A common problem brought to the attention of Benzodiazepine Information Coalition (BIC) is the failure of patients and prescribers to recognize or properly diagnose problems that arise secondary to chronic benzodiazepine prescription.
How does this come to be? A patient is prescribed a benzodiazepine, often on their first visit and frequently for a relatively minor issue. Because benzodiazepines can be fast-acting and are quite effective in the short term, the patient will often experience immediate relief of their symptoms, leading them to believe the drug is an effective long-term solution to their problem.
The prescriber then decides, against nearly all guidelines, that the benzodiazepine is a suitable treatment for the patient’s presenting complaint and goes on to prescribe it long term, usually without informing the patient of the risks. Sometimes patients are provided the occasional addiction disclaimer: “these drugs can be addictive, but you don’t have an ‘addictive personality,’ so you should be safe.” This “addiction disclaimer,” while partially true, is incomplete and gives patients a false sense of security that, so long as they do not abuse the benzodiazepine prescription, there is no other cause for concern with the drug. If compliant patients later develop problems related to the drug, this initial misinformation impairs them from considering the benzodiazepine as a potential cause.
With continued use, sometimes within weeks, sometimes taking years, the patient’s health may begin to decline, often with seemingly no explanation. The benzodiazepine is usually never considered as the cause by the prescriber or by any other specialist they see. Some patients consult numerous specialists in this time, chasing their tails in search of answers to their mysterious ills, and still do not receive a proper diagnosis. After numerous tests and sometimes the passing of many years, a few lucky patients discover, usually on their own, that the long-term benzodiazepine prescription was responsible for their problems all along. This common experience, and the medical profession’s inability to recognize it, can destroy a patient’s quality of life, often leading to disability and sometimes even death. In addition, it may wreak havoc on the patient’s financial stability, wastes the time and resources of medical providers, and is a drain on taxpayer and insurance company dollars.
Why Are Patients Experiencing These Symptoms?
There are three main reasons patients can experience such severe symptoms from taking benzodiazepines as prescribed: side effects, interdose withdrawal, and tolerance.
Side effects, or adverse effects, of the drug: The available literature around benzodiazepines leaves much to be desired; what we don’t know about benzodiazepines could fill a warehouse. It is clear, however, that benzodiazepines can impact many systems in the body and disrupt neurotransmitter functions that play critical roles for healthy functioning. Because of this, the drugs carry a long list of known potential side effects as well as many reported unlisted effects. The drugs have been grandfathered into medicine as “safe” without enough scrutiny, perhaps due to their low overdose risk when used alone. The fact is, however, that the benzodiazepine class of drugs are grossly understudied—there are no major studies on long-term use or outcomes in patients taking them for more than a few months—as well as the fact that it appears they have never been held to modern FDA standards.
Interdose withdrawal: Interdose withdrawal describes the phenomenon when withdrawal symptoms emerge in between scheduled doses of a patient’s benzodiazepine. It is a red flag that physical dependence is developing or has developed. Interdose withdrawal can occur because the patient is not dosing frequently enough respective to their benzodiazepine’s half-life, such as taking a benzodiazepine solely for sleep at night. If the patient is on a short half-life drug and is only dosing once per day, interdose withdrawal is likely. Of course, patients do have individual variations in how they metabolize drugs; some may be rapid metabolizers, so interdose withdrawal should still be considered even if they are on a long half-life drug. BIC is contacted by many patients who express being forced to dose short half-life drugs like Xanax and Ativan around the clock, sometimes up to 6 or 8 times per day, in an attempt to stave off interdose withdrawal.
Tolerance, or tolerance withdrawal: Tolerance, as described by World Benzodiazepine Awareness Day:
When the receptors in the brain become adapted or accustomed to the action of the original dose of BZ, more of the drug is needed in order for the desired therapeutic effect (or the original effect at the original dose) to be achieved. This often develops with regular (long-term, past the 2-4 week recommended guideline for use) use and is known as tolerance.
So, if a patient develops tolerance to their benzodiazepine without increasing their dose, tolerance withdrawal symptoms will emerge. This state of tolerance then requires an increase in dose if symptoms are to be staved off. This correction is only a band aid, however, as tolerance will occur again when the patient becomes acclimated to the new, higher dose.
All three of these issues illustrate how critical it is that a prescriber follows the recommended guidelines of short-term benzodiazepine prescription, limiting them to 2-4 weeks use at most, and, if detouring from the guidelines, informing the patient of the risks of doing so. Two out of the three causes—interdose and tolerance—are completely preventable by simply adhering to prescribing guidelines. Furthermore, if a patient does develop side-effects from a benzodiazepine, it is much simpler and safer to withdraw a short-term patient who is not yet physically dependent than it is to attempt to withdraw a long-term one who is.
Medical Treatments and Misdiagnosis
The following list details some common disorders and symptoms which are associated with frequently presenting complaints of benzodiazepine-injured patients. There are also listed diseases/disorders which a benzodiazepine patient’s symptoms may present similarly to or mimic, causing them to be potentially included in and investigated for the differential diagnosis:
Autoimmune: Hashimoto’s Disease, Lupus, Lyme Disease, Rheumatoid arthritis
Cardiovascular: Hypertension or Hypotension, Postural Orthostatic Tachycardia Syndrome (POTS), Tachycardia
Dental: Dental Caries, Dry Mouth, Tooth Pain
Endocrine: Cushing’s Disease, Hypoglycemia, Hyperthyroidism, Hypothyroidism, Insulin Resistance
Gastrointestinal: Acid Reflux, Gastritis, Irritable Bowel Syndrome
Immunologic: Cancer, Hashimoto’s disease, Interstitial Cystitis, Mast Cell Activation Syndrome (MCAS), Recurrent infections
Neurologic: Amyotrophic lateral sclerosis (ALS), Confusion, Fibromyalgia, Migraines, Multiple Sclerosis, Muscle Weakness, Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), Neuralgia, Neuropathy, Numbness, Stiff-Person Syndrome, Stroke, Tinnitus, Vertigo
Optical: Blurred Vision, Dry Eyes
Psychiatric: Bipolar Disorder, Borderline Personality Disorder, Conversion Disorder, Catatonia, Depression, Dementia, Dissociative Disorders, Generalized Anxiety Disorder, Insomnia, Mania, Obsessive Compulsive Disorder, Panic Disorder with or without Agoraphobia, Paranoia, Psychosis, PTSD, Self Harm, Somatoform Disorder
Reproductive: Erectile Dysfunction, Infertility, Irregular Menstruation, Polycystic Ovarian Syndrome
Patients who develop symptoms of the above conditions as a direct result of a benzodiazepine are frequently subjected to the expense and risk of unnecessary medical testing and treatment. Patients may also be misdiagnosed because prescribers fail to recognize the benzodiazepine’s role and, instead, treat the patient as if their problems are organic or psychiatric in nature. Were the benzodiazepine identified and then removed in a safe manner via slow taper, nearly all the mysterious symptoms and conditions would slowly resolve on their own.
Real Life Impact
One example where the above scenario plays out is with women and their menstrual cycles. Benzodiazepines have long been documented to cause menstrual irregularities in some patients and, in spite of this, they are rarely considered in the differential diagnosis by a medical provider when a woman presents with irregular periods. Because of this, the patient may be put on hormones she does not need or, in more extreme cases, may be subjected to an unnecessary hysterectomy. Many women in the benzodiazepine support communities who were experiencing these menstrual irregularities report that tapering off of their benzodiazepine resulted in the resumption of normal menstruation.
To illustrate further with other common examples, patients presenting with chronic pain, unknowingly caused by a benzodiazepine, may be given steroid injections or prescribed a risky contraindicated opioid for pain management; a patient with insomnia may be prescribed additional benzodiazepines, Z-drugs, or other polypharmacy; a patient who is simply experiencing the side-effects of benzodiazepines may be misdiagnosed as bipolar and could be polydrugged on further dependence-causing medications, while still experiencing no relief from their presenting symptoms.
Patients may be exposed to unneeded radiation, uncomfortable and invasive testing, and many medications they simply do not need. They might seek mental health or physical therapies or they may grow frustrated with conventional medicine and seek natural therapies. Most of these treatments will probably fail to solve their problem or provide the relief they seek, so they will continue to seek help. This might serve to frustrate their growing care team, resulting in them being labeled as malingerers or being told the symptoms they are suffering are “all in your head.” If the patient isn’t too cognitively impaired and they are able to research their symptoms, or with the assistance of a loved one, they might discover the large online community of benzodiazepines sufferers that exists. Utilizing this resource, many patients discover on their own that the benzodiazepine is the culprit of their symptoms or unexplained illness.
How To Address Side Effects From Benzodiazepine Use?
If you have recognized yourself, a loved one, or a patient in this article, you are probably wondering what to do next. When the issues with benzodiazepine side effects, tolerance and/or interdose withdrawal have been identified, there are some options each patient can consider:
The first is switching to a longer half-life drug using a reputable, experience-based conversion table, such as The Ashton Manual to address interdose withdrawal. Or, if a longer half-life benzodiazepine is not tolerable, one can try dosing their current benzodiazepine more frequently.
The second is increasing the dosage. The patient should always consult with their prescriber before increasing their dose, however this conversation may be risky, as any sign of problems with benzodiazepines can be unnerving to a prescriber, resulting in them rapidly tapering the patient, refusing to prescribe further to the patient, or outsourcing the problem by sending them to detox. A patient, in being their own best advocate, should have a backup prescriber in mind with a set appointment before having this conversation should their prescriber respond in the above manner. A physically dependent, compliant patient being sent to detox should almost never happen. If a patient can manage their prescription, they do not need to go to detox; there are of course exceptions, but this is the general rule.
The third option is tapering off the drug. This must be carefully decided upon by both the patient and prescriber, as it can have dangerous implications. It is impossible to tell which patients will and will not have problems, so cautious, informed decisions ought to be made. The patients age, life expectancy, other health problems, support system, and living situation should be considered. If cessation is attempted, the lowest possible tapering rate, controlled by the patient and one not more than 5-10% every 2 to 4 weeks, should be used initially. For many patients, tapering off the drug is successful; they are able to taper off in a reasonable period of time, with minimal symptoms, feel much better, and move forward with their lives.
Sadly, for a subset, somewhere between 10-50%, being free of the now problematic drug and moving forward quickly is not possible. These patients develop benzodiazepine withdrawal syndrome and must endure a long, sometimes painful taper, often alone or without the help of their physician, in order to feel better. They may be forced to face not only their original underlying condition, which may have gotten worse or never resolved, but also benzodiazepine side-effects, tolerance, and interdose symptoms, in addition to withdrawal and drug-damage symptoms. This horrendous process, taking anywhere from many months to many years, can completely disable the patient in their quest to discontinue these drugs. Added to that, patients are often wrongly labeled as “addicts,” or otherwise blamed, denied medical help, and must face both social stigma and societal ignorance when they attempt to explain their current limitations in ability to friends and family.
Many patients at this point desire to consult with an expert on benzodiazepines. Unfortunately, there just aren’t many, if any. The leading experts on benzodiazepines, such as Professor Heather Ashton, Professor Malcolm Lader or the late Dr. Raymond Armstrong, are all retired or deceased. That said, there are a few doctors who range from understanding to knowledgable that are willing to work with patients to help them with a successful, patient-led taper. If the patient cannot find an understanding or knowledgeable doctor, unfortunately, the burden will be on the patient, regardless of their current mental and physical state, to find a doctor that is willing to be educated about the problem.
In conclusion, more prescriber education is desperately needed regarding:
- The appropriate prescribing of benzodiazepines.
- Recognizing problems with prescribed benzodiazepines including side effects, tolerance, and withdrawal
- Safe taper protocols for benzodiazepines
Hopefully, the near 60-years of outcries from injured patients and their continued calls for action will result in better education and comprehensive, long term benzodiazepine research. Without education in the above 3 areas, medicine will remain in the dark regarding benzodiazepines. Patients will continue to suffer, while misdiagnosis and unnecessary treatments will persist. Valuable resources will continue to be wasted and lives will continue to be lost.
JC lives in Sarasota, Florida and is a graduate of the University of South Florida. She founded Benzodiazepine Information Coalition in 2016 after sustaining a multi year injury from prescription Ativan taken as instructed by her physician. She experienced severe side effects from the drug and was misdiagnosed, over a 4 year period, with a multitude of health problems from multiple well-meaning specialists unable to consider benzodiazepines side effects as the culprit. When she finally discovered the cause of these problems she was unable to find a physician competent to help her taper off the drug. Fortunately, she was able to find this information online from other sufferers with the same problem. Shocked with, and confused by, the widespread lack of knowledge within the medical community about the benzodiazepine class of drugs she decided to organize the injured and knowledgable professionals together to form a coalition to facilitate information sharing, awareness, education, research and change.