Robert's road to recovery from benzodiazepines and Z drugs

[[ev...]]

Robert’s Road to Recovery from Benzodiazepines and Z drugs

 

My purpose in writing this piece is to inform people about my journey through withdrawal and recovery from benzodiazepine and Z drug dependency. It must be emphasised that everyone is different in some way or another. Some have taken higher doses than I have or have been taking different benzodiazepines and Z drugs for different periods of time. However, from what I have read, far too many people experience a range of mysterious symptoms, which are difficult to explain and which frequently lead to the prescription of more mind altering drugs. Hopefully, reading my story will help to develop a better understanding of what it is like to experience the impact these drugs on people’s lives.

 

Here is my story:

 

On November 13, 2009 I went to bed with a movement disorder which had persisted for seventeen months. (You can read about the illness by looking at Robert’s Story Mind Altering Drugs on the TRAP website). The illness was characterised by jerking movements for most of the time. Next morning these movements stopped. This was not unusual as this had happened many times before only for them to resume once my hopes had been raised. However, on this occasion, they did not come back.

It took a while for me to realise that a personal miracle had occurred. This was partly due to the continuation of terrible internal sensations of burning and an inability to sleep without sleeping tablets.

My life had been so consumed by the disorder that I did not realise that psychiatrists had inflicted not one but two illnesses upon me. Now that this disorder had ceased I wanted to be drug free. I soon found that this was going to be impossible to achieve in the short term. I made two attempts lasting about eleven days each over the course of two months to go without sleeping medication. The result was sleepless nights.

The psychiatrists who were treating me suggested I continue taking either Temazepam or Imovane (Zopiclone in the US). I was extremely unwilling to do this given the terrible impact mind altering drugs had had on me. So I started looking around the Internet. It did not take long to find the work of Heather Ashton, Emeritus Professor at Newcastle-Upon Tyne University in the UK. Eventually in early 2010 I went to my local GP and discussed how I was going to get off sleeping medication and restore my health.

Thankfully, the psychiatrist who had been treating me was forced by family circumstances to move interstate. He did arrange for me to see another psychiatrist stating: “You need a psychiatrist.” This had been in response to my comment that psychiatrists are addicted to drugs i.e. prescribing them. He laughed this off by saying “that’s a bit rich”. However, in my heart I meant it. When I left his rooms for the last time, I vowed never to visit a psychiatrist again.

 

My great mistake had been catastrophise about what turned out to be a minor back complaint. I had allowed myself to become depressed and fallen into the hands of well-meaning doctors and psychiatrists who had destroyed my life with their drugs. I was determined to take responsibility for my own life and to accept whatever was necessary to become drug free.

I was extremely fortunate to have a local GP, who is well acquainted with sleeping medication. He works in aged care and tries to encourage his patients on sleeping medication to come off it. He explained to me that I am a most unusual patient as I was coming to him asking to be taken off these drugs; most want more of them. 

This statement by the doctor exemplifies the problem associated with these drugs: their immensely addictive properties. Throughout my ordeal I had not heard the word benzodiazepines nor had I come across the expression Z drugs. I had been given a range of both of them at different stages in different amounts for sleep and anxiety but I had no idea that all of them are chemically very similar and that they were building up a dependency from which it was going to take a long time to break free.

What was worse was I had been subject to a pharmacopeia of other drugs in order to treat me for depression and the catastrophic movement disorder.

The doctor stated that in most cases he had been able to get people off fairly quickly in a matter of a few weeks. However, given my history of depression and anxiety, he felt I may have had to be on one form of this drug for a considerable period. I had been taking an average of 10mg of Valium equivalency for two years. However, at that stage I was taking 10mg of Temazepam to get very little sleep. So we settled on 7.5mg of Valium as a starting point for a taper.

During January 2010 I embarked on a home improvement programme. I cleaned the gutters and washed the windows and the paintwork. I even painted our decking. It was amazing that I could do these things as there were many unpleasant sensations throughout my body and I continued to have severe sleeping problems. 

The doctor cut the dosage quickly at first and by February I was down to 3.5mg. It was at this point that my wife went overseas for three weeks and I was on my own. The doctor was worried about how I would cope so we stabilised the level for a month.

Around the same time I joined a gym on the GP’s advice. I explained to an instructor that I was joining because I needed to exercise in order to build up my body but that I would have to be conservative in the amount I did. My weight had declined significantly during my ordeal. Moreover, I was in a poor state of health. In November when the disorder ended, my veins stood out especially in my arms and I was really unfit. I had started walking every day so by this time my fitness had improved sufficiently for me to give this a go. My programme was very light.

As with the work around the house it was difficult at times to keep this going.  I continued to experience a range of unpleasant symptoms. There were days when I just wanted bedtime to come around. The nights were tough too. I got to sleep thanks to the Valium but I frequently woke up in the early hours and endured burning until I got up.

In February I was referred to a sleep psychologist. I provided her with an account of my trauma which listed all the drugs which had been prescribed for me. She read this quietly then commented that I had been treated with a lack of respect. She gave me some good advice about sleep such as avoiding caffeine after 6pm, not looking at screens for at least one hour before bed time, going to bed at the same time each evening and not looking at the clock during the night. All of this made sense, but I quickly drew the conclusion that the other suggestions about using mindfulness and relaxation were simple not going to work as the Valium dependency would make it impossible for these techniques to be effective. Therefore I stopped attending after a couple of sessions.

Every couple of weeks I went to the doctor’s. During March and April the dosage was reduced gradually. By May I was down to 2mg of Valium. I started to count the days until I would be free of benzodiazepines and Z drugs. It was looking like it would take until late September or early October to end the taper at the rate we were going. My symptoms were getting worse or at least that’s how it seemed to me. Professor Ashton has stated in her manual that some people experience toxicity and have to come off the drug more quickly than she recommends. I began to suspect I was one of those who just could not take these drugs any longer. In March I had found the TRAP website. The approach recommended by the administrators and moderators of that site was to go slowly and surely. This made a lot of sense to me given the challenge that the body has to face when having something it is dependent upon withdrawn. At first I tried this. But in the end my symptoms were so disturbing that the doctor and I agreed to speed up the end of the taper.

In July my wife had an operation. I was trying very hard to be supportive. I drove her to the hospital early in the morning and waited for the surgeon to ring with news. I was feeling terrible. I remember having to wait to take her home. I walked around outside and returned to the car for a while in order to cry.

The GP stated that the dose I was on at that time around 1.5mg was so low that clinically there was no risk of seizures if I stopped taking the drug at that point. This encouraged me to hasten the end of the taper. Once every week I cut the dose by .25mg until in the middle of August I swallowed my last fragment of Valium. I was really afraid that I would not be able to sleep. Fortunately, this was not the case. I did get some sleep each night albeit not much.

Even though my fears about sleep had dominated my thoughts I had also hoped that the end of the taper would usher in a symptomless period: that without the toxic benzodiazepine my system would magically return to normal. Sadly, this was not going to be the case for me. Burning sensations continued to dog my life for many months. Moreover, the lassitude which had overwhelmed me on many evenings continued to be a problem.

Throughout this period I had religiously kept a journal. This, I determined, would help me to compare stages in my withdrawal and recovery. The result was that I was able to note the gradual progress that was taking place. I decided that there was little point in reflecting much on changes from day to day. It was better to think about how things were different between one month and another or even longer.

My dream has been to be able to walk near my home and stand looking over a field with horses and alpacas in it and say to myself: I have made it. This still has not happened many months later but there have been days when I have felt OK if not full of the joys of Spring.

The months which followed were characterised by a slow improvement in my sleep. Dreams became more frequent. During the days of the movement disorder when I was taking Imovane for sleep I had no dreams at all so this was a significant development for me. For a while if I woke up after 1.00am I was awake for the rest of the night. However, gradually I found myself sleeping until later. Recently, sleep has been returning even if I wake around 3.00am or sometimes even later.

The burning sensations particularly in the chest region persisted until only a few weeks ago. (It is now June 2011.) More and more, however, I am getting days when they disappear for a number of hours or even occasionally for the whole day. Indeed, in the last week I have had runs of more than one day without symptoms. Therefore I am starting to believe that I can make a full recovery.

This piece has been entitled Robert’s Road to Recovery from Benzodiazepines and Z Drugs because I wanted not only to explore how things have improved but why. As I have already said finding a doctor who was prepared to assist me with a gradual taper was vital. I have read so many people’s accounts of their frustration with doctors who simply dismissed their requests to come off benzodiazepines and Z drugs.

Another important factor was my determination to find out as much as I could about the drugs which had affected me so badly. I scoured the Internet with frightening results. This led me to write a series of letters to newspapers on various aspects of mental health some of which were published. I also wrote a long letter to a current affairs programme in this country. I did receive a response thanking me for my research which suggested that it may investigate issues associated with benzodiazepines in the future and if it did I would be contacted. My letter appears beneath this account. It provides links to various sites where you can find out more about the controversy associated with a number of mind altering drugs.

It is truly amazing how far pharmaceutical companies will go to promote their products. Moreover, the ignorance of doctors and psychiatrists about the potential impact of the drugs they prescribe is mind-boggling. When I realised that academics were raising concerns about benzodiazepines over thirty years ago, I was shocked. And that people were being led down the road to addiction in their thousands horrified me. Yet politicians and the media don’t appear to be willing to do much about it. It is true that a major newspaper in this country did publish some of my letters but they ignored my offers to be the basis of an in-depth expose.

This disgust with people with medical professionals whom I had trusted drove me on. In the process of finding out about the drugs which had afflicted me I also came across support websites such as TRAP. The people on this site and others which I also joined gave me a tremendous amount of support. It was terrific to read success stories. However, on the other hand, there were also those who seemed to be making little progress after being free of benzodiazepines for some time. Either way it was obvious to me that whatever the outcome there was only one course of action to be followed in my case: get off these drugs and stay off them. I also discovered Jack Hobson-Dupont’s The Benzo Book which is free online. I read it very carefully. It is very readable and explains not only the trials and tribulations of getting off benzodiazepines (in his case, Xanax) but also, in simple terms, how they work on the system. This helped to grasp that it takes the nervous system time to heal and that, consequently, I needed to be exhibit immense patience- a virtue I am not overly endowed with.

I continued my exercise programme throughout the long months of recovery. The result has been a weight gain of 8 kilograms from a very low base; I was cadaverous when the disorder ended in November 2009. Now I am relatively fit for a 61 year old. I did the walking and exercising in the gym because I could. These activities have become the centre of each day. Obviously, not everyone is able to do as much as I but the advice I have received from a counsellor at a telephone support service was to do as much as I could. So if all one can do is walk around the block that should be done. Then the aim is to build from there.

It also seemed important to meet people especially after the isolation of the months of the movement disorder. I felt really unwell at the beginning of 2010 but I decided nevertheless to sign up for some classes at the University of the Third Age in a suburb nearby. This decision presented problems as there were times when I struggled to concentrate. Sometimes the sense of lassitude was so strong I struggled to stay awake. On one occasion, I had to excuse myself as I felt my body was running away with itself. I went to the doctor’s that day as a result in order to renegotiate the pace of the taper.

Even after the taper ended, it was still hard-going but I made it to almost all of the classes and got to know a few people as a result. I did let some of them know the difficulties I had been experiencing but for most of the time I focussed on what was happening in the class.

It was this interest in keeping my mind occupied which helped me to get through. Every day I tried to have something to be involved in. For example, I read the Stieg Larsson Millennium series. Each day I attempted the cryptic crossword in the newspaper. The U3A had a current affairs group which I joined. So in order to prepare for it, I read the newspapers thoroughly every day. A hobby of mine is English football (soccer if you live in the US). I have been an Everton fan ever since my childhood on Merseyside so I subscribed to pay TV and watched lots of matches. I also hired and borrowed lots of films and researched what people thought of them on the Internet. Last year my wife and I subscribed to the theatre season of one company in this city. Again no matter how ill I felt we made to each of the seven plays we had bought tickets for.

It was fortunate that there was no pressing need for me to work. I am 61 years old now. The stories I have read on support sites of people struggling with withdrawal symptoms whilst attempting to work have filled me with amazement and admiration.

My wife has been incredibly patient. She displayed immense forbearance during the ordeal I went through especially during the darkest moment of the movement disorder. If she had not supported me during the depths of my despair, I would surely have been committed to a mental institution of one kind or another, been plied with drugs and never have recovered.

The other great source of support was my family. Sadly they live far away in another part of the world. But my mother has kept in constant contact with me. I have a few friends and I was grateful for their visits from time to time.

Throughout an ordeal such as this it is important to have company. My wife has part-time roles and needed given the extent of my trauma to have interests outside the house. Therefore my Golden Retriever which is always here gave me something to talk to and love.

One great source of frustration throughout the taper and the months which followed was my unwillingness to travel far from my home. We have a holiday house near the coast. Going there at least gave me the feeling that I was going somewhere. I bought a camera and took many photographs of the beautiful beach and inlet scenery. My wife has travelled overseas a number of times during my illness as have my friends. Whilst they were going to places all over the world in 2008 and 2009 I spent my time either here in our house or in various mental hospitals. In 2010 I was at least able to get out and about. Recently, for the first time since the beginning of 2008 my wife and I were able to go together in the car for a few days and tour an area not far from home. This gave me a great sense that at last I am able to live something approaching a normal life.

I have started to contact people I haven’t spoken to for a long time. I was concerned that my preoccupation with my symptoms would make it difficult for me to engage in normal conversation. I have also started going out a lot more- to sporting events and to friends’ houses.

It is nineteen months since the movement disorder stopped and ten months since the last piece of Valium entered my system. I am still not fully recovered. However, if I compare my situation now with as recently as Christmas, I am much better. There are symptoms such as tinnitus (which I experienced for a short time last year) and jerking sensations throughout my body which have gone entirely. My sleep is now something approaching normal. My body now feels more like it used to before this traumatic period of my life began almost four years ago.

So to anyone reading this I can say that recovery is possible. The body can fight back if it is given the opportunity to do so.

My journey of withdrawal and recovery has been travelled with this in mind. Throughout, especially during the first year, I was never sure if I was going to recover. Constantly, I had to remind myself that my system had been exposed to the equivalent of 10,000mg of Valium. This has to come with consequences. Thus it is going to take time for me to recover from the ravages of these and the other drugs I took and that I must be patient.

Last night I was asked how I see my future. I replied that after the ordeal I have been through I am simply happy to be alive. I cherish each day and live very much in the present. So I don’t look too far forward into the future. The lesson I have learnt is to cherish every day. Hoping for too much can lead to catastrophe and I never want that to happen again.

 

 

 

 

 

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Thanks for sharing your story in such detail. Those of us still lost in the maze of benzo recovery NEED these to maintain our sense of hope.

[[Ja...]]

Hi Robert,

 

Thank you so much for sharing your story including all of the events and different avenues you took to achieve your path to recovery. It's very powerful and I appreciate hearing you've been such an advocate to publish letters and gain visibility on this topic. Reading your story gives me hope. I have struggled for years now to get off of this medication and recently did a cross-over in December to Valium. Still struggling and it is going to take some time. I don't want to talk about me, but want to thank you as your story is very meaningful. Your closing lines are very touching...no matter how hard this is, it's so important to cherish each day as you said. I wish you well and continued healing as you recover. Again, thank you for posting this, you've shared so much to help others see the light at the end of the tunnel.

 

Best wishes,

Jan

[[ca...]]

Congrats Robert on your healing!! I wish you continued healing and success. Thank you so much for sharing your detailed story. It gives so many of us hope hearing about your improvements. 

[[sh...]]

Thank you so much for your story.  In it you mention letters and information you had sent to newspapers.  Is this something you can post or send to me?  I am interested in sharing this information with an many as possible.

 

Thank you again.

 

Sharil

[[te...]]

Thanks, Robert. My hope is renewed. This was a marvelous read.

[[ev...]]

Hi Sharil and Teacher2

 

I hope things improve for you both. Thank you for making such positive comments about my post. Sharil, I have written a long letter to a current affairs programme. I did get a response: I was thanked for the detail and was told that if the programme, 4 Corners in Australia ever decided to investigate benzodiazepines, they would get back to me. I have had letters to the editor published. However, they are specific to news items in Australia and are quite short. (They have to be under 200 words.), so I doubt if they will be of much help to you. I have had a lot more luck with a new organisation, the Australian Patients Association. The CEO has taken up this issue. He has posted my story and that of another victim of benzodiazepines on the Ward of Shame page of its website. The stories are called Ivan's story (that's me) and Coby's story. He has also contacted a number of publications on our behalf and it is likely as a result that there will be articles in the press in this country soon. Here is the letter I sent to 4 Corners. I hope you can do something with it.

 

Dear Sir/Madam

 

Last year your current affairs programme produced an excellent expose on the problems associated with the over-prescription of oxycodone. Therefore it is appropriate that you consider making a follow up programme on the consequences of the over-prescription of benzodiazepines and Z drugs which also lead to abuse and addiction. I have concerns about other mind altering drugs as well but the problems associated with benzodiazepines are so overwhelming for many people that this issue alone merits a programme.

 

I would like to alert you to the series of articles which have appeared recently in the UK newspaper, The Daily Mail, which deals with this serious problem. These articles can be found by googling Daily Mail benzodiazepines.

 

My personal experience has led me to feel very strongly that something should be done to address the broader issue of the over prescription and inadequate supervision of mind altering drugs in this country. I have also suffered the consequences of taking anti psychotics. I had a rare reaction to one of these drugs, Zyprexa, which resulted in a terrifying movement disorder. Needless to say, I am concerned about the prescribing of this family of drugs too. This could be the basis of another programme if you saw fit to explore the reasons why they are prescribed in this country and the risks associated with these practices.

 

There are broadly speaking four families of mind altering drugs all of which bring with them significant problems for those who are prescribed them. These families are benzodiazepines and Z drugs (a non-benzodiazepine which acts on the body in a similar way to benzodiazepines); antidepressants (which come in various forms- the most prescribed being SSRI drugs); anti convulsants (used primarily for epilepsy but also used by psychiatrists to impact on mood); and anti-psychotics (developed for the treatment of schizophrenia and psychoses but used “off label” i.e. for a purpose for which they were not designed as “mood stabilisers”). Psychiatrists regularly prescribe drugs from two or even more of these families at the same time.

 

There are very nasty side effects associated with anti-convulsants and high doses of anti-depressants. I have experienced the impact of both. However, it is the prolonged and potentially catastrophic impacts of anti-psychotics, benzodiazepines and Z drugs to which I wish to draw your attention in this email.

 

 

Anti-psychotics

 

Anti-psychotic use has caused weight gain and diabetes. Their use also has the potential to result in movement disorders which can be irreversible. I experienced a movement disorder after taking Zyprexa for only six weeks. The disorder persisted for seventeen months. Zyprexa is marketed as an atypical anti-psychotic so named because it is reputed to be safer than the old typical anti psychotics especially in relation to movement disorders.

 

 

 

The psychiatrist treating me denied that Zyprexa could have caused the disorder. He maintained it was most likely the result of a psychological problem deep in my psyche. He called this "conversion disorder". This diagnosis was contradicted by psychiatrists at a public hospital in this city who conducted a range of tests to attempt to establish the cause and to recommend ongoing treatment. It should be pointed out that the disorder had stopped by this point. The psychiatrists argued that on the balance of probabilities Zyprexa was responsible for my disorder. Yet they were prescribing another expensive anti-psychotic, Seroquel, for another patient. My own short experience of Seroquel occurred in late 2009 when it was prescribed to calm me in the face of the appalling movement disorder I was enduring. I took it during the daytime. It sent me into a stupor for a couple of hours each time I took it.

 

 

 

In the United States there have been a number of court cases related to Zyprexa. Articles can be found by googling Zyprexa litigation. There is a particularly noteworthy article to be found in The New York Times.

 

 

 

Benzodiazepines and Z drugs

 

 

 

Benzodiazepines and Z drugs are prescribed for a range of conditions most notably back spasms, sleep disorders and anxiety. They are highly addictive. Therefore GPs and psychiatrists have been advised by the Therapeutic Goods Administration and the Royal College of General Practitioners in this country to limit their use to between two to four weeks. Concerns were raised about Valium over thirty years ago. Pharmaceutical companies reacted by inventing new drugs to be prescribed for new disorders. These new versions are, in many cases, much more potent than Valium. For example, Xanax is twenty times more powerful. Ativan is ten times as potent.

 

 

 

Many people on these drugs find that after a short period they require higher and higher doses in order to achieve similar effects. Mysterious illnesses develop which are frequently misdiagnosed and are sometimes classified as psychological. Patients are often told they will have to remain on benzodiazepines for the rest of their lives. Other mind altering drugs are also frequently prescribed as result.

 

 

 

In my case, I was withdrawn from Temazepam and Valium abruptly and given Zyprexa for sleep instead. Once the movement disorder started a pharmacopoeia of drugs was thrown at my condition. When these failed to alleviate the condition, Electro Convulsive Therapy was tried. It was a miracle that out of the blue the disorder stopped.

 

 

 

Following that I had to spend seven and a half months tapering off benzodiazepines and Z drugs by using Valium. I was fortunate to find a sympathetic GP, who understood what was required to restore my health. Many sufferers are not as fortunate as I was, nor are they as motivated as I was to find a solution.

 

 

 

Statistics are not available in this country but in a speech last year in a debate in the House of Lords the Earl of Sandwich quoted a report to parliament which estimated that 1.5 million people are addicted to benzodiazepines in the United Kingdom. He followed this up with an article in The Independent in which he expresses pessimism about the intentions of the Coalition government in relation to this issue. It can be located by googling John Sandwich benzodiazepines.

 

 

 

I have had a series of opinion pieces published in the press, I presume, because I addressed particular issues which had been raised in articles in those newspapers. I responded to a piece on the link between road accidents and the presence of benzodiazepines in the body in which I warned readers of the potential dangers associated with these drugs. In my case, a GP prescribed 1.5mg of Xanax for me to be taken in three .5mg doses over a day. He should have warned me of the effect this drug has on motor skills and perception. He failed to do so with the result that I drove to an appointment with an acupuncturist in an increasingly doped up state with a potent drug in my system. 1.5mg of Xanax is equivalent to 30mg of Valium. I expect there are people driving around today all over the world with dangerous levels of benzodiazepines in their bodies.

 

 

 

An expert in mental health wrote a piece asking for more money to be spent federally on mental health. I replied by pointing out the immense waste in this system especially in private hospitals. Psychiatrists refer patients to other psychiatrists, psychotherapists, psychologists and neurologists. In my case, more and more drugs were recommended and expensive tests were ordered – all to no avail. Beds in private mental hospitals cost over $700 a night and a consultation with a psychiatrist is over $300 an hour. Indeed, I went to the doctor for help with anxiety and depression associated with a back condition and ended up seriously ill as a result of the drugs given to me by a psychiatrist working at a private hospital to which I was referred.

 

 

 

Another piece was published after the coroner expressed concern that methadone was being taken at home without adequate supervision and that deaths were resulting. I argued that the same applied to benzodiazepines and Z drugs. There are many suicides and attempted suicides where benzodiazepines have been found in the body. I ended up with lots of tablets in my home and thanks to my disorder I became increasingly desperate. Thankfully, I did not resort to taking an overdose of these drugs but sadly there are those who do.

 

 

 

Another letter published recently was in response to a case involving an addict who was prescribed Valium in order to help him withdraw from heroin. He drove a car in a condition when he was "off his face" according to one witness. The result was the death of a 71 year lady. I linked this unfortunate event to my concerns about benzodiazepines.

My latest letter reflected on how much benzodiazepines have found their way into our everyday conversations. It is as follows;

When the Australian Foreign Minister, Kevin Rudd, recently urged those involved in leadership speculation to “pop a mogadon”, he unwittingly demonstrated how much benzodiazepines have become part of the fabric of Australian society. Screenwriters, playwrights and novelists routinely put the names of these drugs into the mouths of their characters. Only this week I heard in Joanna Murray-Smith’s “The Gift” a young woman- distraught that she had to return a Golden Retriever- express the need “to take a Xanax”. Sadly, this got laughs from some of the audience. Yet the presence of benzodiazepines such as Xanax, Mogadon, Temazepam, Diazepam, Ativan and Rivotril on the list of best selling drugs is something our society should be deeply concerned about. That is why I read with pleasure about the launch of the Australian Patients Association (Woman to sue over ‘wrong’ drug 17/6). It is to be hoped that as a result revelations about individual’s experiences of the impact of dependency and withdrawal from these highly addictive and dangerous drugs will at long last prompt the federal government to intervene in order to halt their blatant over-prescription.

 

 

Another one of my opinion pieces was published in a local newspaper. It appears below. It demonstrates the extent of the problem in this state.

 

 

 

According to a state government response to a parliamentary inquiry, in the period between July 2006 and July 2007 1,378,794 prescriptions for benzodiazepines were issued in this state. Therefore it comes as no surprise that paramedics in the area served by our council attended 106 people who had misused these drugs in the last financial year. A number of GPs and psychiatrists failed to comply with the guidelines issued by pharmacists which indicate that they should be used for a short periods of two to four weeks when they prescribed a variety benzodiazepines for sleep and anxiety for me. On occasions I was in possession of fairly large amounts of these drugs. In my case the use of benzodiazepines led to tolerance and increased dosages. Once addiction set in a long and painful period of gradual withdrawal was required for me to get off them. Moreover, I have not yet fully recovered from the damage they wreaked on my central nervous system.

 

 

 

There are at least twelve different generic forms of benzodiazepines on the market in this country. They are marketed under around thirty different titles. Some are much more potent than others. Concerns about them were raised over thirty years ago. Clearly there are members of the medical profession who cannot be trusted to prescribe them and supervise their use appropriately. Therefore government needs to step in and do the job for them.

 

 

 

My own story has been posted on a benzodiazepine and Z drug support website. The site can be found by googling Robert's story mind altering drugs. It would also be worthwhile looking at this and some other stories. The horrific experience of Barry Haslam, a victim of Ativan and a tireless campaigner in the UK, would help you to grasp the devastating impact of long term addiction. This can be located at http://www.benzo.org.uk/barry.htm. The benzo.org.uk site has many stories and other material on the problems associated with benzodiazepines.

 

 

 

I would also draw your attention to the work of Heather Ashton, Emeritus Professor at Newcastle-on-Tyne University, who has produced a manual on how to get off these drugs. This can be found by googling Heather Ashton Manual.

 

 

 

Her concerns about the management practices of pharmaceutical companies were explored in a speech in 2005 in Maine in the United States. The link is http://www.psychmedaware.org/OverprescribingBenzodiazepines.html.

 

 

 

Given the massive number of people addicted to benzodiazepines, another problem has resulted: how to get people safely off these drugs without causing serious complications. Unlike other addictive drugs, one simply cannot, in most cases, cease taking these drugs. Successful withdrawal requires a painful process of tapering over a number of months and sometimes years. The medical profession does not seem to grasp this. Some people are sent to detox centres which conduct quick withdrawals which rarely succeed. There are many doctors who believe it is too hard to withdraw from benzodiazepines and tell their patients they will have to stay on them for life. Once someone is hooked, dependency sets in and more of the drug is required to achieve the same effect. The most famous example of this is Michael Jackson who ended up resorting to anaesthetics as he was so addicted to benzodiazepines. Another celebrity who was addicted to benzodiazepines is Stevie Nicks of Fleetwood Mac. Heath Ledger had Xanax in his system when he sadly died in early 2008. He had been experiencing serious problems with sleep.

 

 

 

It is ironic that in this country there is one partially funded organisation in this city, which assists people withdrawing from benzodiazepines, yet two blocks away there is a private mental hospital which has psychiatrists prescribing benzodiazepines and Z drugs for many of its patients.

 

 

 

Just which organisation has responsibility for the regulation of the prescription of drugs in Australia is not entirely clear. I understand it to be the Therapeutic Goods Administration. Benzodiazepines are designated as schedule 4 drugs about which care needs to be taken when prescribing them. Some have argued they should become schedule 8 drugs with the result that they would have strict restrictions placed on their use. Others recommend that doctors be properly educated on the problems associated with the medium to long term use of these drugs.

 

 

 

I have suffered immensely as result of the misguided good intentions of a number of medical practitioners. I would hate to think that I stood by and allowed such misery to be inflicted on thousands, if not millions, of others.

 

 

 

I am only too happy to assist you if you decide to take on the task of raising concerns about these drugs. It would be wonderful if the federal government decided to address the consequences of the continued over prescription of mind altering drugs.

 

 

 

I have chosen to write to you now as my health is slowly improving. My nervous system is still affected even though I have been eight months free of benzodiazepines. I still have difficulty maintaining sleep and have burning sensations throughout my body for much of the time. However, compared to the symptoms I endured earlier, they are much more bearable. Sadly, this cannot be said for many I have been in contact with, however.

 

 

 

I look forward to your reply.

 

 

 

Robert

 

[[fi...]]

    Thankyou so much for sharing your story. You have been through alot and I am happy that youare on the mend!

[[st...]]

Thank you, Robert, for being so proactive in bringing the attention to these drugs.  Congratulations for getting off and enduring the pain of getting off the benzos.  More healing is still to come.

 

Patty  xo

[[ev...]]

Tonight is one year on from the last fragment of Diazepam. I have not even taken an aspirin or panadol since.

 

I had stopped recording my symptoms on 25th May last year as the last few weeks of my taper were very hard and it was such a depressing thing to do to write the same thing almost every day.

 

However, I started again one week after my taper ended. These were some of the observations I was making then about what was happening to me: little sleep, low level burning, still feeling somewhat drugged, falling asleeep early in the evening (20th August), aching as opposed to burning, aching throughout, pins and needles (21st August), pins and needles all over the body even the face, very challenging, extended crying, awful feeling of lassitude (22nd August).

 

Over the year as I reflect on what happened to me, the sleep gradually got better. By December I was waking a bit later and the burning was subsiding a bit. I started to do more as each month went by. When my wife went overseas including at Christmas, I was on my own without family. That was very tough as I was still aching and burning and on many evenings I was struggling to stay awake.

 

This year in April I started going out a lot more. We even went away on a short holiday not far away. In May I started to feel confident to drive distances and go out on the train to the city on my own. I went to a football match and met my friend there something that would have been unimaginable this time last year.

 

My diary entries now do not mention the physical symptoms except that I am tired early in the evening a lot. My sleep is still interrupted but infinitely better than last year.

 

So I am lucky to have recovered. Indeed, I am lucky twice over. Many on this site say that getting off and recovering from benzodiazepines is the hardest thing they have ever done. For me as you can see from what I have just written it was immensely challenging. Indeed, I hate the word benzodiazepines as a result. This is a word I will try hard not to type again. I am sick of it. I have used it in posts, letters of complaint, letters to the editor, emails to the CEO of an organisation which has been helping me complain to the psychiatrist who treated me and so on.

 

Yet there is one word I hate even more- anti-psychotics. Although getting off benzos was really hard, at least I had a goal. My mind was foccussed, but with a movement disorder and deep depression as a result (and an addiction to benzodiazepines and Z drugs I didn't even know about) all I could do was survive and hope it would end somehow at some time. It was only when it did stop marvellously and miraculously that I was even able to find a way out of the dependency and addiction to benzodiazepines and Z drugs.

 

I have noted that there are those on this site who are taking anti-depressants and anti-psychotics. I respect your decision. However, these drugs both made me very ill. At the very least you should research them. Read my story if you want to see the catastrophe which can result. I was already low when I got ill on these drugs. Having a movement disorder as a result of them meant I was in no position to be resilient in the face of this condition.

 

I have read so much about psychiatry that I am convinced that future generations will look back and liken its practices to those of the doctors who thought that diseases were carried in the miasma and prescribed weird potions which often made things much worse.

 

I have done all I can think of to warn people: I have published my story on a number of websites. I have provided links in my posts. I know I could never touch a mind-altering drug again. If I had been warned, I would never have taken one of them.

 

Anyway, I will not be posting much from now on. It is time now to move on. I am waiting for contact from a reporter from a broadsheet newspaper who has prepared a story on benzos. I have already sent her an email expressing my views but I think she is going to interview me.

 

And my last comment for a while- my experience in the last year demonstrates that people can get better. That there is hope.

 

I wish all of you who read this at no matter what stage you area at with these drugs the very best of luck.

 

Bye for now

 

Robert

[[ev...]]

Hi

 

My name on this site is Evertonfan but i have spent much of my time on TRAP which sadly I found is closing down today. I was called Robert63 on that site. But my name is actually Ivan. I have had a story of my disastrous encounter with psychiatric drugs posted on the information pages of that site and I am concerned about what is going to happen to it and all the other very useful pieces of information which I am sure have helped people in dire straits trying to come to terms with what to do to bring their lives into some sort of order. Anyway so that my story entitled Robert's Story Mind Altering Drugs does not go to waste I will place it here for the time being. I wrote the story which opens this thread as a sort of sequel to show that it is possible to make some progress towards better health even after a really terrible experience with psychiatric drugs. By the way, I am now seventeen months free of all psychiatric drugs. I still have residual symptoms of aching and have very interupted sleep but I have made considerable progress. Each day I hope that Professor Ashton is correct wehen she says that her trials indicated that almost all of her patients were fully recovered after two years. I have still got seven months to go. Here is the story:

 

Robert’s Story

 

I am writing to you in order to tell you about what has happened to me as a result of taking numerous mind altering drugs prescribed for me by various psychiatrists and doctors over a period of more than two years. I am particularly concerned about the over prescription of benzodiazepines and Z drugs for sleep and anxiety. Moreover, there is a practice of prescribing anti psychotic drugs for purposes they were not originally designed for. It should be noted, however, that my intention is not to argue that there is no role for these medications. Benzodiazepines do have a role to play in the short term treatment of anxiety. Anti psychotics are used with success in the treatment of schizophrenia and psychosis. However, these drugs have serious potential side effects and should be used with great care. 

 

I have highlighted the benzodiazepines, anti depressants and anti psychotic drugs which appear in this account so that you can understand the increasingly heavy dosages that were prescribed for me- particularly of benzodiazepines.

 

At the end of 2006 I asked for a year off from teaching. This was granted. I spent some time in the first part of 2007 learning how to play lawn bowls. I practised a lot. On August 8 my back became inflamed. This problem persisted for a number of months. I sought assistance from a physiotherapist in Oct 2007. His treatment exacerbated the problem with the result that I missed a trip to China. It was at this point that I started to become depressed. The situation exploded in early December when I developed panic attacks and extended bouts of crying. I was treated with acupuncture and later a cortisone injection for the back injury to no avail.

 

My local GP recognised my heightened state of anxiety. He prescribed Kalma (also known as Alprazolam or Xanax), which is a benzodiazepine. The initial dose was 1.5mg which I was later to find out is the equivalent of 30mg of Valium. This dosage knocked me around. I stopped taking it after a couple of days as a result. He then gave me a very low dose of Sinequan (a tricyclic anti depressant). It made little difference to my state of mind. My sleep pattern also disintegrated.

 

As a result of this lack of sleep I went to the Accident and Emergency Department of a public hospital on Christmas Day when no doctor was available at my local clinic. I was prescribed Diazepam (also known as Valium), another benzodiazepine, to facilitate sleep. I was to take 5m a night. I had already taken some of this earlier in the year for the back. I found it worked really well and I was able to sleep adequately. I was now on the road to becoming a benzodiazepine addict.

 

By the end of January 2008 I had descended into a full blown depression. I was admitted to a private hospital in the eastern suburbs of my city. The psychiatrist who treated me prescribed 5mg of Diazepam and 5 mgs of Temazepam (another benzodiazepine) for sleep and Zoloft (an SSRI anti depressant) for my depression.

 

In this hospital I was surrounded by patients who were firmly convinced that drugs were the answer to their problems. Indeed, one patient with bipolar disorder stayed there for five weeks so that his psychiatrist could find the correct drug to treat his condition. Another lady had manic symptoms which needed to be controlled. Without drugs she would not be able to lead a normal life. Most patients were on a variety of anti depressants for a variety of conditions. Some had been on one drug for a number of years but it no longer worked and the purpose of their stay in hospital was to find another one. As you can see, the attitude towards the use of mind altering drugs was very positive. Even though I had my reservations about them I was impressed with what they seemed to be doing for other patients. Moreover, the treating psychiatrist was extremely experienced. It did, however, become very clear to me that the science of psychiatry was about the prescribing of drugs and that it was a hit and miss process.

 

The hospital also provided group sessions with a social worker whose task was to talk about various strategies to address the problems associated with recovering from depression. There was also relaxation twice a week. Many patients availed themselves of the opportunity to go to a nearby facility where patients could swim or work out at a gym.

 

The psychiatrist’s intention was for me to stay in the hospital until my depression settled down and for me to return home once he had arrived at what he called a “treating dose” of SSRI drugs. After ten days it was suggested I go home for the day as a trial. The day was Saturday. If this trial was successful, I would be discharged on the Monday.

 

Instead once the dosage hit 150mg on the Friday evening I was overwhelmed with a horrid dullness and a sense of lassitude the next day. I did travel home with my wife but I was hardly able to get up off the couch or the bed all day once I got there.

 

As a result I stayed in hospital for a few more weeks. The Zoloft was reduced and replaced with Luvox (another SSRI anti depressant). For the next few weeks I felt miserable. I kept asking if the Valium and Temazepam could be part of the problem. I developed suicidal ideation. On my return home we went to our holiday house. One morning I walked down to the beach in a totally miserable state. On reflection I believe this was physical misery. I simple felt awful. My back, which had precipitated my depression, was not too bad at this stage. I now feel cheated about the diagnosis by the psychiatrist that this was all psychological. I have since discovered that SSRI drugs can cause thoughts of suicide.

 

We returned home and I went back into hospital. The psychiatrist challenged me to explain how I could get out of the depression I was in. I brainstormed some ideas and presented them to him. He seemed impressed. I thought he may consider reducing the drugs as I had demonstrated the capacity to work things out for myself. Instead he said: “It’s blue skies with Luvox.”

 

He then increased the dosage significantly to 175mg of Luvox and discharged me from the hospital. Very soon afterwards I was once again afflicted with serious side effects. This time I had tremors for two weeks. I was taken off the drug. By this stage my back was much better and I had been admitted to an outpatient program at a rehabilitation hospital.

 

I was so shocked by what drugs could do that I attempted to stay off them altogether. I had experienced odd sensations throughout my body during the time on benzodiazepines and had been assured by the psychiatrist that these must have been related to the depression I had. When I complained of a sense that I was not entirely in my body as I was walking, he put this down to “depersonalisation”, a psychological condition. He made no effort to explain the addictive properties of benzodiazepine drugs. I now realise that my inability to sleep was almost certainly the result of dependency on Temazepam and Valium.

 

I had been prescribed Zyprexa (an atypical anti psychotic) after another drug, Epilim, had also caused unpleasant side effects. I was not psychotic. The Zyprexa was to be used as a “mood stabiliser” to diminish the anxiety I was perceived to be experiencing and to facilitate sleep. After two weeks during which I stayed off all drugs I had had virtually no sleep. So I contacted the psychiatrist on the telephone. His response was to tell me to take the Zyprexa. As a result, I started taking a small dose. I became frustrated at feeling tired most of the time and I started to slide into depression once more. The psychiatrist was on holiday at the time. Therefore I consulted two local GPs to find out what to do next.

 

I stupidly suggested to them that the dose of Zyprexa be doubled not realising the potential consequences of this. I was so uncertain that I made two separate appointments and asked two separate doctors if such an approach was OK. They both suggested I go ahead.

 

Consequently, in mid June I doubled the dose of Zyprexa from 5mg to 10mg. The next day the movement disorder started. I rang the private hospital and another psychiatrist recommended that I stop the Zyprexa and that the movements would go away. Unfortunately they did not.

 

At first they were intermittent. They persisted. I spent time in the private hospital in July and August. Tests were conducted by a neurologist to ascertain if there was an underlying neurological reason for this condition. He could not find any. I also had an MRI of my brain. He did organise a number of tests one of which indicated that my cholesterol was high. He recommended that I take a daily dose of aspirin and Lipitor on top of the drugs I was already taking.

 

The psychiatrist who had been treating me earlier in the year had resumed overseeing my condition. He prescribed Lyrica to see if it would mitigate the impact of the condition. He talked about the role of GABA in my nervous system. I invited me to find out about it. I did not. I continued to put my faith in him. The Lyrica had no effect. I was also put on 5mg of Diazepam and 10mg of Temazepam once more in order to facilitate sleep.

 

At one point whilst this psychiatrist was again on holiday so I saw another psychiatrist in the hospital. He suggested I take another benzodiazepine (Ativan) as a trial to see if it controlled the disorder. It failed to make any difference and I stopped using it. By this point I was becoming very concerned that this disorder was not going to go away. This was very frightening. As each day progressed I became more and more downhearted about the situation.

 

The disorder meant at this stage that my body experienced trembling and jerking movements. They were also intermittent. They could last for days on end and then relent. I kept asking if the drug, Zyprexa, could possibly have been the cause. I was told that this was not possible. Two doctors imitated symptoms of movement disorders which do result from atypical antipsychotic use. One involved constant facial movements around the mouth and the other a kind of stamping. As mine did not look like these the possibility of drug induced illness was dismissed. It did cross my mind, however, that if these were potential consequences of Zyprexa’s use why was it prescribed for a sleep problem and what, by the time it was given to me, was only mild depression. I was hardly psychotic at this point. Indeed, frequently, throughout my ordeal I was asked if I had seen visions or heard voices. My answer was always no.

 

During one period of relief lasting three and a half days my hopes rose. Sadly the symptoms returned. I was so distraught that when I went to pick an object off the floor I punched the sofa in frustration and broke my hand. This necessitated an operation a short time after.

 

In September I was referred to a psychotherapist. The theory had been developed that I had conversion disorder: that my movement disorder had been caused by some deep psychological issues which needed to be brought to the surface in order for me to be cured. After a number of sessions we agreed that no electric light bulb was going off in my mind and that there was no point in continuing to try to find one.

 

At the end of our last session the psychotherapist prescribed Rivotril (another benzodiazepine) and Avanza (an anti depressant). I started to take larger and larger doses of Diazepam and Rivotril in January 2009. My local GP withdrew the Rivotril and used Diazepam instead. I was now taking up to 30 mg of Diazepam and 5 mg of Temazepam a day.

 

I was finding it extremely difficult to cope with the disorder. I was referred to an eminent psychiatrist, who set out to rehabilitate me by admitting me again to the private hospital. He was concerned about my addiction to benzodiazepines. I was withdrawn from them except for the sleeping medication (5mg of Temazepam and 5 mg of Valium). It should be pointed out here that he wanted me to withdraw abruptly from all of the benzodiazepine drugs at this time. He did not seem to have any understanding of the consequences of doing this. I started to feel even shakier and the trembling inside got worse. This could have been and probably was the result of benzodiazepine withdrawal.

 

He also used Largactil (a typical anti psychotic, one of the older forms of this drug which has been implicated in movement disorders such as Tardive Dyskenaesthia) and Neulactil with little effect. It strikes me now as strange that drugs implicated in causing movement disorders were used to attempt to cure them. But I have since found out that indeed Zyprexa is used for this purpose too. I have also learnt the difference between atypical and typical antipsychotics. Typical is the older form of the drug. It is seen by the medical profession as less dangerous than the newer atypical antipsychotics. I have reflected that this a dubious form of labelling which has resulted in big sales for pharmaceutical companies as doctors and psychiatrists are misled into believing they are safe.

 

A different marketing technique was used when concerns were raised about Valium in the 1970s. New, “better”, benzodiazepine drugs were invented and they were marketed as safer and more effective. They were also much more potent. Consequently, patients found themselves addicted to much higher levels and took much longer to get off them. Even worse many remained dependent on them taking higher and higher doses unable to free themselves from these drugs’ pernicious effects 

 

Baclofen (another addictive drug) and Inderal (a beta blocker) were tried to mitigate the disorder. The psychiatrist also prescribed Seroquel (another atypical anti psychotic). They failed to make any impression.

 

In a way I understand the immense difficulty confronting someone attempting to treat me at this point. The psychiatrist was a positive man. He wanted to encourage me to do the best I could in these circumstances. He insisted I go to creative arts classes and that I go out walking with some of the patients each day. I remember the positive conversations he had with a patient in the hospital room next door. I kept thinking: he is making progress with her but he is going to me a brick wall of despondency and despair when he sees me. 

 

By this stage I was starting to have suicidal ideation. Indeed this had been going on for some time. Even in the previous year I had stood at a railway bridge not far from the hospital and had thought about jumping. I had also spent time standing on a chair in the shower attached to my room in the hospital and rehearsed doing away with myself. At one stage I was placed on suicide watch which involved a nurse checking on me every hour.

 

During the early months of the year I was admitted to the hospital twice. On the second occasion my wife journeyed overseas. I felt alone. I was unable to participate in any of the activities by then except to go walking on the days when my disorder was not overwhelming me. One day I ventured to the social worker’s session. I could not remain still in my seat. I made a very desperate statement about my situation to the group. He asked me to leave.

 

Nearing the time my wife was to return I had become absolutely devastated. I was no longer able to communicate effectively with people. My days were spent in terrible isolation. I had been a garrulous outgoing person. Now I could not put a conversation together with anyone. I slept extremely poorly. I went into the dining room and spoke to no one.

 

Occasionally, the disorder relented and I sort of cheered up only to be thrown down into a deep despondency once more when it returned. There was talk of Electro Convulsive Therapy. The psychiatrist felt that this was the last resort. I was to sign some papers and on the following day start a course of six treatments.

 

On the day of the signing I felt afraid and that I had had enough so I walked down to the railway bridge near the hospital and put one foot over the fence. A council worker in his car must have seen me. He stopped and summoned me to him. Soon afterwards the police arrived. One male officer drew his baton and threatened me with it. He said nothing. I attempted to protest but I was put in a paddy wagon and taken to the nearest Accident and Emergency Ward. I felt so utterly hopeless in the wagon.

 

The staff at the hospital assessed me and sent me back in an ambulance to the private hospital. The psychiatrist at this point refused to treat me any more. He had already said that he was too old to deal with someone contemplating suicide. The admissions officer told me as I no longer had a treating psychiatrist I would have to go home. I pleaded with him but he remained firm.

 

On the next morning I met with the psychiatrist. He was incandescent. He said that when I should have been filling in forms for the ECT what was I doing instead? He said he had warned me about suicide in previous meetings. So I was to go home in a taxi to an empty house. My wife was en route from overseas at the time. I said to him that in normal circumstances we would have met as equals.

 

The next few days were dominated by utter despair. I started taking some anti depressant tablets and just kept going. After a couple of hours I realised I had taken twelve of them. I rang the poisons helpline. I was advised to go to the emergency department but did not go. I was fortunate I did not consume the benzodiazepine tablets instead. I now know that they are implicated in many suicides.

 

On the Saturday of that week I woke up without the symptoms of the disorder. I felt that I had had enough. I drove to a beach famous for its currents. I walked in and kept going into the waves. Two young men who were fishing called to me. I responded by going back to the shore. Once again the police were summoned. I was taken by ambulance to a public hospital and sent to a mental health facility for assessment. That evening I was given Valium to control my anxiety and for sleep. My disorder returned.

 

Next day I was assessed as not being psychotic. I was asked the usual questions about hearing voices and seeing visions to which I answered no as I always did. Consequently, I was sent home.

 

I honestly believe that I never intended to commit suicide. I was simply in such a total state of utter despondency and hopelessness that the future lay before me as nothing more than a constant battle to survive in the face of the disorder and the horrid sensations which pervaded my body. Indeed I had always held the belief that ending one’s life was wrong and hold that view more firmly than ever now. But I seemed to have nowhere to turn. And my one last chance, ECT, had it appeared been denied me. 

 

At this point I should describe what the movement disorder was like. It involved jerking movements throughout my body. Sometimes I found it difficult to walk properly. On occasions I had to crawl. There were also periods when it went away for as little as an hour or so and for as long as a few days only to return. I also had unpleasant sensations throughout my body and very poor sleep. I now think that the problems with sleep and the internal trembling were the result of benzodiazepine dependency. So there is every possibility that I was suffering from the impact of two mind altering drugs at the same time- a benzodiazepine dependency and a movement disorder thanks to Zyprexa. Moreover, I was taking another powerful anti depressant for most of this ordeal, Avanza, and I was having other drugs to see if they would ameliorate the movement disorder.

 

For the next couple of months I was in the care of my local GP. He sent me for more tests with neurologists but nothing was found. 

 

I was referred to another psychiatrist in early May. He did consider some new strategies. Hypnotherapy was mooted but nothing ever came of the idea. I was referred to a psychiatrist at a different private hospital. He ran a programme there using Trans Cranial Magnetic Stimulation. This involves magnetic signals being transmitted through the brain. Sadly, as I would have to sit still while the signals were being transmitted, I was not able to undergo this treatment.

 

My movements started to become exaggerated in June and July. I was unable to lie still on the bed and I bounced around all day with very little sleep at night. The crisis assessment team attached to the nearest public hospital was called in and in August I was admitted as an involuntary patient to a mental ward at that hospital.

 

The extreme nature of the movement disorder was truly terrible at this point. I was put in a High Dependency Ward with psychotic patients. I was treated with an immense amount of suspicion. The nurses feared that I would abscond rather than allow myself to be subjected to ECT.

 

I was given nine treatments of ECT (six unilateral and three bilateral). I do not remember much about my stay in the hospital. Short term memory loss is a symptom of ECT. Valium was withdrawn at this stage as the psychiatrists felt it was inappropriate to be taking it with anaesthetics. I continued to take Imovane (a Z drug) which I had been taking instead of Temazepam for sleep since early June. The ECT provided me with a short break of a few days from my condition. I was sent home only for the condition to return.

 

After that I became housebound for about three months. I was extremely dispirited. I was prescribed Seroquel and later Alprazolam for anxiety.  The psychiatrist who was treating me told me that I could take between .25mg and 2mg of Alprazolam on any given day for anxiety. (I was to discover later that he was suggesting I take anywhere between the equivalent of 10mg and 40mg of Valium on any day.) At the time I did not realise Alprazolam was the same drug which I had been prescribed in December 2007. This was the Kalma which had given me so many unpleasant side effects. Yet it had a different name and colour. It also looked entirely different. I was also taking the Imovane as well. So I could easily have been taking around 45mg to 50 mg of Valium equivalent each day. I only did this for a few weeks but I am sure it made it more difficult to eventually get off these drugs when the time came to do so.

 

The psychiatrist also put me on Edronax (another anti depressant) in the hope that this might work better than Avanza. It did not. Benztropine was also tried to see if that would reduce the movements. It didn’t work either.

 

In early November whilst my psychiatrist was treating me with Alprazolam I made the decision to attempt to walk early in the morning no matter how I felt. I managed to achieve this on most days even though the disorder usually recurred almost immediately I walked through the door at the end of the walk. The sleeping medication was becoming less and less effective. Indeed, I was starting to take more of it, presumably as a result of tolerance to the drug. Moreover, I was starting to have increasingly unpleasant sensations when I awoke after very little sleep. This could also be attributed to the addition of Alprazolam to my daily dose of Imovane.

 

All of a sudden for no obvious reason after over seventeen months the movement disorder stopped. I decided to cease taking the Alprozolam and Imovane. Again, as in May 2008, I was unable to sleep. At this point, I found the work of Professor Heather Ashton, Emeritus Professor at Newcastle-on Tyne in England, on the Internet. I quickly worked out that I was addicted to Benzodiazepines and Z drugs. I approached the local GP and we agreed to start tapering off these drugs. It should be noted that whilst benzodiazepines and Z drugs come from different families of drugs, they work on the same receptors. Valium is the recommended drug of withdrawal because it has relatively long half life and comes in the form of low dosage tablets, which can be cut up as the taper progresses. I was unhappy about how long the process was going to take and tried to stay off the drugs for a few more days. I remained unable to sleep.

 

Around this time I looked at my body. I had lost a lot of weight during the disorder. I was always a thin person but by this time my veins protruded from my arms and my appearance was ashen as I had hardly been out in the sunshine for months. I was determined that no matter what else happened I was going to regain my fitness and try to gain some weight. My first decision was to continue to walk each day but to do so in the sunlight and to gradually build up my strength so that I could join a gym.

 

The psychiatrist had arranged for me to enter the Neuro Psychiatric Unit at a major public hospital. Even though my movement disorder had stopped, it was felt a series of tests should be conducted. I entered the hospital in December. I explained that I was unable to sleep. I was persuaded to take a daily dose of 10mg of Temazepam whilst I was there. I stayed for about ten days. I continued to experience horrible sensations throughout my body and internal shaking. I now understand these were inter-dose withdrawal symptoms from the Temazepam and broader withdrawal symptoms from the concoction of Imovane and Alprazolam I had been taking earlier.

 

It is interesting that the psychiatrists attached to this unit were clear in that they would not prescribe any anti psychotics for me. They both felt that on the balance of probabilities the movement disorder was caused by the Zyprexa.

 

As I have said before in this account throughout my ordeal I was constantly being asked by medical practitioners if I was hearing voices or seeing visions. My answer even at times of real distress was always no. One psychiatrist declared categorically I was not psychotic. It upsets me that I was prescribed anti psychotic drugs in May 2008 which carry risks of weight gain and diabetes never mind the potential for movement disorders for sleep problems and what was then fairly minor depression.

 

It is also noteworthy that the psychiatrists at the Neuro Psychiatric Unit said they were not in a position to help me with my problem with sleep. They seemed to have little understanding of benzodiazepine dependency. Indeed, they recommended I take a short acting benzodiazepine. I spoke to a neurologist at the hospital about all the internal disturbing sensations I was experiencing and he did not come to any conclusion about their cause. The only person who warned me about these drugs was a general practitioner attached to the unit who warned me about the long term impact of taking benzodiazepines.

 

During my time in the unit I underwent a range of tests. One of them indicated slight changes to the occipital lobe of my brain which could be as the psychiatrist put it a variation of the normal structure. I mention this given the recent furore in the UK about findings of a committee in the early 1980s which linked benzodiazepines with brain damage.

 

After leaving the hospital I underwent another eleven day attempt at total withdrawal. Again I failed to get any more than a tiny amount of sleep. Consequently, I visited the local GP again in January. We negotiated a taper starting from 7.5 mgs of Valium after a quick cross over from Temazepam, which I had been taking on the advice of a pharmacist for a few days prior to seeing him.

 

The process was a rocky one. Sleep did return. Gradually, the dosage was reduced in a haphazard way as the doctor was concerned about my mental state and ability to cope withdrawal after the trauma I had already been through. I experienced strange sensations all over my body ceaselessly throughout the ensuing months. Moreover, I was afflicted with burning on awakening extremely early each morning. I also had jerking in my muscles particularly in the thighs. I also had tinnitus for a short time.

 

It was terrific to have a relationship with a GP who was willing to see me on a regular basis. Towards the end the taper became very difficult. This could have been the result of withdrawal or toxicity. I will never know. As a result we cut the Valium dosage more quickly over the last few weeks. This is not the advised method advocated by many support groups. They suggest one go slowly and surely. Indeed, many people slow down their taper down towards the end. For me the continued presence of benzodiazepines in my system made me ill. I was most likely suffering from toxicity and had been for some time.

 

Psychologically, it was an enormous challenge getting through this. I had already suffered a movement disorder and to be confronted by a withdrawal with no definite end was daunting in the extreme. Almost every minute of every day I motivated myself. I kept telling myself that I had no choice but to go through with this. I read widely on the subject. I was helped by reading Jack Hobson-Dupont’s account, The Benzo Book, about how he went about withdrawing from 3mg of Xanax- the equivalent of 60mg of Valium. I said to myself if he can do it from a much higher level I could do it from 7.5mg of Valium.

 

There was also a lot of anger. I still find it hard to grasp how a psychiatrist of 30 years experience could have made the mistake of prescribing Zyprexa with all the dangers associated with that drug when it should have been blindingly obvious that sleep was being affected by a sudden, complete secession from Valium and Temazepam. I did approach a legal firm but was left with the impression that proving that my movement disorder was caused by an anti psychotic was going to be difficult to prove. I was not warned about the dangers associated with using benzodiazepines for sleep and anxiety nor was anything said about Zyprexa’s dubious history. I did contemplate legal action on this basis but decided not to.

 

Throughout the last five months of the taper and during the time since I stopped taking Valium I was also supported by people at various websites most notably benzoisland and TRAP. The people who are moderators and administrators of these sites deserve immense praise for the work they do. Much of the medical profession have little idea of the long term damaging impact of the drugs they prescribe and are unwilling to help people get off them when problems result. The sites are an oasis in a desert as far as many victims of tranquillisers are concerned.

 

During this time no matter how unwell I felt I walked every day for about 40 minutes except on the days when I went to the gym. I also embarked on doing lots of jobs around the house such as painting, cleaning and fixing things up around the house. I was strong enough in early February to join a gym and have a fairly rigorous programme set up for me. No matter how rotten I felt I persisted with this except for June when I was so overwhelmed by withdrawal symptoms that I just walked every day. The doctor encouraged me to go back to the gym again in early July and I have been going regularly about twice a week since. One benefit of all this and attention to my diet is that my muscle tone has returned and I have gained seven kilograms this year. My cholesterol level returned to an acceptable level early on in the taper. During the later part of the disorder I had done virtually no exercise and had eaten lots comfort food such as ice cream.

 

During the disorder I had lost interest in everything so I made an effort to read the newspaper every day and do cryptic crosswords to keep my mind active. I also started reading novels again and watching movies on the TV. I joined the University of the Third Age (a voluntary organisation which runs classes for older people). Again I forced myself to go to the scheduled sessions even though sometimes I felt awful and was really struggling. My life was and has remained very limited. It has been difficult to have trust in a body undergoing such turmoil but I decided I must communicate in some way with people outside rather than staying at home with my wife and dog. My wife was extremely considerate throughout this. Thanks to her I was able to venture occasionally to the cinema, theatre or a restaurant.

 

I did drink some alcohol during the early part of the taper but once I joined TRAP and was told by other members that this was inadvisable as it works on the same receptors as benzodiazepines I gave up altogether. It is now some time since I drank any alcohol and I have to say I don’t really miss it. So in spite of the torrid nature of the taper and post taper experience I can say that other aspects of my health have improved. It has required a lot of work but I have been given a second chance at life and the tantalising prospect of full health lies before me. I must take this opportunity and that has been what has driven me ever since November of last year.

 

Eventually in August this year I took my last dose of Diazepam (Valium). I was hoping that it would be it and that I would quickly get back to normal. Unfortunately, that did not happen. I continued to be afflicted by burning sensations. The big bonus was that I was able to sleep fitfully. I was afraid that I would not be able to sleep like during my other periods of taking no sleeping medication. Clearly the taper had worked in this respect. This gave me encouragement that the other symptoms would gradually dissipate.

 

Indeed, the withdrawal symptoms have gradually diminished although they remain. My sleep pattern is slowly returning to normal. Some nights are poor. Others are not so bad. There are still some strange sensations. I still don’t know when it will finally all be over. I have lost a substantial amount of my life to these drugs. I turned to psychiatrists in a time of depression only to have my life almost irretrievably destroyed. I am grateful that I have survived this and I am determined to make as much as I can out of the future.

My advice to anyone considering embarking on a course of drugs associated with the treatment of sleep disorders, depression or anxiety is to think very carefully before committing oneself. My susceptibility to mind altering drugs may be extreme and others may not suffer what I did. However, is the risk worth taking? At the very least it would be advisable to do some homework on these drugs and their potential impact. I have had a most unfortunate experience. However, in a sense I am lucky I have had a movement disorder which stopped. Moreover, I was able to work out how to get off the benzodiazepines and Z drugs using a taper. What would have happened to me if the disorder had not stopped?

 

 

 

 

[[te...]]

Robert,

Glad to see you back. Re-read your in-depth story. Thanks for your candidness and all the details. Written so well! This is sure to help others. Very appreciative, T2

[[ev...]]

Hi teacher2

 

Thanks for your encouraging post. I will try to keep on this site and see if I can help people. I have spent many hours on the internet learning about psychiatric drugs. I did this because I was so ill during my taper and I could not do much. One thing which has really struck me about psychiatry is that there is an absolute belief in the efficacy of psychiatric drugs on the part of the profession. Indeed, this was reinforced when I sent a letter of concern a few months ago to my first psychiatrist. He defended his use of drugs to the hilt in a detailed response. So most people who go to see them end up on multiple drugs not just benzos. I was a victim of this. So I appreciate the enormous challenge which confronts anyone who decides to come off these drugs.

 

I have posted a link to a simple guide to getting off psychiatric drugs on the other medications section. But if anyone happens to be on this page the link is http://theicarusproject.net/downloads/ComingOffPsychDrugsHarmReductGuide1Edonline.pdf

 

This is so useful in helping anyone to decide whether or not to get off psychiatric drugs and how to go about it he or she does.

 

Ivan

[[la...]]

HI Ivan,

 

Glad to see you here

Laura

[[Fr...]]

Hi Ivan,

 

Just saw your thread and wanted to let you know that I have joined the ranks here.  I am going offline now, but will read your post tomorrow.  It has been an exhausting day for us at TRAP...as you could imagine. 

 

Frizz

[[ev...]]

Hi frizz and Laura

 

Glad to see you here.

 

Best wishes

 

Ivan

 

PS Yes it has been a strange day.

[[te...]]

Just wanted to know what happened to TRAP? Hope you are doing well! T2

[[ev...]]

Hi teacher2

 

The administrator of TRAP who calls himself Linux decided after a number of years of running the site that he needed to have more time in his llfe. He feels that it is time he earns some money and gets away from what he calls benzoworld. I can imagine just how demanding it is managing a site like TRAP. The people looking for help have obviously multiple problems and it must be very difficult psychologically carrying that burden. He did not emphasise the security issues associated with sites like cesspool of madness but that possibly played a part in it too.

 

Ivan

 

 

[[st...]]

Hi Ivan.  Welcome to BB.  Congratulations on how far you have come on this journey.

 

Patty  xo

[[ev...]]

Thanks for the welcome. Now that I have recovered I hope I can help a few people get better.

 

Ivan

[[ev...]]

This is the update I posted on my blog. I hope it encourages people.

 

This is what has happened since:

 

As I said in my road to recovery piece I started to go out a lot more in April of 2011. I was able to build on this throughout the second half of last year. At first I was satisfied with going to University of the Third Age classes and going to see Aussie Rules matches no matter how rotten I felt. I took the view if I could get through it I should go. The burning sensations were continuing but I seemed able to get around and maintain conversations.

 

As early as July I had days which were almost symptom free. This led me to become somewhat over-optimistic. For example, I agreed to book a flight to Japan in December as early as July. I had to cancel the booking later on as I realised that these windows were only going to be intermittent.

 

We did go to Sydney for a few days (I live in Melbourne) in October which was fantastic. Even though I struggled for sleep in a hotel I was able to visit the major tourist attractions and go to the theatre in the evening. I saw Mary Poppins and The Jersey Boys. We went around the Harbour and visited Taronga Zoo. After what I have been through I thought this was miraculous.

 

We also decided to sell our holiday house on the coast which involved a lot of preparation. We had to go down there on anumber of occasions. My avatar has a picture of the place. It is called Venus Bay. We had to clean and make all sorts of arrangements. Again I felt that it was truly marvellous that I could do this.

 

Towards the end of November things started to really look up. I took some time off from the gym as I had been feeling unwell. When I did start again it was a real struggle but I pushed on and was rewarded by recovering much more quickly after each visit towards the end of December.

 

My wfe went to Japan without me in December but I managed like the previous year to take care of myself and my Golden Retriever. Compared to the the end of 2010 I was much better. Instead of dragging myself through each day as I did when my wife was in Japan and Europe, this time I got out and about visiting friends, going to the movies and taking the dog for a walk.

 

This month I have become so confident about the way things are going we have booked to go to Japan in March and April and to go on a trip to Britain, Italy and France in June and July. These trips are really important for me not just because they indicate how far I have come but also because my wife's relatives live in Japan and I have not been able to visit them since prior to my ilness in 2007. Moreover, my mum lives in Liverpool in England and I have not seen her since 2006 so this trip is a really big deal for me.

 

One thing I have reflected on ever since I have been on support forums is that I was able to get through this without the prssure of work commitments and family. This is why I have had the luxury- for want of a better word- of being able to concentrate on recovering without other demands and expectations. However, I really do understand how immensely difficult it must be to go through the tortures of the taper and recovery with all of the mysterious symptoms inflicted on the body when one is also expected to take care of the family and go to work. My heart goes out therefore to anyone going through this. Moreover, I can uderstan why they might feel the necessity of finding some "assistance" during the taper and recovery from benzodiazepines from a psychiatric drug even though this is something which I would never do.

 

At this stage of my recovery I feel as if I am almost there. My sleep is not perfect. It is fragmented and I still wake very early compared to pre-illness days. But I am able to sustain things in a way which was impossible just a few months ago.

 

Now I am looking for new challenges. I have offered to run classes in History and Writing at the U3A (I was a History and English teacher), I am thinking about volunteering to help a refugee settle in to this country with migrant education service here in Melbourne and I have expressed interest in being a telephone counsellor at Reconnexion, the only organisation in Australia which helps people with tranquilliser addiction. I have learnt so much about psychiatric drugs since late 2009 and I was helped so much by the people at Reconnexion that I felt I should try to do something in return.

 

So this is a message of hope. I know how imprtant reassurance is. I also know that everyone is different. But for me there was no alternative. Psychiatric drugs did me an immense amount of harm and I do not wish to go anywhere near them again. I do appreciate, however, that they have helped others or at least people believe that they have benefited from them. So that is why I agree with Will Hall, the author of The Harm Reduction Guide to Getting Off Psychiatric Drugs when he says the three keys are:

 

1. Getting Support by finding a medical practitioner whom you can really trust, by having family and friends onside and by learning as much as you can about psychiatric drugs so that you can speak as an equal to doctors and psychiatrists and explain what you are doing to people and educate them

 

2. Establishing a Wellness Program which involves exercise and diet

 

3. And Having an Actual Medical Plan to get off the drugs which suits your needs

 

From time to time I will update this and let you know what I have been doing. I will be forever grateful to the people who helped me on the now sadly closed TRAP site and to those members who have crossed over from there I'd like to say hi and wish you all the best of luck on your continuing journeys. And to everyone who reads this best wishes to you too.

 

Ivan

 

[[ai...]]

Ivan,

 

Thank you so much for posting updates to your progress...I'm so happy that life is continuing to improve for you. In your words I can feel your hope and zest for life returning. As you stated, it's so important for those of us still in the grips of withdrawal to know we'll keep improving too. I do hope you will post more updates as it's so nice to hear how well recovered sufferers continue to do...recovery is NOT an illusion!

 

Again, thanks so much! XXOO

[[Ol...]]

Hi Ivan,

I just happened to see your post today.

 

I'm sorry you haven't felt so good.

 

I'm still struggling. I had a big setback around Christmas when it was found I had a serious vitamin b12 deficiency. I'm giving myself b12 injections. It seems a recovery from this could take a few monthss. It never rains but it pours!

 

I must send you a pici. It had slipped my mind.

 

I just play silly games on here these days to help with the time with Laura and Flip and gang.

Have you seen the party thread? Under off-topic.

 

If you ever feel like silly, mindless, light relief look us up 

 

best wishes

Dave

[[Fr...]]

This is the update I posted on my blog. I hope it encourages people.

 

This is what has happened since:

 

As I said in my road to recovery piece I started to go out a lot more in April of 2011. I was able to build on this throughout the second half of last year. At first I was satisfied with going to University of the Third Age classes and going to see Aussie Rules matches no matter how rotten I felt. I took the view if I could get through it I should go. The burning sensations were continuing but I seemed able to get around and maintain conversations.

 

As early as July I had days which were almost symptom free. This led me to become somewhat over-optimistic. For example, I agreed to book a flight to Japan in December as early as July. I had to cancel the booking later on as I realised that these windows were only going to be intermittent.

 

We did go to Sydney for a few days (I live in Melbourne) in October which was fantastic. Even though I struggled for sleep in a hotel I was able to visit the major tourist attractions and go to the theatre in the evening. I saw Mary Poppins and The Jersey Boys. We went around the Harbour and visited Taronga Zoo. After what I have been through I thought this was miraculous.

 

We also decided to sell our holiday house on the coast which involved a lot of preparation. We had to go down there on anumber of occasions. My avatar has a picture of the place. It is called Venus Bay. We had to clean and make all sorts of arrangements. Again I felt that it was truly marvellous that I could do this.

 

Towards the end of November things started to really look up. I took some time off from the gym as I had been feeling unwell. When I did start again it was a real struggle but I pushed on and was rewarded by recovering much more quickly after each visit towards the end of December.

 

My wfe went to Japan without me in December but I managed like the previous year to take care of myself and my Golden Retriever. Compared to the the end of 2010 I was much better. Instead of dragging myself through each day as I did when my wife was in Japan and Europe, this time I got out and about visiting friends, going to the movies and taking the dog for a walk.

 

This month I have become so confident about the way things are going we have booked to go to Japan in March and April and to go on a trip to Britain, Italy and France in June and July. These trips are really important for me not just because they indicate how far I have come but also because my wife's relatives live in Japan and I have not been able to visit them since prior to my ilness in 2007. Moreover, my mum lives in Liverpool in England and I have not seen her since 2006 so this trip is a really big deal for me.

 

One thing I have reflected on ever since I have been on support forums is that I was able to get through this without the prssure of work commitments and family. This is why I have had the luxury- for want of a better word- of being able to concentrate on recovering without other demands and expectations. However, I really do understand how immensely difficult it must be to go through the tortures of the taper and recovery with all of the mysterious symptoms inflicted on the body when one is also expected to take care of the family and go to work. My heart goes out therefore to anyone going through this. Moreover, I can uderstan why they might feel the necessity of finding some "assistance" during the taper and recovery from benzodiazepines from a psychiatric drug even though this is something which I would never do.

 

At this stage of my recovery I feel as if I am almost there. My sleep is not perfect. It is fragmented and I still wake very early compared to pre-illness days. But I am able to sustain things in a way which was impossible just a few months ago.

 

Now I am looking for new challenges. I have offered to run classes in History and Writing at the U3A (I was a History and English teacher), I am thinking about volunteering to help a refugee settle in to this country with migrant education service here in Melbourne and I have expressed interest in being a telephone counsellor at Reconnexion, the only organisation in Australia which helps people with tranquilliser addiction. I have learnt so much about psychiatric drugs since late 2009 and I was helped so much by the people at Reconnexion that I felt I should try to do something in return.

 

So this is a message of hope. I know how imprtant reassurance is. I also know that everyone is different. But for me there was no alternative. Psychiatric drugs did me an immense amount of harm and I do not wish to go anywhere near them again. I do appreciate, however, that they have helped others or at least people believe that they have benefited from them. So that is why I agree with Will Hall, the author of The Harm Reduction Guide to Getting Off Psychiatric Drugs when he says the three keys are:

 

1. Getting Support by finding a medical practitioner whom you can really trust, by having family and friends onside and by learning as much as you can about psychiatric drugs so that you can speak as an equal to doctors and psychiatrists and explain what you are doing to people and educate them

 

2. Establishing a Wellness Program which involves exercise and diet

 

3. And Having an Actual Medical Plan to get off the drugs which suits your needs

 

From time to time I will update this and let you know what I have been doing. I will be forever grateful to the people who helped me on the now sadly closed TRAP site and to those members who have crossed over from there I'd like to say hi and wish you all the best of luck on your continuing journeys. And to everyone who reads this best wishes to you too.

 

Ivan

 

Hi Ivan,

 

What a great report!  I am so happy for you.  You have come a long way, my friend.  The days that you once suffered on a daily basis seem to be gone, and full recovery is soon to be your way of life.

 

Thank you so much for posting this.  It gives so many hope to know that recovery and healing is possible. 

 

I hope the very best for you, Ivan.  Have wonderful travels with your wife, enjoy, laugh, and experience life again!

 

My life is steadily improving also.  I have other pre-existing health problems, but they are little, compared to the benzo ordeal I endured.  My sleep is improved 95+%, with most other of the old symptoms gone.  We did it, Ivan. 

 

Take care, and thank you again for your message.

 

Frizz

[[ev...]]

Hi Frizz

 

Sorry it has taken me so long to reply. I have been away for a while. My wife and I went to Japan for two weeks. I coped really well with the travel there and during the trip. We got to see many places including Nara with its shrines and temples and Kyoto, the old imperial capital. We stayed in my brother-in-law's holiday house at the base off Mount Fuji and we saw cherry blossom in Tokyo.

 

For me this was something of a miracle given that this time three years ago I had just been told to leave a private mental hospital as I was too depressed for them to help me anymore thanks to my movement disorder. I was in the hands of a Crisis Assessment and Treatment Team and not much later I had ECT as an involuntary patient. So much has changed.

 

Unfortunately, however, we had to travel home via Sydney overnight from Japan and since my return I have been assailed with burning sensations again. I googled these symptoms which suggest I have post-travel fatigue. That's what I am hoping it is rather than a return of the benzodiazepine withdrawal symptoms.

 

While I was away, I tried to drink beer on a couple of occasions. Not very much but I paid for that so I can only assume that even though it is now 20 months since my last fragment of Valium that the body is still recovering.

 

It is terrific to read that your symptoms are improving and that your sleep inparticular is so much better.

 

My next big venture is a trip to England, northern Italy (Milan, Verona and Siena) and Paris in June and July. I am tagging along with my wife and her friend who had organised the trip when I said I did not think I'd be up to travel this year. They are going mainly to see ballet and opera. But I will get to see my mum in Liverpool before the cultural part of the journey. I am really hoping my body will be up for such a demanding experience.

 

Best wishes to everyone on this site who is reading this. At lweast a couple of us have made tremandous strides so that I hope will encourage others on their way to freedom from benzodiazepines.

 

Ivan