Colorado Consortium’s 2021 Annual Meeting held a special session entitled Benzodiazepine-Induced Brain Injury: The Hidden Prescription Epidemic.
Download slides here
The session featured presenters:
Nicole Lamberson, PA, of Benzodiazepine Information Coalition’s Medical Advisory Board
John Staight, patient advocate
Alexis Ritvo, MD, co-chair of Benzodiazepine Action Work Group
D.E. Foster, co-chair of Benzodiazepine Action Work Group, Benzo Free Podcast, Easing Anxiety
Moderator: Jamie Feld, MPH
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 boxed 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 to increase knowledge about safer prescribing and deprescribing of benzodiazepines.
Where can I find John Staight’s testimonial? I have a very similar story and want to share his with a new psychiatrist I am going to to see if she can help me taper off over 30 years of Xanax. I am 73
I have been suffering 8 years since my experience with 40 years of prescribed xanax use and doctor retires, new doctor said i can take 5 mg Valium then break 5 mg in half take the halfves next 2 days day 4 off.then he went on vacation. I was in er eventually with acute delirium hallucinations psychosis everything horrible that could happen in withdrawal this severe. I’ll not live long enough to undo all the damage and ptsd from hallucinations and being trapped in su conscious mind learning why our mind protects us from full availability of our subconscious minds data.
I was prescribed 6mg Xanax a day plus 25-50mg of Temezapam and Wellbutrin. I was already on 70mg of methadone through MAT and an epilepic. My doctor decided to take me off everything COLD TURKEY even my depression medication, not my MAT thankfully it was not prescribed by him. I asked him wouldn’t I have seizures if he did not taper, he said you already have them and walked out. Over the next three months I lost almost 30lbs and another 20lbs in the next four. I could not stand up half the time or I would and I’d fall. When I’d walk my body would pull hard to the left lots of times until I hit the ground. I had dizziness, double vision. It felt like the floor was moving at all times. I went through severe withdrawal. I had multiple ER visits some by ambulance where I was told I just had a migraine or was being dramatic. I almost took my life on multiple occasions. That was almost 15 years ago.
After the first year it got better but never completely. I have never got back my memory I can’t remember anything. I used to be a great speller and won awards for spelling but now I struggle to spell very easy words. I have severe anxiety much more than I did as well as intrusive and distressing thoughts. He should have been sued. It’s on record but I did not realize how wrong it was until years later. He could’ve easily KILLED me. Thank God I am here today. I was his patient before at his own office then moved with him to a new facility. I was told later by an employee that he had to go in front of a board of doctors at the new facility to explain why he was prescribing those drugs and the amount. Instead he just cut me off. It should also be that if they have given medication like this to you then there is a process for another doctor to taper or whatever so you don’t almost lose your life. Never did I need that much he over prescribed me. During the time he prescribed these medications at these high doses my life fell apart like completely almost died in a car accident dui, arrested many times. Before this I was never in trouble with the law for anything. He knew I was on methadone and knew do to drug use. Those amounts were too high to have anyone on but especially someone on 70 mg methadone a day. My life was falling apart he knew this but continued to prescribe. My family took me to an appointment I didn’t remember because I was sedated in the waiting room “nodding out”. My family said look at her, she is a mess, she is on too much, and PLEASE DON’T write that. But he did not care he continued to write at these amounts until almost 2 years. It has taken many years to try to rebuild.
I’m 86. What do I do. I did 30% taper over 15 months. I got sick and daughter Updosed me for next year and longer. I’m awful
Sick. In protracted withdrawal. What can I do now. Taper again ?
Please help I was on Ativan for 28 years then tapered to quickly. I have no one to help me and I’m going through the most terrifying thing ever. I’m being tortured alive, while medical staff makes fun of me!
I am a teacher, professor, RN in OR, and surgeon pulling 120 hours a week. I have been on benzo’s for 40 years beginning in an eating disorders unit for anorexia in 1980, a gift from my father who wanted the perfect Ivy League daughter. They fed you a steady diet of clonazepam and reglin to make you eat. After several of the best recovery centers, I still struggle. After marrying a man who killed his wives for their estates, I he ran of my skull with a car giving me a TBI to which Dr’s could not believe I was alive. My mother an anesthesiologist and also OR RN told the trauma unit it was my faith that held that car up. 2n attempt, made me do ECT 10 sessions when then did not know about the head injury that kept me in a coma for over a month with sever memory loss. After 40 years of benzo use and the above, I have tried to come off the Klonopin at the best treatment centers in the world but with the above, it impossible to come off completely. I take about 3 maybe 4 mg’s a day, titrated down to 1.2 pretty quickly and have had 2 seizures which I am prone too. I moved from California to Idaho where health care is horrible. Is it possible to come off? My professor at Stanford and Harvard said minimum 22 month detox and even at that probably no. What do you think?
Here is my experience with the stages of long term Benzo use. I am recovered 7 years from long term benzo addiction. Detoxed cold turkey, had no one here to help me come off them medically. I used these drugs as prescribed due to an anxiety disorder brought about by life circumstances. I continued to use them thinking they were harmless. In my experience there are four stages of long term benzodiazepam use. I found a study from New Zealand that described my experience. The first is cognitive decline. The second is paranoid thinking. The third is anti social behavior and the fourth is psychosis. I can describe passing through each stage through my own experience. I am now 73 years old, getting off the benzos at age 66. The recovery has been very long and I feel I will always feel some of the effects of that drug and my consequences of taking them. I spend a lot of time using techniques to help with neuroplasticity recovery, which at my age is important anyway. I will admit during the last stage of my addiction to the benzos I added alcohol to the mix. I am lucky to be alive. There was never a “high” to using the benzos. I used them in order to remove the anxiety, which at first it did, I believed they removed any and all feelings. All social skills were gone. I am grateful you are bringing the use and misuse to the medical community. All of my doctors have heard my story and emphasis on the dangers of this drug and it’s prescription. Xanax was the drug I ended up with, starting with clonzapam. Any word with “pam” in it is not good. I will always speak out about the evils of benzodiazapam, and it’s misuse.
Hey sherry iam sorry to hear that. Was it taking Xanax and how many a day. Just asking because I have a similar experince. When I was 18 I went to a psychiatrist by myself and told her I have problems paying attention and tired. Automatically prescribed me adderall and XANAX. I was never told or given any information about the dangers of either medications. Fast forward 3 years and I was on 6 MG of XANAX A DAY. I was never educated on this just thought she knows, She’s a doctor, she cares! At 24 my job took away my Healthcare. THE PSYCHIATRIST THEN REFUSED TO TREAT ME ANYMORE. I BROKE DOWN AND I WAS IN A BASEMENT WITH LIGHTS OFF ALL BY MYSELF DARK AND DAMP FOR 5 MONTHS. Finnally I managed to gather myself to call catholic charity’s to help me. They ended up putting me back on a benzo Klonipin. I will never feel the same again. I’ve lost everything, my rights, A business I started up called Hot-can. The purpose of my product was to help disaster victims, the military, the starving globally etc. I even had a deal with WEGMANS A HUGE GROCERY CHAIN. BUT SADLY It has led me isolated in my room all day tryn to get through the day. My anxiety is ruining my life. Iam 38 now and on disability because of the debilitating pain I still feel from that.
I Never had support from family friends etc Nobody Ever! I WOULD Have DIED IF I HAVENT PULLED EVERYTHING TOGETHER JUST TO MAKE A PHONE CALL. SHE IS STILL IN PRACTICE TODAY FROM 2006-PRESENT BECAUSE I HAD NO IDEA WHAT TO DO MY SELF. So I was just wondering what should I do where to go from here. I live on monthly income and most of it goes to medicine and rent. I lost 13 years and counting of my life. How do I survive. I need a lot of therapy’s but have no money and state insurance.
Hey sherry iam sorry to hear that. Was it taking Xanax and how many a day. Just asking because I have a similar experince. When I was 18 I went to a psychiatrist by myself and told her I have problems paying attention and tired. Automatically prescribed me adderall and XANAX. I was never told or given any information about the dangers of either medications. Fast forward 3 years and I was on 6 MG of XANAX A DAY. I was never educated on this just thought she knows, She’s a doctor, she cares! At 24 my job took away my Healthcare. THE PSYCHIATRIST THEN REFUSED TO TREAT ME ANYMORE. I BROKE DOWN AND I WAS IN A BASEMENT WITH LIGHTS OFF ALL BY MYSELF DARK AND DAMP FOR 5 MONTHS. Finnally I managed to gather myself to call catholic charity’s to help me. They ended up putting me back on a benzo Klonipin. I will never feel the same again. I’ve lost everything, my rights, A business I started up called Hot-can. The purpose of my product was to help disaster victims, the military, the starving globally etc. I even had a deal with WEGMANS A HUGE GROCERY CHAIN. BUT SADLY It has led me isolated in my room all day tryn to get through the day. My anxiety is ruining my life. Iam 38 now and on disability because of the debilitating pain I still feel from that.
I Never had support from family friends etc Nobody Ever! I WOULD Have DIED IF I HAVENT PULLED EVERYTHING TOGETHER JUST TO MAKE A PHONE CALL. SHE IS STILL IN PRACTICE TODAY FROM 2006-PRESENT BECAUSE I HAD NO IDEA WHAT TO DO MY SELF. So I was just wondering what should I do where to go from here. I live on monthly income and most of it goes to medicine and rent. I lost 13 years and counting of my life. How do I survive. I need a lot of therapy’s but have no money and state insurance.