18 replies to this topic

[thismoment]

Kids, check this out. There's a great paragraph on long-term weaning at the rate of 5% reduction per month to 50% of the dosage and then 2.5% reduction to the end. That total period is quite long at (please check my math) 30 months. The side effects are almost nil.

http://www.madinamer...odds-revisited/

[brzghoff]

 

i'm past the point of no return on a taper and he's already spelled out that going back on to taper down does not work well at all, especially for us "older" folks - i'm 54. what concerns me is the tardive akathisia - fear/anxiety that may not have existed before, showing up 7 months down the road. i've been on snri's alone for 16 years before finally stepping off a steep taper may 13. so what i am getting from this article is that this will be a life long struggle. i have been having a meltdown all week - in terms of extreme anxiety and fear - but i feel much better today. however everything is relative. it appears that if at some point i feel the need to go back on C or something like it, it may not make a difference at this point. 

 

i sure wish he could share with us the stories of long term users who have come out of it to lead a productive life. there has to be some hope. i can say i am very healthy otherwise and have some good coping skills to employ. 

[FiveNotions]

Brzghoff, I think we've got/had quite a few long term users who've gone on to live happy and productive lives ... for starters, Ken, the designer/administrator/person who pays for this website .... also, Flik, Timbo, Donna Prashad, ClearGlass ... and lots of others who've gotten off and have drifted away from posting here ... I'm drawing a blank for other names, but I'll find them and post them here ... with links to their profiles ... some of them come back from time to time to post a "hello" and a quick update ...
 
You just need more time, Brzghoff ... time, without putting pressure on yourself ... I guess I didn't take Shipko's article as negative ... I saw lots of hope in it... that even after 2 years there's still improvement ... and heck, as we get older, nothing...absolutely nothing...comes as easily as it did in our 20s, 30s, even 40s... I can't expect my brain to bounce back the way it used to ... the only thing that bounces now is the flab on my butt

[brzghoff]

Brzghoff, I think we've got/had quite a few long term users who've gone on to live happy and productive lives ... for starters, Ken, the designer/administrator/person who pays for this website .... also, Flik, Timbo, Donna Prashad, ClearGlass ... and lots of others who've gotten off and have drifted away from posting here ... I'm drawing a blank for other names, but I'll find them and post them here ... with links to their profiles ... some of them come back from time to time to post a "hello" and a quick update ...
 
You just need more time, Brzghoff ... time, without putting pressure on yourself ... I guess I didn't take Shipko's article as negative ... I saw lots of hope in it... that even after 2 years there's still improvement ... and heck, as we get older, nothing...absolutely nothing...comes as easily as it did in our 20s, 30s, even 40s... I can't expect my brain to bounce back the way it used to ... the only thing that bounces now is the flab on my butt

thanks,

 

i guess what freaks me out is how LONG i've been on the drugs - i know about ken, he was a relative short timer - a year? i've been to his blog. i've enjoyed reading many of his articles. i'll look up the others you've mentioned.

 

i have an appt w/ the therp today. took some kava yesterday and it really helped. today doing much better on my own. one day at a time. 

[thismoment]

brzghoff

"I sure wish he could share with us the stories of long term users who have come out of it to lead a productive life."

That's a very good question to ask Dr. Shipko. Here's the link to send him an email and ask the question. Please post his answer. I emailed him a question and he responded within 2 hours.

http://www.madinamerica.com/contact/

[FiveNotions]

Me too, on the length of time I've been on these drugs ... since the mid 1990s for Wellbutrin ... told I'd have to be on for the rest of my life ... since 2007 (maybe earlier) for Cymbalta ... likewise, told I'd have to be on for the rest of my life ... but, what's done is done ... it still pisses me off royally sometimes, and makes me sad other times ... but I'm off the crapalta now...and my mind feels more clear and alive than it has in ages... so, if I can continue as I'm doing now, I'm going to try weaning off the Wellbutrin at the beginning of next year ... after Cymbalta, I figure it can't be worse ... and now I know not to quit cold turkey ... heh heh heh

[brzghoff]

brzghoff

"I sure wish he could share with us the stories of long term users who have come out of it to lead a productive life."

That's a very good question to ask Dr. Shipko. Here's the link to send him an email and ask the question. Please post his answer. I emailed him a question and he responded within 2 hours.

http://www.madinamerica.com/contact/

Done! i'll let you all know what he says

[brzghoff]

 

here is my email to Dr Shipko followed by his response. I don't know what to say

 

 

Dr. Shipko,

My background: I have been on SSRI\'s or SNRI\'s since 1996, Cymbalta for the last ten years. I did a rapid taper and \"stepped off\" for good May 13 (with my psych\'s approval). I still take Lamictal (I have a diagnosis of bipolar). I quit Cymbalta because of the confidence I had in myself after years of therapy - REBT.  Side effects include very high BP, difficulty emptying my bladder, akaithisia and constant tension, irritability. I\'d love to get off the Lamictal, but that can wait, I am in no hurry. I suspect my p-doc will suggest I go back on some kind of anti-d if the withdrawal continues and I don\'t want to.
My concern is the prospect of akasthisia/anxiety being a life long struggle. I know the information that you share is anecdotal, but do you have an educated guess as to the percentage of people you have dealt with who have been on SSRI/SNRI drugs for 10-15-20 years and have recovered fully from withdrawal? As best as can be determined - such as years so far without a relapse. 
I just read your latest blog, Playing the Odds, Revisited. I also read the one about Informed Consent. 

 

 

Hi: it is tough to answer your question.  You need to realize that when patients present to me asking about stopping SSRIs after a 10 year exposure, I usually warn them that there is a possibility of severe akathisia unresponsive to reinstatement.  I have them read 'Informed Consent.'  After informed consent, the only patient who still wanted to proceed was the one I wrote about with the super slow bead taper of Effexor - who has had almost no symptoms on the way down from 150 to 54 mg of Effexor.  What will happen when they stop is unknown.  One person who consulted me after a 19 year exposure later went on to taper without my supervision and came back to see me after disabling akathisia.  Reinstatement worked.  It is noteworthy that the duration of withdrawal was only a few months.  Otherwise, ALL of the the people are coming to see me because of a failed tapering.  I don't have much prospective data on what happens with patients who taper after a decade of exposure.

[brzghoff]

 

The message board here cut off the remaining part of his email response and crammed my original email into his response, so when reading above you have to look for the Hi Carol part since there is no break between the two:

 

The people who failed reinstatement were all off meds for a year or so.  I realize that I probably have more experience in working with this than most doctors, but my knowledge base is thin.  

 

Still, some food for thought:  Why not reinstate now, when it is most likely to be successful and then use a Cymbalta bead taper over a couple of years, similar to the Effexor person above?  My guess (and it is indeed a guess) is that super slow tapering is your best strategy.  The Lamictal probably is helpful during tapering, so I wouldn't touch it until long after you have no further withdrawal symptoms.

 

Best Wishes,

[FiveNotions]

Brzghoff,

First, and foremost, don't panic at his response... he himself says that "I realize that I probably have more experience in working with this than most doctors, but my knowledge base is thin."

I think all of us here have a pretty "thick" knowledge-base ... perhaps not from medical training, but definitely from personal experience....
 
We ... all of us here, especially FH and TM, need to see/read this and have time to think it through and do some research ... I'm certainly not immediately sure what to think / say about the substance of his message .... I need to re-read it ... and I need to go back and re-read your earlier posts .... everything you've said about the process you used to get off Cymbalta, the side effects you had while on it, and what symptoms you've had after getting off ... focusing, of course, on the akathisia and anxiety ... I also need to read up on the Lamictol and its possible side-effects etc (I had forgotten that you also have a diagnosis of bipolar) ...

How are you feeling today? Did all this shake you up pretty bad?

[brzghoff]

Brzghoff,

First, and foremost, don't panic at his response... he himself says that "I realize that I probably have more experience in working with this than most doctors, but my knowledge base is thin."

I think all of us here have a pretty "thick" knowledge-base ... perhaps not from medical training, but definitely from personal experience....
 
We ... all of us here, especially FH and TM, need to see/read this and have time to think it through and do some research ... I'm certainly not immediately sure what to think / say about the substance of his message .... I need to re-read it ... and I need to go back and re-read your earlier posts .... everything you've said about the process you used to get off Cymbalta, the side effects you had while on it, and what symptoms you've had after getting off ... focusing, of course, on the akathisia and anxiety ... I also need to read up on the Lamictol and its possible side-effects etc (I had forgotten that you also have a diagnosis of bipolar) ...

How are you feeling today? Did all this shake you up pretty bad?

i am actually doing okay. had a great session with my therp. yes there is  little of the anxiety but doable

[brzghoff]

Me too, on the length of time I've been on these drugs ... since the mid 1990s for Wellbutrin ... told I'd have to be on for the rest of my life ... since 2007 (maybe earlier) for Cymbalta ... likewise, told I'd have to be on for the rest of my life ... but, what's done is done ... it still pisses me off royally sometimes, and makes me sad other times ... but I'm off the crapalta now...and my mind feels more clear and alive than it has in ages... so, if I can continue as I'm doing now, I'm going to try weaning off the Wellbutrin at the beginning of next year ... after Cymbalta, I figure it can't be worse ... and now I know not to quit cold turkey ... heh heh heh

 fyi five notions, i was on wellbutrin XR for a couple years, concurrent with effexor. it ruined my career. I was respected and admired with a soaring career. it all crumbled away. i went off the W with no weaning and no side effects. but the damage to my career was done. but, that was just me. 

[thismoment]

brzghoff

 

I thought that was a positive response from Dr. Shipko. You've only been off 2 months, and the prognosis for shedding the akasthisia appears good; some other symptoms may just disappear too- and for the same reasons involving re-instatement followed by super-slow tapering.

 

We all know it's a crap shoot, but we are all reluctant crap-shooters now, and we are compelled to play because our history has brought us to this table.

 

Should you decide to re-instate, I think you could create a link between your medical people and Dr. Shipko. Couldn't hurt. 

[FiveNotions]

Brzghoff,

I've re-read your earlier posts, done some reading on tardive akathisia, and re-read Shipko's article ... Here are my thoughts ...

You're very early in discontinuation ... as TM says, just about 2 months ... I think it's far too early for you to be worrying about "late onset" symptoms, which is what Shipko is discussing ... you're still dealing with "early onset" stuff ...

Also, as I understand your description of the akathisia and anxiety you're experiencing, while awful for you, it's not at the unbearable sort of level that Shipko described his patients having ...

And, he notes a possible connection between late onset symptoms to an overreaction to stress ... this tells me that we here on the forum are "on to something" when we say how important it is to keep a handle on/manage our anxiety both while coming off the Cymbalta and after getting off it ... by that I mean both by using meds as appropriate, alternatives like mindfulness/meditation, etc, AND keeping our external stressors to a minimum and our activity levels moderate ...

I think that the more we push and force ourselves to be "normal", to be "recovered," the more likely we are to have problems further down the road ...

and you do have a tendency to overdo, set unrealistic expectations for yourself, etc ... you were a very high performer/over-achiever in your career (as was I, by the way) ... and it was part of what broke you ... as it was with me... if we continue to apply those dysfunctional standards to our recovery from Cymbalta and other meds, we are guaranteeing ourselves failure and relapse...

Here's what's a key part of the article for me: "This case illustrates a few notable features of stopping SSRIs. I wonder if the late-onset symptoms relate to overreaction to stress. The abnormal blood work preceded the anxiety as did the earthquake in the other patient. Also, it is notable that the late-onset symptoms went away over a few months. This suggests that, at least in some patients, the late-onset withdrawal symptoms may be transient. If possible, waiting it out instead of reinstating may be the best treatment option.

However, it is difficult to not reinstate the SSRI in patients with tardive akathisia. The suffering of these patients is far more severe than what I see in patients who have disabling anxiety or depression unrelated to SSRI use or withdrawal. These patients are often on the edge of suicide, partially from the discomfort of the akathisia, and partially from a sense of deep, hopeless depression."

[brzghoff]

the words that bother me are: 

 

"The people who failed reinstatement were all off meds for a year or so."

 

that means, those who stayed off for a year, the withdrawal failed. the reinstatement, going back on the drug they weaned off of, also failed. in his article he mentioned anxiety and akathisia not even presenting until sometimes 7 months after finishing the taper and initial withdrawal. that gets me closer to that "one year" mark before i learn if that happens, and of course, everyone is different. i am gathering info including dr. shipko's two blog articles and my correspondence with him i am sharing it with my therp and my p-doc - who i plan to "fire", but i'll give him one more chance to see how he reacts.

 

i am not trying to be a downer, just trying to be real in terms of my best strategy perhaps after giving it a few more month before deciding whether its better to go back on. however the cost is prohibitive. i am on an a federal "health exchange" policy. even though we have little income right now, its too much to go on medicaid or qualify for enough of a subsidy to afford a plan that would cover the C. I have a $6500 deductible on me, another $6500 on my husband and the premiums are 1/3 of our monthly income. generic C is over $200 a month and its all towards deductible before they cover 40%. my only hope is if i could go back on venlafaxine (effexor) - that's a tier one generic on the formulary.

 

also,i responded back to him and he to me which is as follows 

 

Dr Shipko,

 

Thank you for your quick response. You've given me something to consider regarding re-start and taper. However there are serious financial barriers for me to acquiring the amount needed to taper. Cymbalta costs over $400 for a 30 day supply and the generic is in the $200 range, for the first time this year, my insurance won't cover either name brand or generic. I understand that some of the generics  come with about a dozen larger beads, others with a variable number of beads inside from capsule to capsule, which suggests an inconsistent tapering experience. Also, for the past year two years, I was on only 30 mg, having weaned down from 90 to 60 to 30 the year prior with no problem whatsoever. 

 

i'll discuss this with my psych, but he is old school - telling me years ago I would have to be on anti-d's the rest of my life. It makes me wonder if he was already aware that SNRI's are a life sentence.

 

Regards,

 

 

 

Despite possible differences in beads/capsule, I have still found that bead tapering works very well.  Your financial concerns are understandable. While I prefer to reinstate the same SSRI, sometimes people do well reinstating a different SSRI, such as a low dose of Prozac.  Your psychiatrist probably got the idea that you need the drug the rest of your life from Pharma based education.  Somehow, when these drugs came out, the description of depression changed from being a time limited phenomenon to a chronic lifelong problem.  I really wish that there was more information available about long term use and stopping after long term use.

 

Good luck to you,

Dr.S.

 

i 

[brzghoff]

FN i posted my response before seeing yours. you brought up some good points from the article, which i didn't have in front of me. yes, i know my anxiety is not triggered by unrelated historical trauma. in spite of everything this morning. i feel okay - as long as i am engaged. 

 

thanks again for your updates, insights and pointing out the stuff i missed

[thismoment]

Wow. Good work brzghoff; thank you.

 

Our knowledge base just made a quantum leap with the communications we have had with Dr. Shipko. Questions have been answered and new ones have been born. But we're moving toward the truth, and therefore we can discover ways to progress.

 

I'm glad the issue of stress has been raised, and the circular algorithm of symptom-stress-anxiety-symptom-stress-anxiety-symptom- has been anecdotally confirmed- or at least strongly suspected. Then it's a short step to ask the question I've asked in the past: Does the quality of the discontinuation (stress/anxiety management) relate to the quality of the healing? Probably yes.

 

The long-term discontinuation yields virtually no symptoms. Because symptoms are the first stage of that circular algorithm, it's less likely it will occur (at least not as often). It's difficult not to embrace the long-term discontinuation plan. 

[Bethhalffull]

I am at the eight or nine month after a medium flakey weaning process. I had thought I saw some improvement a couple of months ago. Now I am mostly feeling hopeless. I can't get through a day without crying over something, either sad or touching for some other reason, or frustrating. I am increasingly hesitant to leave my house. My daughter's wedding is in two weeks and I can't imagine how I will get through it.

This second stage blindsided me.

What strikes me as hopeful from this correspondence with Dr S is the extreme "thinness" of his knowledge base.

I don't really understand what constitutes anxiety. I get that the fear of sobbing while I walk my daughter down the aisle is anxiety, but that is a real fear, based on something else, my broken brain that can't manage any emotion and just crumbles. What is that, the emotional failure that turns every small empathy and every tiny frustration into an uncontrollable volcano?

[TryinginFL]

Welcome Bethhalfful!  We're so happy that you have found us - we are here for you and will help you to get through this.

 

What exactly do you mean by a "medium flakey weaning process"?  Have you been bead counting or just dropping your dosage?

I am a cold turkey survivor of 9 months - it sure hasn't been easy.  Your description of what you are feeling seems to indicate that this has not been a slow gentle weaning.

 

I understand about the crying - I still have that problem and had to go through my son's wedding (in Hawaii, no less) the first week in August.  It takes a long time for your brain to rewire itself after using this poison and you were on it many years.  It is not you - it is the damn drug!

 

Please let us know how you are trying to wean off this stuff - and are you on the name brand or generic?  Are you taking any other meds?  Do you have a benzo to help with the anxiety?  (This is where you feel that you are about to jump out of your skin or climb the walls!)  I never suffered from anxiety until I got off this crap, but a benzo will be invaluable for this.

 

Sorry to ask all the questions, but we need to know in order to help you - please post soon!

 

Again, welcome to a safe place where you can vent, cry or say whatever - no one will judge!

 

Liz