Letter to the professionals
The Devastating Effects from Benzodiazepine Drugs
How Professionals can help and what roles they can play
Symptoms and possible recovery times
Resources for the patient
Drug Information Search and Reporting Sites
Written by: Michele Diamond for You're Not Alone Foundation
Thank you for all her hard work and care of others effected by Benzos
The Devastating Effects from Benzodiazepine Drugs
Written for the Medical Community
Intent: To Bring awareness to the Medical Community as a whole of the detrimental effects the these drugs can cause
To: All Doctor’s, Nurses, Pharmacist’s and other Professionals who are involved in the care of someone who is taking a prescription Benzodiazepine drug.
1) Benzodiazepines are becoming the next crisis and have actually been a hidden Pandemic for quite some time now due to the unrecognized signs and symptoms of tolerance and withdrawal from the drugs, which are not the same as an addiction issue. For decades patients have come together by finding one another on the web and have joined in unity to support each other as a community that have personally suffered the devastating effects from Benzodiazepines. In 2019, there were an estimated 92,000,000 prescriptions that were dispensed for Benzodiazepine drugs, in the United States alone. Advocates have been sending Citizen’s Petitions to The FDA for many years asking them to enforce stricter prescribing guidelines for these drugs. Included in the 2010 Citizen’s Petition were many personal stories from the patients/consumers who were harmed by the devastating effects that they were never warned about by their doctors. Of those people, many became disabled and permanently injured from the drugs. They lost their careers, income, relationships and marriages were destroyed, and many other losses were involved from their doctors withdrawing them too quickly off of these drugs and with no warnings that they would experience negative side effects coming off of them. This is no fault of the patient. They were never formally informed. Surprisingly, most doctors do not know of the harmful effects that Benzodiazepines can cause, and especially after long-term use which is after the 2-4 weeks that the package insert states. What we have seen over the last decades happening is that a patient will be withdrawn from a Benzodiazepine, they will start to become symptomatic and present numerous symptoms and behavioral changes and they have been diagnosed with having a Mental Health Condition when in fact, what they were experiencing was a Benzodiazepine Withdrawal Syndrome after the drug started leaving their system. A lot of those patients then ended up in the Mental Health community because they were told they have a Mental Health Condition. These patients then become poly-drugged from a Psychiatrist who believes the patient is presenting with a new or onset diagnosis of a Mental Health Condition. The patient usually cannot find any prescription drug that can quite make them feel comfortable or alleviate their symptoms from the Benzodiazepine withdrawal. The withdrawal syndrome goes on to be a Protracted Syndrome for a percentage of patients which can last months to several years. For some patients, the syndrome can be a very prolonged one and they can remain ill and the drug injury may last way beyond those several years, ultimately causing these patients a permanent disability. One of two things usually happen within a Benzodiazepine Withdrawal Syndrome. One: The patient has realized what has happened to them and is now aware that the Benzodiazepine itself has caused their symptoms so then less and less medications are needed to aid in the patients recovery and wellness. They know that time away from them will heal them.
Two: The patient will often be misdiagnosed, referred to Psychiatry and other Specialist's, and will usually fall into a broken Mental Health system that was never intended for those patients to begin with.
*The major issue here is that Benzodiazepine's have been strongly advised by the Manufacturer’s and The FDA to be taken "short-term,” but many physician’s are unaware all of the warnings and have prescribed them for more longer-terms such as 6 months - 1 year, 5 years, 10 years, and throughout the course of a patient’s lifetime. When the patient is ready to come off of the Benzodiazepine, they are then faced with the experience of an abrupt taper of say, a few days – 2 weeks which they have been instructed to do so under their doctor. This is very dangerous because life-threatening physiological effects can and will emerge. They are extremely uncomfortable for the patient and can have very serious patient complications. This should be avoided altogether with a proper drug-taper schedule and a strong working relationship between both patient and physician as a collaborative effort. A gradual taper schedule is recommended which should be guided and led by “both” doctor and patient “as tolerated by the patient,” which is very imperative and necessary for good outcome. Often times the symptoms that emerge are known to be very torturous to the patient and they live through a very agonizing experience, so many are put back on the Benzodiazepine at even higher doses. Many patients are not being properly monitored after the initial prescription. They are not being weaned off after the short-term period (2 of the recommended 2-4 week maximum use.) Adverse effects are misdiagnosed as other ailments and mental health conditions, when in fact the effects from the benzodiazepines are the cause of their symptoms. This is why the short-term use, (2-4 weeks) stated on the package insert, is imperative to follow. Benzodiazepines were originally intended for emergency situations such as adverse drug reactions. This is why particularly Ativan is widely used in the ER’s. Benzodiazepines are also widely used during surgeries of all kinds via IV sedation. A patient taking a benzodiazepine daily, can suffer devastating effects after the drug is removed. This is because the brain has become used to being “shut down,” “shut off,” or “suppressed” for beyond the originally intended and recommended timeframe. With one time use for those types of procedures, it is not as likely to have any detrimental effects on the patients. Chronic modulation of the GABA(A)-Benzodiazepine receptor complex, plays a major role in central nervous system dysregulation during abstinence of the drug. All patients who are taking these drugs also have potential for an adverse drug reaction, which may not be so obvious after treatment begins. **A slow and steady taper is best for patients, to prevent any serious complications but to also avoid the severity of the symptoms that will and can emerge from discontinuation. A slow and steady taper prevents the unnecessary cascade of drugs to follow. A full history of how the patient was and functioned prior to being prescribed a Benzodiazepine should always be documented and known for the most effective treatment for the patient going forward. Many of the severe effects from coming off of Benzodiazepines even as prescribed are Suicidal Ideations, Akathisia, Homicidal Ideations, Aggressiveness, Hostility, Severe forms of Depression, Uncontrollable crying spells and Dysphoric mood, a Paralyzing Anxiety/Fear/Panic, Uncontrollable Panic attacks, Derealization and Depersonalization, and in some cases Seizures and Death can occur.
The following are educational resources:
Professor Heather Ashton of The Institute of Neuroscience, New Castle University – The Resource Site for Involuntary Benzodiazepine Tranquillizer Addiction, Withdrawal and Recovery https://www.benzo.org.uk/
Professor Heather Ashton Manual – Benzodiazepines: How they work and how to withdraw https://www.benzo.org.uk/manual/index.htm
How Professionals can help and what roles they can play:
Going forward in the prescribing of a Benzodiazepine we emphasize the patient not be taking the drug longer than the recommended 2-4 week maximum period.
We ask that you take more of a collaborative approach with your patient(s) to slowly and safely taper the drug at the patient’s comfortability and also at the rate which is tolerated by the patient. This should be done over the course of several weeks (if on them for weeks), several months (if on them for months), and years if needed (if they were on them for years.)
We ask that you be aware while tapering your patient of any emerge of new or worsening symptoms and that they be recognized as tapering/discontinuation from the Benzodiazepine’s and not a return of symptoms.
We ask that you please be aware of how serious the process of withdrawing the patient can be. The following are things to be aware of while monitoring your patient: serious central nervous system reactions can start to occur, severe and unwanted withdrawal effects can happen, severe psychological and physiological anguish can begin for the patient while weaning their dose down. These effects can last weeks to months or months to years. Patients can become disabled from lack of functioning.
We ask that you be aware as the professional to the true effects from stopping these drugs which are not only the dependence and addiction issue but of a more serious one. Benzodiazepines have played a significant role in producing the calming effects that the patient has experienced synthetically over the course of the prescribing time. This is the reason why so many symptoms will emerge from the “hyperactive nervous system” after taking the drug away. These physiological, psychological, emotional, and physical symptoms occur from the down regulation of GABA-A receptors, thus producing the significant distress it has on the patient.
We ask that you taper your patient as slowly as possible and be very vigilant of the symptoms that will emerge such as severe akathisia which can be life-threatening. Watch for signs of suicidal and homicidal tendencies, unusual anger and/or acts of violence, and any unusual and abnormal behaviors during or after the tapering process. These are common in the withdrawal process.
We ask that you try to avoid any unnecessary or additional prescribing to the patient during tapering and withdrawal from Benzodiazepines (with good intentions of course to try to make the patient a bit more comfortable) because they will need to in fact taper those drugs in the future as well. This process of poly-pharmacy should be avoided. It has much potential to exacerbate Benzodiazepine withdrawal symptoms and can also stimulate the nervous system so intensely which can become very dangerous to the patient. Keeping the symptoms at bay is what we all want for better outcomes of healing.
Benzodiazepine withdrawal can be a very long and protracted experience for a percentage of patients and your support and encouragement are needed mostly because you are at the patient contact level. Your help and guidance as well as a platform for the patient to verbalize their experience would have lasting positive effects on them. Please listen to your patient and support them in any way you can. Reassurance is a great way for them to know that the symptoms they are experiencing are temporary and will go away with time away from the Benzodiazepine drug. Validation is something that we haven’t seen or heard of much with the Doctor-Patient interaction.
Symptoms and possible recovery times:
Keep in mind that due to the protracted effects from discontinuation, recovery times will vary according to each individual patient.
The most severe of the symptoms are: Akathisia, Suicidal thoughts and behaviors, Homicidal thoughts and behaviors, extreme panic, agoraphobia, paranoia, a paralyzed feeling (fear), other types of phobias, intrusive thoughts, repetitive and/or looping thoughts, uncontrollable crying, dysphoric mood, derealization and depersonalization, insomnia and many physical symptoms which include vertigo, severe nerve pain and muscle spasm and pain.
Recovery times will vary and do have a more broad time frame for healing according to the individual patient. Some patients go on to heal within a 6 month period. Some may take 18 months. Some may take 3 years. While others can take numerous years for their symptoms to subside. Unfortunately, some symptoms do not subside at all and the nervous system can become very overstimulated which can make it too difficult for the patient to feel a sense of calm and well-being. Some symptoms may grow to be at a lesser intensity as time goes by. This is why “time” alone is needed to regain strength and for the GABA-A receptor sites to go back to a normal way of functioning and for new and healthy connections to be formed.
While the patient is recovering and healing, please be aware that the effects from Benzodiazepines can result in disability, both temporary and permanent. Over the years, much insight and knowledge has emerged directly from the patients themselves who were taken off these drug too quickly and prescribed them beyond the recommended short-term use of the 2-4 weeks maximum. They have suffered severe medical, physiological and psychological symptoms (*most are misdiagnosed*) because tolerance, physical dependence and withdrawal symptoms can mimic a vast variety of diagnoses, both physical and psychological. **Being aware of any past or current prescribing of Benzodiazepines to your patient plays a very significant role in their current and future treatment.**
Resources for the patient: Online community support
There are Facebook support groups for patients: “Friends in Recovery from benzodiazepines,”
From glory to glory Benzo page,” (a positive Christian support group)
Inner Compass Conversations,” (community support amongst peers in the Benzodiazepine community),”
Tribute to Professor Heather Ashton” (a group dedicated to Professor Ashton who had a profound impact on the Benzodiazepine community as a whole)
Benzodiazepine Withdrawal Support” has a whole index of topics on Benzodiazepines which includes coping mechanisms and personal stories www.benzosupport.orgaph
Drug Information Search and Reporting Sites:
1) The following site is used by The FDA themselves to look up and reference all pharmaceutical drugs. Each drug includes its own “Medication Guide” that can be used by both Patient and Physician. “Boxed warnings”, “Precautions”, and “Adverse Reactions” are listed under each regulated drug. Daily Med: https://dailymed.nlm.nih.gov/dailymed/
2) There is an FDA Medwatch Reporting form that can be filled out by both Consumer and Professional. Please take the time to report any & all side effects, adverse effects and events that occur directly to The FDA. This is a very crucial piece to protect the safety of all consumers. The FDA gathers this information and data for what is called the “After-market experience.” It is used for the monitoring of any new events submitted. The data is then used to continually keep the public safe from drug harm and warn consumers by adding the new information to the Patient Leaflets, Medication Guides, and informing Physicians and other Professionals. Without this data, the FDA cannot change the Drug’s guidelines and warn the public of new events. Medwatch Online Reporting https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home Or call 1- 800-332-1088 to request a reporting form. Complete and return to the address on the pre-addressed form, Or submit the form by fax to 1-800-FDA-0178
Professor C. Heather Ashton, DM, FRCP, Institute of Neuroscience, New Castle University, England UK who has made a substantial positive impact within the Benzodiazepine community www.benzo.org.uk/ashcv.htm
https://www.benzoinfo.com/ Benzodiazepines: The Hidden Epidemic – Stanford Psychiatrist Anna Lembke Speaks Out
https://youtu.be/Ln1F2oANexw FDA Requiring Labeling Changes for Benzodiazepines – Dated 9-23-2020 https://www.fda.gov/news-events/press-announcements/fda-requiring-labeling-changesbenzodiazepines