How to Save Ourselves

[[Li...]]

Update the [Ashton] tapering charts.

Interesting idea, QQ! 

 

Who would be the target audience for these?  Prescribers? Individuals wishing to discontinue?  Both?

 

Would representative charts for each of the most commonly used benzodiazepines be helpful?

[[He...]]

How about a podcast, tell the success stories of real people

Real suffering, have the victims tell their stories live.

I have read them and some are riveting, people need to be warned

Of the dangers of these drugs. These stories read like drama that

No one truly recognizes is insane! I have my own.

[[Do...]]

DE Foster has a podcast at benzo free.org.  He reads people's stories but is considering bringing people on.

[[Qu...]]

I think that the target would be all of the above. I don't see prescribers at the moment knowing any more than patients (often much less), so they would need just as much info as anyone else. But that's just a guess. But because it's near madness to try and find someone that will help (at least in my experience) I know I would benefit from taper lists that weren't quite so ambitious.

 

The fact that we almost never see people reporting "walking-off" these drugs at the end of their taper unless they've been on them for a very short period of time (or even then?) suggest to me that the taper charts are not adequate. I know people say, well, those people are the one's we DON'T hear from. I personally don't understand using non-existent data as a point of argument, though I do get it as a point of using it as a way to help us feel better. Also, if someone wen't through the months of ashton's tapering and were successful, I think that would give them some incentive to write a success story, but I just don't hear that (or at least not much at all). Regardless of who you interpret the evidence or lack of evidence, ENOUGH people end their taper with so much pain and misery awaiting them that it makes the charts at least worthy of rethinking.

 

I think there should be tapering charts for every one of the commonly used Benzos. Not everyone can crossover, not everyone should cross over. Why isn't there a chart for a direct Klonopin taper? People here do it all the time. Some people have to do it with Xanax. What about charts crossing over to librium? One of my docs was way more willing to have me use that than valium (for whatever reason).

 

Even if the current charts were kept the same with the same caveat that some should go slower, I still think we should think about how to address direct tapering. OR moving to librium.

 

Again, I'm just some dude. But I think this is a goal worth discussing. The charts seem made for a world where you go to a clinic with the most knowledgeable doctor (Ashton) on the planet helping you. They do not seem set up for random granddads and college kids who are doing this with only the support of online message boards. As good as that advice is, it's still too hard.

 

As I said, it's a discussion.

quiet

[[Li...]]

I agree, QQ.  New and expanded taper charts are definitely an idea worth further discussion.

[[Li...]]

Here’s another idea on how we can help ourselves.  On Sept 16, in collaboration with the Alliance for Benzodiazepine Best Practices, the University of Arizona Health Sciences division sponsored a Benzodiazepine Symposium.  One of the speakers, Dr. Steven Wright, issued a call to action to individuals who suffer from what he refers to as “Benzodiazepine Injury Syndrome” to re-engage with members of the medical community work together toward shared goals. 

 

One of the ways we could respond to this call is by viewing the archived symposium.  I’d be willing to bet the sponsors will be keeping track of how many “views” it receives.

 

Here’s the link and directions:

 

https://streaming.biocom.arizona.edu/event/?id=28977

 

Look for the word “Watch” and a small, orange/red button near the top left of the page.  Then, click the button!  As an inducement to view, the first presenter is a benzo survivor.  Her story is incredibly powerful.

[[Qu...]]

I emailed Dr. Wright about this very question. I told him how I had seen ~15 psychiatrists and MDs in the last year to find help just with a taper, with no luck other than horrific suggestions. (All of them rapid). Forget about getting valuable information out of them as professionals. Like going to an oncologist and having them say; I don't know, what do YOU think is wrong with you?

 

I agree with you Libertas that we need to engage. And everyone should absolutely watch the video. There are some great moments, and it's just unbelievably gratifying to have people talk about it as though it were an actual problem.

 

My question to Dr. Wright was how do we engage in the way that he seemed to be asking for; i.e. participation in a clinical setting. Of course many (all?) of us would have prefer to have someone like him as our prescriber if we could. But since we are left with what we have, is it any wonder many of us use them for pills and then manage things on our own.

 

Those of you who have found good prescribers I would encourage you to have them reach out to Dr. Wright, seems like he's interested in gathering data.

[[Li...]]

Good for you, QQ!  I was thinking we might ask as a community for Dr. Wright’s advice on how we can obtain forms and formats of our benzodiazepines we can use for tapering purposes.  He mentioned this need in his presentation, indeed he cited clonazepam as an example of a longer-acting benzodiazepine that does not come in forms/formats that allow gradual reductions, at least not in the U.S. Your thoughts?

[[Qu...]]

I have a call set up with him. I'm happy to ask him any questions members wish to send my way. I'd do it soon though. I'll post this to the other thread as well.

[[Li...]]

You are fighting the good fight both for yourself and others, QQ. Thank you and hats off!  I hope you will let us know what you find out from your conversation with Dr. Wright. 

[[Qu...]]

Hey All,

 

So I had a good chat with Dr. Wright. Very nice man, very accommodating with his time (we spoke for 38 minutes). I will relate what he told me, though, as he kept reminding me, "no one really knows anything." I asked his permission to share this with you, since it was a phone chat and not-official.

 

1) To the question of forms and formats of drugs that would be more useful for tapering, i.e. smaller doses of klonopin. He said the only two options he was aware of were titration and using the services of a compounding pharmacy. Of course he said the best thing would be to switch to Valium, with the understanding that not everyone has that as an option. He also suggested phenobarbital, which surprised me.

 

2) What's the best thing we can do to speed up healing? Much of this will be well-known to many/most of us.

    A) Go slow. Plan on 12-18 months as your starting taper plan, and then adjust up or down for symptoms.

    B) Exercise. If that means walking for 5 minutes, do it. Don't exercise to the point of exhaustion, if you do, divide it by half,  do that for 4-6 

        weeks and then increase again. He was kind of delightfully precise about this. Like exercise and tapering were similar processes.

        up. His exercise suggestion really centered around increasing slowly and to not exercise to the point of exhaustion.

    C) Look into POTS (Postural orthostatic tachycardia). He said if this is a problem for you there are treatments that aren't invasive to the

        CNS. We didn't discuss what those might be since the whole subject was beyond my understanding.

  D) Find a good functional medicine doctor to make sure all your hormones are where they should be. Use bio-identical hormones if 

      indicated.

  E) Mindfulness meditation.

 

3) He said that current research is pre-clinical and that anything treatment-wise is (as things stand now) years on the horizon.

Oh, I also emailed

 

4) There are two theories he brought up as compelling, one on healing and one that I think he believed was potentially more explanatory for long term suffering. Though because my brain is slush, I would just categorize them as "things Dr. Wright thinks are interesting in relation to these questions."

  A) Stephen Porges - Polyvagal Theory

  B) Oxidative Stress - this was at the very end of our conversation, and so rushed. Said this might have something to do with the long term 

      suffering. Mentioned that Stephen LaCorte at BIC had done some writing on this; there is some discussion of this on the forum, none of

      which I understand.

 

5) The power of Big Pharma

    A) When I mentioned the power of big Pharma in preventing enough research into this, Dr Wright said he did not believe that was this principle problem, as the patents had long expired and no one in the industry is afraid of a major lawsuit in the oxycontin territory. We don't have to agree with that interpretation, but that is what he believes. What is more interesting is the reason HE thinks there hasn't been a suitable amount of research: Lack of interest.

 

He said that until the conference in 2017 (I will again reiterate, started, hosted, and run by "patients,") people in the field did not think the question of Benzos was INTERESTING. They thought it was all settled science, and that when they would hear of patients having these bizarre reactions it was easy to dismiss as psychosomatic or coming from some underlying condition. It took hearing from so many sufferers at that conference for him and his (few) colleagues to say, wait a minute, there are A LOT of interesting questions to be asked here. So now that is what they are doing; though again, just a few. But I would say the fact that what we are getting is a direct result of the actions of people hurt by this situation is inspiring. Now, Dr. Wright may be wrong about the pharmaceutical companies interest, I think we've debated that quite a bit on our own, but convincing researches that there are interesting questions to be asked is an area of potential.

 

6) Psychedelics

  A) We got really speculative here, but we did discuss how it was interesting that psychedelics, particularly MDMA are being used in phase three trials to treat PTSD with great success. There's no current way to know if those drugs could have any beneficial effect for people in any stage of recovery. Dr. Wright simply said that the overlap was interesting and deserved consideration. He believes that trauma is a significant part of the benzo experience, whether before (thus leading to SOME people resorting to them as anxiolytics) and/or after, when the mind and body have encountered such a profound trauma that it is indistinguishable (and really is) PTSD. He brought up, without me prompting him, that this is why so many people who heal cannot bring themselves to work as advocates. I know this idea of drugs to treat drugs bothers some people, and I don't think we need to discuss it; but I thought it was interesting that HE found it interesting, and that if nothing else, trauma is central to this whole discussion.

 

Sorry I couldn't find more that would be immediately useful, but such is the state of knowledge. I want to thank Dr. Wright again for his generosity.

 

quiet

 

 

 

 

 

[[Qu...]]

Also,

 

I received an email reply from Dr. Todd Vanderah, another speaker at the conference. He was very gracious and kind with his words of concern. He told me that his work is pre-clinical (I believe this means on rats), and that it is on the "mechanism of addiction and withdrawal." He goes into much greater depth on this in his presentation during the symposium. I would simply say that I contacted two of the people at the conference, one sent me a note and suggested he would speak to his colleagues about how best to find benzowise doctors; the other sent me his phone number and talked to me for quite awhile. So don't be afraid or embarrassed or reluctant to reach out to these people. They are working in a small community where many people in their field do not believe there is any point to their research. I believe (and this is just intuition) that they WANT to hear from us. Maybe not always on the phone, but email these people, tell them your stories. Propose theories. Ask questions.

 

Remember that, as kind as these people are, what got them back into the research was their INTEREST. They are interested in this. And we, and our experiences are DATA. It was said that

[[va...]]

Hey All,

 

So I had a good chat with Dr. Wright. Very nice man, very accommodating with his time (we spoke for 38 minutes). I will relate what he told me, though, as he kept reminding me, "no one really knows anything." I asked his permission to share this with you, since it was a phone chat and not-official.

 

1) To the question of forms and formats of drugs that would be more useful for tapering, i.e. smaller doses of klonopin. He said the only two options he was aware of were titration and using the services of a compounding pharmacy. Of course he said the best thing would be to switch to Valium, with the understanding that not everyone has that as an option. He also suggested phenobarbital, which surprised me.

 

2) What's the best thing we can do to speed up healing? Much of this will be well-known to many/most of us.

    A) Go slow. Plan on 12-18 months as your starting taper plan, and then adjust up or down for symptoms.

    B) Exercise. If that means walking for 5 minutes, do it. Don't exercise to the point of exhaustion, if you do, divide it by half,  do that for 4-6 

        weeks and then increase again. He was kind of delightfully precise about this. Like exercise and tapering were similar processes.

        up. His exercise suggestion really centered around increasing slowly and to not exercise to the point of exhaustion.

    C) Look into POTS (Postural orthostatic tachycardia). He said if this is a problem for you there are treatments that aren't invasive to the

        CNS. We didn't discuss what those might be since the whole subject was beyond my understanding.

  D) Find a good functional medicine doctor to make sure all your hormones are where they should be. Use bio-identical hormones if 

      indicated.

  E) Mindfulness meditation.

 

3) He said that current research is pre-clinical and that anything treatment-wise is (as things stand now) years on the horizon.

Oh, I also emailed

 

4) There are two theories he brought up as compelling, one on healing and one that I think he believed was potentially more explanatory for long term suffering. Though because my brain is slush, I would just categorize them as "things Dr. Wright thinks are interesting in relation to these questions."

  A) Stephen Porges - Polyvagal Theory

  B) Oxidative Stress - this was at the very end of our conversation, and so rushed. Said this might have something to do with the long term 

      suffering. Mentioned that Stephen LaCorte at BIC had done some writing on this; there is some discussion of this on the forum, none of

      which I understand.

 

5) The power of Big Pharma

    A) When I mentioned the power of big Pharma in preventing enough research into this, Dr Wright said he did not believe that was this principle problem, as the patents had long expired and no one in the industry is afraid of a major lawsuit in the oxycontin territory. We don't have to agree with that interpretation, but that is what he believes. What is more interesting is the reason HE thinks there hasn't been a suitable amount of research: Lack of interest.

 

He said that until the conference in 2017 (I will again reiterate, started, hosted, and run by "patients,") people in the field did not think the question of Benzos was INTERESTING. They thought it was all settled science, and that when they would hear of patients having these bizarre reactions it was easy to dismiss as psychosomatic or coming from some underlying condition. It took hearing from so many sufferers at that conference for him and his (few) colleagues to say, wait a minute, there are A LOT of interesting questions to be asked here. So now that is what they are doing; though again, just a few. But I would say the fact that what we are getting is a direct result of the actions of people hurt by this situation is inspiring. Now, Dr. Wright may be wrong about the pharmaceutical companies interest, I think we've debated that quite a bit on our own, but convincing researches that there are interesting questions to be asked is an area of potential.

 

6) Psychedelics

  A) We got really speculative here, but we did discuss how it was interesting that psychedelics, particularly MDMA are being used in phase three trials to treat PTSD with great success. There's no current way to know if those drugs could have any beneficial effect for people in any stage of recovery. Dr. Wright simply said that the overlap was interesting and deserved consideration. He believes that trauma is a significant part of the benzo experience, whether before (thus leading to SOME people resorting to them as anxiolytics) and/or after, when the mind and body have encountered such a profound trauma that it is indistinguishable (and really is) PTSD. He brought up, without me prompting him, that this is why so many people who heal cannot bring themselves to work as advocates. I know this idea of drugs to treat drugs bothers some people, and I don't think we need to discuss it; but I thought it was interesting that HE found it interesting, and that if nothing else, trauma is central to this whole discussion.

 

Sorry I couldn't find more that would be immediately useful, but such is the state of knowledge. I want to thank Dr. Wright again for his generosity.

 

quiet

 

This is so helpful to all of us. THANK YOU.

[[bo...]]

Following

[[es...]]

High five, Quietquiet, I would never have thought it possible to get through to these people, or if they would really listen, if I did. Good for you, for being proactive. Espy

[[Qu...]]

I’m glad people are finding it helpful or at least interesting. I think there are a great many people we could be reaching out to. Maybe not all of them will reply, but some might. As an example: there was recently a thread in the Benzo News section about the Canadian Psychologist  and all around trouble- maker Jordon Peterson who went into rehab (yesterday?) for klonopin dependence. His daughter has her own set of beliefs around diet etc and maintains a sizable web presence and publicly announced his situation. Because they are public figures who have beliefs that many disagree with, they will be met, on and off this sight, with critiques. My suggestion, which you can read at the (currently) bottom of the appropriate thread was that we REACH OUT TO THEM.

 

I emailed the daughter my best wishes, my concerns about her desire  that “this poison get out of him as soon as possible” (not an exact quote), some thoughts on slow tapers and the potential dangers of rehabs, a link to the Ashton Manual, and an invitation to join us here at BB for advice and support. We should do this whenever a public person suffers from these drugs, both because they deserve our help, but also because their platform gives them a unique position to help OTHERS. People don’t listen to politicians or scholars or researches. They listen to fame. This is America, damnit.

 

The same should be true for Chris Cornell’s wife, who, after her husband hung himself after he increased  his ambien use, has begun an anti addiction campaign. But as we know, Benzo problems

Are more complicated than addiction issues. Why not reach out to her? Would it hurt to have people in positions of power who can advocate for this community? And would it not be good for this grieving widow to know more about what happened to her husband and to have a community to commiserate with. It isn’t hard to send an email or a tweet or whatever to a famous person, they are easy to reach.

 

We don’t just have to talk to each other. There is a whole world out there if you are willing.

 

Quiet

[[va...]]

Quiet you're on fire. You're absolutely right, we have to write to these people.

[[To...]]

Just one simple idea - I'd like to see a section of the forum titled something like "Questions for Survivors."  The idea being that people could post questions for those who have recovered. This way benzo survivors could chime in on the question, and posters wouldn't need to ask their questions in individual success story threads. It would probably reduce the number of people starting new threads in the Success Stories section that are merely posing a question. Just an idea.

 

I also really like Challis' idea of a place for benzo injured people to live while, staffed by people who know what's going on.

[[Qu...]]

Wow, I think that is the BEST idea that would require zero money and that we could actually be instituted on the board so we wouldn't need anyone's outside how. Don't know how it would work. Don't know if it's been tried before. I know fliprain had a thread like that that was REALLY successful for a long time. In the meaning you might check it out, it was called "Mentoring - those who are well (or better) reassuring those who struggle."

 

I know its hard to get the healed to come back routinely, but there are some still sticking around. And they'd get a TON of questions. Maybe there could be a question of the week/month? Wonder if Admins had thoughts about this?

[[Me...]]

Only we can save ourselves because apparently, only those who have been in doctor prescribed hell can really report back once we leave it - I'm hoping to be one of those people one day, someone who made it out the other side. I never took any drug in any dosage not prescribed by my doctor but I am treated by the medical community as an addict. I trusted my doctor which was a mistake. I had one problem when I started the prescribed life - migraines - but I now have a whole lot more after 2 decades of one drug after another and finally spending the last five years taking myself off one drug at a time. I am finally down to 6 mg of Valium and I am struggling. I am so very tired. I am lucky to have a supportive spouse but this journey has been a hard one. There have been too many times when the only thing that got me through a day was promising myself I could kill myself the next day. The drugs we were given are vicious killers and the medical profession has never taken responsibility for the lives they have ruined. I'm not sure who I am anymore. Maybe I'll find out.

[[th...]]

Hey All,

 

So I had a good chat with Dr. Wright. Very nice man, very accommodating with his time (we spoke for 38 minutes). I will relate what he told me, though, as he kept reminding me, "no one really knows anything." I asked his permission to share this with you, since it was a phone chat and not-official.

 

1) To the question of forms and formats of drugs that would be more useful for tapering, i.e. smaller doses of klonopin. He said the only two options he was aware of were titration and using the services of a compounding pharmacy. Of course he said the best thing would be to switch to Valium, with the understanding that not everyone has that as an option. He also suggested phenobarbital, which surprised me.

 

2) What's the best thing we can do to speed up healing? Much of this will be well-known to many/most of us.

    A) Go slow. Plan on 12-18 months as your starting taper plan, and then adjust up or down for symptoms.

    B) Exercise. If that means walking for 5 minutes, do it. Don't exercise to the point of exhaustion, if you do, divide it by half,  do that for 4-6 

        weeks and then increase again. He was kind of delightfully precise about this. Like exercise and tapering were similar processes.

        up. His exercise suggestion really centered around increasing slowly and to not exercise to the point of exhaustion.

    C) Look into POTS (Postural orthostatic tachycardia). He said if this is a problem for you there are treatments that aren't invasive to the

        CNS. We didn't discuss what those might be since the whole subject was beyond my understanding.

  D) Find a good functional medicine doctor to make sure all your hormones are where they should be. Use bio-identical hormones if 

      indicated.

  E) Mindfulness meditation.

 

3) He said that current research is pre-clinical and that anything treatment-wise is (as things stand now) years on the horizon.

Oh, I also emailed

 

4) There are two theories he brought up as compelling, one on healing and one that I think he believed was potentially more explanatory for long term suffering. Though because my brain is slush, I would just categorize them as "things Dr. Wright thinks are interesting in relation to these questions."

  A) Stephen Porges - Polyvagal Theory

  B) Oxidative Stress - this was at the very end of our conversation, and so rushed. Said this might have something to do with the long term 

      suffering. Mentioned that Stephen LaCorte at BIC had done some writing on this; there is some discussion of this on the forum, none of

      which I understand.

 

5) The power of Big Pharma

    A) When I mentioned the power of big Pharma in preventing enough research into this, Dr Wright said he did not believe that was this principle problem, as the patents had long expired and no one in the industry is afraid of a major lawsuit in the oxycontin territory. We don't have to agree with that interpretation, but that is what he believes. What is more interesting is the reason HE thinks there hasn't been a suitable amount of research: Lack of interest.

 

He said that until the conference in 2017 (I will again reiterate, started, hosted, and run by "patients,") people in the field did not think the question of Benzos was INTERESTING. They thought it was all settled science, and that when they would hear of patients having these bizarre reactions it was easy to dismiss as psychosomatic or coming from some underlying condition. It took hearing from so many sufferers at that conference for him and his (few) colleagues to say, wait a minute, there are A LOT of interesting questions to be asked here. So now that is what they are doing; though again, just a few. But I would say the fact that what we are getting is a direct result of the actions of people hurt by this situation is inspiring. Now, Dr. Wright may be wrong about the pharmaceutical companies interest, I think we've debated that quite a bit on our own, but convincing researches that there are interesting questions to be asked is an area of potential.

 

6) Psychedelics

  A) We got really speculative here, but we did discuss how it was interesting that psychedelics, particularly MDMA are being used in phase three trials to treat PTSD with great success. There's no current way to know if those drugs could have any beneficial effect for people in any stage of recovery. Dr. Wright simply said that the overlap was interesting and deserved consideration. He believes that trauma is a significant part of the benzo experience, whether before (thus leading to SOME people resorting to them as anxiolytics) and/or after, when the mind and body have encountered such a profound trauma that it is indistinguishable (and really is) PTSD. He brought up, without me prompting him, that this is why so many people who heal cannot bring themselves to work as advocates. I know this idea of drugs to treat drugs bothers some people, and I don't think we need to discuss it; but I thought it was interesting that HE found it interesting, and that if nothing else, trauma is central to this whole discussion.

 

Sorry I couldn't find more that would be immediately useful, but such is the state of knowledge. I want to thank Dr. Wright again for his generosity.

 

quiet

 

Thanks for this!!

[[Qu...]]

MessedUpByRx: This might be a dumb answer. But maybe you ARE finding out who you are? Maybe you are a person who can survive ANYTHING? Maybe when you get out of here you will be like one of those swords they beat and fold and beat and fold, dozens of times, until it's sharper than a razor but just won't break? Imagine taking your ability to endure coming off all these drugs, for all this time, and then putting that to use in the world!

 

6mgs of valium is great accomplishment from being polydrugged. I hope you take it as slow as you need to so that when you are done you can experience some lasting relief. Your wife sounds amazing. It's strange how we can be the unluckiest people on earth, and the luckiest.

 

You say you want to be able to report back after you are done. Can you think of any ways to report now? Maybe that would help you feel even more agency in this process? My local paper just asked me to write a letter to the editor about how hard it is to find a benzowise doctor in my area. Maybe someone who receives that paper, if the editors agree on how I want to write it, and if my mind doesn't go deeper into the hole, will read it and not take that first pill. That's one person saved. Or maybe a doctor or two will reconsider how they treat their patients? How many saved would that be in my community? One person is the whole damn world as far as I'm concerned. What a gift to save a life. If you have the strength, reach out and tell people your story in whatever way you can. Or do something else. Or just hold on and let your family help you through this. There is no wrong answer to survival if it doesn't hurt innocent people.

 

[[Qu...]]

Amen valiumnomore. There's no way it can hurt. It can only help. And it could be that ONE letter that turns the axis of the world. If nothing else, it makes ME feel better to try.

 

Quiet

[[...]]

Just one simple idea - I'd like to see a section of the forum titled something like "Questions for Survivors."  The idea being that people could post questions for those who have recovered. This way benzo survivors could chime in on the question, and posters wouldn't need to ask their questions in individual success story threads. It would probably reduce the number of people starting new threads in the Success Stories section that are merely posing a question. Just an idea.

 

I also really like Challis' idea of a place for benzo injured people to live while, staffed by people who know what's going on.

 

Wow, I think that is the BEST idea that would require zero money and that we could actually be instituted on the board so we wouldn't need anyone's outside how. Don't know how it would work. Don't know if it's been tried before. I know fliprain had a thread like that that was REALLY successful for a long time. In the meaning you might check it out, it was called "Mentoring - those who are well (or better) reassuring those who struggle."

 

I know its hard to get the healed to come back routinely, but there are some still sticking around. And they'd get a TON of questions. Maybe there could be a question of the week/month? Wonder if Admins had thoughts about this?

 

FYI, this idea has been raised before.  Discussion here:

 

Questions for those who are healed? A more positive section to add?

http://www.benzobuddies.org/forum/index.php?topic=212654.0

[[Qu...]]

Old alcoholics NEVER leave AA, the benzo-dependent (usually) flee ASAP. The former still need the support; I guess the later don't. I also think the withdrawal is so traumatic that it is hard to revisit it for some. We really need to talk more about PTSD as a longterm effect of benzo recovery. Jesus we need longterm studies on every aspect of this condition, and it seems like they at least originally stopped at four weeks.

 

All of this was preventable by people paying attention long term. All of it.