FREE 10/28 Benzodiazepine-Induced Brain Injury: The Hidden Prescription Epidemic

[[Pa...]]

 

Your experience and that of your friends is just one segment of the population, just as my and pianogirls experience of complete recovery after a cold turkey and taper respectively, is ours.  Anecdotal evidence is just that and while you believe no one can recover after tapering from benzodiazepines, I believe they can and we have hundreds of success stories attesting to this. 

 

Stating this " Will the panel of experts please address the issues related to the severe reduced cognitive and physical functionality of patients who taper and cease using benzos? " shows your own bias.

 

The evidence suggests that most people will recover relatively quickly (<18 months), some people will recover after many years, and some people will never recover. I suppose you can say to a person that is 12 years out "well, you'll probably recover in another year or two", but that's just a supposition. And if that person drops dead for whatever reason the next day, they never recovered. Some of the time scales of the people in protracted are long enough that some people will certainly pass away for whatever reason without ever knowing what normal life is again.

 

Your experience of a relatively quick recovery is as you admit just one segment of the population as well. Thankfully the larger segment. But you are just as biased as anyone else by your experience.

 

Nathan Arizona,

 

I have you to thank for my education on those who are protracted, you've enlightened me to the pain you and those like you endure.  When I was first on the forum in 2007 there were members who claimed symptoms years out and I couldn't recognize them because of my 'bias', their experience was too far away from the accepted recovery timelines and frankly, I didn't believe them.  But when I returned it was you who helped me understand that not acknowledging you was the same as the medical establishment not acknowledging me and I realized how wrong I was.  I want you to know I see you and am truly sorry for your pain.

 

When it comes to people reinstating, I don't judge this decision because I understand how painful and personal it is.  There are times I'll try to discourage this when I sense a member is just saying it in a cry for help but for those who are truly at the end of their rope, I wish them well and hope for the best.  There was a member who contributed a great deal to the forum who came back to let us know she had to reinstate for medical reasons and the backlash was unfortunate, but you'll find I've defended this person because a decision like this isn't an easy one.

 

What I have a problem with is a member who has decided to reinstate and is living happily ever after on the drug still frequent the forum to extol the personal benefits of doing this.  A person who has actively discouraged members from tapering off the drug.  A person who lurks in the shadows reading what some team members say looking to call them out for the slightest what they consider to be a misrepresentation of the facts. 

 

It makes me wonder why a person like that would remain on a benzodiazepine withdrawal support forum when instead they, if they were truly passionate about the subject, could start their own forum?  A person like this who has the obvious intellect and financial resources could get their message out instead of disrupting this forum and discouraging those who want to be free of these drugs?

 

Nathan, you have my utmost respect, your posts are painful for me to read but I read every one because I learn so much from them.  I'm sorry to use your post to highlight the intent of my previous post but I didn't want you to think I in any way discount your experience.

 

Pamster

[[pi...]]

Just as there are instances like yours where the decision to reinstate worked for you, there are many others where that was not the case. Additionally, there are many people, myself included, who suffered cognitive decline, memory issues and balance problems while taking benzos.  Of course these symptoms did persist and even increase after my jump off but once healed they disappeared completely. In fact, I believe my ability to concentrate increased to a higher level than before I was put on benzos. This focus I had helped me have one of the best performances of my adult life. This occurred 2 years off benzos.

 

My children were also very successful in school, honors students with many advanced degrees but I really don't take credit for it, it goes to them. They did the work.

 

pianogirl

 

_{edit: typo}

 

I'm very happy that you recovered so relatively quickly. But some of us are not so lucky. Believe me when I tell you, you can not image what it's like going on year after year with little or no progress. The daily grind of getting up every day knowing that it will be the same horror show as the day before.

 

You may think you can understand it, but you can't. Until you watch years four, five, and six roll by while you are stuck in the same wretched state, this is just an abstraction to you.  As every year goes by, your hope of getting better becomes dimmer and dimmer, till one day it's not there at all.

 

It's like a waterfall beating on a stone. No matter how strong the stone, eventually it gets worn away.

 

It's a hell of a thing to decide to go back on the poison that put you in this place. But at some point you just can't stand living like this anymore. I don't fault anyone that's made that decision.

 

Nathan,

 

My heart goes out to all those who continue to suffer the effects of benzo withdrawal years out.  I will support anyone's decision in term of reinstatement, each person must choose what is best for their unique situation.  I am not faulting anyone for making the choice to continue taking a benzo or reinstating.

 

As Pamster so eloquently stated, I also have issues with someone whose sole reason for being on the forum appears to be to validate their choice of reinstatement. Why do they need this? If life is wonderful, career successful, family happy, why even be on a benzo withdrawal support forum?  It is not our bailiwick, nor is it of our members, to discourage people from withdrawing from benzos.

 

I am well, I am busy and active and many days I can barely find a spare moment to log onto the forum.  However, I try as much as possible to be here, for one reason.  This forum saved me and I want others to receive the same solid information and support that I did. The benzo/dependency/withdrawal problem is not going away and this forum is one of the few places for people to go to so they are not alone in what can be a challenging process.

[[Ki...]]

 

Nathan Arizona,

 

I have you to thank for my education on those who are protracted, you've enlightened me to the pain you and those like you endure.  When I was first on the forum in 2007 there were members who claimed symptoms years out and I couldn't recognize them because of my 'bias', their experience was too far away from the accepted recovery timelines and frankly, I didn't believe them.  But when I returned it was you who helped me understand that not acknowledging you was the same as the medical establishment not acknowledging me and I realized how wrong I was.  I want you to know I see you and am truly sorry for your pain.

 

Nathan, you have my utmost respect, your posts are painful for me to read but I read every one because I learn so much from them.  I'm sorry to use your post to highlight the intent of my previous post but I didn't want you to think I in any way discount your experience.

 

Pamster

 

As a protracted person I have always valued and read so many Nathans posts over the years however  its lovely to see and hear your words Pamster as I think they  could  also help  many whom dont understand or cant relate, or even entertain the thoughts of long term protraction let alone understand it.     

 

So it is great read/see your words here on the forum, that clearly state these misunderstandings and wish more people could  see them to help them understand and become more educated also.

 

Thank you so much  Pamster 

[[Li...]]

Only one more day to sign up ....

 

October 28th at 8:30-9:45 am Mountain Daylight Time (7:30-8:45 am Pacific, 9:30-10:45 am Central, 10:30-11:45 am Eastern) the Colorado Consortium’s 2021 Annual Meeting is hosting a free session on Zoom entitled Benzodiazepine-Induced Brain Injury: The Hidden Prescription Epidemic. Questions should be directed to info@corxconsortium.org.

 

Presenters:

 

Nicole Lamberson, PA, Benzodiazepine Information Coalition's Medical Advisory Board

 

John Staight, patient advocate

 

Alexis Ritvo, MD, Colorado Consortium Benzodiazepine Action Work Group co-chair

 

D.E. Foster, Benzo Free Podcast, Easing Anxiety, Colorado Consortium Benzodiazepine Action Work Group co-chair

 

Moderator: Jamie Feld, MPH

 

Session Description:

 

There is a growing crisis of patient harm from prescribed benzodiazepines, a class of medications traditionally prescribed for anxiety, sleep and anesthesia.

 

While benzodiazepines have some limited indications, they are often prescribed in the absence of adequate research and for far longer than the recommended time limitation of 2-4 weeks.

 

In September 2020, the FDA added a black box warning to prescription benzodiazepines. This warning states that "Physical dependence can occur when benzodiazepines are taken steadily for several days to weeks, even as prescribed." And that "Stopping them abruptly or reducing the dosage too quickly can result in withdrawal reactions, including seizures, which can be life-threatening." Unfortunately, much of the public and many healthcare providers are unaware of this warning.

 

Studies report 10-44% of chronic benzodiazepine users experience moderate to severe protracted withdrawal symptoms upon cessation lasting months to years; some have suggested calling this phenomena "Benzodiazepine Induced Brain Injury" or "Benzodiazepine Injury Syndrome".

 

This session looks at the benzodiazepine crisis from the perspectives of medical professionals, affected patients, and community organizers. The goal of this session is to increase knowledge about safer prescribing and deprescribing of benzodiazepines.

 

Sign up at the link below and select BENZOS as your concurrent session:

 

https://ucdenver.zoom.us/meeting/register/tJMlfuCtrDsuE9UPHq2Y2b9H_jxD14NRZm66

[[mo...]]

(Thank you, I just signed up and shared this on FB.)

 

Anyone else who catches this, like Libertas said: last day to sign up…

[[bu...]]

Many, many people get on benzos for symptoms caused by untreated/undiagnosed Lyme and untreated Lyme will lead to protracted withdrawal along with cognitive issues that don't just go away because the benzo is removed.

[[Na...]]

MsAtomicBomb -

 

I've signed up but it's maybe a 50/50 chance that I will end up being able to attend due to my schedule.

 

Will this be posted as a video that can be viewed at some point?

 

 

[[Ta...]]

Hope people take notes to share with all. I have a conflicting appointment.

[[De...]]

Many, many people get on benzos for symptoms caused by untreated/undiagnosed Lyme and untreated Lyme will lead to protracted withdrawal along with cognitive issues that don't just go away because the benzo is removed.

 

Where are you getting this information from? I know many people with Lyme who took benzos and had absolutely no problem getting off them and having Lyme disease in no way means you will have protracted withdrawals...statements like this could lead to people being diagnosed with ailments they do not have and make some think they have an ailment just because they are experiencing protracted withdrawals.

[[Ms...]]

MsAtomicBomb -

 

I've signed up but it's maybe a 50/50 chance that I will end up being able to attend due to my schedule.

 

Will this be posted as a video that can be viewed at some point?

 

I'm pretty sure there will be a video coming soon.

[[Na...]]

MsAtomicBomb -

 

I've signed up but it's maybe a 50/50 chance that I will end up being able to attend due to my schedule.

 

Will this be posted as a video that can be viewed at some point?

 

I'm pretty sure there will be a video coming soon.

 

Very good. I managed to get about the first 45 minutes and would like to see the rest.

 

 

[[Na...]]

To those of you that watched the entire event - was there any discussion of any potential treatment for Benzo Induced Brain injury/Protracted Withdrawal?

 

If not a treatment, any insight as to what the underlying cause is?

 

 

[[mo...]]

To those of you that watched the entire event - was there any discussion of any potential treatment for Benzo Induced Brain injury/Protracted Withdrawal?

 

If not a treatment, any insight as to what the underlying cause is?

 

Doesn’t sound like they are there yet, but I see huge gains in what was expressed and shared. Even someone mentioned immune system… I am far too tired right now, but ahhh! If they would only pay attention to that, digestion, adrenals and mitochondrial effects!

 

Those areas are the jackpot for understanding harm-reduction and potential helpf for us, in my opinion. Along with food/nourishment (vitamins, minerals) kinds of things. And toxic load! Still think Deziner from BB was onto some good leads re. Ph. and how all of this works.

 

I need to watch replay.

[[Ta...]]

I only caught Nicole Lamberson’s presentation which was very powerful and well-done, and a bit of the Doctor after her, before I had to leave. They were recording the event but not sure how to access that video when it’s ready.

[[Ms...]]

The video of the event is up on BIC's YouTube:

 

[[Na...]]

Thank you so much MsAtomicBomb for updating us.

 

 

[[Be...]]

Can someone highlight what was discussed?

[[Li...]]

The presentation slides (not video) for Benzodiazepine-Induced Brain Injury: The Hidden Prescription Epidemic are now available at:

 

https://corxconsortium.org/wp-content/uploads/Annual-Meeting-Benzo-Presentation-Combined-Final.pdf

 

The work of the Benzodiazepine Action Work Group (BAWG) of Colorado Consortium for Prescription Drug Abuse Prevention may also be of interest. BAWG’s mission is to “... increase benzodiazepine safety through education, patient support, and informed prescribing and deprescribing practices.”

 

Benzodiazepine Action Work Group Website

https://corxconsortium.org/work-groups/benzodiazepine/

 

Benzodiazepine Deprescribing Guidance Document (target audience is prescribers)

https://corxconsortium.org/wp-content/uploads/Benzo-Deperscribing.pdf

 

Edit: updated link to Benzodiazepine Deprescribing Guidance document

[[Fi...]]

Can someone highlight what was discussed?

 

Of the 4 presenters, 3 are suffering from Protracted Benzodiazepine Withdrawal. I believe those on this forum understand withdrawal symptoms and I won’t attempt to summarize the experiences of the 3 presenters who are suffering from Protracted Benzodiazepine Withdrawal. I believe they did a good job of explaining their experiences and the experiences of others who experience adverse events from withdrawing from benzodiazepines.

 

The one presenter who apparently has not used benzodiazepines or has not suffered adverse events from their use or discontinuation of their use is Alexis Ritvo, MD, co-chair of Benzodiazepine Action Work Group.

 

According to Ritvo, 12.5% of U.S. adults use benzodiazepines. Referencing the 2020 U.S. Census Report, there are 258.3 million U.S. adults (those over the age of 18). Performing a simple calculation utilizing the U.S. Census Report and Ritvo’s figure for U.S. adults who use benzodiazepines, about 32.3 million U.S. adults currently use benzodiazepines (258.3 million U.S. adults x 12.5% = about 32.3 million U.S. adults who currently use benzodiazepines). Also according to Ritvo, only 2.1% of U.S. adults misuse benzodiazepines. Ritvo did not fully explain what she meant by “misusing” a benzodiazepine but I assume she means using them greater than 2 to 4 weeks continuously. Again a simple calculation indicates that about 5.4 million U.S. adults “misuse” benzodiazepines (258.3 million U.S. adults x 2.1% = about 5.4 million U.S. adults who “misuse” benzodiazepines. Also according to Ritvo: “For some patients risk of tapering > risk of continued BZ”.

 

Ritvo presented 2 cases of patients she saw in her practice that recovered or partially recovered from “Benzodiazepine-Induced Brain Injury” after tapering. Ritvo also presented 1 case where a patient was referred to a psychiatrist for further treatment.

 

None of the presenters provided peer reviewed evidence based solutions for “Benzodiazepine-Induced Brain Injury”. Some of the presenters mentioned the use of other pharmaceuticals which may treat some symptoms of benzodiazepine withdrawal and pointed out that these may also have adverse effects.

 

I commend the efforts of all who seek to minimize the damage that can be caused by benzodiazepines and the damage that can result from the withdrawal from them. Sincere Best Wishes to All

[[Be...]]

Did any of them talk about permanent CNS damage?  It's happened to me. 

[[Li...]]

Did any of them talk about permanent CNS damage?

 

A video of the event is now available at:

 

Benzodiazepine-Induced Brain Injury: The Hidden Prescription Epidemic

 

Tips of the hat to the Colorado Consortium for Prescription Drug Abuse Prevention for hosting the event and to the Benzodiazepine Information Coalition for making the video available via its YouTube channel.