Feel completely hopeless

[[Lo...]]

Thank you, I think that's really good advice. That quote from the Ashton Manual has me thinking though...do you think we've reached toxicity? Is that the same as a paradoxical reaction? Updosing/reinstating may work for some but it was a horrible decision for me and then after the failed Valium crossover I've just been a complete wreck. Trying to take it a breath at a time but it's hard not to look ahead at the prosect of facing a long microtaper in this condition. Also when she says "complete withdrawal is necessary when this happens" she still means at a slow paced taper, right?

 

I think there is a sense of urgency and fear in that paragraph Heather Ashton wrote that doesn't really elicit any kind of a warm and cozy feel in a benzodiazepine sufferer. Just reading it may cause panic. There are better ways to reframe that paragraph. I think what she's basically saying is that we reach a point where further updoses are probably going to be more harmful than helpful. As far as making mistakes in this, I have a huge problem with dealing with those emotions as well. Beating ourselves up for making decisions that seemed to be sound and logical at the time is a tough one to deal with. When she says that complete withdrawal may be necessary, I am sure she means a gradual (slow) withdrawal.

 

I think, in our situations, it's important not to become psych-med phobic, either. Obviously, you're not going to proclaim "Oh, Klonopin saved my life!" or anything like that, but having this idea in your head that you "must get rid of the poison in the body ASAP" doesn't help, because it causes so much internal pressure and tension which just adds up on top of the current symptoms and a fear of a possibly long taper.

 

It is questionable if we actually needed those meds in the first place, but right now our bodies do need them to survive, so a slow careful taper is important. And there's no shame in that b/c everyone's physiology is different and some of us have a lot harder time getting off these meds than the others. But I think, at this point, the focus can perhaps be an attempt to lower the dose a little bit, and just hold there, so you get some strength out of feeling of movement. just one day at a time 

 

[[Ni...]]

Thank you, I think that's really good advice. That quote from the Ashton Manual has me thinking though...do you think we've reached toxicity? Is that the same as a paradoxical reaction? Updosing/reinstating may work for some but it was a horrible decision for me and then after the failed Valium crossover I've just been a complete wreck. Trying to take it a breath at a time but it's hard not to look ahead at the prosect of facing a long microtaper in this condition. Also when she says "complete withdrawal is necessary when this happens" she still means at a slow paced taper, right?

 

Hi Fuzzy...

 

I reached that place - "toxic" tolerance. This was before I knew anything about benzobuddies or tapering - or, even, what was wrong with me. I suspected the benzos and knew they had to be tapered - but that was all. An extra dose at that time did nothing to relieve anything and I felt it was "poisoning" me and making things worse.

 

I knew I had to get off fairly quickly because I was in the worst of places - needing to be on them and needing to be off them all at once.

 

So I tapered according to my own take on it, which was 2.5V equivalent at a time (from 20mg total) every few weeks, over 4-5 months, and I really couldn't tell if the horrific symptoms I had (in line with yours now) were because of my condition or stemming from any cuts I made. Didn't notice any uptick in symptoms at cutting time - but that was probably because the background, underlying symptoms were so loud anyway.

 

By far my worst time was when I was still on the drug. Improvements happened while tapering. Improvements happened more substantially, in hindsight, from the time I was fully off. I look back and sometimes think I was better off not knowing about BB - or I might have tried to crawl my way down on a very slow taper  the "proper" way. A year later, none of how I got off seems to have mattered.

 

These are only thoughts from my lived experience. I'm not advocating anything, even though I am leaning towards "getting off as quickly as is feasible" for people who find themselves in uber-tolerance WD. Just wanted to let you know my experience with it to add to your info-base.

[Guest [Fu...]]

That's what's so hard! I am so bad off that I'm terrified to speed up my taper and possibly make things even worse to a place I may not be able to come back from if I experience the worst of the worst side effects like akathesia or psychosis and I have it drilled in my head that I need to go as slowly as possible. But when my quality of life is zero and I'm hanging on by a thread doing a long hold that doesn't guarantee anything or a super slow taper like I'm doing now is unbearable. I don't know how other people do it but I can't live this way and from what I've been told a microtaper is meant to come from some place of stability in order to preserve that. Since I haven't come close to that in a very long time I can't help but feel like I'm prolonging the agony. I truly don't know what to do. I also wish I never found BB if we're being completely honest. All the advice I've followed about switching to Valium and reinstating has made things a million times worse and reading all of the horror stories scared me from starting a taper years ago before things got really out of hand.

 

Lorazepam Free - Thank you for the advice and the clarification. I don't think there's any question about whether I ever "needed" this horrible drug. I wouldn't have touched that first bottle with a ten foot pole if I could go back in time. There are so many ways to manage anxiety without this horrible, horrible drug that should have been taken off the market or at least highly regulated decades ago.

[[Re...]]

I'm sorry you all are suffering. I am as well :'( I wouldn't have touched this stuff with a ten foot pole either looking back.. I agree on regulations. I wonder if the person/people who invented benzos used them at all.

 

Google search

"The first such drug, chlordiazepoxide (Librium), was discovered accidentally by Leo Sternbach in 1955, and made available in 1960 by Hoffmann–La Roche, which, since 1963, has also marketed the benzodiazepine diazepam (Valium). In 1977 benzodiazepines were globally the most prescribed medications."

[[ke...]]

I am not necessarily advocating this, but I eventually threw in the towel and did an inpatient psych detox (not addiction based) where they tapered me off quickly and replaced the benzos with a bunch of antidepressants. It was harsh as hell but it did work. Your story reads a bit like mine did.

[Guest [Fu...]]

That's another thing that the vast majority of people (like 99.9%) on benzo boards advise against (going to an inpatient detox). I've had people tell me that doing that was the worst decision they've ever made. All of this conflicting advice is what drives me crazy. Like it's not enough that we have to go through this unbelievable Hell but there can't at least be one surefire way to get off that works for everyone. I know that you're just giving your experience and don't mean for this to be directed at you just in general it's insane how things vary from person to person. Also even if I wanted to I have terrible insurance and they would send me to the worst of the worst facilities that would rip me off in like 3-5 days and then I'd be a cold turkeyed mess. So I don't think that's an option. I WISH that we could just go through a week of hell and be done with this. I hear people describing heroin withdrawal and while it sounds terrible at least it's over in a week and if they can rough it out they get their mind and their body back. Sign me up for that over YEARS of this torture. All because I followed my doctor's orders. It's absolutely insane. I couldn't have fathomed that the withdrawal could be worse than heroin and nobody in the general public even talks about it.

[[ke...]]

That's another thing that the vast majority of people (like 99.9%) on benzo boards advise against (going to an inpatient detox). I've had people tell me that doing that was the worst decision they've ever made. All of this conflicting advice is what drives me crazy. Like it's not enough that we have to go through this unbelievable Hell but there can't at least be one surefire way to get off that works for everyone. I know that you're just giving your experience and don't mean for this to be directed at you just in general it's insane how things vary from person to person.

 

Trust me, this bullshit negativity that I listened to harmed me. When I finally got admitted, I had lost 42 pounds in 4 months and I was truly non functional. My admitting Psych at Johns Hopkins told me on day one that I would be taken off over several weeks and I would go home feeling better than I did at admission. When I challenged him with the slow taper orthodoxy, he informed me that he had 30 years of experience taking people off of benzos and that the slow taper stuff was BS if you were already sick with tolerance and depression. If you were doing OK slow tapering at home, keep it up. If you are a wreck, than it was a good alternative. Ant the antidepressants dramatically reduced DP/DR but did not eliminate it. So after 40 or so days I went home feeling absolutely lousy, but better than I did the day I was admitted. I even gained 10 lbs during my stay. One note of caution though, I was at a top place. Community detox would have probably been an absolute disaster.

[[ke...]]

Please note my distinction. A 3 to 5 day "taper" will probably be a disaster. Having it spread out over several weeks means the symptoms will build more slowly. They will still be bad, but you will have some time to adjust. And being lectured as a drug addict will be harmful.,Most of the detox horror stories that you have read have pertained to community or addiction based detox, which is inappropriate imo to accidental benzo "addicts".

[Guest [Fu...]]

Most of them are but some of them have been from people who spent like 30 grand on a month's stay and come out even worse than when they came in. I was doing just fine (all things considered) with my taper then ever since the reinstatement it's been a complete nightmare. My family doesn't have the money to send me to a quality inpatient facility so a terrible one is where I'd be. Looks like my only option is months (years?) of agony. I honestly don't think I'm going to make it. Physically or psychologically. I know people say that all the time but I legitimately can't stand to lose 10 more lbs. What other options do I have in severe tolerance, completely non functional and without the means to go the route that worked for you?

[[ke...]]

Do you have health insurance

[Guest [Fu...]]

Yeah but it's state insurance and it doesn't cover anything. The two times I went to a CCS which is like a step below inpatient they were straight up crackhouses. The outpatient facility they offered to send me to has been shut down by the state like four times for gross negligence. They send me to the worst of the worst. You must have had amazing insurance to cover 40 days at a very good facility.

[[ke...]]

If tour outpatient doc recommends an antidepressant, please consider it. They can be helpful

[Guest [Fu...]]

I have tried many in the past (Prozac, Celexa, Lexapro, Wellbutrin) and none of them helped at all but I'll consider it.

[[ne...]]

Hi Fuzzy, I couldn't go to a detox facility either, there aren't any good ones in my area and couldn't afford it and frankly at this point it's very hard for me to any trust doctors and any meds again. The suffering I'm going trough is inhumane and I am in shock that all this happened so easily! To answer some of your questions:

 

Thank you, I think that's really good advice. That quote from the Ashton Manual has me thinking though...do you think we've reached toxicity? Is that the same as a paradoxical reaction? Updosing/reinstating may work for some but it was a horrible decision for me and then after the failed Valium crossover I've just been a complete wreck. Trying to take it a breath at a time but it's hard not to look ahead at the prosect of facing a long microtaper in this condition. Also when she says "complete withdrawal is necessary when this happens" she still means at a slow paced taper, right?

 

I am not sure what she means by "toxicity", I was wondering the same thing as you. But yes, she still means at a slow pace, because it's important not to shock your system. What she wanted to say I think is that when you reach relative W/D, there is no point in continuing in persisting taking the drug (as I have done, stupidly and ignorantly) but to start a taper as soon as possible.

 

What I do, is follow the Ashton Manual tapering schedule regardless how I'm feeling. I cannot "hold until I stabilize" and then taper based on my symptoms, as I've seen other people here on this forum do. There isn't such a thing for me. I guess they have started they journey from a different place than mine, and that was the right thing to do in their situation. Tonight is time for another cut. May God be with us!

 

Also, I think NightWatch wrote you a terrific answer.

 

I'm sorry to hear you are suffering as much as you do, I know how hard it is....  :'( We must keep our hope at all costs!  I'm sending you my love and prayers.

 

[[Ca...]]

Hey Fuzzy,

Im thinking the same as Newgirl and others... slow SX tapering is based on initial stability... If holding/updose wont get you there... -Then a sensible/safe taper rate it is...

 

Im thinking of my oxy situation, and it fits what is being said here...

My tolerance seemed to swap over to WD as I got going... I got down to 25% (120mg) before any problems... but I hadnt reduced my cut size at all...

I did a CT from there and it all got messy...

 

But tapering wasnt that much worse than at such high doses. I think the initial cuts were the worst, until the mess that came post jump... But things are improving...

 

I know this is another med, and not so comparitive... But having hope for improvment while suffering is much better than seeing endless suffering...

 

Whatever you decide, you have my best wishes...

 

 

 

[Guest [Fu...]]

So I'm just left with a very slow microtaper with zero stability off of a high dose of Klonopin that will take years? I've gone through a lot of medication changes this year, do you think that a hold could maybe stabilize me at least to a point that a microtaper would be bearable? I truly do not think I'm going to possibly survive this otherwise.

[[Ca...]]

So I'm just left with a very slow microtaper with zero stability off of a high dose of Klonopin that will take years? I've gone through a lot of medication changes this year, do you think that a hold could maybe stabilize me at least to a point that a microtaper would be bearable? I truly do not think I'm going to possibly survive this otherwise.

Im a big fan of long holds... BUT they arent for everyone... To hold for 6,8, 12... Months with little sign of getting better can be beyond hard... Benzo lies play havock, and most often things seem to get worse right before they start to get better... It is why the Long Hold Support Group is such a strong group, and there is a strong focus on distraction, when possible... (IMO)

 

I started tapering at too low of a dose, and cut too big -was taking V as needed...

It took 4months of no improvment and failed cuts before I saw improvment, windows n waves..  stupidly I cut again too early, too big... (I had some other medication stuff going on) But I should have waited 6months at least...

Point being, There is more to a long hold than one might first think...

It might help to visit LHSG and ask for the properganda list to read...

 

Many of us find that Ashtons taper speed is way to fast, and it has led to failed tapers... probably fine for a selection of the general public, but not for the harder of the cases that find their way to BB...

But dropping less than 1V per year at low dose is working for them... -and avoiding post accute can be a nice bonus..

 

But If you are truely in tolerance, rather than unstable, then everything I have read points to starting to taper... Others will know much more than I, but im not sure I would want to be doing too slow of a taper, atleast to start with... perhaps once tolerance becomes more withdrawal.. But thats too sciencie for me to explain...

There are some orange stickies laying around above some pages -WD Support, Chewing The Fat... etc.

Have you read Perceverance's work??

 

Just my thoughts, and probably nothing new to you...

Either way its a big commitment... Hold or cut...

I hope you get more imput, and can define your exact situation...

 

My best...

 

[Guest [Fu...]]

I just don't know whether to hold or taper slowly hoping to not shock my already rocked CNS. I'm terrified of making a big cut and experiencing symptoms that I potentially can't bounce back from. I don't expect a concrete answer and I appreciate your advice it's just crazy how many variables there are and how nothing is certain. I could hold for 18 months and not improve at all. I do think 10% a month was too fast for me and that's why my first taper failed so I can't imagine doing 10% now in this state. I thought 5% would be doable and it has been a struggle to say the least. I just wish I knew what the hell to do the uncertainty is part of what's driving the overwhelming fear.

[[Ca...]]

When I got stuck, or more lost, -not knowing what was from which medicine, or if I was tapering V into further protracted opiate SX... -I found reading was what pieced the puzzel together...

First I would try to define if you are indeed in Tolerance, as opposed to Withdrawal...

 

Speaking for myself, one of the best things I did was a large V reduction, just to see what was V and what was opiate... I then had to reinstate, but I knew there was no further need to hurry my taper...

In essense, I changed the state of play...

 

Only you know what you can handle though, and that will affect your choices to a degree...

 

 

[[ne...]]

Hi Fuzzy, how are you feeling today? What are your symptoms at this point in the taper?

 

[Guest [Fu...]]

Today I have overwhelming fear and depression. I just worked up the courage to get out from under the covers. My agoraphobia and depersonalization are unbelievable.

 

I thought tolerance was defined as when the medication stops having any impact and a higher dose is needed. Since higher doses have given me no stabilization that's why I think I am in tolerance withdrawal.

[[Ni...]]

Today I have overwhelming fear and depression. I just worked up the courage to get out from under the covers. My agoraphobia and depersonalization are unbelievable.

 

I thought tolerance was defined as when the medication stops having any impact and a higher dose is needed. Since higher doses have given me no stabilization that's why I think I am in tolerance withdrawal.

 

Awful sorry to hear that Fuzzy...  I can identify - I was there too about a year and a half ago before I had tapered anything; increased doses didn't work for me either (I thought they made things worse) - but I'm here to say that all of it shifted in the period since and now I'm down to three things: gut signalling & upset, insomnia not fully recovered, and agoraphobia is still niggling. No anxiety, no panic, no dp/dr - all of that stuff faded around six months off.

 

I began with tiny, tiny steps (literally); food (as we've already chatted about elsewhere) and physical movement. Physical movement was so small to begin with that it 'hardly counts as a real thing' (but then, clearly, it did): Just standing - for very short periods - was the beginning of it; taking five steps over and back, in the bedroom, was the follow up. That was it. Tiny.

 

Tiny was good. I "just did it" every day, at random - no thinking, just action. No focus on what might need to be done next; no planning; just this.

 

Hang in there - we're all behind you  

 

 

[Guest [Fu...]]

Thank you so much. I needed to see that today. Knowing that you were in this place and made it out means a lot to me.

[[ne...]]

Hi Fuzzy, it is possible that you are in fact in tolerance withdrawal. I know I am, I feel dreadful (you can check my blog for sxs) and no amount of holding would improve that, and I just want to be done with it at a sensible rate. I personally chose to taper every two weeks, and I'm going to stop only if I get into seizures or cardiac arrest. Micro-tapering and long holds are just not right for me, maybe they are not right for you either?

 

Just a suggestion, you could maybe think about reducing objectively: "Is this going to cause organ failure, heart failure or seizures?". I *know* going trough this feels like dying, but what if it's our anxiety speaking? What also helps me when I am confused and have to make a decision is to write everything down on a pros and cons list. Just seeing things written in front if me helps.

 

We have to remain focused and strong and even get comfortable with our discomfort and our uncertainties, and remember that as the days and months pass, we are getting closer to and closer to the finish line and freedom from this poison. We have to remember that better days lay ahead.

 

Of course, you know best. I Hope this helps. Sending you healing thoughts and hugs,

xoxo

[[...]]

Thank you so much. I needed to see that today. Knowing that you were in this place and made it out means a lot to me.

 

Fuzzy , I'm sorry you are having such a rough time ..... I just wanted to say you are not alone. I am really sick and stuck not knowing whether to cut or hold or what . I made a very small cut in June of my Valium and have been getting more and more sick ever since .

The Valium has also become so sedating to me I can barely tolerate it .

It's so confusing  and scary as I knwo you are aware . I've been holding but I'm not getting better .

I'm afraid to cut in case things get worse ....but as newgirl said somehow we have to find the strength to keep going .

I don't feel strong or brave and I have no idea how people do this .

Nightwatch , thanks for your encouraging post .... 

 

At least when we cut a bit we feel like we are making some progress instead of being just stuck .

 

Hoping things improve for both of us ..... We'll make it one day ... Hang in there ,

MiYu