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Benzodiazepine Information Coalition

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Nonprofit Overview

Causes: Health

Mission: Benzodiazepine Information Coalition is a non-profit organization that advocates for greater understanding of the potentially devastating effects of commonly prescribed benzodiazepines such as Xanax, Ativan, Valium, and Klonopin, as well as prevention of patient injury through medical recognition, informed consent, and education.

Target demographics: prescribers and compliant, benzodiazepine injured patients

Geographic areas served: United States

Programs: awareness campaigns, policy advising, education

Community Stories

35 Stories from Volunteers, Donors & Supporters

Janet K.2

General Member of the Public

Rating: 5

This organization provides invaluable information and resources for individuals whose lives have been impacted by doctor prescribed benzodiazepines. I wish this organization had been in existence when I was searching for help because any of the doctors I encountered offered nothing except more drugs and dangerous advice and my entire life was ruined because of it.

In 2002 I was prescribed a benzodiazepine when my blood pressure rose to a dangerously high level due to the stressors of caring for my husband who was paralyzed after falling off a roof. The dose I was prescribed pretty much insured I would become physically dependent within a few weeks, as well as extremely anxiety ridden - something the doctor attributed to trauma instead of the drug. This drug was responsible for not only making me an anxiety ridden mess, it changed my personality, decision making ability and caused me to become VERY suicidal. After 8 years I finally found a place that helped me get off the drug with a rapid detox but it took me another 3 years for my body to fully recover.

During the eight horror filled years I was on this drug I searched endlessly for answers but found very few. I believe if this organization had been in existence, my years of suffering would have been much shorter and I would have gotten help sooner. I am grateful for all the work the founders of this organization have put in to provide such a wonderful resource for people!

1

Volunteer

Rating: 5

Finding the link here to FDA Medwatch site made this the first time I felt I had found a way to bring some offical attention to this horrible recovery process that my wife has been suffering through for over a year. Before that all my attempts to reach out to the medical profession had fell on deaf ears or was dealt with by the ostrich method. My frustration in not understanding for 15 years that the drug that was supposed to be the cure for her anxiety was in fact the curse my wife suffered through and caused all the changes I believed were caused by her pain meds is in need of an outlet to correct that injustice. Any group that helps bring awareness to the public, hope to the victims, change and education to medical professionals whom sorely lack an understanding of what suffering they cause is one I will fully support. My goal is to get the word out about the FDA Mediwatch reporting site. The one I filled out with my wife will be lost alone but hundreds of thousands of people have been affected in someway by this over the years and if they all use their voice a difference can be made.

1 stblues

Client Served

Rating: 5

 In 1996 I was prescribed klonipin first for anxiety but it wasn't very helpful for that, but since I thought I found it helpful for sleep the doctor said at least it's helpful for that and that it was often prescribed for sleep, (always taken as directed).  By 2006 I was so cognitively and memory impaired, plus serious anxiety and depression, I had to go on disability.  Lost my job, house everything!  Even then doctors didn't know benzodiazepine tolerance and major side effects were the culprit. By in 2011 the nasty physical effects hit. I went from easily being able to walk 6 miles to struggling to walk 1 mile with serious muscle weakness, pain, very fast heart rate, heart palps. I searched online and found the answer at: benzo.org.uk  .  It turns out millions around the world have become physically dependent, injured. Many have been lost to suicide because of the horrendous symptoms benzos can cause. Others have died from seizures and other health complications caused by cold turkey removal of the drug.

I used the Ashton manual to taper for 15 months.  Now 56 months post taper I am still very much disabled with severe cognitive and memory problems, severe fatigue.  I have a little better physical abilities now and the total hell tapering was is mostly passed.  The above link is an excellent source to understand the serious problems with benzodiazepines and the damage they have caused since librium was introduced in 1960, and Valium soon after.  For more information see: benzo.org.uk , benzoinfo.com , and  Cepuk.org

Previous Stories
4

General Member of the Public

Rating: 5

I lost 21 years and counting to a benzodiazepine, always taken as directed, and wish a outstanding organization like BIC had existed before I accepted taking this life destroying drug.

1 Lisa B.1

Client Served

Rating: 5

Benzodiazepine Information Coalition (BIC) has led the way in gathering and providing information about the dangers of benzos and how to taper off of them, along with so many other resources (for patients and their families, doctors and the general public). Thank you, BIC, for your dedication to this life saving cause!

Previous Stories
2

Client Served

Rating: 5

Benzodiazepine Information Coalition has consistently presented extremely helpful information about the horrific dangers of benzodiazepines. As benzos, literally, almost cost me my life, I am SO very grateful for this reputable resource, and for its ongoing efforts toward awareness and change! Thank you, BIC!

1 Michelle M.4

Volunteer

Rating: 5

My experience with Ativan. A Benzodiazepine medication.


I got physically dependent on 1 mg of Ativan /Lorazapam per my doctor/s advice to go on this medication for anxiety issues. It became ineffective after a year or so. I was still having uncomfortable anxiety so I was told by my doctor I had to up my dosage to 2 mgs for it to be ‘effective’.

( He explained this was the only way to do it since this pill was no longer working at the 1 mg dose.)

I am a rebel by nature and this did not sit well with me. Instinctively I didn’t feel good about upping my dose after doing much research online about the long term affects of Benzodiazapenes. I did MAJOR research and discovered through Dr. Heather Ashtons website http://www.benzo.org.uk/manual/ among other reputable websites that this medication was NOT to be used long term (only for short term anxiety)

I mentioned this numerous times to the doctors and also to many pharmacists who ALL assured me I would be ‘fine’. I was told often ‘1 mg of Ativan is NOT a big deal. There are many patients who are on far higher doses’, which made me feel it was safe to continue.

I went back on my .5 mg dose (and sometimes even 1 mg) a few times during this long process/ordeal just so that I could have my ‘brain back’.

I again decided to try to taper off the medication myself, slowly (with the help of an online Benzo Support group) and a few close friends who had successfully tapered off. I did not want to be on this medication the rest of my life!

My goal was to GET OFF THE BENZO TRAIN!! That was my ultimate goal and my motto it seemed.


‘GET ME OFF THE BENZO TRAIN!!’ was my mantra.
I did finally get off this med (thankfully)after suffering scary withdrawal symptoms (too many to mention here), even though I did my taper very slowly.

I decided on a dry cut taper even though many Benzo Support Groups said a water titration was the only way to successfully get off of Ativan. That confused me a lot and frightened me too, to be honest, because the water titration taper seemed too confusing to me and the dry cut method felt more ‘doable’ to me.

So I began my long ‘turtle taper’. I went from 1 mg a day to .75 (held at that dosage for months), then cut to .5 mgs, (held at that dosage for months) then .25, .175 then finally zero. It was a HELLISH experience because my brain was zapping and my anxiety at times was off the charts, all while trying to maintain my art gallery business and travelling alone around the country in my U-HAUL selling my art at art festivals.(I reinstated a few times because I had to be able to function, because of financial reasons I could not afford to lose my business because of the withdrawal symptoms).

So, a few times during this taper period I did reinstate — went back to my 1 mg dose but very rarely.

Throughout this long ordeal I went to various clinics, Psych doctors, etc and was ALWAYS told that 1mg ativan was ‘nothing to be concerned with’. One psych doctor at Cherokee Health Services in Tennessee when I told him I want to taper OFF this Lorazapam said

‘WOW Most patients want to get ON the benzos. Ive never met anyone who want OFF this pill before’’.
I then asked if he knew of anyone who successfully got off a Benzo medication, and he said ‘NO. Not without extensive inpatient help!”. GRR! That did not help me at all and left me feeling more alone and frightened. I left the office frustrated, sad and enraged.

I tried 5 times after that point to taper off and it finally worked 3 1/2 years ago. It might have been the hardest thing I’ve ever done to get this damn benzo medication out of my system. I am very proud that I did it and I have been Benzo free since that time.

I do feel I might have some residual brain damage because even today my anxiety which I went on this pill to remedy has returned. Some days the anxiety feels even more severe than prior to going on the Ativan.

In my opinion the medical community is responsible for my dependency — no doubt about it. I’m currently writing a book about this experience. Luckily I have saved all of my medical records to refer back to.

I hope no one has to go through this hell in the future. MEDICAL COMMUNITY should be ashamed.

General Member of the Public

Rating: 4

Emotional support groups are important for those of us in benzodiazepine withdrawal, and I am in one, but Benzodiazepine Information Coalition offers strictly fact based information that I would otherwise not have access to.
Seeking out accurate information about benzodiazepines is often a difficult and confusing and usually, ultimately futile effort. BIC does some of the research for me and I appreciate that.

1

Professional with expertise in this field

Rating: 5

Benzodiazepine Information Coalition has a long-overdue and much-needed mission. As the only nonprofit organization representing and advocating for the largely-underground community of prescribed benzodiazepine-dependent sufferers, they provide an invaluable service to the world through information, awareness, and education around this iatrogenic medical disaster where it is grossly lacking. I fully support this nonprofit and believe they are doing great work.

1

General Member of the Public

Rating: 5

Love this nonprofit and the information they provide. The people have more information than any medical providers. Keep it going!!

3 threadholder

General Member of the Public

Rating: 5

My video tells a lot of my story, that sadly, does not have an ending yet. What I would give to be able to write it at this moment!
In case there are any issues with the video I posted, I'm sure you can find it on YouTube, especially if you put in..."Surviving Benzo Withdrawal Hell". I have many.

I want to thank you again for giving us much needed validation and support. I'm am beyond grateful for the videos and stories that you share, and for all you're doing to advocate on behalf of so many of us who wish we were in the position to do more! I pray your efforts will not go in vain in the long run. I don't believe they will, as you are aiding in bringing change as we speak! There really are no words to truly espress the proper gratitude!
May God continue to bless you efforts as you are blessing so many around the world!!!

May peace and hope come daily to us all.

Shelly Johnson

(It does appear that the last part of my video was cut off here, but should be complete on YouTube. I did go on to thank your organization even more!!!)

2 Andrea N.1

General Member of the Public

Rating: 5

Benzodiazepine Information Coalition has helped me understand what I'm going through by consistently resarching and presenting facts. This organization helps thousands of us who are suffering from this class of medications. As well as being the voice for the thousands of us who are too ill to fight for ourselves. Superb organziation.

2 Wendy B.1

Volunteer

Rating: 5

Wonderful organization fighting all the misinformation about benZodiazepine medications, instructing public and medical professionals about safe proscribing, and long term harm and disability caused by taking them as prescribed.

2

General Member of the Public

Rating: 5

Great group trying to bring awareness to problems with benzodiazepines. As a family member With a loved one who has been damaged by benzo's I am very happy to see a group trying to bring this to the forefront. They have lots of interesting articles and information about this under recognized problem.

2

General Member of the Public

Rating: 5

I discovered the Benzodiazepine Coalition while reading a self written obituary by a woman who suffered more in her final months from the withdrawals of a Benzodiazepine than from Ovarian Cancer. My 89 yr old father was prescribed Xanax more than 10 years ago. I strongly believe his quality of life has been destroyed because of this drug. At his age, I know he will never be able to tolerate withdrawing
from this medication

3

Volunteer

Rating: 5

Benzodiazepine Information Coalition is a much needed organization helping to raise awareness of the dangers of these drugs - even taken in low doses and exactly as prescribed. Dr's seem to be unaware and unwilling to learn about the damage these drugs can and do cause when taken long term (more than 2 - 4 weeks) - diagnosing side effects and withdrawal as new or underlying issues. Considering that these drugs are handed out like tic tacs and promised "safe and benign in low doses" - education is needed. If you don't believe me - just do a google search for "benzodiazepine withdrawal" and what you will find is compliant patients who took low doses and exactly as prescribed - going through hell trying to free themselves with little to no support from their Dr's. They are the only organization devoted only to benzodiazepines. They are neither anti-drug nor anti psychiatry . They are for educating physicians and patients on the many issues that can arise from this particular class of drug. And they are doing a bang up job!

3

Donor

Rating: 5

BIC is doing the groundbreaking work necessary to accomplish real change in how these meds are prescribed and how patients are cared for while on and getting off them. The leadership is relevant, solid, experienced, and individually outstanding and trusted in their fields. I have already seen great progress and important movement in the set goals which will change and save many lives.

2 Lori J.1

Volunteer

Rating: 5

Always truthful and informative. As a benzo survivor, this site is a godsend to the benzo community. It is my sincerest hope that medical professionals will utilize this site for information on benzodiazepines that they did not get in medical school so that prescribing practices can be more in line with what these drugs can and cannot do over the course of time. Benzo Information Coalition has life-saving information for anyone who may be prescribed a benzo by their doctor for any reason.

2

Board Member

Rating: 5

I am a physician, director at BIC, and benzo withdrawal sufferer. We are the only nonprofit in the US that is dedicated to raising awareness about the dangers of benzodiazepines. I became involved with this organization because I believe the general public and medical community needs better education about benzos such as Ativan, Xanax, Klonipin, and Valium. We are doing great work with a number of projects in the works and have the potential to help save countless patients from harm.

3 Charles U. F.

Client Served

Rating: 5

Provided information that has changed my life forever , for the better. Thank you!

3 Kim M.1

Professional with expertise in this field

Rating: 4

Their information is good and needed. I have had some personal experience with some of
these drugs and I wouldn't advise people on there long term use'

3 Jarett B.

General Member of the Public

Rating: 5

They are the only people taking this issue seriously.