Benzodiazepine Withdrawal Symposium Live Stream

[[no...]]

whew just finished watching it...that was long!

 

i hope somebody will edit it down, take out the silent parts between speakers, and make some short sections containing the useful data with the graphs and stuff. i really found it hard to stay awake. but there were small segments that were very interesting and useful to pass on to prescribers, etc. they need a Cliff notes version of that symposium. hopefully they will honor their word, i forget which dude said they were planning on it.

 

everyone pretty much danced around saying benzos are bad and we need to help people come off of them safely! they kept saying how benzos were a super helpful good drug for future use... maybe there was some pressure beforehand to say that so they wouldn't get in trouble with the big abc organizations like FDA, AMA,APA etc. i dunno. they were very super carefully wording things so that nobody who is pro-benzos would take offense.

 

i wish they would've focused more on  the actual stories of the victims, how it devastates the whole life and family and friends are affected, like they had ONE lady telling her story. really? now, i am glad she was there, but she really showed little emotion except at the end when she said her husband was there every step of the way. it would have been more engaging i think if they showed more emotions, if they had more than one lady up there telling it like it really is for the rest of us. like if us BB's were telling our stories, man i bet it would've gotten a lot more attention. kinda sad near the end when they panned to the audience and it was like 20 people. shows how much interest there is in spreading the info and getting us some help.

 

this is all my opinion so feel free to ignore it or attack it, it doesn't matter to me. just saying it like it is (for me).

[[Qu...]]

I'm just able to watch it now, but I want to highlight one thing, forgive my fast typing:

 

Dr. Raffa talked about how PATIENTS started and ran the last symposium in Oregon in 2017. That the patients ran it, funded it, did it all. Invited the speakers, and that the researchers who were there were initially quite skeptical. They there were “surprised” “and shocked.” This is amazing. This shows the power of patient power. Dr. Rafa and others who were there then went on to commit to more research, which is what he says they will be talking about during this symposium. I am VERY impressed by the people who ran that symposium in Bend, Oregon.

[[no...]]

I'm just able to watch it now, but I want to highlight one thing, forgive my fast typing:

 

Dr. Raffa talked about how PATIENTS started and ran the last symposium in Oregon in 2017. That the patients ran it, funded it, did it all. Invited the speakers, and that the researchers who were there were initially quite skeptical. They there were “surprised” “and shocked.” This is amazing. This shows the power of patient power. Dr. Rafa and others who were there then went on to commit to more research, which is what he says they will be talking about during this symposium. I am VERY impressed by the people who ran that symposium in Bend, Oregon.

 

yeah that very first part where they said that and showed a slide of the 2017 one was good. hopefully that will be one of the sound bytes in the lisa ling show. and the infographs with explanations parts...i just needs a really good editor

[[Fr...]]

Could someone post the link if we can go back and view it. I wanna see this.

[[th...]]

Could someone post the link if we can go back and view it. I wanna see this.

 

The link is in the first post of this thread.

[[Qu...]]

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

 

Click on the small button near the top left that is orange/red and above it has the word Watch. It's easy to miss.

[[Ba...]]

Thanks for telling us about this.  i can't view anything in FFox.  Nothing even loads tho it says I am watching it.

 

So is anyone doing any research now??  i would go anywhere and be a guinea pig, even.

[[Bl...]]

Thanks for telling us about this.  i can't view anything in FFox.  Nothing even loads tho it says I am watching it.

 

So is anyone doing any research now?? i would go anywhere and be a guinea pig, even.

 

I watched only the first hour...will be sure to finish it later as it is getting near bedtime where I live(whenever...bedtime is LOL/insomnia is my nemesis).

 

My short term memory is not the best....but I will do my best to express some of what I can recall from the first hour of the symposium and how it impacted me as I watched it tonight.

 

BarbaraAve....One of the speakers said WE have been the guinea pigs because as a group we have not been followed to see how these drugs act on the human body beyond the 4 weeks that was initially researched.

 

The benzo recovery speaker did an excellent job in explaining her nightmare with these drugs. She really suffered! And still is recovering. I felt she put her ALL into getting the point across to the audience as to how this drug affected her. And I also feel that it could not have been expressed a whole lot better. Just my opinion.

 

The first hour of this Benzodiazepine Withdrawal Symposium has represented this tragedy in a very well rounded out way. The two expert (in their fields) speakers articulated what they know so far on this subject, in an easy to follow manner. It did move a bit fast with the second speaker(Italian last name I think)....but he does an EXCELLENT job in stating what he has come to understand as regards the mechanism at work with these drugs.

 

Again, I feel the first two speakers did a great job and I personally want to say thank you to them. I doubt they will see this post.

 

The woman who gave her personal experience with these drugs had me in tears more than once. I do cry easily as a rule, if it is seriously touching. And when it hits me that way...it makes my heart literally ache. :'(

 

I want to thank her as well for making it to the symposium and doing a GREAT job in delivering this important message/information.

[[Ba...]]

BlueRose,

Thx for the summary since have had no luck viewing it.

 

Did they address at all how people try to come off these things... taper, taking other drugs to cover and taper, meds to sleep and be functional or anything at all?

Yes, there is a generation (me) who were given these things for decades and told they were safe and we needed to take them.

No other drugs (legal, illegal) or addiction was involved at all... and here I am after decades on them.

I am wondering if any of these drs. might be worth contacting vs. local ones who are of the try this, try that variety.  Or really maybe nothing is known and try this, try that is the best you can expect?

 

So I was a guinea pig but am willing to be another one and do anything as really my life has lost meaning-- I am that bad at this point.

Feel free to pm me if you have any more details and thank you again.

 

 

[[Li...]]

Bumping this to encourage all members of the community to view this video.  If nothing else it will send a message to the sponsors that there are indeed people out here in the world who care about the work they are doing.  (Unfortunately, the symposium was sparsely attended “on ground” at least until the break at 2:08.  I counted a maximum of 25.)

 

I watched the first part last night and plan to watch the rest today.  I will also share my notes if anyone is interested.

[[...]]

I'm still watching it bit by bit but, yes, to see only ~20 people in the audience was terribly disappointing.  The Q&A at the end, I thought was very good.  Will take me a while to get through 4.5 hours but very interested in feedback/notes from others.

[[Qu...]]

I watched it all and have many thoughts; agree that the q&A was very interesting, though I wish they hadn't gotten so bogged down in definitions of addiction (though I think they talked about it in intelligent and compassionate ways). I especially liked the discussion on trauma.

 

 

BarbaraAve: to answer your question. The third speaker, Steven Wright, spoke at some length on the question of tapering. I want to watch some parts of this again. No one really addressed potential aids for symptom reduction or future therapies (correct me please folks if my weak brain missed this.

 

[[Li...]]

Dr. Wright indicated that findings re: translator protein involvement in w/d might have potential for future therapies.

[[Qu...]]

Libertas,

 

Is there a way you could describe what that means in terms a dummy like me might understand? It's cool if its just a complicated thing that can't be boiled down.

 

Adam

[[Qu...]]

I might get a moment or two of Dr. Wright's time today or tomorrow, so if anyone has a real burning question let me know (asap). No promises, it's a very informal thing right now.

[[La...]]

My biggest question is whether there's something we can do to speed up healing. Are there things we should or should not be doing in order to help our brains readjust?

[[no...]]

My biggest question is whether there's something we can do to speed up healing. Are there things we should or should not be doing in order to help our brains readjust?

 

EXACTAMUNDO!

[[...]]

Were you able to get it to play, Lap?  I think you'd find it very interesting.

[[La...]]

Nope. I guess I don't have whatever program is needed to see it. I'm very hesitant to download anything onto my computer at this point. I'll just have to get the info second-hand from all of you lovely people!

[[th...]]

Nope. I guess I don't have whatever program is needed to see it. I'm very hesitant to download anything onto my computer at this point. I'll just have to get the info second-hand from all of you lovely people!

 

Did you try a different browser?

[[th...]]

My biggest question is whether there's something we can do to speed up healing. Are there things we should or should not be doing in order to help our brains readjust?

 

This is the question... please ask.

[[Ba...]]

Yes I downloaded a flash update and still can't view.

I want to know the same..  what is best approach off and/or do some stay on, esp elderly on for decades?  And what can help if anything?

[[Li...]]

I might get a moment or two of Dr. Wright's time today or tomorrow, so if anyone has a real burning question let me know (asap). No promises, it's a very informal thing right now.

Thank you!  My question is:

 

In Dr. Wright’s presentation at the Symposium he noted that clonazepam is not available in forms/strengths that can be used to make gradual reductions in dose.  He also noted that patients have had to resort to practices (e.g. preparing homemade liquids) that have not been studied and are not FDA approved to taper this particular benzodiazepine.

 

Can Dr. Wright give us “leads” re: people/places to contact about getting a formulation of clonazepam that can be used to make gradual reductions in dose?  Such formulations are available in other countries (e.g. oral solutions in the UK, New Zealand, Australia) but not in the U.S.

[[no...]]

I might get a moment or two of Dr. Wright's time today or tomorrow, so if anyone has a real burning question let me know (asap). No promises, it's a very informal thing right now.

 

i want to know the same thing as thinkstopstink Lapis and Libertas asked.

 

(although i already make my own solution of cloanzepam with propylene glycol solvent and distilled water for my DLMT...it WOULD be really nice if they made clonazepam in smaller dosages than 0.5mg tablets.)

[[th...]]

I might get a moment or two of Dr. Wright's time today or tomorrow, so if anyone has a real burning question let me know (asap). No promises, it's a very informal thing right now.

Thank you!  My question is:

 

In Dr. Wright’s presentation at the Symposium he noted that clonazepam is not available in forms/strengths that can be used to make gradual reductions in dose.  He also noted that patients have had to resort to practices (e.g. preparing homemade liquids) that have not been studied and are not FDA approved to taper this particular benzodiazepine.

 

Can Dr. Wright give us “leads” re: people/places to contact about getting a formulation of clonazepam that can be used to make gradual reductions in dose?  Such formulations are available in other countries (e.g. oral solutions in the UK, New Zealand, Australia) but not in the U.S.

 

I think you might be able to have a compounding pharmacy make you a solution, but I don't think it will be covered by insurance.