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New Study: Experiences with benzodiazepine use, tapering, and discontinuation


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The benzodiazepine experience survey was designed by Dr. Jane Macoubrie, a professor of communications and member of BIC’s general advisory board, and Dr. Christy Huff, director of Benzodiazepine Information Coalition, who both have lived experience with benzodiazepine harm. The survey was available online in 2018 and assessed the experiences of those on benzodiazepines, in the cessation process, or post-cessation. Respondents (n=1207) were asked about their demographics, taper status, symptoms and life impact due to benzodiazepines.

 

Findings:

  • Many patients experience a range of protracted and severe symptoms, even years after benzodiazepines were completely discontinued.
  • Life effects were numerous, with over 80% experiencing problems with work, recreation and relationships.
  • Suicidal ideation was reported by 54% of respondents, a concerning statistic worthy of further investigation.
  • About a third reported new seasonal and/or food allergies that occured only after benzodiazepine use.
  • The survey also received numerous write-in comments, a selection of which are published in the paper.
  • The paper concludes that greater awareness is needed for both prescribers and patients about the potential for a difficult withdrawal from benzodiazepines.

 

Statistical analysis was performed by D Foster, who also has benzodiazepine lived experience and is the author of Benzo Free. In addition to the three authors with lived experience, two Vanderbilt psychiatrists, Drs. Reid Finlayson and Peter Martin, provided their expertise in constructing the paper, while Bernard Silvernail led the research team meetings. Medical writing was performed by JoAnn Lequang, with funding from the Alliance for Benzodiazepine Best Practices.This is the first of several planned papers reporting on the survey results.

 

Full Study https://journals.sagepub.com/doi/full/10.1177/20451253221082386

 

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Shining a spotlight on the challenges faced by individuals who to wish to discontinue benzodiazepines is much needed and important work!

 

Thank you for giving us a heads-up re: the publication of this paper, MsAtomicBomb.  I hope all of our members and guests will give it a careful read. 

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I am glad more is being published on this terrible condition we are all living with.  The words and descriptions in that study dont even come close to representing how we are all feeling, what we are all experiencing, throughout our recovery.  It is truly hell on earth. 
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I am glad more is being published on this terrible condition we are all living with.  The words and descriptions in that study dont even come close to representing how we are all feeling, what we are all experiencing, throughout our recovery.  It is truly hell on earth.

 

I can't even think of a word that would relay my suffering. Maybe some type of scream.

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Thanks from me too for sharing this important work, I look forward to hearing more about Benzodiazepine Induced Neurological Dysfunction (BIND) as well.
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Thanks from me too for sharing this important work, I look forward to hearing more about Benzodiazepine Induced Neurological Dysfunction (BIND) as well.

 

You're welcome. Thank you for sharing it. More is coming out about it soon.

 

Article said that about 18% were diagnosed with an autoimmune disorder with benzo use.  I was.

 

I think I would be if I had the energy to investigate. I'm just totally run down, have bad anxiety with the medical tests, can't expose myself to some of the elements of the testing due to my benzo injury, and absolutely zero faith in my doctors so I have a hard time following through.

 

 

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They diagnosed my Lupus with just blood tests.  Didn't need any other testing done.  That study also mentioned how one person had trouble with traffic lights.  When I was in tolerance w/d, I used to run red lights all the time and stop at green lights because I was confused about what the red and green lights indicated. It's like I lost my memory of those things.  It used to scare me, because I was always a very good driver.
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This article was spot on. I think this would be a good read for family/support people who don't understand what their loved one is going through
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  • 3 weeks later...

Thanks for sharing. We desperately need studies and data. I get the impression that the only studies that get funding are presented by people who have gone through this. No one else is interested in performing research on benzo dependence and tapering, and damage.

 

The medical and psych community simply don't see an issue.

 

And pharma does not want to loose this tremendous cash cow.

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I get the impression that the medical establishment, medical schools, medical researchers, and drug companies are not interested in doing a studies of benzos because they think that they know everything about benzos and believe that anything to do with benzos is old news.  They would rather do studies on new medications.  Look at doctors who cold turkey people off benzos who were taking a large amount of benzos.  Look at the doctors who try to taper people in a few weeks.  It seems that some people can manage, but a significant number of people cannot.  This is why places like benzo buddies is so valuable.  People here have worked together to develop best practices.

 

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I have a theory that the benzo crisis has gotten tucked under the rug more than the opioid crisis because opioids kill people and benzos typically don't. In a society that measures things based on death counts rather than quality of life, the drug that kills people is going to get taken more seriously than the drug that creates disability. This country doesn't care about disability, and doesn't have good standards by which to measure it. But you can't statistically ignore "opioid OD" on death certificates, can you?

 

I hope our generation is the last to have to suffer through this.

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I heard on the news the other night that polysubstance abuse is killing alot of people in the country now.  I wonder if that's when people take psyche meds and also other illegal substances at the same time?
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Many prescription and illegal drugs are cross tolerant. Benzo's and opioid is one example. The death is always attributed to the opioid, or alcohol, never the benzo.

 

If you look up the toxicology in overdose deaths, you will see this trend.  Many people were taking benzos as prescribed at the time of their death. Or, more. I don't care of the drugs were legal are illegal. Being illegal does not make a drug more dangerous than it's legal counter point (heroine-fentanyl) It's the poly-drugging that killed them. Or their intentionally choice to join the cosmos, or an accident that was preventable.

 

Also, many incidents of death other means are undertaken by celebrities who use benzo's.

 

LOS ANGELES — Family members of Chris Cornell on Thursday sued a doctor they say over-prescribed drugs to the rock singer, leading to his death.

 

Cornell, frontman for Soundgarden, died in May 2017 in Detroit; he was 52. The coroner ruled his death a suicide by hanging.

 

Toxicology tests showed there were drugs present in his body, including Ativan along with barbiturates, caffeine, the anti-opioid drug naloxone, and a decongestant.

 

But the autopsy report said the drugs were not a cause of death.

 

Cornell's widow, Vicky Cornell, and their children, Toni and Christopher, are plaintiffs in the lawsuit filed in Los Angeles Superior Court asserting that prescription drugs, especially the anti-anxiety drug Lorazepam (brand name Ativan), led to erratic behavior by Cornell before his death.

 

 

Start way back with Whitney Houston, Michael Jackson, and move to Amy Winehouse, Prince, Tom Petty, Heath Ledger, Mike Starr (Alice in Chains)and many more people who died of overdose. Benzo's seem to always be there.

 

Many celebrities are treated by providers who know nothing about benzo dependence. Here are some stories. Eddie Van Halen, and other celebrity survivors,  was cold turkeyed off of it:

https://www.benzoinfo.com/category/celebrities/

 

I really liked Jonathan Davis story, and it explains what was the impetus behind some of Korns lyrics.

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I have a theory that the benzo crisis has gotten tucked under the rug more than the opioid crisis because opioids kill people and benzos typically don't. In a society that measures things based on death counts rather than quality of life, the drug that kills people is going to get taken more seriously than the drug that creates disability. This country doesn't care about disability, and doesn't have good standards by which to measure it. But you can't statistically ignore "opioid OD" on death certificates, can you?

 

I hope our generation is the last to have to suffer through this.

 

I think this is right. They have no idea what's even going on and write off the adverse events/suffering/torture to other things/mental illness/denial. It's not collectively reported or discussed in medicine at all.

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  • 1 month later...

Many prescription and illegal drugs are cross tolerant. Benzo's and opioid is one example. The death is always attributed to the opioid, or alcohol, never the benzo.

 

If you look up the toxicology in overdose deaths, you will see this trend.  Many people were taking benzos as prescribed at the time of their death. Or, more. I don't care of the drugs were legal are illegal. Being illegal does not make a drug more dangerous than it's legal counter point (heroine-fentanyl) It's the poly-drugging that killed them. Or their intentionally choice to join the cosmos, or an accident that was preventable.

 

Also, many incidents of death other means are undertaken by celebrities who use benzo's.

 

LOS ANGELES — Family members of Chris Cornell on Thursday sued a doctor they say over-prescribed drugs to the rock singer, leading to his death.

 

Cornell, frontman for Soundgarden, died in May 2017 in Detroit; he was 52. The coroner ruled his death a suicide by hanging.

 

Toxicology tests showed there were drugs present in his body, including Ativan along with barbiturates, caffeine, the anti-opioid drug naloxone, and a decongestant.

 

But the autopsy report said the drugs were not a cause of death.

 

Cornell's widow, Vicky Cornell, and their children, Toni and Christopher, are plaintiffs in the lawsuit filed in Los Angeles Superior Court asserting that prescription drugs, especially the anti-anxiety drug Lorazepam (brand name Ativan), led to erratic behavior by Cornell before his death.

 

 

Start way back with Whitney Houston, Michael Jackson, and move to Amy Winehouse, Prince, Tom Petty, Heath Ledger, Mike Starr (Alice in Chains)and many more people who died of overdose. Benzo's seem to always be there.

 

Many celebrities are treated by providers who know nothing about benzo dependence. Here are some stories. Eddie Van Halen, and other celebrity survivors,  was cold turkeyed off of it:

https://www.benzoinfo.com/category/celebrities/

 

I really liked Jonathan Davis story, and it explains what was the impetus behind some of Korns lyrics.

 

I am convinced that Michael Jackson was taking propofol to sleep due to benzo tolerance withdrawal. I think a lot of these people start to hit tolerance withdrawal/paradoxical state with the benzo (which I think is an allergy to the drug that prevents the drug from entering the receptors and triggers withdrawal), and then they start not sleeping and/or acting crazy, so they need to take more and more drugs to try and patch the withdrawal with disasterous consequences.

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Many prescription and illegal drugs are cross tolerant. Benzo's and opioid is one example. The death is always attributed to the opioid, or alcohol, never the benzo.

 

If you look up the toxicology in overdose deaths, you will see this trend.  Many people were taking benzos as prescribed at the time of their death. Or, more. I don't care of the drugs were legal are illegal. Being illegal does not make a drug more dangerous than it's legal counter point (heroine-fentanyl) It's the poly-drugging that killed them. Or their intentionally choice to join the cosmos, or an accident that was preventable.

 

Also, many incidents of death other means are undertaken by celebrities who use benzo's.

 

LOS ANGELES — Family members of Chris Cornell on Thursday sued a doctor they say over-prescribed drugs to the rock singer, leading to his death.

 

Cornell, frontman for Soundgarden, died in May 2017 in Detroit; he was 52. The coroner ruled his death a suicide by hanging.

 

Toxicology tests showed there were drugs present in his body, including Ativan along with barbiturates, caffeine, the anti-opioid drug naloxone, and a decongestant.

 

But the autopsy report said the drugs were not a cause of death.

 

Cornell's widow, Vicky Cornell, and their children, Toni and Christopher, are plaintiffs in the lawsuit filed in Los Angeles Superior Court asserting that prescription drugs, especially the anti-anxiety drug Lorazepam (brand name Ativan), led to erratic behavior by Cornell before his death.

 

 

Start way back with Whitney Houston, Michael Jackson, and move to Amy Winehouse, Prince, Tom Petty, Heath Ledger, Mike Starr (Alice in Chains)and many more people who died of overdose. Benzo's seem to always be there.

 

Many celebrities are treated by providers who know nothing about benzo dependence. Here are some stories. Eddie Van Halen, and other celebrity survivors,  was cold turkeyed off of it:

https://www.benzoinfo.com/category/celebrities/

 

I really liked Jonathan Davis story, and it explains what was the impetus behind some of Korns lyrics.

 

I am convinced that Michael Jackson was taking propofol to sleep due to benzo tolerance withdrawal. I think a lot of these people start to hit tolerance withdrawal/paradoxical state with the benzo (which I think is an allergy to the drug that prevents the drug from entering the receptors and triggers withdrawal), and then they start not sleeping and/or acting crazy, so they need to take more and more drugs to try and patch the withdrawal with disasterous consequences.

 

My goodness, that makes so much sense. That brings in Elvis Presley and his "sleep cocktails" he used, which often did not work.

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