Long-term consequences of benzodiazepine-induced neurological dysfunction

Long-term consequences of benzodiazepine-induced neurological dysfunction: A survey

 

Our new groundbreaking research sheds light on BIND. Exploring the Long-Term Consequences of Benzodiazepine-Induced Neurological Dysfunction (BIND): A survey. Insights from this on the long-lasting effects of benzodiazepines on neurological function.

 

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0285584

This is great! So happy to hear the study has finally been published! 

Please send our gratitude to everyone involved!

Thank you for the heads up about this important paper, MsAtomicBomb.  I hope BenzoBuddies members and guests will give it a read and share it with others as appropriate.  Per the Conclusions section:

 

While acute benzodiazepine withdrawal is well described in the literature, there is far less known about the often distressing and enduring symptoms which impair life functioning in those who have discontinued or are in the process of discontinuing benzodiazepines. We propose the term benzodiazepine-induced neurological dysfunction (BIND) for this constellation of symptoms. Our survey shows that for some benzodiazepine users, these symptoms are severe, life altering, and not infrequent. A significant subpopulation of respondents with BIND reported multiple and severe symptoms, many of which were not the symptoms for which the benzodiazepines were originally prescribed. The mechanisms of BIND, its clinical course, risk factors, and treatment modalities warrant further study.

Oh how I wish this would have been available to me when I went through this!  Thank you MsAtomicBomb for pushing for this and for sharing it with us.

That's me for sure.  I've been suffering terribly even while on benzo's and now that I'm off, I've got permanent damage from them. 

I sent the article to several of my doctors, and also gave a copy to my really great Chinese acupuncturist who trained with one of the Chinese masters; he is really helping with me with the long-time headaches and he is having his dietician structure a way of eating that is going to rid me of all the fungus that has been stored in my gut for way too long.  Cure the gut, heal the head!!!  The correlation between the gut and the brain is amazing, and I am making really good progress with him.  He has read everything I have given him about benzos and he is amazed at the number of people who have been harmed.  The good news is that a majority of us come through fine and return to a good life pre-benzo.  Of course, there are other mitigating factors that determine how much an individual can expect to fully heal.  I would be happy with 80% at my age!!!!

This study is getting major media coverage.  There is an article in the New York Post today, with links to the study:

 

https://nypost.com/2023/06/30/popular-benzo-drugs-linked-to-suicide-brain-damage-study/?fbclid=IwAR2pt6Y1lUaTiKuZ1OcZYe1RExbZHUj2sIOT8chJ4YPvyRHS0vN6ff-qkAw

Thank you, Zeph.

 

Here’s another one from Psychology Today South Africa:

 

Benzodiazepines Linked to Long-Term Neurological Dysfunction

https://www.psychologytoday.com/za/blog/side-effects/202306/benzodiazepines-linked-to-long-term-neurological-dysfunction

 

I wish these articles were placing more emphasis on the need for patient-centric, individualized, symptom- and functionality-informed tapering to reduce the risk of BIND.  I fear some prescribers will see headlines such as the one above and and think ‘I have to yank my patients off these meds immediately.’  Even if prescribers are aware of the US FDA black box warning to use a ‘gradual taper’ to ‘reduce the risk of withdrawal reactions,’ many of them were taught that a ‘gradual taper’ means reduce the dose by 25% a week for a month or take the med every other day, then every third day, etc.

That New York Post article is very important.  The word has gone mainstream.  I sent the link to a friend of mine.  That is what happened to me:  brain damage.

This was just published a few days ago by the NIH.  Word is truly getting out about BIND.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10309976/

 

Psychology Today a few days ago:

 

https://www.psychologytoday.com/us/blog/side-effects/202306/benzodiazepines-linked-to-long-term-neurological-dysfunction

This is progress.  This will help change the discussion. 

 

That being said, in 2021-22 I saw two of the doctors on that research team at Vanderbilt (one while in psych hospital three months after jumping) and on another on an outpatient basis, and both wanted to reinstate me on Valium and then have me do a proper taper.  I asked them how long a proper taper would be and they said 6 weeks.  And, I told them I did an 8 month taper how would a 6 week taper be any better. 

 

The doc on this research team I was seeing on an outpatient basis…he tried to reinstate me several times for anxiety and I refused.  He just thought everything was anxiety despite the myriad other symptoms I complained about. He was very frustrated that I wouldn’t listen to him.  At 10 months off, I was still horribly symptomatic and desperate, and doc swore that if I reinstated and was put on an anticonvulsant, that it would work.  I gave in and his plan totally backfired.  After about two months the benzo stopped working completely and I was in major tolerance withdrawal.  My symptoms are probably 3x worse than they were before.  I stopped seeing him because I was so ticked off.  I tried to direct him to BenzoBuddies and he wasn’t interested.  However, this was before the BIND term really came about.  He told me he was part of a study and learning more.  Apparently not enough at the time. 

 

Yes, this is progress but doctors still don’t know how to treat unfortunately.  Prevention is the best medicine though.  Hopefully both of those doctors learned a lot during that research.

Thank you for sharing your experience with us, djej2010.  I’m sorry it was so rocky and hope you are now well along the road to a full recovery.

 

I agree with you that prevention is the best medicine — especially when it comes to treating the millions of patients who are currently taking benzodiazepines exactly as prescribed.  It is deeply disturbing that so few prescribers are aware that ill-informed deprescribing practices (e.g., too rapid, formulaic, ‘one-size-fits-all’ tapers) may well increase the risk of BIND.

I've still got all the symptoms in Table 1 of the article.  This is criminal.

I’m still struggling almost 20 years from initial dose of Klonopin for chronic insomnia.  Thx for doing the research.....and for keeping this board active. 

This study also got picked up and put into an article by "Forbes" a couple weeks ago:

https://www.forbes.com/sites/anuradhavaranasi/2023/07/11/benzodiazepine-use-might-result-in-long-term-neurological-dysfunction/?sh=6fe1e5d33f39

Wow, this is awesome that this was reported on in Forbes. Thanks for sharing this.

That's good that it was in Forbes, money always brings attention to things. Sometimes it brings the wrong attention, but in this case I think it'll do good.

Yeah, I was happy to see it was in a publication like that.

15 hours ago, [[h...] said:

Yeah, I was happy to see it was in a publication like that.

Agreed, now the issue is how much can the media say without being anti-doctor? It's kind of the same on this website, we can only say so much before we get in trouble. I think that's the issue with the media versus the FDA and media versus the government and so on, it's just the way our government was created. If we don't have a medical license, then we get downplayed. But the reality in my opinion is that the medical people should be downplayed at this point. If enough money and celebrities get involved, that's one way to sometimes get a one up on the medical professionals, speaking from a winning perspective through the media.

Gotta speak truth, no matter the consequences. It's worth the fight.

Well it's a start in the right direction, maybe save some folks for having to go through what many of us have Just so they don't abruptly stop the 'scripts before "present" users have a chance to wean off the right way.

On 7/14/2023 at 1:15 AM, [[b...] said:

I’m still struggling almost 20 years from initial dose of Klonopin for chronic insomnia.  Thx for doing the research.....and for keeping this board active. 

Hi Betty!! It's me!

On 30/06/2023 at 04:30, [[M...] said:

Long-term consequences of benzodiazepine-induced neurological dysfunction: A survey

Our new groundbreaking research sheds light on BIND. Exploring the Long-Term Consequences of Benzodiazepine-Induced Neurological Dysfunction (BIND): A survey. Insights from this on the long-lasting effects of benzodiazepines on neurological function.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0285584

26 years on them for me.  First xanax for 10 years, then valium for 16 💔 I'm 32 days ZERO now and it's become quite evident, my brain and whole central nervous system have been damaged.  I can only hope not permanently 🥺💔

,

 

1 hour ago, [[C...] said:

Was bedeuten lebenslange Folgen? Es heißt, dass es lebenslange Folgen haben kann? Ich dachte, jeder heilt irgendwann. Wer kann dazu etwas sagen? Bitte!

What do lifelong consequences mean? It is said that it can have lifelong consequences? I thought everyone would heal at some point. Who can say anything about it? Please!

 

Hallo @Clarissa13. BenzoBuddies verwendet Englisch als unsere Hauptsprache. Würden Sie bitte ein Deutsch-Englisch-Übersetzungsprogramm verwenden, wenn Sie posten? Vielen Dank.

Hello @[Cl...].  BenzoBuddies uses English as our primary language.  Would you please use a German to English translation program when you post? Thank you.