If you’ve been following me for a while you know how opposed I am to the long-term use of benzodiazepines. These medications are only intended to be prescribed for no longer than 2 weeks at the most. But I really do think they should not be prescribed at all.
I was very pleased when Alison Page reached out to me asking if I’d share what’s happening in Massachusetts. It’s a proposed bill that would require informed consent for benzodiazepine use: Call To Action: Massachusetts Bill H4062 for Informed Benzodiazepine Use is Official
I’ve blogged extensively about benzodiazepine dangers and mention them when I present at conferences and on summits. Here are a selection of blog posts:
- The possible increased risk of Alzheimer’s disease (and I share some of Alison’s story in this one): Benzodiazepines linked to increased Alzheimer’s risk and other serious concerns
- Nicole Beurkens shares her experiences with benzodiazepines: Benzodiazepines do patients more harm than good
- The webinar replay of the talk I did for Hawthorn University: Say NO to benzodiazepines for anxiety! (webinar replay)
The Massachusetts Bill H4062 is calling for written informed consent from the doctor stating the risks of taking this class of drugs. Here are the Specifics of the bill:
Anyone receiving a benzodiazepine prescription will receive written informed consent from their doctor stating the risks of taking this class of drugs. The consent form will ensure that patient’s understand that benzodiazepines and sleep aids can lead to physical dependence, and in some cases, addiction. The informed consent form will also specify that this drug can, in some cases, cause an injury to the nervous system and dangerous and/or disabling withdrawal reaction. The consent form will also specify that long-term use is contraindicated.
Benzodiazepine prescriptions will be written on brightly colored paper to ensure that patients know that they are receiving a potentially harmful substance that could lead to physiological dependence or addiction.
No patient will be taken off benzodiazepines or sleep aids without their full consent. No patient will be “cold turkeyed” off their prescription. For patient’s choosing to come off, a safe taper schedule will be implemented.
Drug labels will indicate that long-term use is contraindicated.
If you would like to help this bill pass and gain momentum, Alison shares how you can reach out to Massachusetts state senators and representatives. They are also asking you to share your personal stories of benzodiazepine harm. These stories will be presented as evidence to the Joint Committee as they decide whether or not the bill moves forward. All the details on how to do this can be found here.
These are good initial steps to create awareness for both anxious individuals, and doctors who are not aware of the terrible effects so many suffer.
We certainly appreciate the efforts of people like Alison, who is a benzodiazepine survivor herself. She took prescribed benzodiazepines off and on for 16 months and was rapidly tapered off. She ended up with a severe central nervous system injury which has taken years to recover from. As a result of her experience, Alison is now an activist on behalf of psychiatric survivors and works to raise awareness about the dangers of psychiatric drugs and treatment methods.
One of her wonderful projects is the creation of an art book entitled Healing from Psychiatry: An Artist’s Perspective. She has close to 50 contributors from all over the world who have suffered or are suffering as a result of psychiatric treatments and medications.
Update 3/28/16:
Geraldine Burns worked closely with Representative Paul McMurtry to have this first of a kind bill filed in the United States. This bill was filed in Massachussetts on February 24, 2016, and it received the official bill number H.4062 – An Act Relative to Benzodiazepines and Non-Benzodiazepine Hypnotics.
Geraldine shared this information about her pioneering work in helping to get the word out about the potential dangers of benzodiazepines:
In 1999 I started the first Internet support group for people wishing to withdraw from tranquilizers or already off and having problems. This was the first group of its kind and before it closed had closes to 4,000 members internationally. The group was started to offer 24 hour/7 days a week support to people who have been made ill by prescription medications, to learn about symptoms of withdrawal, learn about tapering methods, and natural methods of healing.
She is dedicated to the responsible and informed use of addictive prescription drugs: Education, Advocacy, Research and Support. And she was instrumental in having Professor C. Heather Ashton, Professor Emeritus from the University of Newcastle write her manual “Benzodiazepines: How They Work and How to Withdraw” also known as The Ashton Manual. This manual has now been translated into 11 other languages and can be found online at www.benzo.org.uk
In 2006, Geraldine launched the website BenzoBookReview after she was given the rights by eleven internationally known authors of books that had been written on the subject of tranquilizers of which some were no longer being published. She worked to have some of them revised and updated so they could bring the most up-to-date information on tranquilizers and sleeping pills to the public.
Currently she is being filmed for the documentary As Prescribed which is a film project about benzodiazepine dependency and discontinuation syndrome. Here is a snippet about this documentary that is being produced by Holly Hardman:
There is a formidable health epidemic in our midst. Its sufferers tend to be “good patients” following doctor’s orders. Perhaps their doctors prescribed Ativan, Xanax, Valium, or Klonopin – common names for a class of anxiolytic drugs known as benzodiazepines. Perhaps the drug was given to calm nerves, promote sleep, balance moods, or just to make life a little easier. Too often these good patients begin to experience strange symptoms and develop mysterious illnesses that plague them for years, upending their lives. Too often they are told that the drugs could not be their problem. By following personal stories and investigating growing medical evidence, As Prescribed questions the prescribing practices and consequences of these popular, not-so-innocent drugs.
We appreciate Geraldine and Alison and everyone involved with this bill, and all the advocates like Holly and others who are working so tirelessly to create awareness.
Please do share your story with benzodiazepines too. The more who hear this information, the more can be helped. And please share this blog if you care and know of anyone using these medications and looking for help, and to folks who may be considering these medications or may be prescribed them in the future.
Update 3/29/16:
The Massachusetts Benzo Bill H4062: Informed consent for benzodiazepines and non benzodiazepine hypnotics was just scheduled to be heard by the Joint Committee on Mental Health and Substance Abuse on Monday, April 4th. The committee will then decide whether the bill moves forward to the house and senate, goes to study, or is denied.
If the bill “goes to study” it is essentially dead in the water until the next legislative session, and in that case, the bill often dies. It is important that we rally around the bill to make sure it passes during this session.
The bill will ensure that patients get informed consent about the potential dangers of benzos, if they are already on the drug, they will have the choice of whether or not to come off, and if they do choose to come off, a safe slow taper will be implemented. The bill specifies that it is the patient who decides whether or not they would like to come off their benzodiazepine.
What Can you do to Help?
- Attend the public hearing and testify on Monday, April 4th, 2016 at 1:00pm in Hearing Room A-1 at the Massachusetts State House
- E-mail your support of this bill. It is most important that the committee hears from Massachusetts residents, but anyone from around the world is welcome to write in support of Bill H4062.
Please see the comment from Alison Page below (on 3/28/16). She shares all the details on the above 2 steps: how to testify and who and what to email.
Update: 4/8/16
Alison emailed me with an update about the hearing for Bill H4062: Informed consent for benzodiazepines and non-benzodiazepine hypnotics. The hearing took place on Monday, April 4 at 1PM at the Massachusetts State House in Boston, MA.
She shared a new blog link with all the updates. This is an overview of what will be happening next:
The committee hearing the testimonies will be reviewing all of the written testimonies of the people unable to attend the hearing, and will then decide whether or not the bill moves forward to the House and Senate. The discussion, parts of which you can watch in the video below, clarified some important points in the legislation and gave survivors an opportunity to tell their stories.
Alison also shares some additional background about the bill and benzodiazepines, and a detailed account of what happened at the hearing (same link as above).
Alison also shares her personal experiences too and how emotional and yet cathartic it was to be there to testify:
There were a lot of tears at the hearing. The personal testimonies from survivors and caretakers were poignant, honest, vulnerable, and moving. This is the first time that the “benzo community” has had the opportunity to openly tell their stories in a platform that could influence legislation so that other people will not get harmed by prescribed benzodiazepines.
I was so proud to be there and witness the courage, camaraderie, resilience, advocacy, and vulnerability of fellow survivors. This is the first time I have met these people, who I’ve talked to online for years, and who I consider dear friends. This is the first time I have visited Boston since coming off benzodiazepines several years ago, so it was a personal victory, as well.
Testifying was cathartic, both for the individuals and for the “benzo community” as a whole. This legislation is our chance to be heard. As one survivor said, through tears, to the committee, “Do not let my suffering be in vain. I beg you to pass this bill.”
Action steps to keep the momentum going:
- Continue to send your stories
- Reach out to Massachusetts representatives, senators, and governors and ask them to vote yes on this bill
- Start talking about this and sharing stories in other states
- Follow updates and “calls to action” for Bill H4062 on the new Benzodiazepines Bill Facebook page
Thanks to everyone who went to testify!
And thank you if you commented here, shared this post and sent in your story.
If you have questions for Alison or Geraldine or me you can post them in the comments below.
How does someone find out how to get off benzodiazepines?
I have been on one for over 10 years and have tried to get off- but could not do it. Doctors, including Psychiatrists have no idea.
Mary
The best resource I know of is http://www.benzo.org.uk. You will need to educate yourself and your doctor and/or find a doctor willing to help you with the adjusted prescription. It does need to be done very very very slowly. Finding a good support group like http://www.benzobuddies.org is very helpful. Just be aware that this group and some of the other support groups say no to any supplements during the taper process. I find it to be very individualized and have many clients that see great benefit by using GABA, tryptophan etc. That being said some people tapering can only tolerate very slow amounts of the aminos (like a dab from a capsule) and some can’t tolerate any supplements.
Hi,
I was on Klonopin for almost 10 years. And though extremely difficult, was able to get off of it. I contacted a great organization called Point of Return in Malibu Californis and spoke with its founder Alesandra Rain. A doctor on her staff wrote weekly scripts to slowly lower my dose. It took 16 long months but I got off of it! I still suffer from PAWS, but it is getting better daily and it’s been over 3 years since I’ve been off. Shortly thereafter, I learned through some lab tests by Mensah Medical, that I was Pyroluric and had high copper. I’ve since been on their nutritional protocol along with healing
well ( mostly organic) and on some bio identical hormones. I got certified as a health coach a year and a half ago, and will be working with a psychiatrist
office to help people eat better and discuss nutritional supplements that can help instead of meds. The Lord helped me and He can help you too!
Best of luck on your healing journey,
Sharon Reagan
Feedback Health
Sharon
Thanks for sharing your healing journey. I love that you are now helping others!
Hi trudy… what a great idea.. it should just cover all antidepressive meds. I am in withdrawal from cymbalta and after a cold turkey and a trip to hell
I am now tapering slowly with the help from cymbalta hurts worse Facebook group. I would not have made it without the help from them.
I was on it for over 8 years for fibromyalgi and no doctors ever mentioned that I could have such a severe reaction coming of.i had never heard anything about withdrawal.
It’s a long way and it’s hard… but now I know how damage caused by the drugs we are giving. And never again are I am going to just believe in the doctors.
Best off all to you from denmark
Karina
I’m sorry to hear what you have been going through. And yes I agree we need this for antidepressants too. It’s a little know fact that the withdrawal is as bad as you describe, although Kelly Brogan does write about this in her brilliant new book “A Mind of Your Own” that just released last week. I think getting this benzo bill passed will be a great first step.
I’m so glad you found a good support group (I’m sharing the link here for others who’ll read this https://www.facebook.com/groups/Cymbaltahurtsworse/)
If you’re ok with it I’d love you to share some of your “trip to hell” with your withdrawal. The more we talk about it and share the more we can prevent this from happening to others.
Also I’m curious if the Cymbalta had helped your fibromyalgia symptoms? and if you’re aware of the benefits of 5-HTP and tryptophan for fibromyalgia? I’m actually going to be talking about this on the Fibrofix summit that airs in June. In the meantime here is a blog on the topic https://www.everywomanover29.com/blog/fibromyalgia-tryptophan-5-htp-for-anxiety-depression-pain-and-insomnia/
Can you give me the exact Facebook group for Practioners/colleagues? I put it in FB but couldn’t find it?
Thank you
Annie
Annie – I’m not sure what your question is – could you please elaborate?
Update on the Bill!
The Massachusetts Benzo Bill H4062: Informed consent for benzodiazepines and non benzodiazepine hypnotics (https://malegislature.gov/Bills/189/House/H4062) was just scheduled to be heard by the Joint Committee on Mental Health and Substance Abuse on Monday, April 4th. Only one week away! The committee will then decide whether the bill moves forward to the house and senate, goes to study, or is denied.
If the bill “goes to study” it is essentially dead in the water until the next legislative session, and in that case, the bill often dies. It is important that we rally around the bill to make sure it passes during this session.
The bill will ensure that patients get informed consent about the potential dangers of benzos, if they are already on the drug, they will have the choice of whether or not to come off, and if they do choose to come off, a safe slow taper will be implemented. The bill specifies that it is the patient who decides whether or not they would like to come off their benzodiazepine.
What Can you do to Help?
1. Attend the Public Hearing
On Monday, April 4th, 2016 at 1:00pm in Hearing Room A-1 at the Massachusetts State House, the Joint Committee on Mental Health and Substance Abuse will hold a Public Hearing on the bill. Anyone can attend and speak. If you do want to speak, here are the guidelines:
*The time limit for testimony is 3 minutes.
*Bring 20 written copies of your testimony. 17 for the members of the Joint Committee on Mental Health and Substance and 1 for the clerk. Leaves you a few extra.
*Sign-up to testify usually begins about an hour before the hearing. They take people in the order that they arrive and sign-up. So, if anything, try to be early.
*If you’re going as a group, one person can sign everyone up. That person will need everyone’s name and the bill you are testifying for. It’s H4062: An Act relative to benzodiazepines and non-benzodiazepine hypnotics.
*Legislators sit in a single file, but typically not in a prearranged order. They should have name cards in front of them.
*You’ll be testifying from a table in front of the committee. You’ll have a microphone.
*The best testimony is a) clearly intelligible to a smart legislator who – due to the broad nature of the job – may not have deep knowledge on the topic and b) not morally instructive, which is to say that it’s far better to demonstrate impact than make sweeping statements about moral obligation etc.
2. E-mail your support of this bill. It is most important that the committee hears from Massachusetts residents, but anyone from around the world is welcome to write in support of Bill H4062.
Please include the following information in your e-mail:
1. Full Name
2. Town and State (if you live within the U.S.)
3. Country (if you live outside of the U.S.)
4. Use “Bill H4062” as the subject line
5. If you are writing from outside of Massachusetts, include how this bill will affect your state/country. For example, if this bill passes in Massachusetts, you are hoping a similar bill will pass in your own state/country.
Here is draft which you can copy and paste, or personalize as you see fit.
Email to: Garrett.burns@mahouse.gov
Subject: Bill H4062
Dear Chairs and Members of the Committee on Mental Health and Substance Abuse,
As a resident of Massachusetts, I am asking you to support Bill H4062 sponsored by Representative Paul McMurtry. It is important that we take the opiate crisis seriously in our state. Research has shown that when benzodiazepines are mixed with opiates, they potentiate each other and are more likely to lead to an overdose resulting in death. (see article below)
Not only do benzodiazepines and opiates potentiate each other, but benzodiazepines are dangerous in their own right. Benzodiazepines and Z drugs can cause physical dependence or addiction, and in a sizable minority, can cause severe central nervous system injury which can take years to recover from. The injury can be so severe that people become disabled. (see article below)
Informed consent will ensure that patients know these risks before taking benzodiazepines and/or Z Drugs. Patients deserve to understand that this class of medication can cause physical dependence or addiction, can sometimes cause a central nervous system injury, and should not be mixed with opiates or alcohol.
http://www.southcoasttoday.com/article/20150802/OPINION/150809968
https://www.bostonglobe.com/lifestyle/health-wellness/2014/09/07/when-withdrawal-hardest-part/nyWtjexiyOWSpU1TkloVnK/story.html
Sincerely,
Name
Full mailing Address
Alison
Thanks for the update – this is very exciting! I’ll make sure this information gets out to my community right away.
PS Thanks again for reaching out to me about this and sharing your blog post with the information
Updated letter! Please use this one!
Email to: Garrett.burns@mahouse.gov
Subject: Bill H4062
Dear Chairs and Members of the Committee on Mental Health and Substance Abuse,
As a resident of Massachusetts, I am asking you to support Bill H4062 sponsored by Representative Paul McMurtry. Benzodiazepines and Z Drugs are very dangerous drugs for certain individuals. Benzodiazepines and Z drugs can cause physical dependence or addiction, and in a sizable minority, can cause a severe central nervous system injury which can take years to recover from. The injury can be so severe that people become disabled. (see article below)
The opiate crisis also intersects with benzodiazepines. Research has shown that when benzodiazepines are mixed with opiates, they potentiate each other and are more likely to lead to an overdose resulting in death. (see article below)
Informed consent will ensure that patients know these risks before taking benzodiazepines and/or Z Drugs. Patients deserve to understand that this class of medication can cause physical dependence or addiction, can sometimes cause a severe and disabling central nervous system injury, and should not be mixed with opiates or alcohol.
http://www.southcoasttoday.com/…/2015…/OPINION/150809968
https://www.bostonglobe.com/…/nyWtjexiyOWSpU…/story.html
Sincerely,
Name
Full mailing Address
I received this email in response to this post and have been given permission to share it in the comments anonymously. My heart breaks hearing about her terrible ordeal.
I’m sharing it here so we can get her story in front of more people and hopefully we can find someone who has insights on how she can recover some of her legal costs. If you’re reading this and have idea please let us know.
She has also sent this to the legislators in MA. They need to hear stories like this! And by sharing it here too we will also hopefully prevent this type of thing from happening to someone else. It’s why this bill needs to go through.
Here is what I received via email:
“Trudy, I have been on your list for quite awhile, finding you when I needed help from the issues of anxiety and benzodiazepines. As you suggested, I sent the following story to the attorney in Massachusetts. I really could use some help and relief in the legal fees I had to incur fighting this. If you know of any foundation or anyone that helps victim I sure would appreciate it. Also, if you know anyone who works at UCLA who could sign off in forgiving the legal fees their collections attorney has required my husband and I to pay, that also might work. Any ideas how to address this would be wonderful and thanks for spreading the word. Here is what I sent the MA attorney.
Hello, First I want to thank the state of Massachusetts for addressing the dangers of benzodiazepines. I live in Los Angeles and the drug has taken many a life in our Hollywood Community. The drug has great street value and is really an epidemic.
I will try to recap my horror story in as little time as possible. I got debilitating anxiety and Xanax was prescribed. The anxiety didn’t get better it got worse. The doctors told me that my dose wasn’t high enough and told me to take more. I took more and became suicidal from what is called the rebound effect. Basically I was having painful and bone chilling withdrawal symptoms in between doses.
My husband is a married family therapist and he followed the protocol that he has been trained to do. He called my doctor and she sent me to UCLA emergency Psychiatry. The intern there told me I needed to take more Xanax and sent me home. I went into a full tail spin which caused me to grab a knife and I was sitting on the floor wondering how to cut my wrists. My husband returned me to UCLA medical. The drug withdrawal unit did not have enough beds so they said I could voluntarily admit myself in the locked unit.
In this second emergency visit, a professor/Dr. overseeing the intern treating me recognized the rebound effect. They said I needed to get off the drug right away and they needed to monitor me because I could suffer seizures,stroke or death from the withdrawal. UCLA took me off of the drug cold turkey and gave me a couple other drugs known to create anxiety, Lexapro and Seroquel. I had pain and withdrawal symptoms that I would not wish on my worst enemy. I literally wanted to crawl out of my skin and die so that I could have some relief. After 5 days in UCLA, they released me even though I asked to stay. I told them that I was worse than when I arrived. My leg was convulsing and I had Akathisia which is a precursor to a suicide attempt.
I came home, and the next day tried to kill myself. Then I was locked up for nearly a month, the pills caused liver damage that nearly killed me. I started researching benzodiazepines and ran into Peter Breggin who is a very good champion against the perils of these drugs.
I realized that I couldn’t let this go by without formally addressing UCLAs lack of knowledge in titrating from benzos. UCLA is a teaching school and I felt this was an incredibly valuable lesson for them to learn. I knew they wouldn’t listen to me if I called and told them anything so I found a lawyer that would help bring suit against both UCLA and Phyzer which first made the drug through UpJohn. We found a study that they buried showing the suicidal side effects.
The case made it to court, we spent 9 days in a courtroom, right next to the room where OJ Simpson was tried. Suffice to say the trial had legs, but in the end, my lawyer, who worked out of his garage was no match for the money and manpower that UCLA had. We lost and I was stuck with over 100,000 in legal fees that UCLA had to incur. The judge came and said, I hope you get better, it is sad that somebody has to win and somebody has to lose.
Before this I worked as an actor in the entertainment industry and was a teacher in the inner city. This created more anxiety. I once worked happily in the entertainment industry and as a teacher in the inner city. This course of events has robbed me of my health and I am now on permanent disability, my husband and I had to declare bankruptcy, we are required to pay UCLAs damages which my attorney had ill informed us that we would never have to pay. We have been hunted down by their collection attorney and this is a hell that I just can’t get out of.
If you know of any way I could get some relief from having the pressure of paying these legal fees, please let me know. Is there anyone that you know who could talk to UCLA to forgive the legal fees? The bill you are trying to pass more than proves that this is an important issue and I was on the right side of it at trial.
The case was called Finstrom vs UCLA, Hundreds of Thousands of dollars went into the case in addition to the time my attorney and I spent. There were many articles researched and there is a wealth of information that came out at trial. I would love if somebody could get some benefit out of it.
Thank you again for what you are doing in this bill, it needs to go national”
I am trying to withdraw from and stop taking the benzo Alprazolam. I take 1 milligram in 24 hours, 1/2 morning 1/2 evening have taken this since October 2012 as nothing else will help!
I feel it is having very terrible mental, emotional effects. I went to expensive doctor to try to get some alternative way to deal with the terrible symptoms caused by PGADS. This doctor has proscribed diazepam suppositories (10 mg) to be used each night for 30 days then twice a week for 30 days. And Gabapentin pills (100 mg) taken 3 times a day.
I am desperately needing to stop the benzo yet am now supposed to use a benzo to supposedly stop my symptoms (?)
Can anyone tell me if : the effects of the vaginal suppositories will be different from taking pills? Will this diminish or reduce, alter the negative effects so that I can gradually reduce the benzo pills and stop them completely? Or….will using this just amplify my dependency and make authentic withdrawal even more difficult?
I am feeling desperate and really need to be knowledgeable about this as the medication will arrive in 3 days and I do not want to use it if it will not actually help me and make things worse!
Any help would be SO very, very appreciated.
Denay
I am sorry you’re having such a terrible time. I am not a fan of using gabapentin for a benzodiazepine taper as this medication has it’s own set of problems. I have heard of issues with diazepam (a benzo) suppositories too. I’ve been inquiring about how effective a GABA suppository may be and that could be worth looking into. You could make even it yourself with GABA and a non-allergenic cream. I encourage you to join the benzobuddies.org support group as there are 1000s of people who could share what they have experienced.
I would also look at addressing possible low GABA and low serotonin to help with the PGADS and benzo taper. Just be aware that benzobuddies.org says no to supps during a taper. I find that nutritional support helps.
There is a comment on PGAD here that may be helpful for you https://www.everywomanover29.com/blog/anxiety-summit-targeted-individual-amino-acids-eliminating-anxiety-practical-applications/
My benzo story is so different that I’m wondering what it means.
I took alprazolam three times a day for more than two years.
Eventually, it didn’t seem to be helping as much as it initially had, and, during the entire course of treatment, I had occasionally experienced paradoxical reactions. So I stopped taking it. I didn’t taper off because I didn’t notice any withdrawal symptoms (obviously, this was stupid and I was lucky: please, no one else try this!).
I am very grateful to be in the minority here. But is there any clinical significance to quitting a benzo cold turkey without any difficulty?
Thanks for sharing and yes it’s not a good idea to stop cold turkey – I’m glad you mentioned that. Check out this blog post that lists contributing factors in those who have experienced adverse effects when using benzodiazepines as prescribed or when tapering https://www.everywomanover29.com/blog/world-benzodiazepine-awareness-day-say-no-benzodiazepines-anxiety/ I’d love you to share if any of these applied to you?
Could you please give me some contacts to doctors,therapist in Rhode Island. Who could truly help with tapering from klonopin, Thank you.
Doris
The Benzodiazepine Information Coalition has a list here https://www.benzoinfo.com/doctors/ I recommend doing your homework and interviewing doctors to make sure they will work with you and support what you want to do. I do also find that nutritional support is imperative to making the taper less of an issue. And this does include GABA despite what you may hear.
Just off of 30 years on Clonopin. Very slow taper which went ok until I finally got off the last dose. Now it’s hard. Wish I had someone to share notes with.
Is there a support group in Boston area that meets for this? Any local clinic that specifically workS with Benzos?