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How to Save Ourselves


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So I think my earlier thread was a bit long-winded on my part. If you care to read it, it's called "Beyond Success Stories."

 

What I believe might be very helpful is if we could formulate some ideas, even a list, of areas where we think the benzo community needs help, but also, what we as a community could DO to bring that about (either through our own actions or through pressuring others). "Modest" ideas are just as welcome as "grand" ones. And if some of this stuff is already being done or is in the works, all the better, because then the poster can be shown where that help already exists or ways they could get involved.  So:

 

Q1: What would help?

Q2: For each idea you identified, can you also suggest what could be done to make that idea a reality? (It’s ok to skip this part if you don’t have suggestions.)

 

It might be also be good to not attack other's ideas or say why they won't work, as this just leads to endless back and forth. Things like that also deserve their own thread if they are important enough! Think of it as brainstorming, where there are no wrong answers, just ideas to work off of.

 

 

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As an example of what I mean:

 

We Should Consider Making Success Stories more Visible so that people know what this experience is really like.

 

Success stories are the most compelling accounts we have. They are extremely moving and often demonstrate the incredible pain of what the person went through. As a casual reader I would ask myself, is this what this community considers a victory? Holy Jesus this stuff must be some harsh medicine!

 

I can’t imagine reading one and taking a benzo afterwards for the first time. Can you? Could they be more widely distributed (I originally suggested that future authors send them to every newspaper then can. They're just an email away.  I was also thinking of a collection, like an ebook, that people could download. Put it on Amazon. Things like this are often published with the authors kept anonymous.

 

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A worthy and worthwhile topic to discuss - thank you Quietquiet. Let me see if I’m understanding the format you want us to follow.

 

R1: (idea re: what would help)

 

Individuals withdrawing from benzodiazepines need access to formulations of their particular benzodiazepine that (a) allow them to make gradual and accurate reductions in their dose and (b) have been tested for safety and efficacy by a suitably qualified entity (e.g. a school of pharmacy, a company/organization that specializes such testing).

 

R2: (suggestions on how to make idea a reality)

 

As a first step, we could reach out to the major benzodiazepine advocacy groups in our respective countries (e.g., in the US, the Benzodiazepine Information Coalition, the Alliance for Benzodiazepine Best Practices) to inquire if this “need for help” is on their radar screens.  If so, what actions are they taking to address it and what can we do to help them?  If not, what can we do to get it on their radar screens (or the radar screens of other organizations that might be of assistance)?

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Yes! We stress how tapering is (perhaps) the most important aspect of removing oneself from benzo dependency, but the materials available to us are not (usually) remotely suited for that purpose. It would be like trying to repair a car with just one sized wrench. How are you going to get down to those little bolts? And also the wrench could be poisonous. :)

 

MY metaphor may be stupid, but YOUR idea is wonderful!

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This would definitely fall under 'grand' ideas:

 

A place to live while withdrawing/recovering until ready to re-enter daily life

 

  would need to be based on ability to pay, some will not be able to pay at all

  would need to be long term for some

  would need to be appropriately staffed

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As a small aside to your wonderful suggestion, Challiss:

 

Think of how rewarding it would be for people in late stage-recovery, or in protracted, to be part of that staff, or to have roles to fill as residents? The questions I come back to over and over again are, 1) how does my life have meaning now? 2) who is it in my daily physical life that can understand what this is like?

 

Your idea is so powerful; it redounds in so many directions beyond having a room to recover in!

 

If I had a house I would donate it. Isn't that the first step? Do it once; proof of concept?

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Here's another thought:

 

Update the tapering charts.

 

Ashton herself has suggested that they are too rapid for some people tapering. While we don’t have permission to change the manual, and she is not able to make additions at this time, we could make charts that reflect the years of BB experience. Obviously people on BB are told that they are just a guide, but so many people get sent directly to them without a word of caution. Here’s an obvious example of how the charts can (unintentionally) mislead people: many, many doctors in the US won’t even prescribe Valium.

 

edit: I would add that this seems like a very complicated process that would require a lot of understanding and consideration from people with real expertise: Not something to just be thrown up haphazardly but rather a long-term project.

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As a small aside to your wonderful suggestion, Challiss:

 

Think of how rewarding it would be for people in late stage-recovery, or in protracted, to be part of that staff, or to have roles to fill as residents? The questions I come back to over and over again are, 1) how does my life have meaning now? 2) who is it in my daily physical life that can understand what this is like?

 

1) survival is where many people are stuck for awhile...meaning takes a backseat

2) no one...which is typical, and why this forum is crucial during the process for so many of us

 

 

 

Your idea is so powerful; it redounds in so many directions beyond having a room to recover in!

 

If I had a house I would donate it. Isn't that the first step? Do it once; proof of concept?

 

The house itself is just a start. Then there are all the associated costs to maintain the house, feed and care for the residents...salaries, or at minimum, the cost of feeding volunteers. Insurance. Transportation. It’s huge.

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It really is scary that there is no place for us to go. People, doctors, family, tell me - you should check into a rehab, or maybe you need to go to the ER or spend some time in-patient. I don't even know how to respond to them. When I say they will just make me worse, what they hear is what every person with mental illness would say. There is no safe space for us in the way there might be for someone with severe depression or other forms of mental illness (though I know those places can hurt them too).
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Rehab - no good

ER - not much good

Inpatient - $$$

 

^IMO, of course... :)

 

I think ideally it's best to do this at home if you can.  We're accustomed to trusting and being advised what to do about health conditions by our doctors, thinking they have all the answers, so this is a new horizon for many of us.

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I love the brainstorming of ideas...no matter how grand or small.  Gonna throw in my two cents and start on a more grass roots level.  The only place I had to go was this site to validate what was happening to me.  Didn't get it from dr's, therapists, detox, or concerned family or friends.  If anything held my recovery up.....this was it.  Trying to recover in isolation.  It isn't just being alone in a house, it is being alone in the fear and pain of this lengthy process.  BB validated my experience through a cyber connection. I am grateful but it is not enough for anyone.

Even the rural communities have support groups for NA,AA, grief etc....I can understand that there may not be enough people in small towns to start a new support group but why the hell aren't there any in larger populated areas?  People have been suffering for decades with this syndrome.  This baffles me?? 

 

Why isn't there at least an online support group with an active facilitator?  A weekly scheduled group that is organized, facilitated, non-profit and free for the sufferer or family member?  BB is great and valuable but can't provide the human connections that live support groups can.  I need to look somebody in the eye and feel that connection that "Yep...they know all about it.  I don't have to explain or defend."  Nor do I have to wait days to get a reply or assurance as with the forum and PM system.

Just a thought????

 

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Agree completely, Challiss: I just love the idea of a safe place to heal so much. Especially for elders, people escaping abusive relationships, those who can't perform basic tasks, people with preexisting and severe physical and mental disabilities or illnesses, and so on.

 

And there are many precedents. My uncle lives in a home for people with dementia. I use to live next door to a halfway house for people coming off of illicit drugs. I have my own familiarity with a place that gives refuge to women and their children who are fleeing abusive relationships. Residential rehabs themselves are examples of this, though they aren't for us, and they always cost a fortune.

 

You're right, grand idea idea, but also, an inspiring one.

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A worthy and worthwhile topic to discuss - thank you Quietquiet. Let me see if I’m understanding the format you want us to follow.

 

R1: (idea re: what would help)

 

Individuals withdrawing from benzodiazepines need access to formulations of their particular benzodiazepine that (a) allow them to make gradual and accurate reductions in their dose and (b) have been tested for safety and efficacy by a suitably qualified entity (e.g. a school of pharmacy, a company/organization that specializes such testing).

 

R2: (suggestions on how to make idea a reality)

 

As a first step, we could reach out to the major benzodiazepine advocacy groups in our respective countries (e.g., in the US, the Benzodiazepine Information Coalition, the Alliance for Benzodiazepine Best Practices) to inquire if this “need for help” is on their radar screens.  If so, what actions are they taking to address it and what can we do to help them?  If not, what can we do to get it on their radar screens (or the radar screens of other organizations that might be of assistance)?

 

This is a great idea Libertas. In fact, the Alliance for Benzodiazepine Best Practices has reached out to BB already. I had a long conversation with one of the board members. In the near future we'll be offering, what I consider to be, valuable information for our members.  These things are in the works presently.  I think working together is the way to build strength. I don't foresee a partnership of any kind, simply a sharing of information, necessary information for those going through withdrawal.

 

PG

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Doveluv: Yes, people have very tough times attending AA and NA meetings because of the insistence that you admit to being an "addict," which simply isn't accurate for most of us. I don't know why there aren't groups like this in more place. I remember reading on the boards about a member starting one somewhere...maybe Texas? Does anyone recall?
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This in in reply to Libertas' idea, stated here:

 

R1: (idea re: what would help)

 

Individuals withdrawing from benzodiazepines need access to formulations of their particular benzodiazepine that (a) allow them to make gradual and accurate reductions in their dose and (b) have been tested for safety and efficacy by a suitably qualified entity (e.g. a school of pharmacy, a company/organization that specializes such testing).

 

A buddy on here mentioned to me that he was getting "tapering strips" from a facility in the Netherlands. His benzo was prepared in ever-decreasing pill doses and mailed to him every 28 days. I looked into it and it seems quite legitimate.

 

And it fulfills Libertas' R1 idea.

 

Here's the link:

 

https://www.taperingstrip.org/

 

I sure wish I had known about tapering strips when I was struggling.

 

Katz

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Oregonkatz:

 

Thanks for the link. They offer a number of different types of benzo strips: sadly for me, neither librium not klonopin. I'm going to email them and see if they have any plans to do so in the future. But there are a lot of options here for other people! And Valium is on this list! Very cool.

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the "standard" strips they list with tapering times seem fast to me (from 3mgs to 2mgs in a month) so I guess you'd need to have the pdoc really on board to fill out the special order form. But given that; this could be really really useful!

 

 

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I guess this is the most pie-in-the-sky of them all; though it should be the most obvious thing that would be going on constantly...

 

What could help: RESEARCH

 

From what I've been told, there isn't any research of substance going on. Not even to mitigate the problems of withdrawal. I guess we can say Pharma prevents that, but are they more powerful than the manufacturers of opioids, alcohol, cigarettes, etc? All of which at least have some kind of medication-based aid for those suffering.

 

I'll quote from my earlier rant where I questioned how we could: "find ways to convince our elected officials, or the people that run the various departments and institutes of health, or research bodies, or news organizations, or watchdog groups, or our own providers, to at least TRY to do something about this."

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It is not “pie-in-the-sky” to advocate for research on how to discontinue benzodiazepines safely while also minimizing suffering; it is “mission critical.”

 

Fortunately, there is at least one organization that “gets” this - the Alliance for Benzodiazepine Best Practices (ABBP).  Here are two snippets from the ABBP website followed by a link where you can learn more:

 

“The Alliance is committed to following an evidenced-based approach to determine and implement initiatives that will result in best practice prescribing and discontinuation of benzodiazepines while improving the health of patients and decreasing patient suffering.”

 

“As a part of the process of filling the gaps in evidence, the Alliance helps fund the scientists and researchers who do the research and document the results.  Several papers have been published in this manner, including all of the papers listed below.  The Alliance has several other papers in development.”

 

Reform Initiatives – The Alliance for Benzodiazepine Best Practices

https://benzoreform.org/reform-initiatives/

 

In keeping with the format you asked us to follow (identify problem/need, identify possible solutions/actions), according to the above website, ABBP operates solely on tax-deductible contributions.  There is a “Donate” button on the page. So, the action we could take is to click that button!  (I always conduct due diligence before I donate to any organization.  However, per pianogirl’s earlier post, the fact that ABBP has already reached out to BB and members of both organizations are in communication is definitely an encouraging sign.)

 

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Thanks Libertas! That's just the kind of information I am desperate to hear about and to support (financially and otherwise). Interestingly, one of their major research initiatives is being run through the University of Arizona where the "Benzodiazepine Withdrawal Symposium" will be taking place Sept 16th! The thread on BB with links to the livestream and eventual uploading of that event can be found here:

 

http://www.benzobuddies.org/forum/index.php?topic=228975.0

 

The director of one of their sponsored projects, Dr. Todd Vanderah, will also be a speaker. Below is a description from the link you sent of what they have been working on. I personally don't understand what any of it means, but they seem enthused!

 

"An Alliance-Sponsored Original Research Project

 

"We have defined several gaps in the understanding of the basic neuropharmacology of benzodiazepines, such as the mystery of why “benzodiazepine receptors” exist on neurons in the first place (the endogenous ligand question), and why benzodiazepines bind with non-neural tissue throughout the body.  Many researchers are aware of these questions and the impact that their answers could have.  In 2018, at the request of the The Alliance for Benzodiazepine Best Practices, the University of Arizona College of Pharmacy undertook a research project directed at answering some of these questions.  Under the direction of Dr. Todd Vanderah, Head and Professor of Pharmacology, this project is fully staffed and well underway.  The first results have been compiled, and the University is preparing technical papers and completing the research.  Meanwhile, they have released the information below, which includes raw results from the first phase.  Amazingly, this basic research into the dependence-inducing properties of benzodiazepines has never been done before.  As you can see from the timeline on the chart, several other phases of this research are still underway.  The first phase results will be presented in the Alliance’s University of Arizona symposium (see the schedule below the chart)."

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I love the brainstorming of ideas...no matter how grand or small.  Gonna throw in my two cents and start on a more grass roots level.  The only place I had to go was this site to validate what was happening to me.  Didn't get it from dr's, therapists, detox, or concerned family or friends.  If anything held my recovery up.....this was it.  Trying to recover in isolation.  It isn't just being alone in a house, it is being alone in the fear and pain of this lengthy process.  BB validated my experience through a cyber connection. I am grateful but it is not enough for anyone.

Even the rural communities have support groups for NA,AA, grief etc....I can understand that there may not be enough people in small towns to start a new support group but why the hell aren't there any in larger populated areas?  People have been suffering for decades with this syndrome.  This baffles me?? 

 

Why isn't there at least an online support group with an active facilitator?  A weekly scheduled group that is organized, facilitated, non-profit and free for the sufferer or family member?  BB is great and valuable but can't provide the human connections that live support groups can.  I need to look somebody in the eye and feel that connection that "Yep...they know all about it.  I don't have to explain or defend."  Nor do I have to wait days to get a reply or assurance as with the forum and PM system.

Just a thought????

 

Completely agree that this would be extremely helpful for most of us.  :thumbsup:

 

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I got so depressed this afternoon that I spent an hour remembering my defunct twitter password and sent my first two tweets ever: to Last Week Tonight with John Oliver. I sent links to articles with words like benzo, epidemic, scam, treatment centers. I have no idea why I thought this would be useful, effective, or anything else. I just did it because it was better than thinking about the other things I was thinking about.
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