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Rhiannon

The slowness of slow tapers (micro-taper)

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Rhiannon

[Admin note: Also see our topic on micro-tapers http://survivingantidepressants.org/index.php?/topic/2878-micro-taper-instead-of-10-or-5-decreases/ ]

 

[Also see:  http://survivingantidepressants.org/index.php?/topic/383-anyone-know-the-benefits-of-a-super-slow-taper/]

I post here and (sometimes, not as often) on BenzoBuddies. I've spent a lot more time over the past years working on benzo forums than on this one, though. And one thing I see a lot there, is people who are in a hurry to get off their meds as fast as they can. More dangerously (in my opinion) I see people urging other people to get off as fast as they can.

While I understand the desire to get off these drugs fast, I don't think there's enough discussion of the possible benefits of an extremely SLOW taper.

Last week I saw a reference on another forum to a man who, after many attempts and much disability, is doing an extremely slow taper off 25 mg of Valium, expecting it to take him up to 12 years to get off. I felt myself sigh with relief when I read it. I wish I could find him and talk to him. Sometimes I feel so much like the lone voice in the wilderness about this (especially on the benzo boards, less so here).

I'm working my way off five meds after 20 years of polydrugging and med changes. I now expect it will take me about eight years to get off them all, and I also suspect I may need to stay on a small dose of one of them (Lamictal) even longer than that, although, crossing my fingers and knocking on wood, maybe I won't. I'm not just goofing off or being silly. I've been tapering for 28 months now. I've seen how my body reacts. I'm basing my estimate on concrete information.

What I've seen is that how much these meds affect people, and how hard it is to get off them, is highly variable. My therapist has seen lots of people come off ADs and she says their experiences absolutely run the gamut (from effortless to total hell) even with identical drug histories. (The greatest disadvantage to getting tapering advice from the Internet is that most people are giving advice based on their personal experience. Since personal experience varies so widely, one person's advice alone, based on what worked for them, may be absolutely the worst advice for you.)

I feel like it's important to introduce the possibility of multi-year tapers to people who are approaching tapering--especially if they've failed previous attempts or have a history of difficult times with med cuts or med changes. It's no fun to hear, but it's worth wrapping your mind around. I can't tell you how many times I've heard "taking years to taper off is just unacceptable to me" or the equivalent. So, what, it's better to stay on a med or meds for the rest of your life, than to spend years tapering off?

And how many stories do we all hear, of people who've tried over and over again to get off meds, and have to reinstate, but have never tried an extremely slow taper with long holds? In the long run so many people spend years trying to get off the meds, suffer, are disabled much of that time, end up hospitalized, et cetera, and in the end they don't save any time at all.

I don't feel great during this long taper, I have to keep my activities and my life more limited than I want to, but at least I can hold down a job and I have good spells (after holds) and I do have a little bit of a social life. I hate it that my life will be constricted like this for years, but I know that for me the alternative is great suffering and being too disabled even to work or function at all.

And I want doctors to hear about it too. In all the reading I've done I've only ever heard of a tiny handful of docs telling someone it might take a years to get off a drug. Even Dr. Breggin recommends a pace that would put me in the hospital, and he's pretty conservative for a doc (I think he says, what, 10% every two weeks?--yeah, if I went that fast you might as well just send me to the ER right now.)

I'm not saying everyone will have to take this long. I think like Alto says elsewhere, it's a bell curve distribution, and I'm over on the slow end. But I think people need to know that the slow end exists and if their body is telling them that's where they need to be, they need to know it's okay and it can be done and they shouldn't feel like there's anything wrong with taking it as slow as they need to.

And maybe, if they've had a hard time in the past and so far haven't really considered an extremely slow taper over years, it's something they should seriously consider.

So there ya go. :-)

Edited by KarenB
added cross-reference; added 2nd cross-ref.

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dalsaan

thanks for the post Rhi. In order to get my head around the prospects of a really slow taper I have

to work through what it represents to me, the things I say to myself that encourage me to go faster.

 

I know that I have more trouble with the holds than the increments. I think I view the hold as disempowering,

as an expression of me 'needing' the medication, that I am beholden to it, its dictating the terms.

This isnt a very positive relationship to the hold! Rather than a barrier to being off, I need to see it as an important strategy

to success and a choice I am making.

 

I also think that not holding long enough hasn't enabled me to have the 'good spells' and the rest I need to recover and keep going,

so, being really tired, I've then wanted to speed things up, to get to the other side.

 

My experience tells me to listen to my body and that getting my head around it is important.

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Nikki

Rhi if it weren't for you and Shanti urging me to make small cuts I may not be feeling well at this time.

 

In my other tapers, I would initially go fast and then suffer terribly. I came to realize how sensitive I am to this process. Additionally, I believe some drugs are more difficult to get off of than others.

 

Paxil - was not at all doable for me.

 

Lexapro - was brutal, I took 2 years and ended up switching to Imipramine

 

Imipramine wasn't as bad as Paxil & Lexapro.

 

Celexa doesn't seem to be as deadly as the other two.

 

Is it me, or is it the drugs. AND...situational stressors have alot to do with it too.

 

I am still trying to talk to myself into relaxing into the mind-set of a slow taper.

 

Please remind me (often) of the down-side of going to fast ;) ;)

 

PS 2mgs. in the last five weeks may have been too much. I try to ignore WD. I do everything I would do if I were not tapering. It is how I survive.'

 

Schyuler....it is frustrating. I have been on support groups prior to this one and the people who did take it slow had the best recovery afterwards. I have to remember that. I, like everyone else, would just love to get off of this stuff, BUT there isn't an easier - softer way...I sure wish there was.

 

 

Hugs

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Rhiannon

thanks for the post Rhi. In order to get my head around the prospects of a really slow taper I have

to work through what it represents to me, the things I say to myself that encourage me to go faster.

 

I know that I have more trouble with the holds than the increments. I think I view the hold as disempowering,

as an expression of me 'needing' the medication, that I am beholden to it, its dictating the terms.

This isnt a very positive relationship to the hold! Rather than a barrier to being off, I need to see it as an important strategy

to success and a choice I am making.

 

I also think that not holding long enough hasn't enabled me to have the 'good spells' and the rest I need to recover and keep going,

so, being really tired, I've then wanted to speed things up, to get to the other side.

 

My experience tells me to listen to my body and that getting my head around it is important.

 

I absolutely have the same issues with holds and I'm beginning to think it's universal. For me, I hate these meds so much, that holding feels like they're winning somehow.

 

I keep trying to tell myself that it's ME that's winning, as I heal. Because I know that I heal and adapt during holds. I can feel it happening. If I hold long enough, I get to where I'm feeling pretty good. And your point about that--I totally relate and I agree, and encourage you to allow yourself the experience of holding long enough to feel good, even if that takes months. It's SO encouraging to get to that point. I cling to the memories of those times, the thoughts I find myself thinking (life is good, there's hope in my future); the way I feel strong and able to deal with stress and extra activity; and the way that even with these tiny increments, when I hold long enough to let myself feel the healing, each step I feel even better than the one before. I can tell that I'm emerging from the damage these drugs have done to me.

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Rhiannon

Hi Rhi... thanks for this thread. I've been posting on my intro about how difficult it has been to hold these last few weeks without cutting and have gotten virtually no feedback. I don't mind the dearth, but compared to the number of posts of sympathy folks get for difficult tapers, it is telling. We 'slow goers' need encouragement and support just like everyone else!

 

PS.. note my avatar. I thought my benzo taper of cut 10% from the previous, then hold for one month was slow.. now, to my consternation, I'm finding just what my image is all about. ~S

 

I'm so grateful to you for bringing that up, Schuyler. We DO need support. I think we will have to give it to each other. I don't think anyone who's not doing the turtle taper can understand how hard it is.

 

I understand why people who are ill and disabled and suffering drastically might think those of us who are at least somewhat functional don't have anything to complain about. But it's not like we don't experience withdrawal--no, we get to have the fun of withdrawal symptoms. Over and over. Just because we stop short of letting them disable us and destroy our lives doesn't mean it feels good.

 

And I still don't get to have the life I want. When I'm feeling well I tend to get involved in life, to take on projects, only to disappoint people and to have to withdraw when I get sick again after my next set of cuts. After so many years on the drugs and not being able to function, now I can see, on the horizon, the dream of having an actual life for at least what years are left me; but I still don't get to do it yet, and I have to accept that it's going to be a long time before I can.

 

And it's a different kind of psychological torture to have to keep taking these drugs we HATE, and knowing they've enslaved us and we have to keep taking them for a long time to come. At least, that's how it feels to me. I am so DONE with this crap, but it owns me and I have to keep taking it because I know what happens if I don't.

 

So--I'm not saying this to discourage the extremely slow taper. I'm incredibly grateful that my nervous system and my body seem to be able to heal and adapt, even at my age (57), and I know it's the slow taper and the listening to my body that allows that. Since I have no savings and no means of support, and I didn't work enough during those 20 years on meds to accumulate much SSI, this slow taper is keeping me out of dire poverty. And for the first time in many years, my kids don't have to worry about me or be calling all the time to make sure I'm not on the verge of hurting myself. I mean, it's totally worth it.

 

But I agree, we need support. It's not like it's an easy path.

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Rhiannon

Just one more note about holds: Over the 27 months that I've been doing this tapering thing, there have been different aspects of the process and the experience that I've focused on. Lately the thing I've been noticing most is how crucial the holds are. Right now I think they're just as important as the cuts. The cuts remove the drug, but the holds then allow your body to turn on and off the genes that need to be adjusted to adapt to the new chemistry, to remove receptors and put new ones in, and then, as you hold further, to refine the adjustments and fine tune the homeostasis.

 

These are concrete physical changes that don't seem to be able to happen quickly. (Especially since, as I've pointed out elsewhere, we don't really have any inbuilt mechanisms for healing what these drugs do to us. Broken bones, our bodies have had billions of years to evolve mechanisms to fix those; but broken brains like this are brand new in evolution. So whatever mechanisms our bodies are using to rebalance things, they're imperfect and improvised and iffy.) At least that's what it feels like to me.

 

Things get less and less wobbly the longer I hold. So that when I cut again, the system I'm re-perturbing is a stable and strong one that's going to be able to handle and adapt to the new perturbations. I think what I see happen to people a lot is, they cut and then they hold for a while, just long enough to allow the worst of it to pass, then they cut again, et cetera, but after a few of those they hit a wall.

 

I'm beginning to think--for me, at least--it's really crucial not to just hold long enough to be able to function, but to hold, at least intermittently, long enough to allow a stable homeostasis to be established, to give the body/mind a chance to attend to some deeper healing.

 

Again, for some people who can safely get off these drugs faster, it's probably ideal to get off them and then do that healing with no drug in the system at all. If you can just jump off the porch and not break your knees, go for it. But I know, for me, I have to take the steps, and even then, to stop from time to time on the way down.

 

Oh and another thing about cutting and holding: I notice that when I get into active withdrawal, I get that restlessness and anxiety and feeling of impending disaster going on, and with that comes a sort of internal pressure to Go Go Cut More Push Push NOW! and usually I cut more than I should during that time. I'm trying, now, to recognize that as a symptom of withdrawal, to hear that voice and know that when I hear it, doing exactly the opposite is what's needed.

 

And as I'm noticing that, yesterday I also noticed that right now I'm in a hold and beginning to notice the early signs of recovery and stabilization (I slept last night! 9 hours!) and I notice that although I feel like, well it would be sort of nice to be able to cut, I don't feel a pressure to, and I know it's not time yet, and that's easy to just accept. As easy as it ever gets, anyway. I grumble, but it doesn't feel like a pressure. So for me there's a sort of built-in self-sabotaging thing that happens that I'm trying to become aware of and work around. Just thought I'd toss that out there in case it helps anyone else.

Edited by Petu
fixed text

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Altostrata

Rhi is exactly right, the holds enable your nervous system to heal and strengthen to withstand the next (hopefully gentle) change.

 

Thanks for your wisdom, Rhi.

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Tom

I did a relatively slow taper. 10% roughly every six weeks. My nightmare did not start until I was almost done with the taper, at which point I decided that such a tiny dose couldn't even be doing anything, so I just stopped taking it. I knew better, but I let someone talk me into that. I wish I would have gone back up to a more stable dose and stayed there for a while. I would have rather taken a couple more years to taper a small dose, than to go through what I have. I think I would have been saved from a lot of pain and misery. But who can say for sure. Anyway, it's water under the bridge, but hopefully others will take it slow and do the holds if necessary.

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dalsaan

When the hold leads to stability or feeling good, I guess that's also evidence that your system can recover if given the chance. This is a pretty important thing to know and to keep sight of. More reasons to reframe my negative attitude to the hold!

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Skyler

Just one more note about holds: Over the 27 months that I've been doing this tapering thing, there have been different aspects of the process and the experience that I've focused on. Lately the thing I've been noticing most is how crucial the holds are. Right now I think they're just as important as the cuts.

Well said, I fully agree. This is what I’ve been trying to convey on my blog.. by sharing the struggles and angst involved in the hold period. But I’ve not been able to capture the imagination, to engage, to involve others in this part of the journey. The focus is on suffering more than minimizing symptoms.

 

What got really got to me on the now closed, but large Benzo forum I was on, was the ‘no pain, no gain’ mentality, a rationalization given again and again for pushing into withdrawal symptoms. Another was similar, but subtly different, “if I’m feeling pain I know the drug is leaving my system”.. so dreadfully misguided. A variation of Damn the Torpedoes.

 

I think what I see happen to people a lot is, they cut and then they hold for a while, just long enough to allow the worst of it to pass, then they cut again, et cetera, but after a few of those they hit a wall. I'm beginning to think--for me, at least--it's really crucial not to just hold long enough to be able to function, but to hold, at least intermittently, long enough to allow a stable homeostasis to be established, to give the body/mind a chance to attend to some deeper healing.

 

So for me there's a sort of built-in self-sabotaging thing that happens that I'm trying to become aware of and work around. Just thought I'd toss that out there in case it helps anyone else.

 

Yes… sabotage can come very much into play where withdrawal symptoms are conerned. All too often the seduction of the pain of withdrawal works into patterns of self abuse we have. Much withdrawal is unwanted, and loathed, but we can use withdrawal to self harm. This is unrecognized and certainly not treated. The prognosis for getting free of drugs is poor when this is an active factor. ~S

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strawberry17

I am an excrutiatingly slow taperer, and after many failed attempts to get off Sertraline (Zoloft) and Prozac, this works for me. I got quite phobic about reducing my drug because of the withdrawals. I am now in my 5th year of tapering off liquid Prozac. The beauty is that I can function normally in my everyday life because the withdrawals are fairly benign. I think of it as being like the tortoise and not the hare.

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Rhiannon

Rhi, I did not know either, so Googled this..

 

LOL! I have to put that on my facebook page.

 

"Weebles wobble but they don't fall down." My new slogan. (Although I have fallen down many times.)

 

About the "no pain no gain" thing--that's a lot of why I'm not posting on Benzo Buddies much now. Those people are so dominant over there it's hardly worth trying to get a word in edgewise. I'm pretty sure the opposite is actually true.

 

The ironic thing is that most of Ashton talks about taking your taper slow and adjusting it to the individual's needs, but there is this one quote from her that's always pulled out (out of context) to support the idea that you can't begin to heal until you're off the drug completely and there's no point in trying to stabilize as you go down and long holds are bad.

 

And of course you can't disagree with Ashton because she's God.

 

Well, plus, people in benzo withdrawal get crazy and hostile, so it's not the most gratifying place to interact with other folks.

 

So much unnecessary suffering.

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Skyler

And of course you can't disagree with Ashton because she's God.

 

Well, plus, people in benzo withdrawal get crazy and hostile, so it's not the most gratifying place to interact with other folks.

 

So much unnecessary suffering.

 

Argh, Dr. Ashton walked into a 'good thing' in terms of maximizing what she could achieve, and because she is a good person, she stayed with it. But she is not SAINT ASHTON. BTW, that quote is taken out of context? I thought it was always cited as was, Gospel (speaking of).

 

I have no idea why people on benzos get so wrapped up in hostility, but I've noticed the same. The people who run the forums are always in fear of some sort of retaliation, and the whole culture has just gotten warped. My psychobabble background aside, I'm clueless about this. Dunno. This forum is civilized and I'm grateful for it. ~S

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Altostrata

Great conversation. Thanks for those links, annej.

 

Weebles! LOL

 

I think the concept that tapers should be individualized may be difficult for some online support groups. There seems to be a tendency to "one-size-fits-all" advice. I can see how this makes the job a lot easier for moderators, but as we can see, those who don't fit the mold suffer from misguided advice.

 

The "keep tapering no matter what" mantra -- well, I don't get that at all.

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annej

 

 

Anniej,

Really important point. Any extremism is potentially harmful. I think we all can relate to that moment of realizing that the "science" is actually fraud and then the desire to divest of it in totality as soon as possible. It's a cruel irony to continue ingesting and paying for drugs that not only didn't help, but caused permanent harm. Can you imagine a refund?

 

Ive mentioned this elsewhere... at the ISEPP Conference, there was a general sense that antipsychotics are "the bad guys" and SS/NRIs their innocuous cousins. One doc who now dedicates his practice to helping people get off "psychiatric drugs" claims that SS/NRIs are not a problem and neuroleptics ARE. It's a feeling of competition "drug class X is worse than Y or Z". Very disturbing when the entire premise of balancing neurotransmitters is fraud.

 

It's just so crazy. I simply don't listen to this crap anymore (x being worse than y, etc). Unfortunately the fabrication of the chemical imbalance is still very much intact and consumers are very much part of the problem. So many of life's problems simply cannot be solved by a pill(s). This is not to blame the victim, but "we" (collectively) need to stop walking into doctors' offices looking for something to make our psychosocial lives better. Too late for me, but perhaps not too late for the next generation. I retain hope for future generations as the cracks in the foundation of psychiatry begin to widen.

 

Problem is, I didn't go into a shrink's office looking for these damn pills. When I melted down in my gp's office a few years ago, I was sent to psychiatric e.r. I was referred to behavioral health, and, being the gullible fool that I am, given this poison. Had i known then what I know now, I would have said no thanks. Ditto for my earlier experience with antidepressants with a different gp. At the time, I was having extreme issues with stress from issues with my supervisor, (which is why I will never work in another government job. That kind of crap is not worth it.) and was prescribed Prozac, then Effexor, then amytriphaline, rather than being assigned a therapist.

 

I am beginning to realize that people try to rush a withdrawal purely for economic reasons. I am just as guilty of this line of thinking. If you're not producing (or over-producing), you're eliminated.

 

Hi Meistersinger,

 

I think there are probably many reasons why people try to rush through withdrawal. I know for me there was an element of ignorance and some "magical thinking" that I was not going to be "one" of those people who would have much of a problem withdrawing from a multitude of pills. Arrogance is what comes to mind.

 

Today, I am working on acceptance of "what is, is". It can be a very bitter pill indeed. :) Many Hugs, Annej

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Rhiannon

"The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not. It is better to grit one's teeth and continue the withdrawal. True recovery cannot really start until the drug is out of the system.""

 

Well, I'm going out on a limb here, because I'm sick of hearing this stupid quote: There is NO concrete evidence that this is true. Those studies have not been done. It's an OPINION.

 

With which I disagree. For one thing, clearly "the dose may be stable but the withdrawal symptoms are not" can't be correct, because I know many people whose withdrawal symptoms stabilize and disappear between cuts, including me. I'm here. I'm real. I'm not chopped liver. My benzo withdrawal symptoms stabilize quite regularly on progessively lower doses of benzodiazepine. So, sorry, dare I say it: Ashton's wrong. At least in my case. And I've known other people too doing slow benzo tapers who stabilize between cuts before cutting more.

 

Not to be snarky, but I would like to mention that Ashton did most of her most prominent work back before neuroplasticity was even an accepted paradigm (so it may not be a big part of how she thinks about things.)

 

I think there's every reason to assume that given time, a CNS can restabilize and get itself back into balance with successively lower doses of the drug using some variation on the same mechanisms that it uses to restabilize and get itself back into balance when the drug is removed altogether. I think it's a perfectly reasonable hypothesis that this would explain why a slow taper works so well for some people and symptoms often disappear after holding long enough.

 

Probably ideally, if someone can get off a benzo quickly, the best thing to do is to get it out of the system and then allow the receptors to fully repopulate and all the other stuff to happen to renormalize the CNS.

 

But this isn't practical for many, many people. Many people have to go slowly. Many people get very sick when they try to "grit one's teeth and continue the withdrawal." And the kind of sick they get can be very, very bad. In fact, it can keep them from ever getting off benzos at all; often they end up polydrugged as a result of getting so sick.

 

So I think this is terrible advice. I don't care if it was said by Heather Ashton, or Ashton Kuchner, or God Herself. Very often it's just the wrong advice.

 

Personally, I suspect that going too fast, and not allowing adequate holds, can cause a level of chaos that overwhelms the brain's ability to heal and adapt, and you can end up with all kinds of mangling that wouldn't have happened if you'd gone more slowly. Damage that can be difficult to reverse.

 

It makes NO sense to me that a forced, calendar-based schedule of tapering would somehow be more adaptive and healthy than a symptom-based schedule. Bodies are living things. You don't expect a bone to heal 10% every two weeks; it heals the way it heals, depending on many factors, and you don't rebreak it if it's not healing as fast as you want it to. You don't expect a tree to grow 10% every two weeks either, or a baby. Living things are flexible and adaptable and complex and affected by many factors.

 

I think basing a taper on your tangible, obvious, personal, individual symptoms makes much more sense than basing it on some generalized calendar schedule that somebody somewhere wrote up.

 

By and large what I have seen with benzo tapers is that if people start stable, and go slowly enough to stay stable, and never let the symptoms escalate out of control, and never push past symptoms, they can actually have pretty decent tapers and stay functional and do okay. Admittedly, that often requires going much more slowly than most people are willing to go.

 

And although I don't have them memorized, I am pretty sure there are about three or four or thirty-seven times as many quotes from Ashton saying that people need to find their own pace to control their own symptoms. But this is the one you hear all the time. I'm sick of it being bandied about. I've seen a lot of suffering result from this approach and I'm just sick of it.

 

I hate it that BB has been taken over by the "no pain no gain get off fast if it kills you" crowd. I'm so grateful that when I started my tapering, on a different forum, calmer heads were prevailing there and I was advised to go slowly.

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Skyler

Oh Schuyler, I knew you didn't agree. My head of steam about that isn't because of you, it's because I'm just sick of hearing this. It's like this one quote totally negates everything else Ashton ever said about pacing. I don't know why people are so adamantly stuck about this. I'm just sick of it. And BB has been taken over by these types. I even had someone arguing with me that CT was maybe not such a bad idea.

 

Rhi, I think people are so taken with this for three reasons, 1, a simplistic approach lends itself to black and white, easy to enforce, top down power. And 2, a little knowledge (besides being dangerous) can make for a bit of a self important ego trip.

 

On TRAP, Budgie and Linux contacted Dr. Ashton to tell her their experience was that people who held for 1 month holds consistently had a better outcome than those who did a taper with 2 to 3 week hold periods. They were frustrated she never got back to them, and Budgie rarely pointed anyone to the page Linux put up about this because they felt exposed without medical cover. They would not openly advocate anything that did not have a bona fide MD supporting it. So that would be reason #3. As cool as Budgie was with most issues, she would not stick her head out on that, except for some reason she took me under her wing.

 

I did get taken on the tol withdrawal issue, but I was starting to make waves. My last hurrah on TRAP involved a series of posts I made with questions asking if there were any facts behind the hard and fast "don't hold more than 4 weeks" advice they gave. Silence. (Oh, also, after Budgie left, both she and I were maligned for holding overlong needlessly.) I even asked the admins if they were basing their advice on a hypothesis derived from experience as opposed to fact, which I said of course was acceptable (I lied, but who was to know). Silence. You coulda heard a virtual shoe drop. Shortly after, I got my ticket out of Dodge for a silly misunderstanding that was technically in violation of their rules. It could have been cleared up with one email exchange, but obviously the dye had been firmly cast.

 

In hindsight, I'm befuddled as to why it took me so long to discredit tol withdrawal on this forum, but the brain washing must have taken more than I realized. There really was a with us or against us mentality. Was BB better in this regard before so many from TRAP migrated to them? TRAP helped many people, but sadly some were made worse in the process because they were unresponsive where this issue was concerned. Jeez, I had no idea anyone was doing things differently until I got here.

 

Heh, and you thought you were the only one who needed to vent!

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Skyler

Thought I'd bump this cos it's such a good thread.

 

A helpful way for me to think about this is to imagine everyone's brain has a set time for recovery - some people take 2 months, some people take 2 years, some even take 5+ years. So you can either choose to quit cold turkey and suffer for those 5 years, or you could choose to do a slow taper and actually function for those same 5 years. Of course, I know it's not strictly true, as I've heard people who quit cold turkey are more likely to suffer for longer than someone who slow tapers. But the point is you can't rush things

 

Another way to think of the brains' 'set time' is drugs are not out of our system until we stop having withdrawal symptoms. Though we may have stopped taking a drug, as long as our neuroceptors respond, they are in our bodies. It is our response to the drugs that is telling, not their journey through our body.

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Barbarannamated

I went back and read through this thread and some of Rhi's comments, in particular. She emphasizes time and again how these drugs make profound changes to our brain/body and genetic coding. I hesitate to say "permanent", but agree with her paradigm that "healing" does not apply to this as is does a broken limb or other physical problem. Our bodies (inclusive of brain) are adapting as best they can to the removal of toxic chemical to which they adapted over many years or decades in some cases. I believe it's unrealistic to expect to return to original undrugged state. When I worked with psychopharm researchers, subjects were sought who were "medication naive". It was known that even 1 dose of these drugs irreversibly changes the brain. I witnessed that with 1 dose of Seroquel. The 2nd dose effected me far less than the 1st that knocked me out in a way that scared the s*** out of me. That experience and realization of how strong these drugs are has stuck with me.

 

I believe we have to move away from any thought or talk of getting the drug out of the body. It is counterproductive and attempts to simplify an amazingly complex cascade of irreversible physical adaptations. This is not to say that readaptation and IMPROVEMENT cannot happen. It is not ever a "healing" to original state in the traditional way of thinking.

 

It may be more accurate to compare the chemical insult to traumatic brain injury/concussion/stroke. People do regain function and sometimes even more and different abilities than pr-injury (artistic, musical ability, etc). However, it is accepted that once the brain is injured, that "scar" will always be there to some degree. I might argue that a concussion is not as pervasive because it is localized to the brain (and imageable). Yes, it will effect the entire body because the brain governs the body. The drugs effect the body in entirety as well.

 

I hope I have not misquoted or misinterpreted Rhi. I am not trying to discourage anyone. I believe it lessens the gravity of the damage these drugs do to refer in any way to ridding the drug from the body. I realize halflife comes into play TO SOME EXTENT when tapering, but that is a small piece of the overall picture.

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Altostrata

Great post, Barb.

 

The point of tapering is to minimize damage to the nervous system. Each person should go as slow as he or she needs and not take chances with cold turkey or waiting out withdrawal symptoms. You only have one nervous system, and it runs your life!!

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Rhiannon

I went back and read through this thread and some of Rhi's comments, in particular. She emphasizes time and again how these drugs make profound changes to our brain/body and genetic coding. I hesitate to say "permanent", but agree with her paradigm that "healing" does not apply to this as is does a broken limb or other physical problem. Our bodies (inclusive of brain) are adapting as best they can to the removal of toxic chemical to which they adapted over many years or decades in some cases. I believe it's unrealistic to expect to return to original undrugged state. When I worked with psychopharm researchers, subjects were sought who were "medication naive". It was known that even 1 dose of these drugs irreversibly changes the brain. I witnessed that with 1 dose of Seroquel. The 2nd dose effected me far less than the 1st that knocked me out in a way that scared the s*** out of me. That experience and realization of how strong these drugs are has stuck with me.

 

I believe we have to move away from any thought or talk of getting the drug out of the body. It is counterproductive and attempts to simplify an amazingly complex cascade of irreversible physical adaptations. This is not to say that readaptation and IMPROVEMENT cannot happen. It is not ever a "healing" to original state in the traditional way of thinking.

 

It may be more accurate to compare the chemical insult to traumatic brain injury/concussion/stroke. People do regain function and sometimes even more and different abilities than pr-injury (artistic, musical ability, etc). However, it is accepted that once the brain is injured, that "scar" will always be there to some degree. I might argue that a concussion is not as pervasive because it is localized to the brain (and imageable). Yes, it will effect the entire body because the brain governs the body. The drugs effect the body in entirety as well.

 

I hope I have not misquoted or misinterpreted Rhi. I am not trying to discourage anyone. I believe it lessens the gravity of the damage these drugs do to refer in any way to ridding the drug from the body. I realize halflife comes into play TO SOME EXTENT when tapering, but that is a small piece of the overall picture.

 

I want to clarify that the gene changes I am referring to are not permanent changes to genes. Our bodies turn genes on and off all the time, that's how they work. I'm just emphasizing that our brains do change in reaction to these chemicals, in ways that are physical and concrete and not quickly reversed.

 

So the presence of the drug and half lives and such are really only minor issues in withdrawal. (Other than when it comes to timing your doses and that sort of thing.)

 

The major issue is neuroplasticity; our brains have reorganized themselves around the presence of the drug, like a plant growing on a trellis reshapes itself around the trellis. You can't just yank out the drug and expect everything to be okay. You can remove it slowly enough to allow all that reshaping to undo itself, and allow it to renormalize.

 

I doubt that after 20 years on psych meds my brain will ever be what it would have been without them. But I've been learning a lot about neuroplasticity lately and I think it's safe to be optimistic that it can recover and return to an excellent level of function. I'm doing so much better already it amazes me. I had hoped to do well, but this is exceeding my expectations and hopes.

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alexjuice

"The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not. It is better to grit one's teeth and continue the withdrawal. True recovery cannot really start until the drug is out of the system.""

 

Well, I'm going out on a limb here, because I'm sick of hearing this stupid quote: There is NO concrete evidence that this is true. Those studies have not been done. It's an OPINION.

 

With which I disagree.

....

 

From my psychiatric bio:

 

In 2004, I reduced from 5 or 6mg klonopin to 2mg in four weeks and fell apart. At the start of the same four weeks I discontinued lexapro 10mg and abilify 5mg cold turkey. I increased alcohol consumption to deal with horrific withdrawal. I agreed to go to rehab and I would have agreed to anything if someone with a white coat told me it would alleviate the madness.

 

At rehab, I was put back on lexapro and back on a neuroleptic. My klonopin was upped to 3mg, so 2 or 3mg less than the 5/6mg dose I'd taken every day for many years.

 

I spent 150 days (yeah, that's a long time) in treatment. It took me many months but I left with no benzo w/d symptoms despite a signficant reduction from original dose. I remained w/d symptom free on 3mg klonopin for three years, including an 18 month period of total alcoholic sobriety, during which I graduated from college and had a serious romantic relationship.

 

Of course I had issues during those three years but they were not symptoms of benzo withdrawal but symptoms of being on high dose Neuroleptics and antidepressants. For instance, during benzo w/d I had issues of insomnia, dizziness, irritability, anxiety, diarrhea, loss of appetite. My primary complaints during the three years post-rehab were, not suprisingly, unrelated and often the converse: exhaustion, oversleeping, weight gain, sexual dysfunction.

 

I more or less, achieved homeostasis which held for years on a fraction of a previous therapeutic dose.

 

I disagree as well with the statemment above.

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Skyler

Hi lp.. Rhi and Alex are talking about tolerance withdrawal as conceived for benzos, and how it is safe to hold for prolonged periods for most people. I had to confront my fears about holding so I could get stable. This in March/April of this year after an abysmal effort to reduce Lyrica which triggered a miserable episode of severe tinnitus. Thought you might want to take a look at the thread we have on this.. Link

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starlitegirlx

I didn't even know this thread existed. Such a great topic that really needs more emphasis.

 

I think in many cases, the idea of a slow taper is all about two things: 1) impatience and 2) wanting the drugs out of our systems because once we realize the damage they cause, we get that sense of urgency because we feeling like we are poisoning ourselves. At least those were the two main factors in my desire to go at the 10% rate or more.

 

Then I paid the price for that rate and discovered fast tapers are the enemy to those of us that have difficulty with tapers in general. Rhi was so right with that original post. I wonder how many people wasted precious years doing faster tapers only to end up suffering and back on the med or on it at higher doses or even the original doses. I wonder how many gave up the idea of getting off them at all. That's bloody insane.

 

My personal experience so far with the beginning of my benzo taper is that even at 7% which is lower than the so often recommended 10% it seems to have produced some lag and requires a longer hold after the second cut. So it must have been too high. Of course, the WD is not bad, but it's there and honestly, if I can minimize it then going slower and making smaller cuts is worth that to me. If I can not suffer through this taper and have some reasonable facsimile of a life for the next several years as I taper along with quite likely mitigating any kind of protracted WD that might come with a faster taper then slow and steady it is.

 

The drugs are already in my system. My body has already adapted to them. It's taken years to get here.

 

Prolonging my taper by a few years isn't going to change my past but it may make my future more livable and reduce suffering which I am all for. Unless being on the drug is causing intolerable issues, I just don't see the reason to get off it fast when that can add a lot of risks into the mix.

 

Don't misunderstand me. I want to be off this drug ASAP. I have zero desire to spend years doing this especially when there's no guarantee that even with years of slow tapers protracted WD is less likely or lessened in any way, but then again, I'm fairly certain I picked that bit up from the fast taper folks.

 

Truth is there probably aren't enough slow taperers out there to give us any kind of data as to if there is a difference in the end when you are off it regarding protracted WD. But there are enough people here that have said that they feel better doing slow tapers, so that's something to which I can relate. I'd much prefer having a better quality of life during the journey than living through hell for however long to get to some finish line especially when that finish line could very well be protracted WD (which I truly suspect is more likely to happen or be worse and more prolonged if you taper fast because of lag time and the body/brain not being able to adapt and repair/heal along the way because it was happening too fast - like a kid who grows too fast, he ends up with bad knees because his knees couldn't support the weight of the body from such speedy and extreme growth spurts).

 

I'd PREFER to not slow taper, but looking at the big picture, I would PREFER to not live though hell during it and to not have to updose or reinstate. I would PREFER to live a life that doesn't feel like straight out suffering in order to get off this freaking pill. And since I've already been on it for 16 years, I'm figuring a few more years won't make a huge difference in the long run, while being able to look back and not see the time as a hellish memory I wish to forget is something worth the wait. I just can't justify causing myself more suffering at this point. I feel like we've all suffered enough.

Edited by JanCarol
Paragraph breaks for ease of reading

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Rhiannon

When I notice that I'm getting withdrawal symptoms to the point that they're interfering with me doing what I want to do with my life, I hold my taper until things improve. That includes insomnia, for me.

 

And this varies depending on what I'm wanting to do with my life. When I first started my taper, getting down to lower doses was a higher priority for me than a lot of other things, since the effects of the drugs were interfering with my ability to work and earn money to survive. Plus I just felt miserable anyway from the effects of the drugs. So I pushed my taper more and stayed more symptomatic more of the time.

 

Now, I'm on lower doses of the drugs and feeling better and functioning better and getting my personality back after 20 years. I'm having so much fun just being able to relate to people and be my natural extroverted social self. I love it that I want to get out and explore the world outside my door and do new things. I lost all that for 20 years so it's a big deal for me to have it back.

 

So now I'm doing more out in the world, taking on more projects and new experiences, plus working a very physically and neurologically challenging shift (graveyards, ten hours, seven on and seven off). So I've slowed my slow taper down even further.

 

The taper's not so much a project or a goal for me nowadays, just something that keeps going on in the background of my life. I still have to work at patience all the time, but now that I'm enjoying the payoff of feeling better and having more fun in my life, it's easier. Although I still hate hate hate the drugs and hate every single time I have to take any at all.

 

And I still have crappy withdrawal from time to time. Not saying that has ended. I just take it as a sign it's time to hold again.

 

I think it's good to be aware that if you do a slow taper, you may be feeling much better when you get to lower doses, even if you have a long time to taper yet. You may be in less of a rush to get off once you see how improved you are at lower doses. Which makes it easier to keep moving slowly.

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Ip51

I was worried about tapering gabapentin because I had read from other benzo folks that the w/d symptoms are very much like benzos and for some people even worse. I started a conservative taper of 3% and after 14 days of daily micro cuts I got slammed hard. I’ve been holding for a week and I think things are starting to settle down for me. I’m going to hold for a couple of more weeks and then start out even slower and include a lot of holds. I’m at 1500 mgs so this could take me forever. Wow this is discouraging. But I realize that a slow taper is the only safe option I have.

 

 

Just so you know, I am currently withdrawing from a psychotropic at 1% every 3-4 weeks. Tried a little bigger drops and got slammed every time. I was forced to reinstate until I found the right level. Now it is almost unnoticed so doesnt ruin my life but will take years to withdraw. I just had to accept this and believe I am better off this way...can function and withdraw,

Good luck, you are almost there!

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Rhiannon

Thank you Alto for the great advice. I wish I would have read your thread on micro-tapering before I started tapering. I was able to make daily micro cuts on valium so I naively assumed I could do the same on gabapentin.

 

Well, we live and learn, right? :-)

 

Once you feel stable and start to cut again, be really conservative for a while, with small cuts and with breaks in between. It's better to start slow and small and conservative and then slowly build up until you find your "sweet spot" for tapering, than to start out with both barrels blazing and then crash and hit the wall.

 

Sounds like you're figuring it out, though. And you've done a benzo taper successfully, so you're way ahead of the game already. High five to ya, and best of luck with the rest of your taper!

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starlitegirlx

I wasn't sure if this was the right place to put this but since it's the tapering section, it seemed right.

 

I'm a few months shy of being off my AD 1.5 years but very likely still sensitive from it. I began to taper klonopin about six months after being off the AD once I realized that I had to taper it. But my rate of taper is very slow to keep WD minor while still going at a somewhat reasonable pace. General guidelines for tapering are too fast for me. Way to fast in some cases. This taper will take me several years. At least five. Likely more. Sometimes it's really scary because I know that it's not safe to stay on this drug so long but I don't really have any other option.

 

Is there anyone here who is doing a long taper like this? I think it's that it's going to be over five years for me that is really what gets to me. And I'll be taking miniscule doses at the tail end with probably even slower tapers because often people find they have to go even slower at the lower doses. A few years I could handle. But this is more like staying on the drug while weaning down over a crazy long time. Then I've seen so many people taper off in just a year or two maybe three and I feel like this is a lifelong endeavor or something.

 

I guess I'm just looking for tips from people who are dealing with long tapers and how you handle it or think about it... something to help me cope with the time frame or the idea that staying on it that many years longer even though I am slowly decreasing the dose and hopefully healing as I do.

 

Thanks.

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Abilifyneedhelp88

I understand your plight...I often think about that as I am just at the beginning of my journey. How long with this take? I just started day one of the liquid Abilify at 13.5mg from 15mg and I look at that big bottle of liquid and it looks daunting. And at the same time I am tempted to go down 5mg but I realize that may be a mistake so I am holding here. It's only day one and I plan to hold for a month even though I know I am risking my life for the less than 1% or more of deadly side effects. I am not sure what else to do and the doctor could only tell me to go down 5mg because he says that is the only mg less it comes in. I am damned if I stay on it and damned if I go off. Just lovely.. I hate being in this position trying to live my life..And if you complain about a symptom, they just want to give you more drugs....so I have decided to start a journal about how I feel about this to document my symptoms and if something should happen to me, it will all be documented so someone can sue Otsuka...

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Rhiannon

Hi starlite--

 

I guess you know, I'm on a very long term taper. It will be four years in February and I think another three years to go probably before I'm done entirely with all of them. Maybe four. Whatever it takes. I'm going as fast as my symptoms allow me to go, and that's the speed limit. I don't seem to have a choice about that.

 

A couple of things seem to help me. One is this: I have found that being on lower doses does make a difference. Probably not as much as getting off entirely will, but it's definitely way better, and I'm enjoying the improvement. You don't have to wait till the end before you feel better. So that's been pretty rewarding for me, and I think you can expect something similar.

 

Another thing is realizing how many people never do successfully get off their meds, especially if they were on them long term like me and ended up on polypharmacy like me. I realize that I am actually very fortunate that somehow I stumbled onto the path that led me to realize that the meds were my problem, and that led me to the people who could help me figure out what to do about that and support me in my process. So many people never get here.

 

And mostly, I just don't think too much about the years. I try to focus on small steps and celebrate them.  I try to focus on Now and find as much joy as I can. (Well, on good days. Some days I just hang on by my fingernails and try to remember to breathe.)

 

I know people who have painful, disabling chronic health conditions that there is no cure for. I sometimes think of this iatrogenic condition of psych drug addiction as being something like that, only with more hope. 

 

I think we all have to find our own path to peace and acceptance.  For me that's an ongoing project and a spiritual discipline.

 

But at least I have this "home" here where I can get support and people understand. That helps too.

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Meimeiquest

Hi Starlite,

 

I'm not ready to start tapering again, but when I do, I think I am going to stagger taper my last two drugs over years. First, because I've already done more than enough damage to my daughters, but waiting 6 years till they're both grown to even start the taper is too long to just stay on the meds. Second, I might need one drug for bipolar, I want to come off lithium slowly enough that I won't think my symptoms are just from tapering too fast.

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lexicon

My question is, how does one proceed, if there is no sight of stability

after holding for a month..

Not a glimpse of it .. :(

I am planning on holding for awhile, but wonder if any of you have seen some kind

of stability while holding ..Like symptoms relaxing even a little bit,

to feel some comfort to carry on ..

Because it seems damned if you do, and dammed if you do not ..

Thank you, I am grateful for any thoughts, or encouragement ..

Lexi

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ladybug

I've been tapering for almost 7 years now, which could be a record. Even so I have hit a walll at 6.4mg. I destabilized in June and have been holding since then but actually seem to be getting WORSE not better. I wonder why my experience is so different than those who are able to hold longer and feel better. I think if I had to do it over again I wouldn't have gone SO slow. I thought I was doing the right thing by giving my brain ample time to adjust to each new dose, but if that were the case why am I doing so badly now. Perhaps I am at that dose where Paxil begins to be eliminated quicker and people have to go slower, except it's impossible for me to go any slower than I was.

 

If it gives you any consolation I was doing much better when going slower, although not "normal" just "wdnormal". I thought benzo tapers were able to be done more quickly than SSRI tapers? Do you find 5% a month is still too much? Perhaps you can do microtapers more often like Rhi is doing?

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ladybug

My question is, how does one proceed, if there is no sight of stabilityafter holding for a month..Not a glimpse of it .. :(I am planning on holding for awhile, but wonder if any of you have seen some kindof stability while holding ..Like symptoms relaxing even a little bit,to feel some comfort to carry on ..Because it seems damned if you do, and dammed if you do not ..Thank you, I am grateful for any thoughts, or encouragement ..Lexi

How long were you on the Lexapro and Zoloft? Cold turkey is no joke, so it could be you are still sensitized from that. Maybe you should wait longer before attempting to taper the benzo any more? It could be that it's just too much for you right now.

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lexicon

Thank you, I agree with you and am not planning on tapering any further.

But my question is, is why there is no relief ..Most symptoms are in the back of my head, and feel like carrying all this weight on my shoulders.

And I suffer an uptick in symptoms, especially when the benzo reaches peak time ..

Any thoughts or encouragement would be appreciated.

 

I hope that you work out your tapering issues ladybug ..I feel for you deeply.

I wish I had an answer for you ..

But someone with knowledge should come along to help.

Wishing you blessings.

 

Thank you for letting me post on your thread Star ..You always are kind and gracious .You are in thought and prayer..Take good care ..

Lexi

 

PS.

 

Sorry ladybug, I was on Zoloft the whole of 2012 .On Lexapro twice, using it as a bridge to taper off Paxil, and Zoloft.

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