on the paxil that it couldn't possibly be addictive. This matter came up because I was given the paxil to ameliorate a very protracted and disabling two-week benzo w/d, and adamently didn't want to risk taking another medication. It was only because another doctor who is very prudent with medications and was livid that people were still being prescribed benzos even when I was put on them, told me that paxil (which had just recently come on the market) worked in a totally different way and there was no way it could cause any withdrawal. I was never told otherwise. My doctor who later gave me the taper schedule when I wanted to go off them apparently had no idea that I was still completely unaware that they could cause any kind of withdrawal syndrome.

 

I was absolutely stunned when a mod on "the other group" told me when I mentioned the paxil taper schedule I'd followed, that it was a "virtual cold-turkey."

 

So there very possibly have been miscommunications about slow tapering, and also many people (I was one) don't even think to mention other meds they've been on in the past or having c/t'd them.  Many (I find) don't even remember having been on some, because they thought nothing of it at the time.

 

I have many medical conditions and will never remember completely all the medications that affect the neuro-endocrine system I've taken. Occasionally I find old medical records in my file and see names of meds I'd totally forgotten about. I thought doctors knew what they were doing and was just focusing on being well enough to work and to take care of family.

[compsports]

One of the most frustrating aspects of Dr. Shipko's blog entry is now all the cold turkey fans will use this as proof that it isn't dangerous and as further proof that us slow tapering advocates are a bunch of alarmists. They won't realize that the folks like GiaK who weren't protected by a slow taper had some unusual circumstances.

 

CS

[Altostrata]

That would be a misinterpretation of what Shipko has to say -- he failed to make it clear he believes tapering is better than nothing -- but I agree, it will be fuel for those fools.

 

I don't believe you can expect any kind of intelligent discussion in comments on MIA. The fools will reign. Kermit, the discussions manager, told me he's applying the Finnish "Open Dialog" philosophy to the comments section, on the theory that "crazy disappears" in a context of permissive listening. Bullying, harassing, posting in bad faith, etc. is deemed therapeutic for the poster unless he or she runs afoul of certain semantic guidelines.

 

"Open Dialog" requires a very high ratio of support staff to participants specifically so everyone feels safe. That anyone would try to apply "Open Dialog" to a lightly monitored Web forum -- well, Kermit is a nice person. Perhaps he'll learn.

 

Such is the way MIA is shaped by ideology. Also, the MIA staff believes warning people not to cold turkey is coercive and authoritarian. (Bob Whitaker seems to support an agnostic position on tapering for this reason.) This leads to contortions such as Laura Delano's "there is no one right way to go off psychiatric medications," implicitly including cold turkey as just as good as any other way.

 

A year or so ago, I met Laura in San Francisco, and she told me to my face we were "totally aligned" when it comes to cold turkey vs tapering. This turned out to be entirely untrue. In her public speaking and writing, Laura still consistently uses the "there is no one right way to go off psychiatric medications" trope so as to avoid warning against cold turkey.

 

Hence, I have requested that all links to SurvivingAntidepressants.org be removed from MIA's resources section and that Kermit and Matthew stop referring people here for tapering. If, for ideological reasons, they can't publicly support tapering, I refuse to make them look good with my work. They can do their own heavy lifting. Laura gives talks about going off drugs, she says she supports people in the process, let her deal with any questions at MIA.

 

Let me say that, given Bob Whitaker has done so much to get people to question whether they should be on psychiatric drugs, I feel that advice about how to actually accomplish going off them is a crucial missing piece at MIA -- blocked by a misguided ideology. Given Bob's message, the lack of information at MIA about safely going off is irresponsible. Rather than doing the right thing and encouraging tapering, the MIA folks recruit people like me to do it and take the hits for them.

 

I've been treated badly by MIA and I'm not filling in any gaps for them.

 

SurvivingAntidepressants.org gets plenty of visits via Google and most emphatically does not need referrals from MIA.

[Barbarannamated]

Wow. I'm sorry to hear that is their position, Alto. Very disturbing.

[compsports]

My sentiments also Barb in being stunned. Great, so they would rather people end up suicidal and in psych hospitals with more drugs from cold turkeying vs. appeaning to be authoritative by warning against cold turkey. But they can't be alarming folks now, can they

 

Don't blame you one bit Alto for the actions you have taken to disassociate yourself from the MIA site.  I seriously doubt there will be any changes. Although it was interesting that when medical professionals complained, they got tougher. But the rest of us are fair game.

 

CS

[UnfoldingSky]

I am stunned as well.  Alto, so sorry you were so badly treated over there. 

 

I just went over there and started a long angry comment to post, but then decided against it.

 

As someone whom has a fair background in mental health issues and who has bothered to look into issues like drugs causing suicide/various forms of mental distress, and as someone with severe injuries from drugs, I am very, very aware that some of the demanding questions re prove antidepressants cause this or that kind of mental distress or suicide are written by people whom have not bothered to look into the issues themselves.

 

I can't fathom why people with severe injuries need to use google for them.  Ugh.

 

What has really angered me is, I won't likely be going back to that site, and obviously you won't Alto, and it would appear some others here might not either.

 

Yet from what I can see some of the remaining people there appear to be people whom have no experience with severe withdrawal, whom don't appear to have a need to get off a drug ie they are not the target audience of the article.

 

How fair is it that we should be run out by those people?

And one person wrote something about hoping that the dialogue could still be inclusive, other people's input being invaluable, after further up in the thread insinuating that people in long term withdrawal are all alcoholics or street drug addicts.

 

Like I want a part of that discussion.

[compsports]

Totally agree UnfoldingSky. As I said to one commenator, he is no better than what psychiatry does in discounting our reactions to meds.   Unfortunately, he didn't see it that way which isn't a surprise.

 

By the way, the person you refer to as insuiting that people in long term withdrwawal are drug addicts or alcoholics is a mental health counselor. That is a scary thought.

 

CS

[Altostrata]

As I wrote the MIA moderators, they choose their policies and how to apply their policies and they get the level of discussion they get.

 

No one who was snide to any other member, no matter how semantically couched, would get away with that here.

 

If the MIA moderators don't want people posting who know anything about tapering and withdrawal, that's their decision. Yes, it is a shame, given the objectives of the site, but it's a result of their policies: "Open Dialog" for the worst behaved.

 

There are many, many Web sites where comments aren't worth reading because of the prevalence of jerks, MIA may very well be one of them.

[UnfoldingSky]

Totally agree UnfoldingSky. As I said to one commenator, he is no better than what psychiatry does in discounting our reactions to meds.   Unfortunately, he didn't see it that way which isn't a surprise.

 

By the way, the person you refer to as insuiting that people in long term withdrwawal are drug addicts or alcoholics is a mental health counselor. That is a scary thought.

 

CS

 

Good on you Compsports, I saw that comment and was sending you a silent high five.  I would have written something to back you up, but by then I was so upset I couldn't even type straight. Not sure that  "akdljad  ajdow  a ldnalk j  alajldj"  would have really helped. 

 

And that is scary that he is a counselor.  Though it doesn't surprise me.  I don't think it's a wise move to make comments like that, certainly not good advertising in my opinion...

[UnfoldingSky]

As I wrote the MIA moderators, they choose their policies and how to apply their policies and they get the level of discussion they get.No one who was snide to any other member, no matter how semantically couched, would get away with that here.If the MIA moderators don't want people posting who know anything about tapering and withdrawal, that's their decision. Yes, it is a shame, given the objectives of the site, but it's a result of their policies: "Open Dialog" for the worst behaved.There are many, many Web sites where comments aren't worth reading because of the prevalence of jerks, MIA may very well be one of them.

 

I have to say Alto, you run this site so well that it almost spoils a person for the rest of the internet.  I know only a few other places I can tolerate online. But I've been taken by surprise by the MIA site; it seemed it started out okay but now... Well I certainly didn't see this latest turn of events coming.  I wasn't reading it religiously though, so, it sounds like there was more going on than I was aware of.

 

And that Open Dialog format is very strange for online.  Someone even posted later on that they had real world experience with it, and that they were making it out to be more grand than it really is.  Seems to me Open Dialog online already has been tried anyway; it's called the yahoo comments section.

 

Not a fun place to spend time, in my opinion.

[compsports]

Hi Unfolding Sky,

 

I totally understand you not wanting to say anything. But I do appreciate the silent high fives.

 

Definitely agree that Alto spoils us with the type of supportive site she runs. It makes adjusting to sites like MIA very difficult. And even on other sites that have nothing to do with AD withdrawal, I cringe big time if I feel the tone is different such as not being supportive of people.

 

And I too saw that comment about how over hyped open dialogue may be.   That person seemed quite knowledgeable so I do wonder about that.

 

Too bad because MIA could be a great site. Oh well.