Jump to content
Rhiannon

The slowness of slow tapers

Recommended Posts

elgee

Hi Star,

 

I stepped off valium 22 months ago. It wasn't an easy taper but for the most part it was manageable. I decided last March that it was time to begin tapering gabapentin. I hit the wall after daily microtapering for about 2 weeks. This method worked well while tapering valium but not so great with gabapentin. This drug is monster for me compared to valium. It took me 4 months to stabilize and when I made another tiny cut I hit the wall again. When I look at just how long it's going to take me to get off of 1500 mgs I'm overwhelmed. But I'm also determined to get off no matter how long it takes me. 

 

One thing I'm starting to realize is how sensitive I've become to glutumate rich foods. When I look back at the times I've been hit the hardest while trying to stabilize on gabapentin, it's usually been when I've had some kind of glutumate in my diet. I hope that by monitoring the glutumate it might help make things a little easier for me. 

 

Anyway Star I know how daunting this whole process can be.

 

Elgee

Share this post


Link to post
Share on other sites
Meimeiquest

Hi Lexi,

 

I'm so sorry I haven't written sooner...I can only remember what is right in front of me. Anyway, I think I figured out from "alternative" sources that my AD was interacting with my benzo, so stopping the AD made the benzo metabolize faster. So it was like a dosage cut, even though the dose was the same. I have maybe 80% recovered from that now. So I did a quick goggle on your drugs...even a mainstream source said both those ADs have moderate potential to interact with your benzo. So you probably had a really significant drop in your benzo level once the ADs got out of your system. Just something to think about. Still wishing and praying good things for you!

Share this post


Link to post
Share on other sites
Jemima

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

 

I tend to agree with Ladybug that you're still suffering antidepressant withdrawal symptoms from tapering off Lexapro and Sertaline so fast especially given that you're only ten months or less out from your last doses of those two drugs.  I went off Lexapro alone on December 14, 2011 after a fast taper and am still not entirely well.  At ten months off, I still had *lots* of physical and emotional symptoms.

 

I understand wanting to be off the benzo as soon as possible, but trying to taper Ativan right now will likely just add to the misery.

Share this post


Link to post
Share on other sites
Rhiannon

...And they talk about toxicity, but I don't fully understand what toxicity is regarding this drug.

 

Having these side effects and being on this high dose, I'm guessing I have toxicity but I don't know that means for me in terms of health, recovery or anything really. So that is scary as well. And I'm sad that so many people can taper faster than me. I feel like I will be dealing with this ONE drug for ages - nearing a decade at the rate I'm going. And with all these other things, it's just scary.

 

Then I think how I've already been on it 17 years now and I wonder what another decade is? It's a lot but at some point, I wonder if it even matters. I have to go at the pace I'm going at. Cut more and I feel it with WD that amps up. So there's not a lot I can do about it but hearing about toxicity and not fully understanding it or how dangerous it is to be on them a long time but not fully understand why or if I am already past that point or if it doesn't matter at all in the end as long as you are tapering safely .... well it's all very overwhelming and I've tried to get some clarification but really haven't been able to. And I don't have anyone to turn to for answers - people who understand any of this stuff. So I'm very alone and have just enough info to be scared rather than informed and aware.  So that's really what this is all about.

 

Thanks for taking the time to reply.

 

 

Hi starlite--

 

I can't say I'm an expert on toxicity, and I'm pretty sure NO drugs are as good for our bodies as the absence of drugs would be, but I have to say it's been my impression that as far as collateral damage (liver toxicity mainly) Klonopin is not as bad as some of the other psych drugs. Your pharmacist could probably tell you a lot more about it than I can. I would not necessarily trust what you read on an Internet forum on the subject--I find that people are unclear on concepts and terminology a lot of the time.

 

At any rate, like you say, it's sort of a moot point, since trying to quit faster makes you intolerably ill.  (This may improve with time if you stay on a very slow and asymptomatic taper for a while--your body may still be recovering from the AD withdrawal, which can take a couple of years, plus the point made about going off the ADs increasing your metabolism of the K, which you're also probably still recovering from).

 

Also, keep in mind that health anxieties are very common in withdrawal, especially benzo withdrawal for some reason. Not everyone gets them but I've seen people get really stuck. 

 

Hang in there. You're reducing the drug, so whatever else is going on, you're doing what it takes to make things better, and that's really all you can do.

 

I'm glad to hear there's a "safe" area on BB now. I had to quit that forum because it had become the Wild Wild West. 

Share this post


Link to post
Share on other sites
Nikki

Lexy when the first websites began to sprout up (paxilfree - paxilprogress - there was another one and then Seroxatmad) they came into being because of paxil AND effexor.  Having been on most of these sites what I did notice was that members tapering these specific meds could not usually drop a dose monthly, even if it was 1/4 mg.

 

 I recall members having to wait a much longer time in between drops in dose.  It seemed to be the only way they could handle it.  They are very powerful drugs those two :angry:

 

Maybe you could wait 6-8 weeks and see if that helps or longer if necessary.  This is what I have seen over the years.

It won't hurt and you may get some relief from the anxiety.

 

A friend of mine in the UK who I chat with daily has been off Paxil (seroxat) for three years.  She did the tiniest of cuts, waited a long time in between drops in dose and used Rescue Remedy for the anxiety.  She had luck with B Vitamins for her anxiety.  Not every one can tolerate the B's.

 

I was just looking over another thread about supplements for anxiety.  Some of which helped me.  I can't remember which post it was...I will try and find it for you....

 

Hugs

Share this post


Link to post
Share on other sites
starlitegirlx

 

Most of the time the problem is that people go too fast and get ahead of their body's ability to heal and adapt, and then they don't hold long enough when they do hold.

 

The only way you can find out if cutting now will make you feel better is to try a small cut.

 

I also recommend the daily journal of doses and symptoms, ranking the symptoms on a scale of 1 to 5. Our minds play tricks on us in withdrawal, so keeping a daily journal is the best way to see the pattern of our symptoms and how they relate to our taper.

 

I'm tapering very slowly but in accordance with what my body can handle meaning my aim is for minimal WD as I go. Doing this I am able to go to the gym and lift weights as well as walk. I'm cooking again on par with what I was doing before the tapering hell happened. Sleep is good. Life is basically quite similar to how it was before I tapered with some side effects added in and morning cortisol rushes that are par for the course. I'll be tapering for YEARS. Truly. I have done a mock up in and excel spread sheet of my taper rate and it has me stopping at around 2019 or 2020 depending on how low I got with the klonopin beast and if I can continue to go at the rate I've been doing these last few months.

 

Fact is, Rhi is right as always on all counts in her post. Best we can do is listen to our body and let it be the gauge of how fast we taper. If we go too fast, we end up in a miserable state. I've seen this far too many times. Over at BB what I see is terrifying at times. The rate people taper at, following ashton's guideline, which while it's a groundbreaking achievement it still fails to recognize the individuality of people's recovery rates. Go too fast and you end up in pure hell. I've see that and it's scary ugly. This is the same for all these drugs. In the end, the goal should be to live life as close to normally as possible during the taper and then when you stop taking it not go into a horrible acute WD state that lasts long which means for some, they might have to taper to very low numbers. Again, it's individual to the person. But we have to listen to our bodies. When we don't, all hell breaks loose.

 

Right now I see a lot of people at the very end of their taper over at BB or they have recently stopped. While I am glad for them, my own taper of years still stretches out before me. But then I realize that if I go too fast and don't listen to my body not only will I be sick as death during the taper but when I am off I will be in hell because my body never had the time to adjust and heal. It's the nature of the beast. You can't cheat it by going fast. The body still has to heal and adjust. There's no trick around it. So if those years of tapering are spent going at a safe pace that allows my body to heal and me to have some degree of a life, then it's more than worth it. Better than ending up in some sort of protracted hell for years on end. Or at least that's my .02 cents on the matter based on what I've experienced so far.

Share this post


Link to post
Share on other sites
Rhiannon

You can't cheat it by going fast. The body still has to heal and adjust. There's no trick around it. So if those years of tapering are spent going at a safe pace that allows my body to heal and me to have some degree of a life, then it's more than worth it. Better than ending up in some sort of protracted hell for years on end. Or at least that's my .02 cents on the matter based on what I've experienced so far.

 

 

That's been what I've seen. There's no trick that seems to work for going fast. I've never seen anyone do well with pushing past withdrawal symptoms and continuing to go fast. It's frustrating, because we don't like slow. 

 

Fortunately not everyone has to go as slow as I do, though. I just think you have to let your own body be the expert.

Share this post


Link to post
Share on other sites
areyouthere

just calculated that after year of withdrawing, it will take me at least 2 more years (if lucky). that depresses me. and all the time I'm also suffering from side effects and withdrawal :S

It took over a year & 1/2 of tapering and a 4 month hold after that for me to realize that I was actually  starting to feel better. That has been a real boost & will give me courage & hope to continue. 

 

I hope that this will happen for you.

 

RU

Share this post


Link to post
Share on other sites
Rhiannon

Update: We now have the charts in this paper which demonstrate clearly why we have to go slower at lower doses. And if anyone says "oh that's such a small dose it's not doing anything" you can show them this--the small doses are doing far more than the large ones do!

http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

 

I'm still crawling along with the extremely slow taper. You can see my current doses in my sig line. I've reached the point that the med effects are mostly not bothering me much (except maybe the Valium, which I think is still affecting me cognitively more than I'd like). I still find that holds are at least as important a part of the picture as the cuts. Maybe more. Slows me down even more, the longer holds, but I still get to feeling so much better after holding for a while that I know it's good for me to do it.

 

And overall feeling SO much better now that I'm on these low doses. Turtle turtle turtle is working for me still. I hope other people can bring themselves to do it and it works for them too.

Share this post


Link to post
Share on other sites
Rhiannon

I know. Everyone outside of here, when I tell them how slow I'm tapering, looks at me like I told them I'm slowly turning into a unicorn or something. Fortunately I haven't run into too much outright scorn, but it's clear people (especially but not exclusively medical people) think I'm nuts, or imagining things, or making things up, or a wuss. 

 

And I know I'm actually one of the lucky ones. Most people with my kind of med history just continue on down the path I was on--onto Social Security disability and ongoing dysfunction and misery. Or worse. Even though it's going to take me many years, and I may never be all the way off everything forever, I've escaped a much worse fate.

 

I'm already down to low enough doses to have myself and my life back and be able to work and function, maybe not at my original potential, but at a very livable level. There is no way I would have gotten here without the very slow taper. I've also seen no reason (so far) to believe I can't keep going as long as I keep it this slow and keep taking the breaks/holds. It's still working for me, although the increments are getting pretty doggone tiny now.

 

Grrrrrrr PHARMA. Those guys have some serious karma coming to them.

Share this post


Link to post
Share on other sites
mammaP

My doctor told me that I experienced withdrawal symptoms because I was going too slow!

And a friend I met in the hospital many years ago,( and who is still polydrugged ) told me that

it was impossible to have a return of depression on such a low dose as 5 beads. I explained

it was withdrawal and not return of depression. The response was a sarcastic little laugh and 

that it must be psychological because these 'new' AD's are not addictive.  

 

I just hope she never has to find out from experience that it really is withdrawal and not 

psychological at all, I wouldn't wish it on anyone!

Share this post


Link to post
Share on other sites
Rhiannon

A couple of new (for me) ideas in the slow taper:

 

As y'all know, I am a proponent not just of small cuts, but also of holds. I have come to believe that holds are just as important to the process as cuts, maybe more. Holding between cuts until you've ridden out a few ups and downs (not just until you get your first "up"), and intermittent longer holds (I do about one three-month hold a year now, because I get such great results when I do).

 

I think at higher doses, you may want to emphasize the reducing, because you're balancing between the damage caused by the drug and the damage caused by the removal of the drug. But at lower doses the damage caused by the drug becomes smaller. I'm at such low doses now (after four years) on Xanax and Celexa, that I really don't feel the effect of them much, and I'm enjoying improvement by leaps and bounds--except when I try to taper too fast, when I get sick again. So with those drugs, holding and going really slow is a lot easier than it used to be, and it also makes more sense.

 

So that's one new thing--the usefulness of holds, for sure, but also looking at them differently at lower doses.

 

The other new thing I've sort of stumbled across for me is "intentional down time." Used to be when I got bad, agoraphobic, sick, anxious, I had no choice but to take down time. (And it's still that way sometimes when I'm cutting and get hit with withdrawal.) I would cancel social plans, reduce my projects and commitments, and just stay home in a nonstimulating environment and ride it out. Recently, a few times, I did something a little different: I took some down time even when I really didn't NEED it, not obviously, not desperately. On a day when I had some free time and could have gotten projects or errands done, I just didn't. I just stayed home and meditated, lay in the dark, kept calm, fiddled in the garden a bit, watched a movie, basically kept the stress and stimulation really low. I did that a few times over a couple of weeks. And it seems to me that I felt steadier and better during that time.

 

I may just be imagining things, who knows, but I'm going to keep trying this periodically. Sort of a pre-emptive down time, a pre-emptive hold, voluntarily choosing to give my brain a soft day or two to do its healing work, not when things get so bad I have to, but when things are kind of okay already. (Although I admit I do tend to do this after a particularly busy time, so maybe I'm reacting to subtle messages telling me it's time for a bit of rest.)

 

We'll see how it goes. I just thought I would share this with y'all. Has anybody else tried this?

Share this post


Link to post
Share on other sites
Rhiannon

(Or I could just be lazy. It's entirely possible.)

Share this post


Link to post
Share on other sites
Rhiannon

Just dropping in again to say hi to the turtle contingent--check in and let me know how you're doing. Things are going well here, very very slowly as always. But I gotta say once again, I don't love the slowness of the process, but I'm loving the results!

Share this post


Link to post
Share on other sites
LexAnger

I'm glad to find this thread! I thought I am the only one super sensitive to the psyc med after 5 years use and on/off up/down. I'm now stuck on 4.1mg lexapro. Regardless staying on, up or down 0,05 mg it gave me different set of unbearable symptoms physical, mental, psychical. By holding on 4.1-4.2 mg for the past 2+ months, my major suffering now is the severe pain all over my face, head, ear, neck, shoulder back. It changes every hour or minute over the day with similar pattern. Numbness in the morning, better half hour before dosing (10:30am - 12:30pm as i cant tolerate a single dose all together) worst during and after dosing with needling and pin until late in evening when all lessons.

 

I agree the slow taper sufferers suffer great deal with disparate of how slow you have to go and hopelessness how long this will last even it will ever get to the end.

 

Could anyone share your thoughts how bad your daily life is like and how you manage to continue? I feel I'm not able to live for many hours everyday.

 

I need to update my signature to reflect the recent severe situation. It has been several months since my last update. The worst ever in the past 5 months.

 

Thanks in advance.

Share this post


Link to post
Share on other sites
Ip51

To LexAnger

 

Your symptoms sound awful. I am so sorry you are suffering. I suffered a lot before I found the tiny dropping dosage that finally worked. I had to reinstate to previous dosage each time until the symptoms went away. Then would try again but smaller dropping amounts. It seems I can only withdraw a hairline which comes out to around .025 mg every few weeks. It is disgustingly slow. It was either that slow or never withdraw! How sad for all of us.

Share this post


Link to post
Share on other sites
Rhiannon

Hi Rhi,

 

How do you make such small cuts?  I'm looking to do this and am on compounded Remeron 1ml/1 mg.  I have a 1 ml oral syringe from the pharmacy but that wont help me drop from 1.4 to 1.35 for example.

 

Your advice?

 

Dalsaan

 

Dalsaan, I dissolve my own tablets and measure out my own suspension, so I can make it as diluted as I want. So for example when I got down to really low doses on alprazolam and citalopram, I doubled my dilution. Instead of dissolving them in 20 mL of water I went to using 40 mL of water.

 

So for citalopram that's 10 mg in 40 mL, or 1 mg per 4 mL, so I have more room to make small cuts.  I use a 5 mL pipette for those, which has ten lines between each mL, so it's super easy to measure 1/10 of a mL with that, and I actually measure to a point in between the lines so I can get cuts as small as 0.05 mL which right now is small enough for me. (I think that works out to 0.0125 mg of citalopram.)

 

Also, just to help people keep the distinction between mg and mL: Those words mean milligrams (thousandths of a gram) and milliliters (thousandths of a liter).

 

A gram (or kilogram, which is a thousand grams) measures weight (like how most of the world measures people's weight in kilograms).  So it measures the actual solid substance of the drug (which is part of what's in the pill but the pills have a lot of filler too, only a little bit of what's in there is the drug itself).

 

A liter is like what you buy soda in, it measures liquid. So milligrams and milliliters are only equivalent if you are working with something that has a concentration of 1 mg of drug per 1 mL of liquid. Any other kind of dilution and it's not equivalent. 

 

How diluted you want to make your concentration depends on the total dose of the drug and how small you want to be able to make your cuts. For example, I dissolve my 100 mg of Lamictal in 20 mg of water, right now, because I'm still making 1 milligram cuts at a time right now, of that drug (1 mg is about 2% at this dose, 2% is about my max for any one drug at any one time).

 

I hope that clarifies more than it confuses. 

Share this post


Link to post
Share on other sites
Rhiannon

Hi LP51, thank you very much for your kind response. It helps a lot reading your message.

I'm happy for you that the slow taper worked. Do you still experiencing any symptoms Witt the micro taper? I have been feeling so dreadful and on the edge giving up all with all the pain and very uncomfortable feelings every part of my body. Im so exhausted to getting thought each day without much hope of any improvement regardless how hard I try, sleeping, diet, walking, swimming, meditation, yoga everyday. The only thing keeps me going is the short break I get in evening. I'm very frightened about morning when everything goes back the square one.

Lex, I'm so sorry you're suffering so much.

 

I think I've probably said this in your Intro thread, I think your best bet now is to keep on keeping on and not change any meds. My hope is that over time your symptoms will improve and eventually, after a while, maybe a year, maybe longer, you will actually feel fairly well. Once you're feeling fairly well it will be time to think about tapering, and given your history, I think a very slow taper with tiny cuts will be your best bet, at least to start. The great thing about making only very tiny cuts is that if you get a bad reaction to a cut it's easy to correct it without re-destabilizing yourself and making yourself ill.

 

In answer to your question about how people feel with these slow tapers, well, I actually feel really well most of the time. I'm a little off right now because I just made that cut to 53 of Lamictal and 1.6 of Valium at the same time, and that combination always messes me up some. But I know it will pass and in a couple of weeks I'll be feeling better. A lot of the time I feel pretty good. Definitely better than I ever felt while taking the regular doses of the drugs I'm now tapering.

 

I do get how hard it is to imagine tapering for years. It took me a little while to wrap my mind around it, but like you by the time I got to that point, I was already so sensitized that I knew I had no other choice. That is, it was either stay on the drugs for life, or taper as slowly as it takes. I was at the point where being ON the drugs was so disabling I was not going to be able to work for a living and support myself. So that's how I ended up here.

Share this post


Link to post
Share on other sites
Rhiannon

1 mg to 1 mL means 1 mg of active ingredient to 1 mL of liquid suspension, yes.

 

I didn't mean to confuse things, but I think I did, by mentioning pills and fillers. It's just that when people measure their pills for dry cutting, sometimes they get confused and think if the pill weighs 200 mg they must be getting 200 mg of the actual drug. That's not what you're doing and not really relevant to your situation.

 

You could probably get it compounded at a higher dilution if you want. Ask the pharmacist. Or you can maybe dilute it yourself, the pharmacist would know that too. With a syringe that has ten lines between each mL, and a 1 mg per 4 mL dilution, you should be able to get the same kinds of reductions I'm getting. (I think you can get syringes like that; I use pipettes. If you want instructions on using pipettes let me know, they're quite easy to use.)

Share this post


Link to post
Share on other sites
Rhiannon

It is interesting how people get different information. The info I received is that mL are half of what you get in mg. It worked that way for me immediately...no symptoms. And I use two syringes. A 10mL and a 1mL so I can get those hairline cuts I have to have using the 1 mL which is very skinny compared to the 10mL. And it all works. Without the 1mL syringe and the liquid, I would not be able to get off Paxil.

 How many mg there are in a mL just depends on how the dilution is made. It's like saying there are 100 grains of sand in a tablespoon of water, no wait I say there are 200 grains of sand in my tablespoon--it just depends on how much sand you put in the tablespoon.

 

So you can have 1 mg to 1 mL, 1 mg to 5 mL, however you want to make it up. Each of the four solutions I work with is at a different dilution. Lamictal I use 10 mg per 1 mL, Celexa I use 1/4 mg per mL, Valium is 1/5 mg per mL, Xanax I would have to use a calculator but I put 0.25 mg with 40 mL of water so whatever that comes out to.

 

Milliliters measure liquid, milligrams measure weight/mass/solid. So how many mg per mL just depends on how much you put in there.

 

I hope that makes sense...?

Share this post


Link to post
Share on other sites
LexAnger

As grateful as I am, I found this concept of true slow taper is the only hope I have after experiencing the intolerable WD and drug effects as I was pretty sure I cant survive the withdral regardless how strong I try to be. Most ppl has a idea of slow taper as months or up to one yaer at the most and were hit badly which makes them (inc me) feeling slow taper won't make much difference in terms of WD symptoms. Although I'm not there yet with a status/dose giving minimal symptoms, I'm hoping I will find such a point moving on with minimal suffering. This slowness of tapering could have saved thousands from being harmed so badly and failing from stopping.

 

I feel The popular 10% reduction as recommended should be ammended to the wild population.

Share this post


Link to post
Share on other sites
Rhiannon

Thanks, lp.  I came to the super-slow taper because it's the only thing that works for me, too.  And I'm pretty sure that my symptoms are not due to the power of suggestion....

 

However, the placebo-nocebo is interesting; I like the flip-side: that we could "think" ourselves better.  Just by having confidence in the body's ability to heal itself, that helps make us better.

 

A funny thing about my doctor: months ago, he told me that many people find dosage reductions more difficult at smaller dosages.  This month, as my dosage starts to reach the "smaller" category, he tells me that I should have no problems with the remaining reductions, even though the whole journey has not been easy.  I wonder if he's trying to help me "think myself better!"

 

The following link leads to a link to a paper about blood levels of ADs versus receptor occupancy. Print out the charts (starting page 4) and give them to your doc. It's very obvious why tapering is trickier at slow doses; it's an exponential curve, not a linear one.

 

http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

 

It's very common for doctors who are frustrated by their patients' symptoms to decide the patient is imagining them or exaggerating them. And it's true the placebo/nocebo effect is huge. But in the case of psych med withdrawal, you may want to rule out real WD effects (which can range from very subtle to completely debilitating) because WD can come on light at first and then get much worse, so it's important to learn what your early warning signs are and pay attention to them. 

 

The thing is, with withdrawal, the stakes are very high. So I would say better to err on the side of being too cautious than on the side of assuming symptoms are meaningless.

Share this post


Link to post
Share on other sites
Ip51

I say just stick with whatever works.  I have less understanding for the docs because I think they tend to look down upon patients as "ignorant".  Sure they had a lot of training BUT the real truth is that the medical profession blew it on this one and there is evidence that this was started off as a real belief but as the evidence became clearer, the profession was too embarrassed to admit the mistake.  There were other such mistakes in the drug line up...there was the one women took when pregnant and ended up with deformed children. What was that drug called? I forget.  

 

Read Anatomy of an epidemic. The author of  this book has done the extensive research on these psych drugs to discover why we are stuck here as we are.  Why the lies and the denial.  He explains it.  It has to do with how docs had penicillin (the magic bullet) and how the psych profession believed they found one with these drugs (a magic bullet).  But it has not really worked out this way, and so many were led to believe in the efficacy of these drugs.  Now with the newest research we are finding out that long term use in particular, doesn't hold up.  Plus the suicide discussions regarding children and teens.  

 

For example, my therapist, who is a good person, told me about what she knew about SSRIs and she was wrong!  I didn't say anything because she is good at other things.  Why are so many professionals wrong?  I know way more about these drugs than she does/they do, but they are trained not to listen to us...because we are nuts or unprofessional, not trained, etc.  BUT, because of our dilemma, we have done the research and found out how really screwed we have become.  So do we just ignore it?  And doubt our own truth?  Take advice based on falsehoods? Many of these docs would love that so they don't have to deal with the anguish and guilt of having caused harm.  They have vowed to "cause no harm".

So they are victims as we are for believing what we were all told.  But sadly, instead of joining forces the docs need to make us "not OK" way as we have seen in our own journey.  

 

It is a painful process to raise awareness, isn't it?  Someday our society will look back on this  and learn from it.  But we are right in the middle of it now!  All we have is each other and the support here and in places like this forum.  I am so happy this forum is here.  

Share this post


Link to post
Share on other sites
Rhiannon

Can't agree more, lp!

 

One thing the docs forget about is: they are not trained in this particular area and especially these drug related WD so they are no different from anyone else in the whole world. As less as human as a whole knows about the brain, we, the victims experiencing the real wonders these drugs do to our brain and body, and learning eagerly in all aspects are actually trained in a real situational setting. 

 

Lots of ppl I talked to about my WD problem keep telling me to see a professional. well, I had to remind ppl again and again that there are no professionals in this field as here is how professional is defined: 

 

A professional is a member of a profession. The term also describes the standards of education and training that prepare members of the profession with the particular knowledge and skills necessary to perform the role of that profession. In addition, most professionals are subject to strict codes of conduct enshrining rigorous ethical and moral obligations.

 

I believe eventually, at a point when way too many ppl get harmed/destroyed by these drugs, the entire world will take it seriously and ban all these very very dangerous drugs all together, only that its sad and too late for the victims. It will be a huge event/record in human's history. 

 

I was just thinking about this yesterday. Doctors are supposed to be practicing something called "evidence-based medicine" which is medicine based on actual science. Unfortunately most of what passes for "science" in medicine has been shown to be pretty bad. Nowhere more than psycho-pharmacy. As far as actual evidence based medicine is concerned, there is no science about the long term use of these drugs. As far as I know those studies do not exist. There is also no science about tapering and withdrawal, also studies which have not been done.

 

So anyone whose doctor says they're wrong about needing to taper slowly, or about getting worse on psych meds, that doctor needs to be questioned: how do you know? Where are the studies? Where did you learn that? I would like to see those citations.

 

Seriously, if you know a doctor who is saying that we are wrong about tapering, and has some actual solid evidence for that, I want to see it. 

 

In the meantime, the best we can do is build up our own experience and help each other. 

Share this post


Link to post
Share on other sites
Meimeiquest

I have been thinking about a couple of things about this. First, I was once a big believer in "evidence-based medicine." But really, even if it is done right, it just means that significantly more patients had one experience significantly more often than another experience. It doesn't tell you which group you will flail into.

 

Secondly, in my own heart, I find that one of the reasons I want to hurry is that I want to PROVE to the world, especially the medical community, that my diagnosis was wrong and LOOK, I am just fine without drugs. Not exactly the most helpful heart motivation.

Share this post


Link to post
Share on other sites
LexAnger

After experimented all different things like recommended slow tater (5% reduction), various expensive supplements etc, this is so far I found the only hope for my situation, by doing the micro taper. I have been doing 1% reduction holding for 2-3 weeks and feeling less intolerable symptoms. Hope the strategy continue working at lower doses.

 

Such an unbelievable nightmare, keep the faith and be positive. I'm now only taking fish oil as most supplements I tried (from point of return, roadback) are messing thing up more. Simple, patience, consistence are what I learned from this site snd every here and it seems the right way to go.

 

Glad we have each other, very grateful!

Share this post


Link to post
Share on other sites
Ip51

Hi LexAnger, it seems we have come to the same place. I tried various tapers as well and nothing worked until I went to the smallest possible. I think they are less than 1%. But I get there and got from 7.5 to 6.1mg. It took a year or more but wouldn't have bothered otherwise so I get to withdraw and try to be peaceful about the slowness of it.

 

So you are on a good path and will succeed! That is the important part...YOU win, not the drug lords.

 

Stay in touch and get support you need and give the support to others. People come here so confused and freaked out. Who can blame them!

 

But there IS a way, as slow and sad we may feel it is, no matter, because there IS a way to win this.

Share this post


Link to post
Share on other sites
Rhiannon

I'm currently making cuts of 1-3% at a time (depending on how I'm feeling, how many meds I am cutting at a time, and what's coming up in my life that might be stressful). I generally make a couple of cuts fairly close together, within a couple of weeks, then hold through the cycle of feeling a bit worse, until I feel consistently pretty good. Then maybe another couple of cuts like that, maybe a third time too, but usually along in there somewhere a longer hold, and about once a year I hold for two to three months.

 

I'm pretty sure that the holds, for me, are a crucial factor in how well I do overall. I notice a lot of improvement with, and for a couple of months after, every long hold. I feel like my body uses that time to catch up and heal and establish a new, better "normal."

 

I know I've said all that before, but people don't always have time to read the whole thread so I thought I'd repeat it.

 

It's slow, for sure, but I'm finally to the point where I can look back at where I started, and look at my life now, and look around at the other people who arrive at this forum, and see how fortunate I am that I stumbled across and/or figured out this slow taper thing. There is no other way I could have gone from 10 mg of Celexa to less than 1 mg while starting a new life and a new job, working very antisocial hours, in a place where I didn't know anyone at all in a very different part of the country from where I had lived before. In the past, every time I changed my meds, tried to cut back, I became so miserable and suicidal and could barely function, let alone work a full time job or deal with any other kind of stress.

 

I've also come down on the other meds almost as dramatically. It would have been miraculous for me to be able to reduce that many meds by that much, if I had done it in the conventional manner. If I had tried to reduce them faster I would definitely have lost my job and the tenuous second chance at having a normal life, nondisabled, with a little bit of financial security and stability, that I have now. (Well not really security in the conventional sense, but a job that pays the bills, which was definitely not something I could take for granted back when I was on those "therapeutic" doses.)

 

I guess now I don't see it as "I'm going to get off these meds and then get back to my life." I see it more as like having a chronic illness or something. I know that doesn't sound cheery, but at my age I know a lot of people who have developed chronic health conditions that they are going to have to live with for the rest of their lives without improvement. With my taper I am at least seeing ongoing improvement and progress, and there's the hope that it will end someday, and even if it doesn't, I am so much better now than I've ever been in the past, that I could live like this and have a good life and be content, if I had to.

 

I just wish there was some way I could spread this knowledge to all those people out there struggling with meds and their disabling and life-ruining effects. 

Share this post


Link to post
Share on other sites
Ip51

I like what Merry said about thinking of it as a chronic illness. That is similar to how I deal with it. Just had to make peace with the process and the many years to withdraw and finding a withdrawal dosage that keeps me sane and able to feel happiness.

 

We are on this ride together and I am so thankful for this forum and others like it so we don't have to feel so alone and desperate AND dont have to remain misinformed!

Share this post


Link to post
Share on other sites
Ip51

I know you wanted to hear from Rhi, but just wanted to tell you I discovered I cannot drop more than 1% or less per drop. If I do the symptoms are horrible. This amounts to a hairline on my 1mL syringe. If you are getting symptoms then my guess is you just have to drop smaller and smaller amounts until you find a drop level that works. I had to reinstate numerous times until I found the right dosage drop.

 

Just a thought.....

Share this post


Link to post
Share on other sites
Rhiannon

I hold for a week or two for a while, then sometimes take a break and hold for 3 weeks or more. Then continue on. If I have to do something like go on a trip or have a surgery, I just hold til it's over. But then I am OK holding as long as I want. But this plan only works because I go down by such small drops. Like by 1/2 of 1mL each time. Crazy, but I don't care because it works and Ito is the only way I can do it and have a peaceful life! I refuse to suffer and if going this slow keeps peace with my neurology, then that is what I must do.

 

I hope you are doing well dear LexAnger. (-:

 

That's pretty much how I do it too. I plan ahead for life disruptions a lot (this spring I have a trip and at least one surgery coming up, in fact, so there you go!) 

 

Plus occasional longer holds. If life had not forced me to take a long hold about once a year so far (like 2-3 months) then I think I would do it voluntarily, because I always feel so good when I do one. And so far I have felt like the improvement has left me at a better baseline each time, although I do get withdrawal symptoms when I start cutting again of course.

 

Over the course of a really slow long taper you get pretty good at knowing what to expect and how much you can handle.

Share this post


Link to post
Share on other sites
nz11

Wow Rhi those are awesome slow tapers ...ive never seen anyone continue tapering below the 0.9 level for an ssri. Actually i think one or two my have from pp but cant recall.  Does SA have a policy on how low one should taper too. Wow anyway full credit to you, you are certainly getting there on clearing the table.

 

I just crunched the numbers and heres your approx. average taper speeds assuming monthly drops ...i am aware you are not doing monthly drops,

lamictal           celexa           xanax               valium

2%                     4%              3%                     0.0045%

All tapers to date cover 59 months except the valium taper which is only for 47 months..my guess is you maybe havent tapered valium just dropped a little each year. (ok i got bored and had nothing else to do ...just goes to show how potently addictive  these drugs are.)

Also assuming the 'now' refers to jan 15

I guess you are not following any taper speed just listening to your body right.

 

One of my favourite quotes comes from Breggin

"After wdl from medication has been partially or fully completed, previously medication-spellbound individuals often realize for the first time that they were significantly impaired and that they are now recovering and returning to themselves."

This was/and is still very true for me ...it looks as if its true for you too!

I rejoice with you in your journey to freedom.

Share this post


Link to post
Share on other sites
MapleleafGirl

Right on MapleleafGirl!

That was exactly what I said.....to withdraw with minimal or no symptoms. I like that you chimed in with a successful story! It gives me great comfort. My withdrawal will take about 5 years but I don't care because I get to do it peacefully, like you!

 

Yay! Yippee! It is possible to be done with it! Yahoo!

Thats Awesome!!! the slower you go the better...take your time....that is what i did...i was not in a rush to get off ...i knew that evenually the 38lbs i gained on paxil would come off and it did year 2 into my taper...most of it..then year three all of it...i knew that eventully i would start to come out of the paxil fog and year two it started to get better...all the things that were giving me issues except the fatigue started to get better:) so a slow taper is the way to go...I am also vocal about reinstatement...if someone is suffering and needs to go back on..then they should atleast give it a try..I did it 2 times once at a year off after i had my daughter back in 2005 and then the second time i went back on at 11 moths off after attempting an 9 months taper...and that did not work..so in the end ..i went back on Paxil to save my life..and for me it worked and then i did my slow taper a couple of years later on:)

Share this post


Link to post
Share on other sites
Songbird

Nice to be in the company of other turtle taperers!  At PP I was one of only a few.  My latest taper has been going for six years now, and will probably last another few years.  I really hate how long it is taking, but after so many failed taper attempts, I am determined to be succesful this time.

Share this post


Link to post
Share on other sites
LexAnger

Hi maple, one thing I am very curious about your slow taper, did you feel any hardness after the last dose free of the meds completely? The reason to ask is, some ppl say the healing only starts AFTER complete free of meds. Thanks!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×

Important Information

By using this site, you agree to our Terms of Use.