Benzodiazepine Withdrawal Symposium Live Stream

[[Qu...]]

One thing I wanted to mention in a little detail was a quality present is some of the presenters we saw. Sometimes it was subtle, sometimes it was clearly stated; that is, the desire to make amends for past mistakes.

 

These horrific choices we are forced into as harmed patients are of such a nature that they should have been addressed by caring physicians and careful researchers years ago. The fact that they weren't is only forgivable if the person was originally acting with the best intentions (and the best available knowledge), is now contrite, and devotes themselves to undoing past damage. I think we saw some excellent examples of that in the symposium last week. I was particularly impressed with Dr. Wright and Dr. Raffa's ability to communicate their sincere self-criticisms without making their presentations about themselves. Also, many of the presenters referred repeatedly to the patient, Carrie Silvernail's, story and used it as a source of credible and moving evidence. They took her seriously. Her story is data. It may not function for them as "proof," but it helps to point the way for them. I believe they would value hearing more of our stories.

 

I don't know what lies in these men's souls, but it seemed to me that what they are undergoing is, at some level, a kind of quest. And to add to that already heavy word I would add a second word that is also loaded with special significance: atonement. That is a remarkable thing to see in another person. How many of us have ever truly, publicly, and with our active working life, attempted to make redress for past errors (even if those errors were based on the best evidence that we had at the time)? The fact that they can do so with a sense of fascination and even joy shows us how powerful it is to be healed, and it gives me hope for what you all will be capable of when you enjoy a similar level of strength.

 

Let's not forget, it was Carrie and her fellow survivors that started this, and who convinced these men to look deeper into what they thought was settled science. And as humane researchers did so because they saw people, people in pain, who wouldn't be silenced. There's a lot in the relationship between these groups to value and to learn from.

 

quiet

[[La...]]

Absolutely beautiful post, QQ. Very thoughtful. I've had similar reflections since watching the Youtube video.

 

I've watched a few videos featuring Dr. Wright over the past few months, and I've been so impressed by his desire to make things better. In what I consider an extraordinary move, he apologized directly for having been part of the problem in, I believe, all of those videos. It touched me deeply to think that there is a doctor who takes this issue seriously and who feels there's work to be done on this front.

 

It was my first time encountering the other professors and doctors, and I have to say that I was thrilled to know that they're interested in this topic and that they want to search for answers. Really, the answers can't come soon enough. For many people, it's already too late, of course.

 

 

[[Qu...]]

Yes, When I first found out this was happening to me I was sure there would be some adjunctive medicines or safer replacement anxiolytics, then I thought, well there must be a bunch of people working on those things or other therapies, then I figured at least there would be some real clinical trials that could provide hope. But what I see so far is pre-clinical studies on rats, literature reviews, papers that talk about what happens in the first few weeks in terms of gaba receptors, and a lot of speculation. My knowledge is limited, but it seems like the current research is centered on “what is happening here” and not on “this is how we solve/ameliorate this problem.”  There was i time when I considered staying on this medication in the hopes that something helpful would come about in the next couple of years; I see no reason for that kind of optimism anymore. Though science and discovery is weird so what do I know. I’d take a stabilizing benzolike chemical that  just didn’t make things worse. There are just no good choices out there.

[[La...]]

What's clear is that the issue is very difficult to study. You can't easily do before-and-after testing on people like us. None of us have had the "before benzos" testing to which we can compare the "during benzos" or "after benzos". Whether rats provide a useful replacement for humans is very unclear to me, but personally, I think we're very different than rats! As was mentioned during the symposium, we're the experiment. We are currently trying things and doing things and sharing information about things that may provide answers to others. But it's far from ideal.

 

Obviously, we're all genetically different, so that adds a huge degree of the unknown. There may be different solutions for different people, and that, obviously, complicates the picture.

 

 

 

 

[[Qu...]]

So true,

There’s my usual carping below, and then a question if anyone has the time.

 

Unfortunately what we are able to try as the “experiment” is rather limited. This diet, that supplement, this SSRI, that snri. Maybe flumazel, maybe that NAD+ business. It’s not like we can mess around with stem cells or CRISPR, or any  kind of advanced scanning techniques like they might use for Alzheimer’s or CTE.

 

I really hated that line during the presentation, it was the one that stuck out to me as being weirdly insensitive and also not really accurate. I mean, I get it, but it’s not like anyone is actually collecting any of this “data” in a systematic way or sending out questionnaires or putting much of this to use  (other than us). It felt to me like “you are the experiment, but we don’t have the resources to see what is going on in That experiment, or to record that data, or follow up with any of you. We’re still at the rat stage.” Which isn’t the presenters fault. I wonder where the crossover from our experiment is with those conducting research?if I heard them correctly, it’s in the anecdotal accounts. As you say, far from ideal. But no one is going to put the funding into this that they are going to instantly pour into the sudden problem of “vaping.”  Humans can be smart but where we are dumb we are dumb in the same ways over and over again. Who could have imagined that taking cigarettes and adding new technology to it would turn out bad.

 

I feel less like evidence in an experiment and more like evidence in a crime. I’m still in that stage of grief where you can’t accept the facts in front of you.

 

Any thoughts on what would be the most important first step if one had unlimited research/clinical funding?

 

 

[[...]]

What's clear is that the issue is very difficult to study. You can't easily do before-and-after testing on people like us. None of us have had the "before benzos" testing to which we can compare the "during benzos" or "after benzos". Whether rats provide a useful replacement for humans is very unclear to me, but personally, I think we're very different than rats! As was mentioned during the symposium, we're the experiment. We are currently trying things and doing things and sharing information about things that may provide answers to others. But it's far from ideal.

 

Obviously, we're all genetically different, so that adds a huge degree of the unknown. There may be different solutions for different people, and that, obviously, complicates the picture.

 

Made me laugh out loud  :laugh:   Now, what makes you think that, Lap?

 

My favorite talk was that of Robert Raffa, clearly stating that - despite all the (Gabaa) studies thus far - the bottom line is, "We simply know nothing".  I was least impressed with Todd Vanderah and his mice and whatnot.  And the Q&A I thought was very good, many of the questions raised were in line with my thinking as well.

 

Quiet, I agree with your last post re a questionnaire and data collection.  I'm no scientist, far from it, but to my lay mind, that would be the obvious place to start, instead of playing around with mice.  I mean, was that particular mouse experiment even replicated a couple of times, who knows?  And I think there would need to be a couple hundred or so data points in order to even begin to try and extrapolate any useful info.  It's a very complex "syndrome" with no two people alike.

[[La...]]

What's clear is that the issue is very difficult to study. You can't easily do before-and-after testing on people like us. None of us have had the "before benzos" testing to which we can compare the "during benzos" or "after benzos". Whether rats provide a useful replacement for humans is very unclear to me, but personally, I think we're very different than rats! As was mentioned during the symposium, we're the experiment. We are currently trying things and doing things and sharing information about things that may provide answers to others. But it's far from ideal.

 

Obviously, we're all genetically different, so that adds a huge degree of the unknown. There may be different solutions for different people, and that, obviously, complicates the picture.

 

Made me laugh out loud  :laugh:   Now, what makes you think that, Lap?

 

My favorite talk was that of Robert Raffa, clearly stating that - despite all the (Gabaa) studies thus far - the bottom line is, "We simply know nothing".  I was least impressed with Todd Vanderah and his mice and whatnot.  And the Q&A I thought was very good, many of the questions raised were in line with my thinking as well.

 

Quiet, I agree with your last post re a questionnaire and data collection.  I'm no scientist, far from it, but to my lay mind, that would be the obvious place to start, instead of playing around with mice.  I mean, was that particular mouse experiment even replicated a couple of times, who knows?  And I think there would need to be a couple hundred or so data points in order to even begin to try and extrapolate any useful info.  It's a very complex "syndrome" with no two people alike.

 

Well, ya now, my dear abcd, some days, I'm not even sure. All I know is that I can't find my tail, so I think I'm not a rat. I s'pose I could be a tail-less rat, although I don't seem to have much in the way of fur either. But then again, I could be a tail-less, fur-less rat....

 

Oy.

 

I'm having a rough day today, if you couldn't tell. I'd just like some answers. I did find the rat study disappointing as well, but I had to remind myself that this is how some researchers work.

 

Just to clarify, I believe Dr. Raffa said that they couldn't say for sure what happens beyond the four-week point.

 

A little while later...

 

I've just re-watched the first few minutes, and indeed, Dr. Raffa says that we know a lot about what happens up to the four-week point, but beyond that, we know very little.

[[Ba...]]

I would be happy to tell my story, if you want me to write it all so it's organized and professional I can. I work in the medical profession. I am a nurse.

 

I have had 4 heart attacks (first one on my nursing graduation day). The last one, I was finally at a good teaching hospital and had a cardiologist (like Dr. House) who had his disciples following him around. He wasn't letting me leave until he figured out why. After multiple cardiac cath's and echo's I was told there is absolutely NOTHING wrong with my cardiovascular system. No arteriosclerosis, no athroscelerosis. The couldn't put stents in, because everything was patent. He said essentially what is happening is the anxiety is causing my veins and arteries supplying blood to my heart spasm causing the heart attack. Because of this I also had a blood clot in my left ventricle and had to inject myself daily with Lovenox (blood thinner) and go to the hospital 2x week to have my PT/INR tested.

 

All of this while taking my xanax as prescribed!

 

He makes me carry around a laminated copy of my EKG showing that my horribly abnormal heart rhythm is NORMAL for me. One look at the EKG and they rush me right into surgery. How can this be if xanax is supposed to be calming me!?? It's got to be tolerance and interpose withdrawals!!

 

I have a lot more I can add, but just giving you an idea.

 

Faith, wow, that is terrible!  Do you have mostly physical symptoms (I gather), not the psych ones?

 

So what foods do you avoid?

 

Oh and was wondering if you are on any other meds or just the xanax, if I may ask? 

 

thanks.

 

 

[[Ba...]]

Who sponsors this symposium?  Is it U of Az or did some patron person finance things, or did the drs. just decide on their own they want to participate, or what?  I am just curious.

 

Nice that a few drs. are interested in the subject!

[[fa...]]

BarbaraAve,

 

No my symptoms were not just physical. My anxiety over the years while on prescribed xanax had increased much much more than my original anxiety. My blood pressure for past 15 years always sky high (it has been much better since starting my taper). Just thinking about something that I would perceive as stressful I would actually feel an immediate rush... it felt like acid in my veins, heart pounding, racing thoughts, etc. Oh and the cog fog  I would forget my phone number, get lost in the mall and cry, couldn't find words and stare at the same paragraph for 5 mins and have no clue what I read.i would panic if I had to go to the grocery store, so I became more of a hermit.

 

I avoid sugars, gluten, most fruit, lactose.

 

Nope, not on any other meds except for xanax (alprazolam). I was taking a lot of vitamins and supplements though, but cut them all out when I started the taper. I have just recently added Lysine..I was scared to but I did and I personally have noticed it helps me a lot! 

[[Ba...]]

I am wondering if anyone took down or has Dr Robert B. Raffa's email address or contact?  I thought would drop him a line but don't see  a contact.

 

Thank you.

[[Li...]]

Good news! The Alliance for Benzodiazepine Best Practices has posted the timeline for the September 16, 2019 “Benzodiazepine Withdrawal Symposium.”  You can click on the time to go directly to the segment of interest. A link is also included to the symposium agenda, abstracts, and presentations.  Here’s the URL:

 

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

 

(You may have to scroll down the page to find the section about the Symposium with the above links.)

 

BarbaraAve:  Re your question about how to contact Dr. Raffa ...

 

Dr. Raffa’s segment was quite interesting, wasn’t it? Although he is an adjunct professor at the University of Arizona, a quick search failed to yield his email address there.  However, he is also the Chief Scientific Officer for Neumentum.  You can learn more about his background here:

 

http://neumentum.com/about/leadership/

 

The top-level navigation bar at the above page includes a “Contact Us” link.  You could try sending him a communication using that.  Or you could try contacting him via his Linkedin profile.

[[Ba...]]

Thank you!

Hey have a line on him thru the U of Az, I think.... not a member of linked in.

 

I realize there are no answers, since, uh, no research has been done, basically.  But can't hurt to make contact and ask a thing or two.

 

At least he will know I watched it!  I'm sure those interested want to know we are out here...