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peggy

upregulating downregulation....

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peggy

I really want to try to understand a little more about what is probably happening at the receptor and further up/downstream following antidepressant reduction and eventual withdrawal.

 

I used to think (a bit naively) that because of the SSRI, the feedback loop to produce serotonin was turned off and so when we stopped the SSRI, what little serotonin that was in the receptors was quickly taken up, leaving a paucity to be released until the feedback system ramped up production again.

 

As we slowly reduce, what is probably happening? And is there anything else we can do (apart from going really slow) to help?

 

And, finally....if someone has done a really, really slow withdrawal and had little to no symptoms on the way down, do they get symptoms when they finally stop (assuming that they go as low as they can continue to physically reduce). I have read where people have said they did slow reductions and still got slammed when they came off and that doesn't really seem like it should happen - are they exaggerating their 'slamming' or their slow reduction, or are we really all doomed....

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jr1985

Probably what's happening when you reduce is the brain senses the slight drop in serotonin and starts to gradually unregulate receptors. I don't know what you can do to help other than diet, exercise, meditation, etc. But I don't know if those thinks help up regulation, but I imagine they cant hurt.

 

I think everyone has a different definition of slow when it comes to tapering. To me, tapering over a month was slow, to someone else, 2.5 years is slow. I think it goes back to what I said in Rhi's thread, if someone requires 5 years to taper, and they only spent 2.5 years, then it's not really slow and they're probably going to have problems.

 

I still can't get over how ridiculous it is that people have to spend years trying to get off these drugs, yet I was able to quit Ritalin (a "dangerous potentially addictive drug!") cold turkey with hardly any ill effects.

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Skyler

Hi Peggy...

I really want to try to understand a little more about what is probably happening at the receptor and further up/downstream following antidepressant reduction and eventual withdrawal.

 

I used to think (a bit naively) that because of the SSRI, the feedback loop to produce serotonin was turned off and so when we stopped the SSRI, what little serotonin that was in the receptors was quickly taken up, leaving a paucity to be released until the feedback system ramped up production again.

 

As we slowly reduce, what is probably happening? And is there anything else we can do (apart from going really slow) to help?

A slow withdrawal is the only way to reset neuroceptors. Alto discussed supplements that can be a comfort in some cases, but they do not roll back damage that has been done, only time can do this.

 

This is a post Alto put up on up and down regulation: http://survivingantidepressants.org/index.php?/topic/392-one-theory-of-antidepressant-withdrawal-syndrome.

 

This link has info on how to search this site: http://survivingantidepressants.org/index.php?/topic/2778-how-to-find-just-about-anything-on-this-site/page__pid__29419#entry29419

 

And, finally....if someone has done a really, really slow withdrawal and had little to no symptoms on the way down, do they get symptoms when they finally stop (assuming that they go as low as they can continue to physically reduce). I have read where people have said they did slow reductions and still got slammed when they came off and that doesn't really seem like it should happen - are they exaggerating their 'slamming' or their slow reduction, or are we really all doomed....

I have not read about anyone coming off with withdrawal symptoms who has had a very slow withdrawal and no symptoms on the way down. My guess is they jumped off at too high a dose at the end. It's also possible they did not taper as slowly as they thought, to find lag time caught up when they dropped off. There has to be someone this has happened to, but in 20 mos experience on forums, it's way out of the norm.

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Skyler

I still can't get over how ridiculous it is that people have to spend years trying to get off these drugs, yet I was able to quit Ritalin (a "dangerous potentially addictive drug!") cold turkey with hardly any ill effects.

 

Stimulants are a lot easier to get off, taper wise at any rate. Same for opioids. My doc was just telling me about how dreadful it is for people who are on opioids when they lose their health insurance, but was clueless about the fact for AD/benzos/anticonvulsants take much longer to taper. This when he has supported 2 years of my slow tapering a benzo, and now Lyrica. I could only shake my head. It took me several months to taper an opioid, years for the benzo.

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Barbarannamated

 

I still can't get over how ridiculous it is that people have to spend years trying to get off these drugs, yet I was able to quit Ritalin (a "dangerous potentially addictive drug!") cold turkey with hardly any ill effects.

 

Stimulants are a lot easier to get off, taper wise at any rate. Same for opioids. My doc was just telling me about how dreadful it is for people who are on opioids when they lose their health insurance, but was clueless about the fact for AD/benzos/anticonvulsants take much longer to taper. This when he has supported 2 years of my slow tapering a benzo, and now Lyrica. I could only shake my head. It took me several months to taper an opioid, years for the benzo.

 

I can testify to all of this. Opioids were not problematic for me to discontinue. Ive CTd Vyvanse a few times because ive had trouble finding a new doc. I definitely feel the lack of Vyvanse (similar to Ritalin), but it is linear and expected, not bizarre new symptoms like in Pristiq withdrawal even 1.5 years out. Also, I can go back to opiates and Vyvanse and respind the same way I did previously. I don't have unexpected, extreme sensitivity. Predictability is the difference.

 

I believe that serotonin effects the entire body in hundreds of unknown ways, far beyond up/downregulation of receptors and neurons. Rhi explains it best with her description of how SSRIs change genetic coding. I dont know that other drugs dont do that to some degree, but serotoergics seem to have particular widespread effects that may never be fully understood.

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areyouthere

 

And, finally....if someone has done a really, really slow withdrawal and had little to no symptoms on the way down, do they get symptoms when they finally stop (assuming that they go as low as they can continue to physically reduce). I have read where people have said they did slow reductions and still got slammed when they came off and that doesn't really seem like it should happen - are they exaggerating their 'slamming' or their slow reduction, or are we really all doomed....

 

This is a really, really good question and I'm super glad that its come up.

 

I too have read the posts where people have done a slow taper, held until stable etc. and continued at 10% drop or even less , like, 5% and at the end when it seems that last taper is the hardest even LESS and be "fine" thinking the worst was over, they were home free only to, as Peggy said, start to experience serious symptoms , sometimes described as "being slammed", up to 8 months after a completed taper. Who wants to go through that?!

 

It can be confusing because there is debate as to whether this phenomenon of the return of symptoms is delayed WD or the return of the "condition" ie. the depression or anxiety , that precipitated the being put on the meds in the first place.

 

I am very interested in the answer to this question. hanks, Peggy.

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Altostrata

The neurohormone receptors are like tiny valves. They're set to automatically regulate the level of neurohormone in the system. This is called homeostasis.

 

When the amount of a neurohormone, such as serotonin, jumps, some of the receptors close. This is downregulation (or desensitization). Fewer receptors remain active to allow serotonin in, in an attempt to keep system serotonin levels normal.

 

If the amount of a neurohormone sinks, more receptors will open up to make the correction. This is upregulation.

 

Normally, the fluctuations of neurohormones are small and the receptors upregulate and downregulate a little all the time (an aspect of neuroplasticity).

 

It is unknown what happens when a neurohormone is flooded chronically, as happens with psychiatric drugs. The receptors downregulate to an extreme. This is a highly abnormal state to which the human nervous system was never exposed throughout its evolution.

 

(Drug-induced emotional anesthesia or, in its more persistent version, "treatment-resistant depression," may be an iatrogenic state of maximal receptor downregulation.)

 

There are theories that the self-regulatory ability remains intact. Others believe the self-regulatory ability breaks; still others think this might happen but the nervous system corrects itself through other receptors (redundancy of systems).

 

It may be there is genetically determined variation regarding the stubborness of receptors across individuals; in some people, the self-regulatory ability is overcome and in others, not.

 

People who can quit cold-turkey with no symptoms may be people whose receptors never did much downregulation. People who have trouble with small decreases in dosage may be people whose nervous systems are highly adaptable and downregulated a lot (neuroplasticity again).

 

We just don't know.

 

We do know that withdrawal syndrome is caused mostly by downregulation of neuroreceptors. The body's serotonin production may be absolutely normal, but the receptors can't feel it and they're not doing their jobs passing information along to the rest of the system.

 

As with any injury to the body, it needs to repair itself cell by cell.

 

We also know that people do recover from taking vast amounts of psychiatric drugs and having terrible withdrawal problems. After gradual tapering, many people do well with few post-acute withdrawal problems. Upregulation, or whatever other adaptation the nervous system makes to re-establish a healthy state, does occur.

 

We can also trust the nervous system to want to be healthy and normal. It's always trying to do this, that's its job.

 

Slow tapering enables 1) whatever upregulation can occur to do so 2) the rest of the nervous system to adapt to existing downregulation and 3) gradual re-establishment of the normal system of checks and balances in the nervous system.

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peggy

thank you so much Alto - that was a great explanation - especially substituting the word desensitisation for downregulation - that makes a lot more sense to me now.

 

i guess that would be another reason to avoid taking something like 5Htp - or maybe even tryptophan? to avoid increasing the serotonin too much and thereby keeping the system in imbalance?

 

i really want to shout the warning about SSRI's from the mountain tops!!!!!

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Altostrata

Yes, it may be the reason people often have bad reactions to 5-HTP, tryptophan, SAM-e, etc. The body doesn't know what to do with all that extra serotonergic stimulation.

 

Chronic downregulation is not a benign condition.

 

Thanks for starting this great topic, peggy.

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Nikki

We do know that withdrawal syndrome is caused mostly by downregulation of neuroreceptors. The body's serotonin production may be absolutely normal, but the receptors can't feel it and they're not doing their jobs passing information along to the rest of they system. Alto

 

 

Barb in this topic I saw that you finished Pristiq a year and a half ago. So many people have the protracted wd from hell from this drug, effexor, effexor time release.

 

Is it possible that you have experiencing severe protracted WD which is irritating or behind you current situation? None of us have ever really gone for the tests you have been thru. Is it possible that you may have uncovered the damage and that you are stil in a state of WD which is exacerbating your symptoms???

 

I don't know, I was just wondering this as an after thought. A year and a half out is not that long for protracted wd.

 

Just want to find an answer for you :(

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areyouthere

thank you so much Alto - that was a great explanation

 

Yes it is !!! So Peggy, just curious ( I looked at your history of trying to get off Efexor) , using Alto's explanation what do you think was happening to you that you went back on and off? And also, were there specific

" occurances " that happened in your life at the times that you reinstated? And if so, if they hadn't occurred,

 

do you think that you would have been able to continue tapering? And finally,looking back , do you think that doing what some call "micro tapering" or tapering at an extremely slow rate would have resulted in a complete taper the first time?

 

And Alto... judging from your own experience and by working with others do you think that there are there any "constants" that seem to remain true no matter what the drug or taper ?

 

Thanks. I'm still trying to figure out to do. On 20 mg. lex, 300 mg Wellbutrin XL 4 mg Xanax ( YIKES!) Been on xanax since 1995 and anti depressants as well. Yuh. You could call me a late bloomer.... or just call me sllllllllooooooowww.

 

It's also possible they did not taper as slowly as they thought, to find lag time caught up when they dropped off. There has to be someone this has happened to, but in 20 mos experience on forums, it's way out of the norm.

 

Perhaps it's my imagination and I've just been surfing around for a short amount of time but it feels like it's happened much more frequently than that especially with the benzo?

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Altostrata

I wish there were constants! In general

 

- Slower tapering is better than faster.

 

- People are taking drugs they don't need at excessive dosages in ridiculous combinations that aren't doing them any good.

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Barbarannamated

Nikki,

 

Thanks for your post. Im certain that protracted withdrawal is very much an issue complicating my underlying and genetic endocrine/autoimmune condition that was most likely present before I ever started Zoloft in 1993.

 

Also, I did not taper carefully or slowly enough.

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peggy

 

thank you so much Alto - that was a great explanation

 

Yes it is !!! So Peggy, just curious ( I looked at your history of trying to get off Efexor) , using Alto's explanation what do you think was happening to you that you went back on and off? And also, were there specific

" occurances " that happened in your life at the times that you reinstated? And if so, if they hadn't occurred,

do you think that you would have been able to continue tapering? And finally,looking back , do you think that doing what some call "micro tapering" or tapering at an extremely slow rate would have resulted in a complete taper the first time?

 

it's very hard to go back and say what might have happened... i thought at the time i was having a relapse of depression - and perhaps i was, but i now think that what happened was that being on the antidepressant - and coming off reasonably quickly (over 6 weeks or so) left my nervous system a bit more sensitive... whilst i did have stuff happening at the time it was never enough to warrant a depressive episode IMO - which only led me to feel much more vulnerable.

 

Alto, does this sound reasonable? that this could occur 4-6 months after being off? These episodes started much more quickly - previously, my depression would start and then slowly increase in intensity and then taper off (over about 6-8 months) but since being on antidepressants - the times i was told i was relapsing i was back to full blown depression/anxiety overnight.

 

Also, what do you think might be the neurohormone explanation for this: when i have been off for about a week after these fairly quick tapers i usually have a period of feeling very well - i can describe it as the feeling of being infused with sunshine -like all is good with the world ( i have experienced this prior to all this so i don't think it is hypomania). What could be happening with the receptors and neurohormones?

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Altostrata

Makes sense to me, peggy. Coming off too fast leaves our nervous systems more vulnerable to stress, even without overt withdrawal symptoms, and it can take them a long time to recover.

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Rhiannon

The neurohormone receptors are like tiny valves. They're set to automatically regulate the level of neurohormone in the system. This is called homeostasis.

 

When the amount of a neurohormone, such as serotonin, jumps, some of the receptors close. This is downregulation (or desensitization). Fewer receptors remain active to allow serotonin in, in an attempt to keep system serotonin levels normal.

 

If the amount of a neurohormone sinks, more receptors will open up to make the correction. This is upregulation.

 

Normally, the fluctuations of neurohormones are small and the receptors upregulate and downregulate a little all the time (an aspect of neuroplasticity).

 

It is unknown what happens when a neurohormone is flooded chronically, as happens with psychiatric drugs. The receptors downregulate to an extreme. This is a highly abnormal state to which the human nervous system was never exposed throughout its evolution.

 

(Drug-induced emotional anesthesia or, in its more persistent version, "treatment-resistant depression," may be an iatrogenic state of maximal receptor downregulation.)

 

There are theories that the self-regulatory ability remains intact. Others believe the self-regulatory ability breaks; still others think this might happen but the nervous system corrects itself through other receptors (redundancy of systems).

 

It may be there is genetically determined variation regarding the stubborness of receptors across individuals; in some people, the self-regulatory ability is overcome and in others, not.

 

People who can quit cold-turkey with no symptoms may be people whose receptors never did much downregulation. People who have trouble with small decreases in dosage may be people whose nervous systems are highly adaptable and downregulated a lot (neuroplasticity again).

 

We just don't know.

 

We do know that withdrawal syndrome is caused mostly by downregulation of neuroreceptors. The body's serotonin production may be absolutely normal, but the receptors can't feel it and they're not doing their jobs passing information along to the rest of the system.

 

As with any injury to the body, it needs to repair itself cell by cell.

 

We also know that people do recover from taking vast amounts of psychiatric drugs and having terrible withdrawal problems. After gradual tapering, many people do well with few post-acute withdrawal problems. Upregulation, or whatever other adaptation the nervous system makes to re-establish a healthy state, does occur.

 

We can also trust the nervous system to want to be healthy and normal. It's always trying to do this, that's its job.

 

Slow tapering enables 1) whatever upregulation can occur to do so 2) the rest of the nervous system to adapt to existing downregulation and 3) gradual re-establishment of the normal system of checks and balances in the nervous system.

 

ahhh...so nicely said...Sometimes reading your stuff is like a nice cool drink of water on a hot day, Alto. Very satisfying.

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Rhiannon

Oh, I wanted to add: I think something different does happen at extremely small doses of these meds. It's just so common for people to need to really slow down at the end of their tapers. It seems really common for things to change at those really low doses.

 

And when I went through it with Neurontin, in spite of tapering very slowly to a very small dose, there was a distinct difference when I quit taking it altogether. Way more than I expected and more than I would have experienced with that same amount of reduction while still tapering.

 

I think most people expect getting off to be linear, to be like a continuous straight line, when actually something different happens at the end, at the smallest doses. So you can't just taper right off and step right off. You still need to be very attuned and aware and take it slow at the end.

 

Which is really hard to do and also part of the problem: when you're so close to the end, just a hair's breadth away or so it feels, it's very difficult to discipline yourself to keep taking it really slowly. So I think people often come off that last bit faster than they really realize. I know I did with the Neurontin, and I've seen it often on the benzo boards too.

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Barbarannamated

Any thoughts as to why some drugs (opiates, stimulants in my case) respond the same way after being off for awhile? Ive had occasions to take hydrocodone after being off for a few years and my response was predictable. The same for stimulant. I did not seem to be sensitized or tolerant (desensitized?).

 

When I took a fraction of a dose of Pristiq after a year off, it hit me extremely hard - like speed. Anxiety, racing heart, etc. I assume that's the noradrenergic system..? It's just so baffling why the drugs with the reputation of being addictive and dangerous dont create the bizarre sensitivities. Where do benzos fall on this spectrum?

 

Thanks.

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peggy

Oh, I wanted to add: I think something different does happen at extremely small doses of these meds. It's just so common for people to need to really slow down at the end of their tapers. It seems really common for things to change at those really low doses.

 

And when I went through it with Neurontin, in spite of tapering very slowly to a very small dose, there was a distinct difference when I quit taking it altogether. Way more than I expected and more than I would have experienced with that same amount of reduction while still tapering.

 

I think most people expect getting off to be linear, to be like a continuous straight line, when actually something different happens at the end, at the smallest doses. So you can't just taper right off and step right off. You still need to be very attuned and aware and take it slow at the end.

 

Which is really hard to do and also part of the problem: when you're so close to the end, just a hair's breadth away or so it feels, it's very difficult to discipline yourself to keep taking it really slowly. So I think people often come off that last bit faster than they really realize. I know I did with the Neurontin, and I've seen it often on the benzo boards too.

 

i wonder what that something is Rhi? this is what i have been pondering...

 

i also gained momentum with my effexor reduction and had to updose - twice! i am a very slow learner LOL

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peggy

Any thoughts as to why some drugs (opiates, stimulants in my case) respond the same way after being off for awhile? Ive had occasions to take hydrocodone after being off for a few years and my response was predictable. The same for stimulant. I did not seem to be sensitized or tolerant (desensitized?).

 

When I took a fraction of a dose of Pristiq after a year off, it hit me extremely hard - like speed. Anxiety, racing heart, etc. I assume that's the noradrenergic system..? It's just so baffling why the drugs with the reputation of being addictive and dangerous dont create the bizarre sensitivities. Where do benzos fall on this spectrum?

 

Thanks.

 

my thinking on that is that opioids have a different mode of action - they are not blocking reuptake - their action is to bind with the receptor - when you habituate to opioids (and benzos i think) you are increasing the number of receptors - which is probably why they are addictive - if you don't keep taking them the receptors are unhappy. So a gradual withdrawal from opioids gradually depopulates the receptors back to their normal state. So when you take them again they work just the same.

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Barbarannamated

Thank you, Peggy.

 

I used to be able to visualize this much more easily. :rolleyes:

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Rhiannon

 

Oh, I wanted to add: I think something different does happen at extremely small doses of these meds. It's just so common for people to need to really slow down at the end of their tapers. It seems really common for things to change at those really low doses.

 

And when I went through it with Neurontin, in spite of tapering very slowly to a very small dose, there was a distinct difference when I quit taking it altogether. Way more than I expected and more than I would have experienced with that same amount of reduction while still tapering.

 

I think most people expect getting off to be linear, to be like a continuous straight line, when actually something different happens at the end, at the smallest doses. So you can't just taper right off and step right off. You still need to be very attuned and aware and take it slow at the end.

 

Which is really hard to do and also part of the problem: when you're so close to the end, just a hair's breadth away or so it feels, it's very difficult to discipline yourself to keep taking it really slowly. So I think people often come off that last bit faster than they really realize. I know I did with the Neurontin, and I've seen it often on the benzo boards too.

 

i wonder what that something is Rhi? this is what i have been pondering...

 

i also gained momentum with my effexor reduction and had to updose - twice! i am a very slow learner LOL

 

I don't know, Peggy, I've been pondering that myself.

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Skyler

 

Which is really hard to do and also part of the problem: when you're so close to the end, just a hair's breadth away or so it feels, it's very difficult to discipline yourself to keep taking it really slowly. So I think people often come off that last bit faster than they really realize. I know I did with the Neurontin, and I've seen it often on the benzo boards too.

That's what I think most of it is peggy... though from reading here and on the benzo forum .. I would say ADs are trickier than benzos at the tail end.

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jr1985

Maybe this is why people have such a hard time at low doses.

 

http://thelastpsychiatrist.com/2007/07/no_not_effexor_too_the_most_im.html

 

Look at the graph for celexa. Notice how steep the curve is from 10-0mg vs 20-10mg. There's a sharp drop in the amount of transporters occupied by the drug, which I eleven is what causes problems at lower doses.

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Altostrata

Interesting theory, jr. Could very well be at low doses there's not enough drug to go around.

 

The article is full of jokes only The Last Psychiatrist understands.

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peggy

that was an interesting read, thanks jr.

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jr1985

Interesting theory, jr. Could very well be at low doses there's not enough drug to go around.

 

The article is full of jokes only The Last Psychiatrist understands.

 

LOL, indeed. ;)

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peggy

i went back and had another closer look at the graph for effexor - it looks like at about 35mg still about 60% of the transporters are occupied.. all the more reason to go a lot slower from here on.

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starlitegirlx

 

 

And, finally....if someone has done a really, really slow withdrawal and had little to no symptoms on the way down, do they get symptoms when they finally stop (assuming that they go as low as they can continue to physically reduce). I have read where people have said they did slow reductions and still got slammed when they came off and that doesn't really seem like it should happen - are they exaggerating their 'slamming' or their slow reduction, or are we really all doomed....

 

This is a really, really good question and I'm super glad that its come up.

 

I too have read the posts where people have done a slow taper, held until stable etc. and continued at 10% drop or even less , like, 5% and at the end when it seems that last taper is the hardest even LESS and be "fine" thinking the worst was over, they were home free only to, as Peggy said, start to experience serious symptoms , sometimes described as "being slammed", up to 8 months after a completed taper. Who wants to go through that?!

 

It can be confusing because there is debate as to whether this phenomenon of the return of symptoms is delayed WD or the return of the "condition" ie. the depression or anxiety , that precipitated the being put on the meds in the first place.

 

I am very interested in the answer to this question. hanks, Peggy.

 

I did the 10% decrease every two weeks as recommended at a multitude of sites online. The book I had classified my drug differently as it's not a true ssri but it does have an ssri component (imipramine or tofranil depending on if your want the generic name or the other name). In his book, he said three weeks if no problems and 50 mg cuts. I tried 50mg which would have been one pill for me. I took 100mg and within 10 days my nervous system was headed for hell. So then I did the 5mg every two weeks, sometimes less depending on how I felt. 12 days or 10 days. I went through the withdrawal cycle for that decrease then would be fine. I'd wait some days at zero issues and no need to take more than a mg of klonopin for the morning tremors - so I was cautious as I could be with the info I had coupled with my experience. When the percentages got higher because the minimum dosage for imipramine is a 10mg pill and it's a stupid triangle of all things, I was cutting higher than 10% because I was forced to do that. Those months were very rough. I had some insane symptoms. Full body pain. Electrical currents surging through my body. I'd be crying for hours just wanting to die. And those are just two common symptoms I had. There were others. Some emotions. Suicidial ideation with plans. I'm past that now. But here's the nitty gritty...

 

Once I went off the drug, no matter how slow you have gone (and I do still recommend going slow) it's a 100% cut. Even if your body is only getting 3mg of the drug which mine was going to zero mg is a 100% cut. And that's when all hell broke loose. Now I'm doing better than I was nearly 3 months later, but I don't know what the long term is. Most concerning is the dizziness and inability to walk or even talk with people for long. I haven't been out of the house at all this summer except a quick tour of the small store down the corner and it taxes the hell out of me and I just get back in bed and do nothing for the rest of the day. The dizziness gets worse as the day progresses as does the blurry vision. But it has improved since its onset. I cling to that as my one piece of evidence that my body is adapting and healing whatever the heck damage was done to it. I might have to pay for this for the rest of my life, for being a good patient who wanted to function at her best with bipolar illness and always took her meds. I never did drugs or drank like lots of kids. I have tried to get off ssdi and 'be normal' with two college degrees. Never worked. I'm 44 and live in the house I grew up in with my senior citizen mother who has to watch this hell unfold and wants me to see a neurologist despite my certainty that it will be a waste of time and money because it won't show. If it did show, we'd have the proof we need to stop all this drugging nonsense and shut down the psych pharm industry. But she lives in fear I'll kill myself at some point and doesn't know how given everything I've been through for two decades I'm not done it already. But I digress.

 

Fact is, no matter how you taper, going from whatever dose to zero dose in a 100% cut and the body is no longer getting the drug. Changes are high that there will be fallout. How bad or how long that fallout lasts is dependent on so many things it's really hard to say. But given that the body is truly prone to healing itself, as I've witness in 3 months with symptoms being less or less painful and debilitating along with me taking a quarter of the klonopin I was on the really horrific days - I know that my body is healing as best as it can. Maybe the damage is still there from the drugs but then maybe my body is finding a workaround to keep me functioning and return me to the best health it can given what has been done to my body by these drugs.

 

I don't mean to scare anyone, but preparation for the likelihood of a slam once you are 100% off the drug and a slam that may last several months to maybe even years though it may diminish over time so it's not so much of a slam as it is a push or shove or eventually a poke - that's something I was NOT prepared for and it was beyond devastating. So going in knowing that going off completely might be the hardest part of the whole thing and maybe even last the longest is something I think is wise to do. It's far better than a blindside which, for me, in my fragile and utterly worn out at that point experience was like being hit by a mack truck and surviving only to realize that survival was the worse of two evils.

 

But to keep this more optimistic, while I'm not on a pure ssri, my drug has an ssri component and I took for 16 years so I do fall into the ssri camp no matter what my 'unable to see the light' doctor says or things or is capable of comprehending. And I am improving. Far slower than I wish. But I am also scared about where the improvement stops. Will I return to normal walking? Will the dizziness go away? Will I be able to return to the lame normal of my life before I went off the meds which was pretty much not really living but getting through the days in a slow march toward death given that living on SSDI at 44 doesn't really afford me the options to do the things I'd like to do like travel or have a relationship or whatever. But I am getting better from when I first started withdrawal at completely off the meds. I just wonder how long it will take to get back to fully healthy minus whatever depression comes up. To me, that's cake now. And I wonder if I will ever get normal or healthy enough to not feel debilitated on some level. To counter this I take a very buddhist approach and say 'it is as it is' and accept the bad days and that I may not get to where I want to be an that this maybe be where my life is at now. yet, sometimes in doing that we stop focusing on all the suffering, we accept it and then it has far less power over us. We live in the moment rather than the unknown, and we find ways to make the best of those moments even if the best is tolerance or acceptance of pain of that moment.

 

Just my thoughts. Sorry for it being so long. I just had a lot to say and get out of my system.

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Altostrata

starlightgirl, you started having bad withdrawal symptoms at 25mg. That was a sign you should have slowed down then. It wasn't the drop from 3mg to zero that did you in, it was tapering too fast altogether.

 

To minimize the impact on your nervous system, the absolute size of the decrease in milligrams must get smaller as you go down in dose. The proportion, 10%, stays the same. (If you get withdrawal symptoms at a 10% decrease, make a smaller decrease -- 7% or 5% or even less if you need to.)

 

A 10% reduction should be calculated on the LAST dosage, not the original dosage: For example, if you are taking 25mg,

 

- The 1st decrement is 2.5mg, leaving a dose of 22.5mg

- The 2nd decrement is 2.25mg, leaving a dose of 20.5mg

- The 3rd decrement is 2.05mg, leaving a dose of 18.45mg

- The 4rd decrement is 1.85mg, leaving a dose of 16.6mg

and so forth.

 

We suggest making these decreases every MONTH, to see how your nervous system handles them. After a couple of months, if no problems, you might try decreases every 3 weeks for a couple of times. Then, if no problems, every 2 weeks. Your nervous system will tell you how fast you can go.

 

Your calculator will get a workout doing this.

 

(Alternately, if you don't want to do the calculations, you can try a micro-taper of very, very small decrements more frequently, such as .01mg per day. See http://survivingantidepressants.org/index.php?/topic/2878-micro-taper-instead-of-10-or-5-decreases/

 

It's true 3mg to zero is a 100% drop. With liquid, it's possible to decrease by .01mg if you have to. You don't have to take the leap to zero.

 

What's confusing is that what is a tiny, tiny decrease, like 3mg, to one person has a big, big effect on someone else. Some people can tolerate larger cuts than others. You have to go by what your body is telling you and slow down if it sends up red flags.

 

Just about everyone on this site is here because they trustingly followed instructions from their doctors or some other authority and developed withdrawal symptoms anyway. It's not because tapering is impossible, it's because they tapered too fast.

 

Believe me, you can taper off successfully. There are people on this site doing it.

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starlitegirlx

starlightgirl, you started having bad withdrawal symptoms at 25mg. That was a sign you should have slowed down then. It wasn't the drop from 3mg to zero that did you in, it was tapering too fast altogether.

 

To minimize the impact on your nervous system, the absolute size of the decrease in milligrams must get smaller as you go down in dose. The proportion, 10%, stays the same. (If you get withdrawal symptoms at a 10% decrease, make a smaller decrease -- 7% or 5% or even less if you need to.)

 

A 10% reduction should be calculated on the LAST dosage, not the original dosage: For example, if you are taking 25mg,

 

- The 1st decrement is 2.5mg, leaving a dose of 22.5mg

- The 2nd decrement is 2.25mg, leaving a dose of 20.5mg

- The 3rd decrement is 2.05mg, leaving a dose of 18.45mg

- The 4rd decrement is 1.85mg, leaving a dose of 16.6mg

and so forth.

 

We suggest making these decreases every MONTH, to see how your nervous system handles them. After a couple of months, if no problems, you might try decreases every 3 weeks for a couple of times. Then, if no problems, every 2 weeks. Your nervous system will tell you how fast you can go.

 

Your calculator will get a workout doing this.

 

(Alternately, if you don't want to do the calculations, you can try a micro-taper of very, very small decrements more frequently, such as .01mg per day. See http://survivingantidepressants.org/index.php?/topic/2878-micro-taper-instead-of-10-or-5-decreases/

 

It's true 3mg to zero is a 100% drop. With liquid, it's possible to decrease by .01mg if you have to. You don't have to take the leap to zero.

 

What's confusing is that what is a tiny, tiny decrease, like 3mg, to one person has a big, big effect on someone else. Some people can tolerate larger cuts than others. You have to go by what your body is telling you and slow down if it sends up red flags.

 

Just about everyone on this site is here because they trustingly followed instructions from their doctors or some other authority and developed withdrawal symptoms anyway. It's not because tapering is impossible, it's because they tapered too fast.

 

Believe me, you can taper off successfully. There are people on this site doing it.

 

My thinking is fuzzy at times, part of the withdrawal. It's a little clearer now so let me clarify what I wrote and also neglect to write during fuzzy brain time.

 

I had trouble at 25mg which I took as a sign. It had been a 25mg to 20mg cut though I call it 25mg. So I changed it to a 3mg cut from there and then had no true issues until my 13 to 10 mg cut. So 10 was the real number though at 13 I did notice some signs that 10 might be a challenging cut. I just remembered that 25mg was where I noticed the issue. Until then, I really had zero issues with 5mg decrease every 2 weeks. When I changed my cuts from 5mg to 3mg (hard to measure for sure on a 10mg triangle pill... who makes pills in triangles? Kind of insane to me but what do I know?)

 

My cuts, once I realized the 5mg cut at 25mg was too much were to switch to 3mg cuts and they went pretty much like you outlined:

 

25mg to 23mg or so given who can tell how many mg a triangle is when you cut it twice.

23mg to 20mg

20mg to 18 mg or so

18 mg to 15mg

15mg to 13 mg

13 to 10

10 to 8

8 to 5

5 to 3

3 to off

 

Some withdrawal symptoms came out at 13 but they weren't bad, just more notable than having tremors as really the only symptoms until then as far as I can remember - it's a bit of a blur now with brain fuzziness and whatnot. At 10mg it was a few really bad days with more klonopin increases then settling down again, but just a short round of maybe 3 or 4 bad days that passed and returned to no issues. 8 mg was actually not bad because it was a smaller percentage cut than going from 13 to 10. 5mg was when the true hell began. So I'm prepared to go back up to 5mg if necessary and hover there for a while (months to even a year or a bit more). Then I can do baby steps after I read your documentation. I just have to do it when brain can handle it better.

 

So really it was 10 mg that I noticed true withdrawal but 5mg that I should have taken more time with it, but I was so close to that light at the end of the tunnel that I neglected to see that it was an oncoming train. That one is on me for lack of patience.

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Altostrata

Don't blame yourself, how were you to know?

 

People often find the lower they get in dosage, the more difficult it gets, and they have to slow down.

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primrose

 

I still can't get over how ridiculous it is that people have to spend years trying to get off these drugs, yet I was able to quit Ritalin (a "dangerous potentially addictive drug!") cold turkey with hardly any ill effects.

 

Stimulants are a lot easier to get off, taper wise at any rate. Same for opioids. My doc was just telling me about how dreadful it is for people who are on opioids when they lose their health insurance, but was clueless about the fact for AD/benzos/anticonvulsants take much longer to taper. This when he has supported 2 years of my slow tapering a benzo, and now Lyrica. I could only shake my head. It took me several months to taper an opioid, years for the benzo.

 

I've been clean off amphetamines for over 3.5yrs but in my experience, amphetamines were very diffucult to come off.

I tried and failed and when there was no supply I couldnnn't stnad it.

The only reason I am off is not because I brought myself off, circumstances brought me off and I had no choice. Benzo withdrawal was the circumstance that meant I could not take speed even if it was offered.

I still have diffuculties adjusting to life off speed 3.5 years later, difficulties with motivation and enthusiasm. These difficulties were there before I tried speed and it's these that make it hard for me without.

 

As fot stimulant type antidepressants, or activating ones, I don't know how hard it is to come off after long term use. I took prozac years ago a couple of times for a few months, and had no problenms coming off it, but others may.

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Skyler

I still have diffuculties adjusting to life off speed 3.5 years later, difficulties with motivation and enthusiasm. These difficulties were there before I tried speed and it's these that make it hard for me without.

 

Hi Primrose..

 

I was referring to stimulants that are less powerful than amphetamines, such as ritalin.. and those may be easier to get off of, or not. I think you may be talking about something other than withdrawal, the difficulty of adjusting to alife without stimulants because there was a theraputic benefit? From what I've read, stimulants lose their ability to give the effects you had over time. It sounds like this did not happen with you. I'd be interested to know more about your experience if you would like to share it with us as you seem to have benefited from taking them. Did you have long lasting withdrawal issues as well?

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Barbarannamated

 

I still have diffuculties adjusting to life off speed 3.5 years later, difficulties with motivation and enthusiasm. These difficulties were there before I tried speed and it's these that make it hard for me without.

 

I was referring to stimulants that are less powerful than amphetamines, such as ritalin.. and those may be easier to get off of, or not. I think you may be talking about something other than withdrawal, the difficulty of adjusting to alife without stimulants because there was a theraputic benefit? From what I've read, stimulants lose their ability to give the effects you had over time. It sounds like this did not happen with you. I'd be interested to know more about your experience if you would like to share it with us as you seem to have benefited from taking them. Did you have long lasting withdrawal issues as well?

 

The term "stimulant" continues to confuse me. :o.

 

Before I misstate something, I will research.

 

On a slight tangent, I believe it would be better if pharmacology refered to drugs base on their (theoretical) mode of action rather than intended effect.

 

EX: benzodiazepine rather than "anxiolytic" or "antidepressant"

SSRI, TCA, MAOI, SNRI, NDRI rather than "antidepressant"

Dopamine blocker/inhibitor rather than "antipsychotic"

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primrose

 

I still have diffuculties adjusting to life off speed 3.5 years later, difficulties with motivation and enthusiasm. These difficulties were there before I tried speed and it's these that make it hard for me without.

 

Hi Primrose..

 

I was referring to stimulants that are less powerful than amphetamines, such as ritalin.. and those may be easier to get off of, or not. I think you may be talking about something other than withdrawal, the difficulty of adjusting to alife without stimulants because there was a theraputic benefit? From what I've read, stimulants lose their ability to give the effects you had over time. It sounds like this did not happen with you. I'd be interested to know more about your experience if you would like to share it with us as you seem to have benefited from taking them. Did you have long lasting withdrawal issues as well?

 

Hi Schuyler

 

Due to years of emotional abuse I never had any zest for life.

I was not living, just existing and I had no confidence

I had poor concentration and felt vulnerable when around angry people.

Ultimately speed was fake confidence, zest for life, enthusiasm and focus though, but to me, fake was better than none.

I just found the concept of having no speed unthinkable. Once I had got a taste of the fake confience etc I was unwilling to go back to my old tired walking corpse self.

All 'good' things must come to an end though, and once I started tapering benzos speed was definitely out of the window.

I cannot imagine taking it again because it also made my ankles and feet swell so much that walking was painful.

So, i had to say goodbye to always having something interesting to do, and hello to depression, anxiety, de-motivation and a whole other nightmare benzo withdrawal symptoms.

I have been speed free ever since.

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