Benzodiazepine-Induced Neurological Dysfunction (BIND) Research Team Roundtable
ฝัง
- เผยแพร่เมื่อ 21 ส.ค. 2024
- The benzodiazepine research team holds a roundtable discussion about their work, the findings from the 2018 benzodiazepine survey, and their latest paper formally introducing the term benzodiazepine-induced neurological dysfunction or BIND.
The research team includes A. J. Reid Finlayson, MD, D E Foster, BA, Christy Huff, MD, Peter R. Martin, MD, MSc, and Alexis D. Ritvo, MD, MPH. Team member Bernard Silvernaill, MS, was unable to attend the roundtable. Angela Peacock, MSW, graciously moderated.
Published research includes:
Long-term consequences of benzodiazepine-induced neurological dysfunction: A survey
journals.plos....
Enduring Neurological Sequelae of Benzodiazepine Use: An Internet Survey
pubmed.ncbi.nl...
Experiences with benzodiazepine use, tapering, and discontinuation: an Internet survey
pubmed.ncbi.nl...
We thank D.E Foster of Easing Anxiety for his work on this video. Follow him here: / @easinganx
This video has been made available for informational and educational purposes only. This video does not substitute professional medical advice, and no doctor-patient relationship is formed through the video. This video is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. This video has been made available for informational and educational purposes only. This video does not substitute professional medical advice and no doctor-patient relationship is formed through the video. This video is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
![ทางเดินชีวิต - ธีเดช ทองอภิชาติ x อ.ไข่ มาลีฮวนน่า [Official MV]](http://i.ytimg.com/vi/1f3wcG16dd4/mqdefault.jpg)
Everybody there seems alright. I'm over 5 yrs off and still have many sensitivitys and bad days. However..on my good days I feel very close to healed.
I'd love to see a "website" group of people in any stage of recovery from this horror so that others might gain hope. When someone is able to share that they have had any degree of success they become the EVIDENCE that it can happen and this is what those who are hopeless need like a cool drink of water on a desert. Thank you...I'm involved with trying to help others.
Please keep fighting and researching for us. ❤
I went off 30 years of Benzo's 7.5 5 times a day. I tapered off all of it in two months in rehab.. My brain crashed and I almost died. During the end of my taper, I lost vision for a day, lost the ability to urinate without self-catheterizing for many months, lost the ability to walk, fell, and broke my leg. I hallucinated. I had severe core itching, and itching rashes on my skin. I had severe muscle stiffness and nerve pain.I have limited memory, and struggle to think properly. I spent two years in bed almost full-time.It's been 4 years and I'm 35-40% better on any given day. I still have severe symptoms. I am 65 years old and do not think I will ever fully recover. What a price to pay for taking Benzos which did not help my anxiety!!.
Wow .. I'm without words.. not the kinda words I wanna give to the Forever Cloud..pls remain hopeful..I am 66 😢
I am 25 and got this because of my therapist as safe sleeping aid cause I had to sleep better than I did they said. I was in cortisone withdrawal and feeling okay but confused.
Thank you. Some things I was guessing at you confirmed.
Omg I’m so sorry . I had similar happen . Please look into programs like DNRS which can help you !
I’m so sorry. I hear you and feel your pain so much 😭🙏❤️
It gives me a lot of hope that you all are doing this. ❤️ Getting off benzos is horrific. Left my friend completely and totally disabled. SSDI doesn’t accept this so it’s a very frightening position to be in. 🙏❤️ If there was something that would cover the trauma to the gaba receptors I believe many more people would quit.
Recovery is possible...as they say..AA
@@terryells2474 Benzo harm has nothing to do with AA we are not addicts we are victims of big pharma, and the FDA and lives have been ruined because we were uninformed patients who should damn well get disability approved asap in order to do a long slow taper and deal with the 5-10 year disability we will be left with and unable to work. All because i said i was having anxiety. i was prescribed klonopin for 35 years and almost died 3 times trying to taper off so i am pretty sure i am one of the patients that should get disability and infact we should get more than SSDI we should get 100 million dollars for the danage this stuff has done taken AS PRESCRIBED!!!!!! Please hurry and make this BIND a diagnosis so we can have a little bit of security with disability. I am 54 and I don't think my retired Mom should spend her retirement taken care of me for 10 years!
@@panoramicnomadicI completely agree with you and am so sorry we share this pain . I get to do this during the perimenopause stage so it’s really messed me up
The Ketogenic diet had been shown to control seizures anxiety and general cognitive decline. It does this through naturally induced expression of GABA. I hope this helps, it changed my life. I'm also a recovered heroin and benzo addict. I've been clean since 2016.
@@jordanhansen7053 Congratulations! 🙏💕
I wish I had never heard of benzodiazepines.
This was an amazing panel discussion. How far everything has come since I began my journey over 6 years ago! Sadly, most doctors will remain blind and uncaring, but, hopefully, some will change. I love this channel. I always feel validated. Thanks again ~ Janet
What do you mean? They know barely anything unfortunately 😢
I was taken off of Klonopin aftet 17 years of using it .. only as prescribed.
Got SSI because of severe anxiety disorder.. Dr tried to taper me off in 1 month.. Withdrawal was Hell.... And now 1 year later.... I'm in HELL...
suffering everyday... feel like I am crazy...dont want to drive, be around people, anything.. just too much stress and panic . I feel totally disconnected from reality
Im tired of feeling like this.
I honestly don't know how much longer that i can live feeling like this...... mostly because NOONE UNDERSTANDS!!!!
IM DONE❤
Hey my friend I'm very sorry for what you've been through. I wanted to offer something that helped me in a similar circumstance as yourself. The Ketogenic diet quite literally saved my life as I know it today. The key here is ketos natural mechanism of upregulating your GABA expression through side effects of the metabolic process of utilizing ketones rather than glucose. Please give it a try. Good luck!
So sorry you're suffering 🥲hugs❤
Try kratom. It made quitting alcohol and benzos significantly easier. I’ve had 3 withdrawal bouts and quit. It was never easier than it was with this.
Yeah the withdrawal cycle of panic…It will break you mentally, spiritually, physically. The Kratom helped ALOT but Just be aware that you are robbing Peter to pay Paul. I needed something to help me get out of the cycle. I’ve done it without but it’s really really hard….
I was prescribed klonopin at the age of 12 for panic disorder, I am now 47, tapering for the last 6 yrs and it has been hellish, the chemical terror this entails is heart breaking, to feel your body shutting down, seizures,the inability to sleep more the 2 hrs at a time, the fevers, sweating to were the bottom of my feet leave footprints of sweat, the loss of family, friends, the development on top of PTSD compounds everything, the inability to walk steady. The despair and isolation is enough to crush the very fiber of one’s being, all because of one drug that was taken as prescribed. A drug that induces brain dysfunction and still there is no accountability, no compensation for the damage is not only unacceptable it is unthinkable that we are left to fend for ourselves with just a pat on the back, most end up in assisted living facilities at best is a shame. We need the same medical community that put us where we are to pull us out of it, treatments must be researched, people are dying looking for relief, smh..
Hey brotha I'm so sorry you have been through this. I can't even imagine what you have been through. I'm a recovered benzo and heroin addict with 7 years clean. I had protracted symptoms although not a severe as yourself but pretty bad nonetheless. I want to recommend the Ketogenic diet. It helped me tremendously due to its natural strong expression of GABA mediated by the metabolic state of being in ketosis. Please give this a try. It changed my life after being 3 years clean and miserable as a sob. Please try my friend this is not a gimmick.
There needs to be a class action lawsuit against these drug companies and Drs pushing them
😢 At the very least
Make it CRIMINAL, any NEW benzodiazepine class Rx gets prison.
The end.
Its not a wrist slap, oops. A criminal court matter
Yes...I lost my 20 year career over 7 years ago and never got it back after short term benzo use and the nonstop hell that ensued after I tapered off...... and of course... I was never compensated with any disability.... they said there was not such thing as benzo damage after you stop the medication. It's so frustrating.
How long was your use?
Sure is! Lost everything. Should be compensated somehow for the damages it causes! 🤬😭
@@hearme4581 My use was 1 MG of Ativan per day for about 2 weeks
I think a more appropriate name is BINI ... benzo induced neurological injury. Put the blame squarely on the drug, not the patient.
BIND still does... because it's benzodiazepine-induced, meaning it is solely caused by the benzo. The dysfunction is a specific type of injury, but the crux is it's caused by this class of drugs and nothing else.
I like it, but beggars can't be choosers 😂
And bind sounds demonic
Agree!
Language is important
Study didn't directly address muscle twitching, numbness, neuropathy etc.... which is very common issue.
Beating Benzos a safe place to connect with others and learn about the symptoms of Benzo withdrawal.
This is happening to me right now.
@@bonniedwyer3864is that a Facebook group?
@@susanmcmahon8867I am so sorry I went through it too
@@susanmcmahon8867me too.
❤Thank you for all your help!❤ You're ALL wonderful!!
I’m benzo only and six years protracted. I know lots of benzo only people. We get slammed as hard as polydrugged people.
Benzo only for 10 years and cold turkey…been off three years and still hell. The agoraphobia is killing me! Wtf do we do?? SOMEBODY HELP! 😭😭😭
Thanks for your work. It's reassuring to know there are people like you taking this subject seriously.
When I was diagnosed with Benzodiazepine Withdrawal Syndrome, I told my Neurologist about BIND. He just chuckled and said "that's a misnomer."
AMAZING 👏
Thank God for all of you and your research!!!!!!
I forgot to mention that at the end of my rapid taper,I could not drive, read or write for three months.
I think it is very disturbing that I was allowed to taper off my Benzos so rapidly. One would think that the Dr. at the rehab would have known better!
They don’t care bottom line. We are expendable.
I'm kind of glad they ripped me off the Ativan. Once I was out of rehab all I had to do was concentrate on healing. Never had to take another benzo again.
After a horrific gabapentin withdrawal I wanted to come off all meds that I was taking that had withdrawals. I really researched before coming off of the benzo I had been on for 7 years. I did it the right way and it took 2.5 years and it was brutal. The insult to my cns was and is there. Although not as bad as those who CT or rapid taper. But thank you for this work. You will prevent a lot of suffering and help those who are suffering. Thank you.
What?
It makes me so sad that so many people consider these unfortunate victims drug addicts.
It's also sad that someone thinks a drug addict is inherently bad and somehow not unfortunate. I am sorry for your pain though
my honest opinion is at first i liked what you stood for but as someone on a benzodiazepine still..... and seeing what is happening in the groups to all of these poor people getting ripped off with out a taper because now that you guys are bring this stuff to light . THE DOCTORS DO NOT WANT TO PRESCRIBE ANYONE BECAUSE OF LIABILITY ... and in turn we as the patience suffer and are either rapid tapered or just completely ripped off without warning........ i think you guy should start looking for the magic bullet.... for the opioids they made suboxone lets find something for use that is much easier to taper and help the patients more and make it easier to get off of and heal
Imo ...the jury is still out on subs.. we are in the stage of prescribing Suboxone as benzos in the 90s..so there's that..a big pharma push at it's peak monetization
Totally agree. I am completely disabled from ct. I was fully functional before. I understand the dangers of just staying on it but we need help. Yes, many potential victims have been saved so I guess the needs of the many outweigh the few but we aren’t all that few. I’m my opinion, the mistake was not giving doctors just as much education about withdrawal as they did about the dangers of the drug.
Anyone here that tapered is lucky. I was told by some hot shot Nurse Practitioner that I needed to stop taking Klonopin and I should be fine. My next visit I was told since I wasn't taking the Klonopin anymore I didn't need to come back and I was released. When I called back and told them I was having problems they assured me that withdrawal only lasts 7 days. I had been complaining to my primary care Dr but it was during COVID-19 lockdown and was just gaslit. Finally I went to mental health as an emergency patient and they interviewed me with a security guard standing over me and said we just don't give out meds . When I started shaking and jerking they drug tested me for meth I'd assume and of course was clean. They gave me an appointment for 3 mos later. I went home and stayed in bed for 4 months. They never called to check on me when I didn't show up. I'm still having serious issues and don't know what to do. I will tell my Dr about this bind thing.
As for the survey.. how many homeless people who "don't exist" are affected. How many people were cut off meds and in turn SSI payments and have no family or resources and have died.
I called Vanderbilt. I wanted to get an appointment with AJ Reed. They told me that the only way you can get an appointment is through an internal referral. That there's no other way to get to these doctors that know about this. And I told her ,I guess I'm going to die. Because my doctor does not understand or he does not want to learn anything. Try the water taper and had a seizure. Didn't even get to start the taper. So I'm cutting and filing I'm never getting the right dose. My heart is all messed up. Blood flow is being cut off in my legs. I have lost so much weight I'm starving to death. I'm not allergic to everything. And the pain. This medicine has to have a demon in it. Only a demon would know where exactly your pain was to begin with.
Kratom and Zoloft got me off of them. Completely.
I’ve done it CT, tapering, slow turkey, etc. it’s so hard.
You’re on the verge of anxiety/panic attack sometimes all day long.
Hyperventilating for hours and hours at a time - which I think is what causes the nerve tingling and swelling problems. I’ve read that HV’ing chronically disrupts the oxygen and carbon balance in the blood and it might cause the body to react in strange ways. I’ve experienced that myself.. my feet would tingle and I’d think I was going to have a stroke or something.
Its not ideal but I needing something to help me escape from the panic cycle. I always thought that drugs could help BZD WD if used responsibly and sparingly. It really made the difference for me.
How about the doctors take it and see how it affects them!!!
I would like to see studies done with benzo patients whom have NEVER been on a benzo forum. People who do not know anything about anyone else’s symptoms.
I would like to see this as well. I think the problem right now is that ppl don't understand what's happening to them at first. So, in my case- I started doing research amd educating myself. I did not go onto a benzo forum until months after I realized that I WAS having withdrawals. I was told by my doctor that I COULDN'T be having benzo withdrawals. Then she proceeded to try to give me something for bipolar disorder. 🙄 In conclusion, I think this might be possible in the future when actual scientific studies or more research is being done💜
YES, but incentives exist for “deniability.” Not just for big pharma. @@doeboy1103
Hey, I was CT in a long term rehab facility and didn’t have internet access for the first 7 months. Had all sorts of insane symptoms that I was finally able to name when I finally found the groups. I’m 20 months off and about 90% healed 🙏
Thank you for all you do💗
Xanax extended release should be banned and the makers thrown in jail. A year and a half after I tapered off I lost most of my memories and my ability to make new memories. Most of my hair has fallen out and isn't growing back. My body is literally drying out. I don't sweat just get super oily so I'm broken out so bad. Now my mouth has totally dried out I literally have no saliva, my gums are receding so fast I literally will have none left in a year if it keeps going this way, I'm in excruciating pain and can barely talk. It's hard to even tell my 7yr daughter how much I love her. I've turned into a helpless worthless monster and everyday get worse and worse. I took this medication how my Dr prescribed them
Maybe try fasting. Maybe your body will heal with autophagy.
My hair has fallen out too, alot. I am still tapering at the moment. How long did you taper for?
For your mouth use gum, mints, toothpaste and mouthwash with xylitol. It will help it heal.
Mouth wash and toothpaste kills your good bacteria and messes your pH. Saliva has bicarbonate =baking soda. Home made coconut oil and baking soda is more nourishing and helps reserve your natural flora while getting rid food which feeds the cavity creating bacteria. Salt swishing can be helpful. Google studies linking increased cardiac events with mouth was use. Your mouth has beneficial bacteria which gets harmed with mouth wash and toothpaste which interferes with mouth ph, coats the tooth and does not allow for natural remineralization process. When bacteria is harm, your body’s ability to produce nitrous oxide is diminished. Many products sold commercially is toxic for our good bacteria and body function.
Also, all drugs have side effects and it is varying degrees and difficult to isolate for some other drugs. People are naive to think taking drugs is the answer to their psychosis or any other body inflammation/insulin resistant /htn etc. root cause analysis and dietary and life risk/environment and micronutrients/ meditation are more effective and sustainable without pushing patients to more severe psychiatric problems.
My back vibrates like a brick or concrete swirling n rubs against my ribs..feels like bone on bone. Its pure torture! I wanna scream!😭and my air hunger is so SEVERE that i been to the e.r like 8 times cause I panic🥲This is my 3rd time going thru Klonopin withdrawal. First time and 2nd time never vibrated or had air hunger this time is torture. I cant deal w this everyday 😭
I have spinal vibrations, and many other "strange" symptoms as well. I'm also struggling, and while I don't have anything tangible to offer, just wanted to let you know I hear you, believe you, and wish you the best. In discussing this with my taper-psych, and we laughed (not funny) that the only reasonable thing to do with these symptoms is to freak- out some Neurolgist, who does what? Prescribes meds!🙄 No thanks, but this mind struggles with the meaning of these "effects". Best your way.
Only ever didn't listen how to stop taking that stuff. I'd just stop. No side effects at all. Besides nothing to quickly take away the attacks. Only thing I'd really worry about was full blown panic attacks. I didn't even take them all the time or every day. I feel their is a link between addiction and mental health trying to self medicate. However I also feel their are just people looking to get messed up. I never felt relaxed from them after the first few doses. As I'd actual only take it if needed as I felt it coming on.
What should one do if a single benzo dose triggered severe withdrawl after it wore off?
Context: long term daily prescribed benzo was tapered slowly, it all was confortable and went well.
After being off about 5 several single doses were taken in a period of 2 months. One dose triggered severe issues like a bomb exploded in the brain as if it was a CT.
Severe mental and physical changes that caused disability when the person was completely healthy before. No other drugs, no alcohol.
What should be done? Is reinstating the answer after all?
My Dr did this to me.. just started in September and by January something happened.. 11 and 1/2 year intractable pain patient.. he gave this to me for extreme muscle contractions.. and I'm having withdrawal in between doses and it's bad.. I think I have neurotoxicity in BIND
symptoms like twitching ? and mania? no filters?
Any research on how long it takes the stomach and digestive system to heal. Ive been off X for 90 days and still getting horrible stomach and digestive issues. also have days that have trouble urinating and then times it flows ok. Iam 63 and know urine flow gets slower. but i think BIND is pkaying a role in the pelvic floor
No one talks about the pain for years
I only took benzos , the team should try benzos and see for yourself what happens
If I come to Nashville, will you help me before it kills me.. getting worse everyday..
It’s an anesthetic.
It’s not worth the risk, if you ask me.
Cutting edge psychiatry is cool, but being a canary in a coal mine isn’t .
Only reason looking in to all this. Is because I'd just stop taking all meds. Then if I felt I was getting to a point I couldn't manage on my own stressful life events usually. I'd go to a doctor it wasn't that hard it was like pulling teeth this last time. Id say prescribe me what I've been prescribed that worked in the past. Usually there was no problem with that actually ever. Now depending on how long I kept taking it and going for services. They might change my anti depressant usually using its dose. Also sleeping pills that I could not stand any of them. They were either to strong, too weak, made me gain weight, and once made me see things no thank you 🙏. But since the pandemic I've tried to go get some help again. It took over a year. This doctor was I know I don't wanna describe any of that 😆. I was like ok then what? You pretty much prescribe me everything I've taken before but added this thing called Lamictal. Even a sleeping pill that I was like I'll never take that again. But he promised a low dose I should be fine. Now I go look up this medication. Before I go pick it up and I see sincere nonsense some rash that kills people. Instantly I'm hit with almost as bad a bad anxiety to a full blown panic attack and fear. So I go looking into this medication and why they're prescribing Me this when this thing has a black box warning label. I'm obviously concerned with the medications. I wouldn't even take as many of the benzos I was allowed to and suggested to take 😆. I only take the sleeping pills if I absolutely like it was 2 in the morning I was like alright I give up. My point is you shouldn't make people who don't go in to these abuse and constantly raising the doses suffer because of all those who are bigger if not huge risk takers. People like myself wouldn't ever have Any of these problems with the benzos. Unless you locked us up in hospital and forced us to take bigger and larger doses and even check under our toung LOL. I and I am sure many more actually only seek to manage a disorder correctly and wanting to really function. But whatever you all do yalls thing. Ill never take that Lamictal. Im glad I researched it first.
That's a real issue with benzos..They Actually Work. especially with crippling anxiety.. but they turn on you. It's like one day your body says, "I've had enuff"..tolerance comes, breakthrough anxiety which is far worse than panic.. amnesia to half ur life, impulsiveness, and even Paradoxical Reaction..a horrible phenomena that I think is far more widespread than it's diagnosed..
Doctors, I am very interested in the phenomena of paradoxical reaction, which google says only effect 1% of pts..as a low level recovery professional, I wonder if it's not more common? Just not caught in diagnosis..lost in communication
When ppl become well enough..it's so helpful to become busy..and eat very close to the source..the doc is so right..NEVER IN THE MOMENT on the benzos..it causes half a relationship with loved ones, God, and yourself .and lotsa guilt ..Itsa Blaming society..and in the medical field the patient is made to feel very at fault
Please do research on how benzo affects on autistic people
Does anyone know a natural remedy for this hell?? I’ve never had agoraphobia before the 10 yrs on KLONOPIN. I cold turkey and been off three years and the agoraphobia is crippling me!! PLEASE HELP!! 😭😭😭😭😭
How are you now?
No, I do wish I knew of something natural... I understand...it sucks 😭
So, if u take benzos everyday for less than 2 wks, u won't get protracted withdrawals?
WHY WON'T THESE PEOPLE DO BRAIN SCANS AND DO STUDIES???