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AN OPEN LETTER BY JULIE KEYSER
I have experienced severe health problems in the past 15 years (mainly depression and anxiety). Please read the following, which explains it all. Currently, I am withdrawing from a potent benzodiazepine and the withdrawal symptoms are intolerable. I would like to draw this issue to your attention so that neither you nor anyone you know ever have to experience what I have (and am still experiencing). I am lobbying with the goal of making our government, pharmaceutical companies, and the medical community accountable for this very serious issue, which affects millions of people worldwide. Please check out the website mentioned below and spread the word about these insidious drugs. This website could be life changing or even life saving to you or someone you know.
This is to bring attention to a serious matter regarding a class of commonly prescribed medications known as Benzodiazepines, which are routinely prescribed for insomnia, panic disorder and anxiety. During my withdrawal I have been researching this class of drugs and have been stunned at what I have learned. 'Benzos' can lead to severe addiction, withdrawal symptoms and syndromes. These drugs are highly addictive if taken for longer than two weeks, yet doctors routinely prescribe them for months or years. Actually, they aren't effective after four weeks and are only supposed to be prescribed for two to four weeks.
The following quotes are directly from a government document "The Effects of Tranquillization: Benzodiazepine Use in Canada" published in 1982 by authority of the Minister of National Health and Welfare - Canada.
"It is generally agreed that, lacking evidence that the anti-anxiety properties of these drugs exceed two to four weeks, and since anxiety is typically episodic, courses of one to two weeks are recommended."
"Efficacy as an anti-anxiety agent has not been demonstrated for longer than a few weeks and, because of the risk of dependency as well as with individual variation in dose response, continuous use should not exceed two weeks."
The side effects and withdrawal symptoms of these drugs are horrendous. The most commonly known benzodiazepines are Ativan, Clonazepam/Rivotril, Valium and Xanax. I personally, was tried on many benzos and remained on Clonazepam/Rivotril for the most part of 15 years. Some side effects are central nervous system depression, anxiety, panic attacks, decreased learning skills, cognitive impairment, rage, short-term memory loss, aggressiveness and unusual negative behavior and sometimes dangerous behavior caused by being uninhibited, fatigue and the possibility of destroying the liver. Millions of people are currently taking these medications worldwide and I feel it is a national disgrace in our country. An increasing number of people (including teenagers) use 'benzos' recreationally and our seniors are routinely being sedated with them.
I was diagnosed in 1986 with 'clinical depression' caused by problems in my life at that time and was placed on anti-depressants. In 1987 when I began experiencing severe anxiety, I was prescribed Clonazepam, (called Klonopin in the US) which 'stole' 15 years of my life. Unfortunately for me, Clonazepam is one of the most potent benzodiazepines - it is, in fact, 20 times stronger than Valium. The dosage I was prescribed caused me to be impaired by three times the legal limit, which I now find quite frightening.
In retrospect, Clonazepam caused me to be extremely depressed, more anxious, fatigued, suicidal and I suffered severe, chronic gastrointestinal problems. These symptoms were so debilitating that I was forced to quit the job I enjoyed. I was hospitalized three times and underwent 10 ECT (shock) treatments. Not only did this not help, it actually caused me more suffering. I suffered from Agoraphobia for approximately 2½ years, irrational, terrifying fear for about 2 years, and had a bout of Anorexia.
I have learned the above symptoms are in fact, very common in people on these drugs. A good deal of my time was spent crying, sleeping, and wishing I were dead. Thankfully, I have never attempted to kill myself because of my love for my family and my deep spiritual beliefs. I was devastated in that I was unable to function in my role as wife and mother (which I resent terribly) and my ex-husband and children had to assume my duties. My children basically lost their mother and I was alienated from family and friends for many years. For 4½ years I was also not allowed to take care of my grandchildren because my daughter and son-in-law did not trust my judgement. This was heart breaking for me.
Seven years ago I went through a divorce and two years later was re-married. I should have been blissfully happy since I lead a life most people would envy; I am in a loving, committed relationship, do not have to work, and travel all over the world because of my husband's work. However, I have remained depressed and anxious for no apparent reason. I have been involved in psychotherapy with minimal results. Various doctors seemed to disagree whether or not I had a 'chemical imbalance' (there is no scientific method of diagnosing this). Since Psychiatry is still in its infancy compared to other areas of Medicine, it is considered more of an 'Art' than a 'Science' and I appreciate that often times treating patients is a matter of 'trial and error'.
What is frightening is that doctors do not warn patients about the addictive nature of these drugs or about the horrific symptoms caused by withdrawing from them. We have all come to know that Valium is addictive and many doctors now shy away from offering it to their patients. This is of little consolation to patients who were first prescribed Valium years ago and are now struggling to get off it. The solution? - Valium has basically been slightly altered, re-named and re-packaged as Ativan, Clonazepam and Xanax. In fact, these drugs have shorter half-lives than Valium and can arguably be considered more addictive and more difficult to discontinue. When I was first prescribed Clonazepam for anxiety, I was told that it was an 'anti-convulsant' medication which was often very 'safely' prescribed for epileptics but that it was found to be effective in treating anxiety. This did not make sense to me so I questioned many doctors, as well as pharmacists over the course of 15 years and was always given the same answer - 'it's an anti-convulsant medication and it is safe'.
It is, in fact, an anti-convulsant. However, I have recently discovered that not only is it a tranquillizer, but it is one of the most dangerous drugs a person can ingest and much more difficult to taper from than Heroin or Cocaine! It is actually 20 times more potent than Valium. This information is well documented but because patients trust their doctors, they do not realize they are addicted until months or years later when they attempt to discontinue the medication. At this point they learn that if they stop taking the drug, they will endure a lengthy taper with terrifying withdrawal symptoms. When this is brought to the attention of doctors, patients are rarely provided with proper information or advice. Many doctors even have the unmitigated gall to 'blame the patient' for asking for repeat prescriptions and try to shame them! I have seen and heard about many condescending doctors, some who have made ludicrous comments and diagnoses. It is very common that the doctor does not even recognize his/her patient has developed an addiction to benzodiazepines. Instead, they claim that the symptoms a patient experiences when attempting to come off the medication are actually a re-emergence of the original condition for which they were being treated, at which time they increase the dosage or prescribe an additional benzodiazepine, causing the patient more harm!
While some of the symptoms of benzodiazepine withdrawal may resemble those seen in anxiety, panic, or insomnia, most are unique to benzodiazepine withdrawal. These symptoms include; sensitivity to light, noise and odors, extreme muscle weakness and pain, confusion, vertigo, nausea, tinnitus (ringing in the ears), burning sensations, memory loss, cognitive and perceptual disturbances, pain in the jaw, teeth feeling like they are 'soft', migraine headaches, aggressive behavior, sleep disturbances, hair loss, weight gain or loss, urinary retention, dehydration, anemia, panic attacks, anxiety, gastrointestinal problems, high blood pressure, heart palpitations, depression, and feelings of unreality (depersonalization and derealization), to name but a few. Oft times doctors will simply stop the patient's medication "cold turkey" which almost always causes life-threatening, painful withdrawal symptoms and necessitates an admission to an Emergency Room or to a hospital Psychiatric unit (both of which I have experienced). Stopping these drugs abruptly can and does cause breathing difficulties, hallucinations, coma, dangerously high blood pressure, seizures - even death.
I have personally experienced most of the above symptoms among many others - once while in a remote part of Ecuador in June, 2001 which required two trips to a third world country ER where I was treated for having "dangerously high blood pressure". Subsequently, I ended up yet again in ER in Calgary on three occasions - twice in 2001 and once in 2002. After listening to my detailed history, only one ER doctor thought that my problem was caused from being withdrawn too quickly from Clonazepam - the rest did not have a clue! My last admission to an ER was in April 2002 at which time doctors thought I was suffering a heart attack. After an EKG, an echocardiogram (ultra-sound of the heart), and a stress test, it was deemed by my cardiologist that my heart was in excellent condition, albeit my heartbeat was faster than normal.
The correct and safest way to get off these medications is to "taper" very slowly, yet many doctors do not advise their patients of this, or if they do, their advice is to taper in a 6 week time period (which is dangerously fast). I learned this the hard way by tapering within this time frame on 4 occasions. As ludicrous as it sounds, drug companies provide doctors with this information and it is totally false. However, any physician who is prescribing benzodiazepines should certainly be knowledgeable of all the side effects as well as the proper withdrawal procedure. As frightening as it is, they are not knowledgeable. I personally have questioned many doctors and they truly are not informed! Some experiment with their patients as to the best tapering procedure. To date, an increasing number of people have been successful in lawsuits against the offending prescribing physician. These suits are not made known to the public because before they are settled, a 'gagging' or non-disclosure order is imposed. This is a cynical attempt to silence people and prevent the truth about these drugs from being exposed.
Even if a patient is lucky enough to find a doctor who recognizes the addiction and realizes that the taper must be slow using a drug with a longer half life e.g. Valium, this still does not guarantee a painless withdrawal and patients experience a myriad of withdrawal symptoms the entire length of the taper and beyond. Ideally, patients need to be monitored regularly for high blood pressure, liver functioning, blood tests, etc. during tapering, but this is rarely done. What is not commonly recognized is that benzodiazepine withdrawal symptoms can last for months or even years after the medication is discontinued - this is called Benzodiazepine Withdrawal Syndrome. The drug actually alters the brain and until it finds its way back to normalcy, the person suffers.
The day after my last ER admission (in April 2002), I was lucky enough to come across a website called benzo.org.uk which has reams of information on this topic and an online support group for people who wish to, or have discontinued 'benzos'. This site has access to information from professionals in the area of benzodiazepine addiction and withdrawal. I am a member of this group and it has literally saved my life as well as the lives of many others. We are not drug abusers; we took our medication as prescribed by our doctors in whom we had placed our trust.
This site was established and is maintained by Ray Nimmo who lives in England. Mr. Nimmo's G.P. prescribed Valium following a mouth infection causing a 14 year addiction which ruined Mr. Nimmo's life. On June 28th, 2002 he successfully sued the prescribing physician in a landmark case and was compensated with £40,000 (a small sum for 14 'lost' years). Mr. Nimmo's case is significant in that he did not sign a 'gagging order'. This case (and in particular, Mr. Nimmo's courage to fight publicly) has set a precedent in the UK. The seriousness of this issue has caused it to be brought forth in the British parliament with the goals of re-classifying benzos and changing prescribing practices. This needs to happen in Canada and the U.S. as well since thousands of people are taking benzos.
One of the most frustrating problems we have faced is the ignorance within the medical community. We were told that the symptoms could not be caused by a drug we once took or were still taking, at which time we began looking at other possibilities. Because of the nature and severity of our symptoms, we had no choice but to run from doctor to doctor, enduring many needless, painful, and costly tests. Many of us have been told, "it sounds like you have Multiple Sclerosis, Lyme's Disease, Chronic Fatigue Syndrome, Fybromyalgia", etc. When nothing turned up after exhausting every avenue, we finally came to the conclusion ourselves that it was these drugs that caused our illness - no easy feat considering the altered state of minds.
There seemed to be nowhere to turn for help so we have had to figure it out on our own. Many of us have ended up in financial despair due to psychologists' bills, prescription costs, job loss, etc. The bottom line is that benzodiazepines can cause a syndrome, which is as disabling as any major neurological illness, yet few doctors, even psychiatrists, are familiar with the condition. This is inexcusable and totally irresponsible on behalf of the pharmaceutical companies (whom we have learned do not provide doctors with accurate information, which is certainly evidenced by our own personal experiences as well as documented clinical reports and many research studies). However, I also believe that doctors need accept responsibility and research each and every drug they prescribe to patients. I am horrified at the lack of public awareness about these drugs.
Our support group is armed with this information, yet we are frustrated and angry because doctors continue to over-prescribe and fail to warn their patients. Of course one alternative is to take legal action against the prescribing doctors, which many are doing. However, the the biggest responsibility lies with the drug companies and of course, 'he who has the most money wins' so it is not feasible for one person to take legal action and the task of organizing a class action suit is absolutely daunting because of the huge number of people on this poison. Our government simply ignores the fact that these drugs are legally not to be prescribed for longer than four weeks since the pharmaceutical companies provide them with millions of dollars. Doctors are unwitting 'pushers' who listen to the drug companies' propaganda. My research has shown time and time again that there appears to be cover-ups by doctors, our government and the pharmaceutical companies. Because the problem is so huge and widespread and with no one accepting blame, it has been 'swept under the carpet'. I find this reprehensible and the unsuspecting public must be informed since new prescriptions are being written every day. Had I been told this before my whole experience, I would have thought someone was just being 'paranoid'. Sadly, I can assure you that this is not the case.
By the time a person joins our support group they are very sick, disabled, scared, confused, and oft times, suicidal. We have had members who have seriously considered ending their lives, a few who have attempted to do so, and one who was successful. This public health issue must be exposed and we want to see some accountability and change! The only way this will happen is to educate doctors and the public. The drug companies do not warn the doctors, thus the doctors cannot warn their patients (and do not conduct their own research) - sadly, it all boils down to the drug companies making big bucks at the expense of people's lives!! One of our members is a former drug rep and states categorically that the drug manufacturers were "well aware of all of these problems right from the beginning". I also find it alarming that many pharmacists with whom I have spoken are not aware of the proper taper method and that most of the information doctors receive is from representatives of drug companies whose main interest seems to be in their own profits.
Professor Heather Ashton, a British psychopharmacologist and the world's expert on benzodiazepine withdrawal, has written many papers on this topic and has published a manual entitled 'Benzodiazepines - How They Work and How To Withdraw' for doctors, pharmacists and patients. She conducted a benzodiazepine withdrawal clinic for 12 years and 300 closely monitored benzodiazepine addicted patients were successfully withdrawn following her tapering schedules. Most of these patients had simply been following their doctor's orders. Professor Ashton has generously offered this manual free - online at benzo.org.uk. It contains a wealth of information and includes her successful and proven tapering guidelines for benzodiazepine withdrawal. If you are taking a benzodiazepine, I strongly recommend this manual.
I am very grateful that I have an intelligent, open-minded, compassionate G.P. who strictly adheres to the taper outlined in Professor Ashton's manual. When she first read the manual she was shocked and humble enough to apologize for having unknowingly 'perpetuated the problem'. I have great respect for her in that she accepted responsibility and is managing my taper according to Professor Ashton's expert advice. In fact, it will require approximately 2 years for me to taper, not 6 weeks!
However, when other patients in our support group show Professor Ashton's manual to their doctors, many will not even look at it because of their huge egos and their refusal to admit that they have been negligent. As the public is aware, drug companies 'buy off' doctors by hosting dinners, giving them expensive gifts and even treating them to exotic vacations. This must stop! Having been a clerical worker in a hospital Psychiatric department, I have witnessed this firsthand. I confided in a drug rep about my depression, whereupon he gave me a 6-month supply of the antidepressant I was taking since he knew he had to go through me to be able to talk with the psychiatrist in charge. My excuse for accepting his 'free meds' is that I was depressed and was unable to make decisions. I wonder what his was for being so unethical?
It is common knowledge that drug companies seed political pockets for their own gain. How sad that our government can be 'bought off' so easily. To a person such as myself, who has suffered because of the greed and power of pharmaceutical companies, I find their actions appalling and even criminal. These drugs actually cause Central Nervous System depression! How many people have died as a direct result of this - e.g. committing suicide? - I'm willing to bet thousands. How many more are we going to let die? Many of us have written to these companies re: adverse drug reactions yet the problem persists with them accepting no responsibility whatsoever.
The general public needs to be informed of this frightening situation. If this could happen to someone like myself, who has always tried to be my own health advocate, it will certainly happen and is, happening, to thousands of unsuspecting, uninformed people who blindly believe their doctor is "God". The economic devastation that these drugs wreak on our health care system is enormous - and all of us end up paying. Millions of dollars are lost due to decreased productivity in the workplace, claims for disability and prescription insurance, and Canada Pension Plan claims. I myself can attest to this. This is a health/consumer issue that must be exposed and I'm sure will be - it's just a matter of time and finding people who possess enough courage and integrity to do something about it!
Joan Gadsby of Vancouver is the author of "Addiction By Prescription". Joan is a 'benzo survivor' and has done an incredible amount amount of research. She has presented her findings in the Canadian Senate and incredulous as it may sound, after hearing about the needless suffering these drugs cause, our government has chosen to do nothing to correct this dangerous situation. This is outrageous. Joan has been lobbying for 12 years and has lost many thousands of dollars in her battle. We need to direct a 'collective voice' to the government officials whose salaries we pay!
Currently, I am withdrawing via a Valium taper as advised by Professor Heather Ashton and I cannot describe the debilitating symptoms many others and I are suffering at this time. Unfortunately, withdrawal symptoms become much more severe with each lowered dose.
Due to lack of information, it has been very frustrating, hurtful, and insulting to me and other 'benzo survivors' that people have judged us as whining, craving attention, being weak and not being able to commit to things. The truth of the matter is that we have proven to be extraordinarily strong human beings or we would not be here today! If you think I am exaggerating or that I am an 'isolated case', think again. I strongly urge you to visit www.benzo.org.uk and have a look around.
Benzodiazepines reap the highest profit for pharmaceutical companies since they are the drug most frequently prescribed. Again, it's all about big bucks at the expense of a person's health. I am sure that if you show this letter to family and friends, you will know at least one person in a similar predicament as me. Statistics show that benzodiazepines are most often prescribed for women and senior citizens. Many of our seniors are put into a 'zombie like' state and are robbed of 'quality of life' during their final years. The only way to affect change is to pressure Chrétien, our Health Ministers, and the College of Physicians and Surgeons. I believe we all have a moral responsibility to do something about this and urge you to write letters to the above mentioned. By you taking positive action you could very well be helping someone you know and love.
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