Benzodiazepine Withdrawal Symposium Live Stream

[[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.

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.

 

that's true they can make a solution but it's way cheaper to make your own, plus that way you are always the same compounder, so you know your methods are consistent, and you're less likely to get errrors in the batches... once you get the math. but it would still be nice if they made clonazepam in smaller dose tabs...i mean, .5mg clonazepam=10valiums! that's ridiculous.  seems like they don't want people to come off.

[[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.

 

that's true they can make a solution but it's way cheaper to make your own, plus that way you are always the same compounder, so you know your methods are consistent, and you're less likely to get errrors in the batches... once you get the math. but it would still be nice if they made clonazepam in smaller dose tabs...i mean, .5mg clonazepam=10valiums! that's ridiculous.  seems like they don't want people to come off.

 

Yeah, that's why the shift to the longer acting Valium. You can get 2mg tabs.

[[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.

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.

 

that's true they can make a solution but it's way cheaper to make your own, plus that way you are always the same compounder, so you know your methods are consistent, and you're less likely to get errrors in the batches... once you get the math. but it would still be nice if they made clonazepam in smaller dose tabs...i mean, .5mg clonazepam=10valiums! that's ridiculous.  seems like they don't want people to come off.

 

Yeah, that's why the shift to the longer acting Valium. You can get 2mg tabs.

 

ohhhh nooo, no thank you. i heard about the depression from valium and the switchover not taking so great for a lot of people. my body is used to clonazepam and that's  what it's gonna come off of...very slowly.  i don't have any issues making a solution to DLMT it. did have an issue with using alcohol as the solvent, but when i switched to propylene glycol, no issues whatsoever. again, too many people said they had problems with alcohol but i didn't listen. learned the hard way. well, lots more people have issues switching to valium instead of their current benzo, and this time i'm gonna listen. hopefully avoid having to learn the hard way this time.

[[va...]]

Following. I couldn't watch it live so waiting to see if someone posts the video when it's ready.

[[Ba...]]

Think it is up on youtube now.

 

I watched a lot and wondering if any of presenters might be reached fo recommendations on, er anything?  Wonder if they might know local drs etc. near me?

 

But mostly they are saying they don't know how they work which is not heartening to those of us really suffering.

 

Oh guess one speaker said carbazemide might help and mentioned gabapentin (that would be lyrica as well) but said that could b the one down the line that is a problem again.

But they just don't know as no research on this stuff.

So at first I was excited about this but now am depressed.

[[La...]]

It looks like the Youtube video is here:

 

 

 

[[Ba...]]

Yes there was some mention the U of Az site could not play properly so someone put it up on youtube which is great.  Let's give it lots of thumbs ups and comments!

Oh one speaker mentioned carbazemide (sp?), which is the drug used in that German study of how to get people off.  Anyone tried that one?  Is it a mood stabilizer?

Just curious.  thx

[[Li...]]

Oh one speaker mentioned carbazemide (sp?), which is the drug used in that German study of how to get people off.  Anyone tried that one?  Is it a mood stabilizer?

We should double-check but I believe the drug mentioned was carbamazepine (brand name Tegretol). It’s an anticonvulsant.

[[va...]]

https://www.rxlist.com/epilepsy_slideshow_pictures/article.htm

 

It's also an antiepileptic.

[[no...]]

copied from fb:

 

I downloaded an exact copy of the September 16, 2019 University of Arizona Health Sciences Benzodiazepine Withdrawal Symposium. People were having issues with the video not playing correctly at the original link so I reposted it on youtube so everyone can watch it.

 

 

Thanks to Jim Pavelec for posting the original link.

 

"Here is the video from the Benzo symposium at Arizona University. These are some of the only doctors currently doing research on benzos. It’s definitely worth a watch."

[[Qu...]]

I spoke with Dr. Wright and received an email from Dr. Vanderah (both presenters at the conference).

 

Here's a link to my report of their responses. I started getting confused going back and forth from threads with my dumb brain.

 

http://www.benzobuddies.org/forum/index.php?topic=229012.30

 

[[La...]]

Great work, QQ! It's amazing to know that there are people interested in studying this issue and helping to answer some of the many, many questions we all have. Good for you to take the initiative of contacting Dr. Wright. And thank you for sharing your conversation with us!

[[no...]]

 

youtube so everyone that couldn't view it before can see it now.

 

also makes it easy to use timestamps to note particular points for discussion

[[Bl...]]

 

youtube so everyone that couldn't view it before can see it now.

 

also makes it easy to use timestamps to note particular points for discussion

 

Thank you nomoredrugs....I love it when it's easy to fast forward or rewind right to the exact point of interest. How we survived without these things before is beyond me. I just don't have the time like I used to...LOL.

[[no...]]

 

youtube so everyone that couldn't view it before can see it now.

 

also makes it easy to use timestamps to note particular points for discussion

 

Thank you nomoredrugs....I love it when it's easy to fast forward or rewind right to the exact point of interest. How we survived without these things before is beyond me. I just don't have the time like I used to...LOL.

 

hi BlueRose

 

you're welcome, i got it from some group on facebook, i like being ablie to do that too, like you said. technology has its perks doesn't it?  everything feels like it's speeding up, less time in a day to accomplish things...

[[Qu...]]

I want to reiterate my earlier suggestion about reaching out to these speakers. The two I contacted so far both responded the same day.

 

Even if it's just to encourage them in their work. All of them work for universities/initiatives so have public emails. Ask them who else you can contact. Ask questions, propose solutions. Tell them your story. It's not like cold calling someone where you are really bothering them. If they don't want to hear from you they'll just delete the email! But my sense is that they are working in a small community and they feel validated when people show an interest. If you were working on something, wouldn't it give you a sense of urgency and meaning if people routinely told you how important your work was to them?

 

Here's the link to their names and affiliations. Emails are easy to find with a little googling.

 

https://medicine.arizona.edu/benzodiazepine-withdrawal-symposium

[[La...]]

I'm still making my way through the Youtube video and am very grateful I can see it in this format. I'm just watching it in chunks, since there's lots to take in. So far, I've been quite impressed. However, I realize that there's little solid information on certain aspects of this problem -- especially how to help those of us who are years out and still dealing with horrible symptoms (e.g. me).

[[fa...]]

Half way done watching. Thanks for sharing. I was a little disappointed there were so few people in attendance. I would have been happy to go and tell my story. I am sad there was only one person to speak of what we go through 

[[Qu...]]

They had 3 others invited, and they all had to cancel because of their symptoms. I wonder if they considered reading letters from them, or Skyping them in, or putting empty chairs to mark where they could have been if they hadn't been so badly injured, or any number of things. But generally, sobriety rules at these functions.

[[La...]]

Yes, I, too, would have appreciated Skype hook-ups with the other benzo-affected people. As well, for me, it was concerning to see all those empty spaces. But because a video was made available, those who could not be there in person could watch the event after-the-fact. Let's hope it gets seen widely.

[[Qu...]]

When I talked to dr wright I can’t remember if I mentioned this, but we certainly can before the “next” such meeting. There are quite a few people on this board that are easy to contact that would have flown out that day. I would have. It’s. It like they lost the last three survivors. From

What I understood they wanted people who had worked in the medical profession, and I assume they wanted to “vet” them in some way. But they should have had backups. We should have our own YouTube channel where a person tells their story, one a week.

 

 

[[pf...]]

Hi everybody! I'm the one who put the symposium video on youtube (

) and I'd like to put more info under the video in addition to what's already there. (John Blocker is not my real name btw)

 

I have more potential info to be added from here: https://heart.arizona.edu/event/2019/benzodiazepine-withdrawal-symposium

 

I think the entries with an asterisk(*) aren't on the video. The times listed are not the times in the actual video and I would like some verification before I add anything else. Also, if anyone has contact info for these doctors I'll add that too. Any other info to add would be appreciated.

 

*Noon - 12:30 | Greetings and Light Refreshments

12:30 - 12:35 | Welcome

12:35 - 12:45 | Introduction to the program — Robert B. Raffa, PhD

12:45 - 1:00 | A patient’s story — Carrie Silvernail, RN

*1:00 - 1:15 | A patient’s story — Speaker: TBA

1:15 - 1:45 |The time has come the walrus said, to speak of many things… — Robert B. Raffa, PhD

1:45 - 2:15 | Why, sometimes I've believed as many as six impossible things before breakfast — Joseph V. Pergolizzi Jr, MD

2:15 – 2:45 | It’s no use going back to yesterday because I was a different person then — Steven Wright, MD

2:45 - 3:15 | BREAK

3:15 – 3:45 | Curiouser and curiouser — Todd W. Vanderah, PhD

3:45 - 4:00 | Aperçu — Robert B. Raffa, PhD

4:00 - 4:30 | Question & Answer Period

*4:30 - 6:00 | Dinner and panel discussion | By invitation only

[[Qu...]]

There are more symposia scheduled. Not sure if the material will be the same (there's a note that suggests that, but it's kind of ambiguous).

 

You can find the list at:

 

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

 

It's on the right side of the page, about midway down.

 

quiet

[[pf...]]

There are more symposia scheduled. Not sure if the material will be the same (there's a note that suggests that, but it's kind of ambiguous).

Thanks. If there are any more to get I'll put them on youtube or wherever I have to put them so they won't get taken down.

[[fa...]]

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.