These are the testimonies of victims of the benzodiazepine medical disaster. We implore the media and politicians to take action.
Testimonies are from both the UK and USA.
Barbara Bell, active life snatched away by benzodiazepines
It was about 12 years ago that I became unwell. I had gone through a tough time and a sudden bereavement of a family member which caused me to visit my GP. I couldn’t sleep and was struggling. I was prescribed diazepam and continued to take it as prescribed over a long period of time. I didn’t take a large dose and sometimes didn’t take any at all. I never realised how the drug was gradually impacting on my health. I started to feel unwell but trusted my GPs and never thought of the drug causing the problems.
I suffered from dizziness and I would get feelings as though I was about to pass out. I had heart arrhythmia, faintness, gastric problems and low blood pressure. I felt a wreck and couldn’t do anything at all. My previous busy life was now in tatters. Prior to this I had a career, was a walk leader and had many hobbies including painting and golf. All these had been snatched away and worse still I couldn’t do things for my family; I was too ill.
It got to a point where my GP sent me for tests to rule out a brain tumour and heart problems but all were negative. Still I became more unwell with the most horrible symptoms. I tried acupuncture, homeopathy, anything to help this mystery illness. It wasn’t until I found the guidance given in the Professor Heather Ashton Manual that I realised that the drugs I was being prescribed were in fact exactly what were making me so unwell and that the drug was highly addictive.
I cried with relief when I read the manual because all the symptoms of tolerance were exactly what I was suffering. Little did I know then that this was just the beginning of my journey to hell.
I immediately started to taper off the drug by following the withdrawal guidance in the manual. I was delighted and at first didn’t experience too many problems. My GPs were not familiar with the correct withdrawal procedure or the ill effects of the drug, so I reduced with the help of the manual and also the charities that I had by now found online.
When I reached almost the end of my taper the whole thing snowballed. Maybe I had needed to slow down at the end, I didn’t know, and the only guide I had was the manual. Then I experienced the most horrific symptoms of panic attacks, agoraphobia and crushing rib pain.
By now I had been forced to give up my job as a medical interviewer, the drug had impacted on every area of my life.
My family were worried and I was terrified that the drug had trapped me and I really didn’t know what to do.
By now my surgery had become involved and they said that they didn’t have the expertise to deal with withdrawal. Desperate, I sought the help of the drug and alcohol service. They didn’t seem to have any knowledge of withdrawal from prescribed drugs and I was given a withdrawal schedule that was even faster than the one I had just attempted.
Because of this I asked to see the consultant who had drawn up the schedule for advice. He met with me and told me that coming off the drugs was like a loose tooth. Saying, “you can either wiggle it for ages or extract it quickly”. I was by now desperate and so decided to follow his advice and, despite warnings from the charity, I entered his detox unit. I just wanted to be free of the drug and so I undertook his regime of a ‘slow’ withdrawal of 1mg every 2 days. (In effect this detox is like a cold turkey.)
The unit was for illegal drug users and for alcoholics and I was the only person there at the time coming off a prescription drug. I went into the unit on two occasions and on the second occasion came off completely. I was given drugs to stop me from having a seizure while I was being detoxed and at the end the consultant said, “well you did really well and you didn’t die, you can go home with my blessing”.
By now those who had been taken off hard drugs in the unit were recovering while I was getting progressively worse every day. How I got home I will never know, but my husband came for me and by this time I had lost memory and coordination. The pain was horrific and my ears were ringing constantly. I felt as though my ribs were being crushed and I could hardly breathe for the pain. It was just like those patients coming off heroin but unlike those my suffering didn’t go away-it got worse.
The pain became progressively worse over the next weeks until it was unbearable. I was desperate and phoned the unit up many times. No one would help, I was laughed at when I mentioned The Professor Ashton Protocol to the unit manager and the consultant refused to even speak with me. He had issued orders to my GP that I was never to be given diazepam again and I was no longer his patient.
To take the drug again was the last thing I ever wanted but by now I had been in touch with the charity, who told me I needed to go back on the drug and taper properly as the pain could get even worse and I was also at risk of a seizure. The charity spoke with my GP who did everything to help and once again I was put back on the drug to taper for the third time. By now I wondered if I would ever be free.
The pain had spread to my legs and feet as well as my body and I couldn’t even stand up long enough to brush my teeth. My fingers bent backward and became stuck, my hair started to fall out along with my eyebrows, I lost weight and my eyes couldn’t stand the light. The rapid detox left me so ill that I was now completely house-bound helpless and bedridden for two years.
For two years I relied entirely on my husband who had to do everything for me. I also had the support of withdrawal charities who spoke with me daily, their encouragement and words (“you WILL recover”) kept me going. I realise now that the way I was taken off was far too rapid and this is why I have suffered such devastating consequences. The charities and the Ashton protocol all recommend a very slow taper.
After almost two years I finally took the last 1/4 mg of the drug. I hated even seeing the drug and despite still being in agonising pain, I had made it off the drug at last.
It is now almost five years since that day and 7 years since the horrific detox. Over this time I can now walk again and my hair and eyebrows are back! My memory and concentration are improved along with the tinnitus, which comes and goes. However, I am still suffering from horrible nerve pain in my body. Three of my fingers are still stuck and concentration and sleep are still affected. I know I still have a long way to go.
If anyone had told me how a prescribed drug could cause this endless suffering I would never have believed it. Despite that, I am alive, hopefully recovering, and I have won the hardest longest battle I could ever have imagined.
Nick, lives in the US, 13 years lost to benzodiazepines
I was gravely harmed by a benzodiazepine prescription, written for me by my doctor that I took according to their directions. Following my doctors’ instructions to take these drugs has, to date, claimed more than a decade of my life. I desperately want it to stop happening to more innocent people and for people to stop losing their lives over ignorance and greed.
Here is a short summary of my story: I was a young woman in my mid-20s, newly graduated from a professional masters program, and just starting my first job when I was first prescribed benzodiazepines by a physician for “work stress”. There was no informed consent or warning given to me (by my doctor or pharmacist) about the dangers of these drugs when they were prescribed. I was also not told that they are not recommended to be taken (or prescribed) for more than 2-4 weeks in succession, as my doctors continued on prescribing them month after month until I had been on them compliantly for half of a decade.
In that five years on the drug I existed in a state of tolerance withdrawal (withdrawal symptoms while you are still taking the drug) that were misdiagnosed as a “mental illness” that I did not have (I only know this in hindsight as, at the time, I was just chasing my tail medically to try to figure out what was wrong with me). As a result of not one medical professional (and I saw many, in all specialties, due to the plethora of adverse effects I was experiencing) recognizing benzodiazepine tolerance and interdose withdrawal, I was polydrugged further with more and more psychiatric drugs –6 in total — attempting to “treat” the psychiatric symptoms that were caused by the benzodiazepines all along. As a result, I became incredibly sick – wasting away under 90 pounds, agoraphobic, riddled with anxiety/panic/terror, joint pains, rashes, depression, suicidal thoughts- the list goes on ad nauseam.
Once I discovered that the drugs were the problem (not from the multitude of doctors and specialists I’d seen seeking an answer to my decline in health, but instead from finding other benzodiazepine victims’ stories online), I was further damaged when I was medically mismanaged by a detox center. They took thousands of dollars from me, made empty promises that they could get me off the drugs in 30 days, and then negligently cold-turkeyed me from the drugs (these drugs must be very slowly tapered over a long period of time to discontinue them safely to avoid causing seizures, psychosis, and death), and sent me home to my family in a state of psychosis, severe suffering, and suicidality that was near incompatible with human life. I could not function or care for myself, my brain and nervous system injured, leaving me a cognitively-impaired shell of the intelligent, capable woman I once was before benzodiazepines.
Now, 7+ years after the medically negligent cold-turkey and 5-years free of the benzodiazepines and other drugs (for 2 years, my physician attempted to reinstate me onto a benzo in an attempt to stabilize my condition after the CT — which failed — followed by a taper), I am lucky to be alive but am still suffering from the neurotoxicity these drugs caused. I believe I am only alive only due to the support, information, and validation I found online from other victims of these drugs. I certainly did not receive support or validation from the majority of the medical community; instead quite the opposite — pervasive ignorance and invalidation. There are, arguably, some medical providers who are aware of the dangers of these drugs and their potential to cause inhumane and debilitating suffering that can persist for many years, but overall the attitude in the medical community is lackadaisical. Most doctors would deny that there is even a problem at all and others would insist that the drugs are perfectly “safe” and that the only “flaw” is in the person taking them. I know this to be true as I encountered it over and over again myself when attempting to seek help from the medical community when I became gravely ill from these drugs and I’ve interacted with countless others who share similar experiences.
Luckily, I found one doctor here in the U.S. who was open to being educated by me about benzos. Since then, I put her name on a list of “benzo wise” doctors and she now has 30 patients she’s helping to taper safely from the drugs and a waiting list for more. Although, more recently, she expressed that she may not be able to help more, as she has since received a letter from the DEA advising her that she prescribes too many benzodiazepines, in spite of the fact that she does not prescribe them to initiate new patients on the drugs, but instead to allow people made physically dependent by other doctors (essentially attempting to clean up their mess) to taper off slowly and properly. She tells me repeatedly that she believes these drugs should be removed from the market altogether, aside from Rxs for 1 or 2 pills at a time for flight or dental anxiety and the like and in hospital settings for seizures or surgery, after the iatrogenic damage and suffering she’s witnessed in myself and her other patients.
I am 38 years old now. This started when I was 25. That is 13 years of life destroyed that I will never reclaim. Because of how unwell these drugs made me while I was on them and how much sicker I became due to the subsequent cold-turkey discontinuation, I have missed out on most of my young adulthood. My friends are all married and have families. I am alone, having been made too sick to date or meet anyone, and also fear that, as a result of the duration of this illness, I will most likely have lost my child-bearing years to these drugs. I had to sell my home that I owned, my friends all left and went on with their lives after they grew tired of my doctor-induced illness that persisted for years, and I lost my career and income. Had these drugs never been prescribed or been prescribed responsibly for only the recommended 2-4 weeks time only or had they (at the least) been discontinued properly and I been allowed a slow taper from them, I would be an employed tax paying citizen. Instead, I was prescribed and took them for years for “work stress” and, as a result, am out of work and collecting social security disability. If that isn’t irony, I don’t know what is – that a drug that’s supposed to “help” with “work stress” incidentally makes you so ill that you can no longer work.
The socioeconomic price of these drugs and the destruction they cause to people and their families is enormous. But that is really the least of their potential for damage. Over the years in the online support groups, I’ve watched with horror as, each month, someone else — some of them dear friends — commits suicide because they can no longer endure the suffering (and losses) that are required for many months and years as one rids oneself of these drugs, or because they become so psychotic they are no longer capable of making rational decisions. That, alone, is scary and a dangerous public health concern and is reason to act. All of this suffering and death and disability because these drugs are negligently prescribed for too long a duration (more than the recommended 2-4 weeks) and then discontinued incorrectly over too short a time period by ignorant and irresponsible medical professionals. Surely there has to be a better way? There is. It is to provide informed consent with all new prescriptions and to also adhere to the prescribing guidelines of 2-4 weeks or less use (including tapering off time), making no new physically dependent patients, and to humanely allow those who are already dependent to either continue taking the drugs until they die or to allow them to taper off slowly and at a rate that they, the patient, dictates is comfortable. This is incredibly basic and would be easy to do with some simple regulations. It is absolutely what must be done in order to stop this from claiming more innocent lives of unsuspecting people — either through disability or death — whose only mistake was trusting their doctor.
What happened to me and so many others as a result of these drugs is unfair and is an injustice and human rights violation for which no one has been held responsible. Something has to be done to stop this epidemic that has been allowed to persist for well over 50 years now since Valium was first introduced.
In 1996 I suffered anxiety attacks and trouble sleeping when my mom was dying from cancer. I called my GP who prescribed Lorazepam. He also referred me to a Psych Dr to wean me off. I went to her but rather than wean me off she prescribed Klonopin. She diagnosed me with general anxiety and explained that the klonopin is for long term use for treating anxiety. I was on a low dose of .25 mg’s two or three times daily. In 2007 my head started to shake when I would turn it to the left. The Psych Dr thought it may be essential tremor and recommended I see my GP which I did. She thought I pulled a muscle so I went to a chiropractor. He thought I had forward head posture and tried it to fix it over a period of about 6 months. I ended up at a movement disorder clinic Neurologist at a teaching hospital in Chicago where I was diagnosed with Cervical Dystonia. I asked my Psych Dr if the klonopin could have caused this to which she replied that it did not. In fact, the neurologist treats her Dystonia patients with klonopin so I didn’t think it was the case. In about 2013 I stopped seeing you he Psych MD since i was seeing the Neurologist every 3 months for very painful shots of Botox into my neck to freeze the muscles to control the tremor. She started prescribing the klonopin so one less Dr. To see. My health started deteriorating and I was seeing many different specialists among other hem a pain Dr. as my muscles started hurting so bad every day. I gave I prop my head up with pillows to keep my head straight and from shaking. The last 10 years I’ve gotten progressively worse. My anxiety is debilitating; my memory and concentration is horrible. I was diagnosed with osteoporosis at age 52. In 2015 I developed tinnitus. I went to an ENT who ran several tests but found nothing wrong. I started to search for possible causes and found benzodiazepines as one. In fact I found that it could cause tremor, osteoporosis, tinnitus, muscle pain, anxiety; the list goes on. I tried in 2015 and I’m 2016 to taper off but was unsuccessful. My first attempt landed me in the ER where they urged me to go back to my prescribed dosage as I could have died. I had not even stopped taking them at that point. I reduced my dose by half in 5 months so I didn’t think that was too fast. I am a shell of the person I once was. I get zero pleasure out of anything. I go through the motions of my life with fear and anxiety and no hope. I am so scared to taper again as when I did I was unable to eat, sleep, drive, think; I was shaking uncontrollably. I had lost 10 pounds in one week. That’s a lot considering I only weigh 109! I fear going through this again as I need to work as I am single, I live alone and gave no one to support me. I fear being alone at home so I continue taking Klonopin even though I know how sick it is making me. It is the lesser of two evils.
L.B. No informed consent, horrendous withdrawal
I was initially prescribed Diazepam in 2004 (5mg twice daily) for muscle tension and spasms. The doctor said it would help. No information was given at the time that this could harm me long term, cause dependence and produce major adverse effects that would then not be recognized by the doctor, or put down to the drug, but in fact were caused by it. I was simply told by numerous professionals that my preexisting mental health issues were the cause .
In the ensuing 11 1/2 years, whilst on the medication, I developed the following issues which I never had before.
I think I had a few weeks of absolute benefit from the Diazepam after which it descended into , frankly madness. Major aggression and rage, almost constant suicidal thoughts, extreme anxiety and mood swings, self harm resulting in the need for hospital treatment, nightmares, PTSD, OCD.
Paranoia that my husband had it in for me and wished me harm, severe dysphoria which resulted in a total loss of any sense of Liz, and caused me to believe I needed to have my breasts removed, caused me to shave off all my hair many times, and not feel human. I suffered numerous spells of total disassociation and Depersonalisation. I became apathetic, couldn’t self care (washing and changing clothes happened every other week, sometimes longer) disappeared into a haze of oblivion frankly, whereby I couldn’t appreciate or connect with humanity or nature on any level. I couldn’t sleep so was prescribed nitrazepam and temazapam and that tipped me over to start the head shaving (within 2 doses). I also cut my face very badly during one dissociation spell, thankfully it healed without too much obvious scarring.
I only realized the difficulty with Diazepam after I stopped taking it in November 2015, when all hell let loose.
I am thankful for the online support groups and also Bristol tranquilize project, for their information, as my gp and the mental health team failed to recognize I had developed benzodiazepine withdrawal syndrome, and I was offered diazepam numerous times as a solution to the hellish withdrawal symptoms I have been going through.
My current psychiatrist is on the ball and very sorry for all I’ve gone through, and I am talking with the local health trust soon, about my experiences.
Symptoms I’ve suffered since stopping the drug;
Insomnia – I had literally a whole year with no more than 2 1/2 hours sleep in 24 hours. The nightmares were intense and terrifying. It has returned virtually to normal restful and recuperative sleep now.
Brain focus – This was so terribly poor, that I couldn’t process thoughts at all, to action, words and mishmashes of ideas of what to do (even as simple as moving my arm to pick up a cup) were beyond me. It was like I had thick treacle inside my head. I don’t know how I survived this one, frankly, but it eased mostly to the just slightly impaired brain function that I still have now, at around 17 months off. I still have intermittent spells of complete loss of focus, several days a week, that impact on daily living.
Akathisia – This has been the worst nightmare and hellish symptom that is possible to endure. It is described as restlessness, but that doesn’t touch it. I have had both internal and external Akathisia, almost all the time for the first 18 months off. It has eased to minor shortish episodes in the last month or so. I have had the urge to rip my skin off to deal with the discomfort and unease inside myself. It feels like I am suffocating and trapped inside my skin.
Have actually got several 100 scars from attempting to alleviate this, whilst my brain function was too poor for me to be able to prevent it. I have no desire to self harm, and coming out of the waves of Akathisia where I’ve been thrashing and bashing myself, like contorted epileptic fits, to find myself bloody bruised and agonized, not to mention exhausted, has taken much determination and resilience to endure. I gave myself a concussion twice, splitting my head open, during these episodes. I’ve had to walk up to 12 miles a day, every day, to keep on top of the Akathisia.
It induces extreme terror, which can’t be put down to any particular thing, just a terror of death I think, that I won’t survive it. Fortunately as I say this eased to intermittent last month. Every time I have a wave, it drains and exhausts me completely. It is also extremely distressing for my poor husband to witness these episodes. Due to the Akathisia making me risky, I’ve only had 3 trips out locally on my own in 20 months.
Hallucinations. – I had the most bizarre cartoon like hallucinations during the first 6 months of withdrawal. Surreal. They have mostly gone, now but when I’m dropping off to sleep I can tend to have auditory issues still. It isn’t a major bother though.
Nerve and muscle pain / tension. – My muscles have been like wood. Literally like wood. All over. I have had a few spells in the last month, possibly two months, when this hasn’t been happening, and have to hope it is temporary. Such pain, off the scale pain, like burning, red hot chilies. All over.
Sensory sensitivity. – Sound . This has gone mostly, in the last couple of months, but any unexpected noise, and even ordinary noises could induce the most terrible panic.
Tinnitus. – I’ve had 7 days free of it entirely in 20 months. It varies from intolerable to manageable.
Light / vision. – Peripheral vision sensitized to the point of agony. Also light sensitivity that means artificial and sunlight agonized if at any level above dim. Blurred vision also, which eased at 15 months off. Light sensitivity has almost healed now, but it is recent.
Smells. – I had disgusting smells that only I could smell. Smell of feces, vomit, death, rotting cabbage, sewers. That went at about the same time as my sleep returned 12 months off.
PTSD and OCD have gone in maybe the last 3 months.
Taste. – My taste in the first few months off was almost purely metallic. Nothing tasted right at all. Or didn’t taste at all. No further issues with this.
Touch. – Hyper sensitive to movements of sheets or clothing or hair. Finger tip over sensitive, or dulled . Almost normal now, most of the time, but this is again very, very recent.
Crawling under my skin, maggots, or just slight bubbling. This has been a constant companion for me, since stopping the Diazepam. I have perhaps had 14 days in the entire 20 months with it not apparent at all. It’s less intrusive and horrible than the Akathisia but I shall be so grateful if it goes away.
Head and Eye Pressure like a vice cramping my head. It is agonizing.
Depersonalisation / derealisation – This has thankfully almost entirely gone. For the first year of withdrawal, my walks would be mostly taking 3 miles or more, for me to come back into myself enough, to be aware not only of grass and trees, and birds, but where I was. How I stayed relatively safe during these months I don’t know. I am now so connected on my walks, I’ve learned the names of over 30 wild flowers that I didn’t know, and can tune into up to 5 different breeds of birdsong at once. I’ve worked very very hard to improve my brain function and to get well but it has taken many many months and still somewhat impaired. I actually felt brain damaged, until a few weeks ago.
My mood has been surprisingly positive in spite of these horrible symptoms. I have to be very careful with what I ingest, as sugar, gluten, caffeine, and certain other foods (alcohol too) cause an exacerbation of the symptoms .
My diet has completely changed as a result, but this along with the necessary walking has ensured I have at least become physically fitter. I have spells of extreme anxiety, but not depression, apathy or suicidal thoughts .
My memory, both short term and long term have been impacted badly by the benzodiazepine. I have been doing brain training and also taking a probiotic supplement, and fish oils to boost this, and it has begun to work better, within the last month. I’d say I’m much vaguer than most 50 year olds still, but as it’s improving I’ll continue to hope there is scope for further healing.
24/7 management is needed, at this stage still (20 months off on 3 July 2017) and whilst I am experiencing periods of joy, and normality (focus on photography, enjoying nature, the simplest blessings such as a night without an Akathisia wave, time out with hubby walking, seeing the spring flowers growing, rediscovering myself, and my personal strengths that have become very apparent during this incredibly hard journey.). I am still at times very depleted, and still unable to work or to drive. They are goals for this year. I will never trust a doctor again.
I hope this testimony will help show the kind of harm that can be done.
I am happy for my testimony to be used to the good and benefit of others. My suffering has been immense and I wouldn’t wish it on a soul.
Joseph M Leff committed suicide, October 2017
My husband, Joseph M. Leff (03/19/1976 – 10/02/2017) was a victim of the greedy Pharmaceutical Industry’s need to make as much money as possible at the expense of regular people. They do not properly inform doctors and patients about the risks involved with taking their products. The FDA will approve a medication for one specific thing. But once it is approved, the doctors can then do what is referred to as going “off-label” which means they can prescribe the medication for whatever they want to.
Joe had an anxiety attack in June 2015, after we moved to a new town and he started a new job. He was prescribed anti-depressants by a general practitioner who didn’t ask any questions about his medical history. Joe was NOT depressed. I repeat, he has never been depressed or showed any signs of mental illness other than stress related anxiety until he started taking the anti-depressants. The minute he ingested the first pill, his brain chemistry was altered. He started exhibiting signs of depression, akathisia and increased insomnia. Subsequent doctor visits resulted in more and more prescriptions to “fix” the problem the anti-depressants caused. To be clear, Joe was taking each prescription as prescribed in the manner that they were prescribed by each of the doctors. Needless to say, the addition of each new medication only added fuel to the fire that was his chemically altered brain.
The final straw was when he was prescribed Klonopin for his horrendous insomnia in the autumn of 2016. For the record, Klonopin (a benzodiazepine) is an anti-seizure medication, not a sleeping pill. He was giving this prescription without being informed of the dangers associated with stopping the medication. He began having TERRIBLE side effects while on the Klonopin so we sought help from a psychiatrist who is a “specialist” in this field. He told Joe, “Go ahead and quit it cold turkey. You’ll be fine.”. Let me just say, Joe wasn’t fine when he went cold turkey. He almost died at that point from the withdrawals. In an attempt to help ease the suffering and symptoms associated with the benzodiazepine withdrawals, he was only prescribed more and more psychotropic medications. One being Neurontin, a medication originally approved by the FDA to treat seizures but notoriously prescribed for off-label usage. Pfizer, the drug’s manufacturer, pled guilty to criminal marketing of Neurontin in 2004 & 2010. Not to mention, burying the studies that showed increased depression and suicidal thoughts were a side effect of taking the medication.
Joe was in and out of mental health facilities and drug treatment centers in an attempt to find answers from anyone and everyone we could ask for help in reversing the chemical alterations that were made to his brain. Not only did Joe not get any relief from his torture or any answers, the one thing we learned was that the doctors have no idea what they’re doing when it comes to psychotropic drugs. Joe & I knew more about the problem with Benzodiazepine Withdrawal Syndrome (BWS) than any of the 30+ doctors, specialists, therapists, psychiatrists etc., that we have met with in the past 2+ years.
Be diligent. Be responsible. Don’t trust that your doctor knows everything about the medication that they are prescribing to you.
Question. Research. Get informed. If this happened to us, it can happen to each and every one of you reading this.
Christine Cobb, my whole life is on hold due to benzo withdrawal
My name is Christine Cobb, I lived in the US until coming to UK in Dec 2016. I have been a poor sleeper most of my life andcam also prone to anxiety and, to some degree, depression, though the latter may bev situational. I cant recall exact dates, but it is probably more than 15 years ago I was prescribed Lexapro. A few years later I was given Lunesta….I had a brief try with Ambien as it was a lot cheaper, but I ate so much in my sleep, I had to go back to Lunesta. My doctor said it was the only sleeping pill she was willing to give me as it was not addictive.
My now ex husband has clinical depression and had Klonipin as needed..With my anxiety, I tried a few of his and they seemed to help. Next time I saw my MD I told her this, and she gave me a scrip.I started taking .5 mg at bedtime. I had no effects except that I felt better. At some point it got upped to 1mg, and later, after a broken heart, to 1.5mg. At some point during this time, I forgot to refill my scrip and spent half my work shift in tears. Next doctor visit, I told her I was afraid I was addicted and she didnt react at all, just ordered refills. I got 90 tablets at a time, having no clue the devil I was dealing with. This all happened over a period of about 8 years, during which time I git divorced and ended up living alone. I thought the meds were helping me, but still cried myself to sleep often as I was lonely. Ultimately, I decided to move back to UK wuth my parents.
First visit to the doctor here, she was horrified at how long I had been on all this, I was upset at being without, but ultimately thought, well ok. So, next scrip I was stepped down to 1mg of K , then next to .5. I forgot to refill my scrip again, came home one night and just took the Lexapro and Lunesta, no big deal.
Well, it was a big deal..within a cple of days I was not sleeping, crying and hopless. My mum had fallen and was in hospital, so it was just me and my 86 yr old dad, who had to see me at my worst. Mum subsequently died. A doctor hadvto come to the house,listened to me, went back and wrote me a 12 day taper off the Klonipin and Lunesta, and sent tgese to tge house with trazodone fir sleep aid..which I dont think ever worked..the ssri was not renewed or mentioned, so I was basically cold turkeyed on that.
Soon I was dizzy, floaty, felt like my head would fall off, rubbery knees, twitching and still not sleeping. Trying to go to visit mum in hospital then nursing home was so hard as I felt I would fall over all the time. I was later given amitryptiline to help with sleep and tapered myself off the trazodone. My anxiety is back and am not sleeping well. During this time my doctors office in the States called to see if I wanted refills!!! I took this chance to write a letter to her, telling her what I was going through, no response!! I feel my whole life is on hold because of the benzo withdrawals, I am afraid to drive and I have zero patience or attention span and cannot remember much new info, so finding a job will be tough as well.
Almost 4 months out I can see some improvement, though still have days where I feel really terrible and I cannot imagine the toll this has had on my father.
I know my story is not as severe as many, but it has been the worst 4 months of my life and if I had recieved a hint ofvwhat was to come, I nevervwould have filled the scrip in the first place!! I trusted my MD and she let me down.
Thank you for listening.
P. A. Thrown into the pits of hell, unable to leave home
I was prescribed a benzodiazepine as I had been cold turkeyed off my anti depressant and was experiencing back to back panic attacks. I had no clue about this drug, I wasn’t informed it was highly addictive. I was told it was such a small amount I could stop it at any time. After 4 months I stopped it at 4mg of diazepam and I was thrown into the pits of hell and was left to suffer for three weeks. I lost a stone in three weeks, I was climbing the walls, I couldn’t eat or get fluids into me, I was crawling on the floor, dry heaving, the walls would move. I thought I had gone insane. I was told it was just “anxiety” This was no anxiety. In the end I had to ask the doctor to come out. He took one look at me and said what have you stopped? I told him and he said to reinstate to double the dose so I went to 8 mg. The fun really started after I tried to reduce again, I didn’t know the level of hell I was to be in from trying to withdraw from this class of medication. I am a single mum to my 10 year old son also. I now suffer from chronic anxiety, panic attacks, nightmares and sleep deprivation of only 2-4 hours a night since I started reducing this drug. Sometimes you can’t even put it into words the sheer hell of it.
We lost our home last year, my job, my partner and our lives … I am completely disabled by this drug..I have to get friends to take my son to school, I cannot leave my home…it is a battle every single day. Our lives have been destroyed. I should be making memories with my only child not struggling to get from room to room! My son has seen me, his tower of strength, go to a shell of who I once was! Not only did I go down the rabbit hole, so has my son who is 10. He is suffering too at the hands of sheer ignorance. I am left wondering 24/7 how this will all turn out. It is traumatising and downright disgusting that am left alone trying to battle this “dependency” alone, with no help from anywhere!if
I have family and had to move back home. But we don’t…could you imagine being alone with your child in terror 24/7 feeling like some one is holding a revolver at your head ready to pull that trigger any second because that’s how this feels day in day out. I cry hysterically daily for the life we have lost! This scandal needs the roof lifting off so it does not happen to other people!! No child should have memories of his mum laid on a sofa, hobbling from room to room crying because of the pain.Trying to cook food when my brain will not register what foods go with what. My brain resembles that of a car crash, just losing everything for trusting in a doctor. When my partner went it was just the last straw! We had gone from a happy life to complete carnage. But how can other people comprehend this madness! Life is passing by and am stuck in a mind that wants me dead and a body that is failing.constant panic attacks, nightmares, anxiety, 2-4 hours sleep a night going on for 14 months. Am not even half way through getting off. The sheer utter horror of it all, these stories don’t even come close to the magnitude of it all! Our lives ruined by corruption.
It’s a crime, then not to be believed, it is insidious.This drug has brain damaged me and yet it still gets prescribed…what is the pharmaceutical companies and the government doing about this? Nothing as it’s all swept under the carpet! Theres a substitute to get off every other drug, or rehabs etc but there’s no substitute to get off a benzodiazepine now that’s strange in it’s self!! Yes, 70% of the population can get off but for others it causes serious & debilitating symptoms….to the point of people cannot take the suffering no more. All because of a 25p pill.
This is a crime & needs looking into!!
From a mother who is left alone with a child trying to fight for life and if it wasn’t for online groups I wouldn’t be here to write this story and my little boy would be an orphan. This drug is insidious and should not be prescribed for more than 2 weeks…yet it’s handed out like candy.. Why is this????
People are dying at the hands of this poison! When is somebody going to sit up & wake up!!! Why are we left just to get on with it?
Julia Sari, 13 years lost to benzodiazepines and still very unwell
I was a happy, funny and talented girl, but faced with life stressors at 21, I became depressed and developed anorexia. I was referred to a field-renowned psychiatrist who gave me hopes of recovery, I trusted him, I truly believed that he had my best interest at heart. So when he prescribed me clonazepam, I didn’t even bat an eyelid. I had no idea what benzodiazepines were, and of course I did not receive any warning or word of caution. I soon developed sleep paralysis and would have nightmares of rape – I did not connect those with the drug I had recently started. I did tell the psychiatrist about those sleep issues but he stared back at me blankly. The nightmares subsided… time passed and the prescriptions kept coming… I would soon be put on a cocktail of 2 antidepressants, and Valium (diazepam) would be added to the 4mg of clonazepam I was already taking, still and always as prescribed.
I soon sank into a state of apathy, finding comfort in solitude and thinking about food all day long. I was never able to resume my studies despite trying twice, I’d struggle to stay awake through classes and my cognition had declined. I was too disconnected from reality to question “my meds” and I rapidly became a non-functional member of the society, surviving in a bubble of my own.
As years passed, I became more and more tired, I thought I had developed “chronic fatigue” and this led me to finally questioning the drugs I was taking. After some research, I found the Benzobuddies website and decided to start tapering off benzodiazepines… and antidepressants. After over two years of daily reductions with the sole support of the online forum, I finally became drug-free in May 2017, after 13 years. After such a long taper, I had hoped to walk away with minimal withdrawal symptoms but I was wrong. My throat and tongue began to swell, I could no longer lie down without feeling like I was choking. I became constantly dizzy, and had to hold onto walls in my home. My legs became so tight I had difficulty walking, my eyes so sensitive to daylight I could hardly see… and fear filled my nights. Such was my time in acute drug withdrawal. Yet I remained positive, hopeful and even accepting of the process.
Now four months “off meds”, I am still stuck in a living nightmare. The initial depression and anorexia were a walk in the park in comparison with what I am going through right now. Words simply elude me. But I am regaining awareness. I am no longer obsessed with food and calories. I no longer need to nap for 3 hours a day and no longer seek solitude either. So what good did those drugs do, apart from steal 13 years of my life?
Psychiatric drug-induced suffering must end.
J.S. Left without benzodiazepines, no help available
I’m here because I want to share my story.
Because many problems in my life, I developed insomnia and later panic attacks. When I had “only” insomnia, I was given my first benzodiazepine. I found this drug the most pleasant and helpful drug in the world. Gladly I didn’t become dependent, I just used occasionally.
Few years later, I experienced other personal problems and this time my body reacted with panic attacks. I didn’t know anything about a panic attack, I thought I was suffocating.
Some doctors prescribed me bromazepam, and this time I didn’t care about being dependent because I just wanted to stop the horrible sensation of not being able to breathe. In few months I hit tolerance, but I never stopped this drug. I was aggressive and more depressed. Instead of sending me to a psychological help, they continued prescribing me bromazepam.
I left my country few months ago. I moved to the UK. Unfortunately, I was left here without benzodiazepine. The ignorance among doctors is still very high regarding benzodiazepine withdrawal. I had all the symptoms described in the Ashton Manual. No one is helping me here. They don’t care about me. I should go back to my country because of this but I’m conscious they will just drug me again. I hope benzodiazepine could be illegal.
Barry Haslam, Veteran Campaigner, 30 years, brain damage from benzos
I have campaigned for 30 years on the damage and dangers of prescribed benzodiazepine drugs of dependence. I know that you are looking for a new slant on a decades old problem. This issue is still being kicked into the long grass by government and the Department of Health. You have to ask the question. Why ? This is the new slant that you are looking for i.e. the continuous smoke and mirror routine of the establishment, to publicly deny the scale of the problem and to pass iatrogenic addiction off as patients misusing and abusing meds only ingested ‘as prescribed’ by their doctors.
In addition, illegal drug addiction / dependency issues are met by a plethora of available services. Not so for BZ drug dependent patients. Why? This is deliberate discrimination against decent patients whose only crime was to put their faith in their doctor’s clinical decision making ! This cannot be ethically or morally right and also breaches the 1998 Human Rights Act in several areas.
Shortly the Health Select Committee will be announcing if proposals have been agreed by them to hold an Inquiry into Prescribed Drug Dependency in this country. In addition, I have a meeting arranged with Andy Burnham, Debbie Abrahams MP and others in Oldham on the 17th of November and on the Agenda are 1) Dedicated withdrawal centres for prescribed drug dependency for the WHOLE of Greater Manchester and 2) To lobby Andy and others that government grant a Public Inquiry into 50 years of benzodiazepine miss and over prescribing on these deadly neuro-poisoning drugs of dependence. Benzodiazepines lead to an increased risk of lung cancer, Alzheimer’s disease and brain damage. Please will you consider my request for a further TV programme on this medical disaster, as so described by the eminent Professor Heather Crystal Ashton. Plus, before I pop my clogs I want to see justice for the victims of these drugs and the perpetrators brought to justice and the full force of the law meted out to them. It would make an old man and veteran campaigner for more than 31 years very happy indeed.
Wayne Douglas, co-founder with Barry Haslam of World Benzodiazepine Awareness Day (W-BAD), raising awareness in Japan.
Claire Hanley, Campaigner and Founder of Prescribed Harm UK, 15 years lost to benzos, still very unwell
Since the 2001 BBC Panorama programme “The Tranquilliser Trap” nothing has changed. GPs still hand out prescriptions under the very dangerous false belief that benzodiazepines are either safe for long term use or that physical dependency only “affects those with addictive personalities”.
The GPs who are aware of the NICE guidelines seem to only grasp that benzodiazepines are “addictive” and they could get sued for overprescribing them. What they do not get taught is how to recognise symptoms of tolerance withdrawal which leads to a plethora of highly disabling symptoms that go misdiagnosed as something else and can only be rectified by slowly tapering off the medication using The Ashton Manual, but even then many suffer long term or even permanent brain and central nervous system damage.
I am a member of many campaign groups on Facebook which is where those most desperate turn. I have set up campaign groups of my own including “Prescribed Harm Uk”. Members talk time and time again of even once having withdrawn from benzodiazepines by themselves with zero support, when they suffer long term disability as a result doctors deny long term harm is possible. Patients and their symptoms are labelled as mental illness, silenced, notes go missing, patients are stonewalled and left abandoned with no recognition or formal diagnosis of benzodiazepine withdrawal syndrome in their notes. This often leads to further harm and inappropriate re drugging, labelling or neglect of the patient.
Patients are desperate, often unable to even leave the house, suffering crippling neurological symptoms and central nervous system (CNS) pain rendering any quality of life impossible. It is Facebook forums who help those people manned by fellow sufferers also with no support.
I was prescribed benzodiazepines (Xanax and Zopliclone) in Brussels Belgium 2002 for career stress a few weeks after I’d started my job at the European Parliament. I had previously had adverse reactions to SSRIs that were (quite inappropriately) prescribed for severe childhood trauma. Therefore I was told benzodiazepines would be safer for me. Within two weeks of taking the medication I became extremely physically and mentally unwell and all my symptoms were all wrongly dismissed as symptoms of depression and PTSD. I had previously held down jobs at the European Parliament’s London press office and the United Nations in New York.
However, rather than help me in my career I not only lost my ability to work or function but also nearly my life. After withdrawing from both Xanax and Zopliclone I returned to the UK in a horrendous physical state. I had no idea I was suffering from post withdrawal syndrome. My GP dismissed my physical symptoms as “anxiety” and placed me on Diazepam yet another benzodiazepine. My dosage of benzodiazepines was increased ultimately to 100 mg of combined diazepam and temazepam a day combined with painkillers, and propranolol. I was misdiagnosed with not only psychological symptoms but even a terminal illness by an A&E doctor. I suffered cardiac arrests, a mini stroke and circa 150 A&E admissions and six ICU admission for life threatening overdose. Not once did any medical professional recognise that I was suffering Benzodiazepine tolerance withdrawal. I was told all my symptoms, even the physical ones were PTSD. They thought problems could be stopped if I just “put my mind to it”. They saw this as a matter of will power and not of a physical dependence stronger than heroin that they themselves, albeit unknowingly, had caused.
I was a Cambridge graduate diagnosed as only having the functioning of a four year old child. I could not function at all or look after myself. I was also highly disinhibited and by now losing my memory. My home situation had become highly complex due to a close family member also suffering from a long term benzodiazepine prescription. We had no idea that benzodiazepines caused depression, rages and volatility. We thought it was inherent to us. As did the doctors. Not only did I never imagine that medicine prescribed by my doctor could do such severe and complex harm – even at prescribed low doses but I also had no idea that the phenomena I was experiencing had occurred to many others and were well documented as far back as the 1970’s.
I was deregistered from my GP surgery two weeks after an ICU admission for a benzodiazepine suicide attempt. By this stage, rather than diagnose that I was in tolerance withdrawal, one doctor was adamant I had a dependent personality trait (aka “clingey”). My attempts to end my life were branded “misuse”. There was simply no understanding whatsoever of the mechanism of the drug and my inability to simply ‘stop’ the “behaviours” of ‘overdosing’. I never took these tablets for a kick or a thrill. Nor did I ever purchase from the internet. When I refused Pregabalin I was labelled “incompliant”. As we now know Pregabalin is also dependency forming. At the time my correct decision to avoid further dependency forming medication was branded irrational.
After the de-registration with no warning, whilst my brain was impaired, by the very surgery who had caused that impairment, the subsequent GP surgery increased my dose to a combined 100 mg benzodiazepines a day. The increase in dose erased any functioning, personality or health I had left.
Doctors are not educated about the mental or physical symptoms of benzodiazepine tolerance withdrawal and damage. It is shocking that many victims know more than the medical professionals. Sadly, some GPs are so spellbound by pharmaceutical marketing techniques and so overly trusting of government mechanisms to protect the public from such harms, that they struggle to support their patients through the aftermath.
I discovered the online forums 18 months ago after I had withdrawn from Temazepam without any idea how to safely taper. This led to experience in an NHS hospital which had been so institutionally abusive it was worse than anything I have ever lived though in my entire life. Up to this point I had had absolutely no idea that my body was dependent on the medication, let alone that it was the cause of my disability. I researched the internet on the advise of a GP who lived in the same village as me and who knew benzodiazepines to be dangerous. Only then did I finally discover the Facebook groups and internet resources. It was then I realised what had been happening to me.
It has taken over a year of being totally bedbound to withdraw from the remaining diazepam with no NHS help whatsoever. I have needed 24/7 care. At times I could not talk, write an email, walk or lift my head. I have had sensitivities to smell, light and sound. I have experienced seizure like symptoms, parenthesis, teeth zaps and loss of my sight and memory. I have gained four stone in weight and lost my home due to it being unsuitable for mobility. I have now been off the benzos for a month and am still suffering acutely and am unable to walk unaided. This is especially hard because I used to be a dancer.
My physical symptoms may be hard but as Professor Ashton describes in the Benzodiazepine Medical Disaster all the psychological symptoms have disappeared. It is now absolutely clear I have suffered needlessly for all these years. A doctor once said regarding my diagnosis of having the capabilities of a four year old child that one day we would “look back and laugh”. I now know the cause and that it has caused horror within my family not comedy.
The help many are often offered when they approach their GPs is a local addiction centres for people using illicit drugs which is not only inappropriate but dangerous since benzodiazepines withdrawal requires a thorough understanding of physical dependence (which is quite different to addiction). As outlined by Professor Ashton and Professor Lader slow tapering is essential. Abrupt cessation can be fatal. Shane Kenny has made a documentary called the “Benzodiazepine Medical Disaster” and there is an excellent documentary viewable on YouTube from the USA called “As prescribed”. People are uploading their own videos to you tube in desperation.
Despite efforts from the BMA to highlight this suffering there is an unwillingness on behalf of the establishment to really hear the voices of those harmed. The level of suffering is beyond description. There are people walking around who are long term users of prescribed benzodiazepines who have no idea that their health conditions are in fact tolerance withdrawal from the very tablets they are taking to make them better. Most confuse withdrawal symptoms with the drug helping them. They think that because they do not ‘crave’ the tablets that they are not dependent. Unfortunately doctors also make this mistake.
The people who most need to be heard are genuinely often too cognitively compromised to write an email to the media and there is no advocacy whatsoever for us. The scientific research has been around for over forty years, BBC Panorama, ITV and the national press have all covered it and yet the medical establishment has not taken it on board.
To cope with a disability caused by a medical system we trusted is bad enough but to have to battle fruitlessly to have our situation represented at all – let alone accurately represented, is beyond what humans should have to endure. We have often lost everything. Careers, relationships even our homes. This in addition to suffering severe neurological and often physical pain. All this for a tablet that has been shown to have no clinical efficacy whatsoever after two weeks of use.
We are a forgotten group, victims of a medical disaster compatible to Thalidomide.
We urgently need another TV documentary to accurately show the sheer pain of the lives destroyed by the benzodiazepine medical disaster and describe the brain damage inflicted upon us and then denied.
Paul Chomiak, Campaigner
It is vitally important the topic of Benzodiazepine Tranquillisers be revisited, re-investigated and re-examined. Since the 2001 BBC Panorama documentary broadcast ‘The Tranquiliser Trap’, dozens of Benzo Withdrawal Syndrome related support groups have formed on Facebook with membership climbing collectively from 1,000 to 10,000+ members from 2012-2017.. Online sites such as Benzo Buddies witnessing between 30,000 – 40,000 members and an untold amount of visits.. Youtube BWS videos ascending from a dozen or so related videos to well over a hundred or more.. This is a very common, yet hidden, epidemic which must be addressed again and again until the long term victims of this class of prescribed medications finally have validation and a voice.. I have included a few links to assist in your consideration. Thank you.
The Benzodiazepine Information Coalition www.benzoinfo.com
CME for Psychiatrists About Benzodiazepines https://www.youtube.com/watch?v=SMzaxAo-sxI
As Prescribed documentary http://www.asprescribedfilm.com/
Letters From Generation RX http://www.lettersfromgenerationrx.com
The Many Faces of Benzo (Ativan Klonopin Xanax Valium) Withdrawal https://www.youtube.com/watch?v=-RcThf6Rs40&pbjreload=10
Benzo Buddies www.benzobuddies.org
Benzo – Wise and Recovery Experience (B-WaRE) https://www.facebook.com/groups/660273474151978/
Benzodiazepine Recovery https://www.facebook.com/groups/benzorecovery/
Benzodiazepine Awareness and Legal Action https://www.facebook.com/groups/benzoawareness/
Beating Benzos https://www.facebook.com/groups/Beatingbenzos/Benzo
“GABA Drug” Use and Recovery Experiences https://www.facebook.com/groups/1486765754987409/ (Medical professionals and benzo victims)
Benzo Withdrawal: Nervous System
Part 2 Benzo Withdrawal: The Neuron
Part 3 Benzo Withdrawal: Neurotransmitters
Part 4 Benzo Withdrawal: GABA, GABAa Receptor, Benzos
Part 5 Benzo Withdrawal: Brain on Benzos
Christy Mitchell Huff, Physician and co-director at Benzodiazepine Information Coalition
I just watched the 2001 BBC Panorama documentary “The Tranquiliser Trap” with great interest. I am a physician in the U.S. and a co-director at Benzodiazepine Information Coalition, which is a nonprofit dedicated to spreading awareness about the dangers of benzodiazepines. I am also personally suffering from benzo withdrawal syndrome. You can read more about my story here:
I was asked to write you on behalf of my friends and fellow activists Claire Violet Hanley, Fiona French, and Barry Haslam to urge you to once again cover the benzodiazepine medical disaster. Since your documentary in 2001, physicians are still inappropriately prescribing these drugs longer than the recommended 2-4 weeks in countries all over the world, including the U.S. and U.K. Tens of thousands (if not more) are seriously impacted by severe withdrawal, side effects, disability, and sometimes even death. This time in history is ripe for coverage of benzodiazepines given the current prescription drug epidemic being covered in many major new sources. Here in the U.S,. our government and media are focused on the opioid crisis, without ever mentioning that benzodiazepines are involved in up to a third of overdoses. I urge you to cover this topic as spreading awareness can save many lives.
This is a heart wrenching story about my dear friend whose remission from ovarian cancer was ruined due to Ativan withdrawal.
She passed away in July at Dignitas in Switzerland after suffering a recurrence of ovarian cancer. At that point she was terminal but still had some months to live. She chose to end her life prematurely due to the severity of her benzo withdrawal symptoms.
Alyne Duthie, Campaigner
Benzodiazepines ruin lives and even now, well into this new century they continue to ruin lives. We really need you to revisit this story and inform the general public that the benzodiazepine scandal hasn’t gone away and the victims are still suffering. I was prescribed 20 mgs of Diazepam and the sleeping tablet Zolpidem after I had problems with other prescribed psychotropic drugs in the summer of 2012. I spent a very tough year tapering off Diazepam and by the 5th of November 2013 I was finally drug free but I was far from being well.
A typical day at the height of my benzodiazepine withdrawal was either spent in bed with my head, legs and arms jerking, sometimes with an ice pack strapped to my chest to counteract the burning heat or covered up with a duvet freezing cold. I’d cower at the sound of my own fridge because of increased sensitivity to noise and at nights the lights were kept dim because of light sensitivity. This doesn’t even take into account the tinnitus, the nausea, the dizziness, the insomnia, the painful brain pressure or the constant fear and suicidal ideation. There is too much to a benzodiazepine withdrawal to include here but there can’t be much doubt how awful it is.
People refer to a benzo withdrawal as hellish and that is no understatement, it is quite simply hell. It’s made all the worse because no one can say when it will end and for some the terrible effects are felt for years long after they’ve stopped their drug and they may even be permanent. My son nursed me through the worst of my withdrawal and if it wasn’t for him I wouldn’t be here. Not everyone is so lucky to have that kind of support. I’ve lost friends and valuable time to benzodiazepines but others have lost their lives.
Psychiatrists and doctors weren’t very supportive at this time. GPs would reluctantly make a visit but for the most part they seemed dumfounded and weren’t able to do anything for me. One even told me it would be over in a week. I even went to A&E at one stage desperately looking for help but all a psychiatric nurse could offer were leaflets on panic attacks. Quite frankly, I’ve given up on the medical profession. I’m no longer in the dark place that I was but I haven’t made a full recovery. I think cognitive impairment will be one of the longer lasting legacies of taking Diazepam as prescribed. I urge Panorama not allow us to be forgotten.
Fiona French, Campaigner, 43 years lost to benzodiazepines, still counting
I request that you urgently cover the Benzodiazepine Medical Disaster. You may think that this is a historical problem but for many patients the devastating effects of these drugs continue to the present day. I was prescribed Nitrazepam in 1975 for myoclonic epilepsy. I very quickly became extremely unwell, losing a quarter of my body weight and attempted to commit suicide. No doctor recognised that I had suffered an adverse reaction and so I consumed antidepressants and Nitrazepam for the next 40 years, leading a half-life which I assumed was due to depression rather than drug side effects from Nitrazepam. Dragging myself through each day, no energy to have close relationships, children or even a social life. A life no-one should have to lead because of a prescription drug.
I remember the various TV documentaries (Brass Tacks, That’s Life, Panorama) on benzodiazepines but thought I had no choice but to keep taking the drug. I had tried to withdraw in the 1980s but could not tolerate the withdrawal symptoms. No doctor told me what to expect or how to cope with them. The subject was never mentioned again. I was certainly never informed by a doctor of the many damaging effects of benzodiazepines.
In 2012, I changed my GP practice. I was advised to come off Nitrazepam. I tapered over three months. I became extremely ill and have spent three and a half years in bed, enduring torture which I did not think was possible. Loss of sensation from the waist down, arms badly affected, I have been unable to function in any meaningful way during that time. I am left disabled requiring a walking frame / wheelchair. My memory is poor, I cannot read, handwriting is difficult.
My GPs tell me they have no idea what is wrong with me. Two consultants told me my symptoms are nothing to do with withdrawal. I decided I would have to go outside the UK and consulted Dr Terry Lynch, author of “The Depression Delusion”, based in Ireland and he was able to diagnose protracted benzodiazepine withdrawal syndrome without difficulty. I then received an acknowledgement from an NHS neurologist that my disabilities are most likely due to the “shock of coming off Nitrazepam”. It has taken over three years to achieve this admission. Despite this he wrote to my GP saying I had been suffering from chronic fatigue syndrome which is factually incorrect but he clearly did not want to contradict psychiatric opinion in 2014. There is no help or support for patients damaged by benzodiazepines. I have been refused assessment for Alzheimer’s despite the known risks from long-term consumption of benzodiazepines. Perhaps they are worried what a brain scan might reveal.
I would like to know why patients, badly damaged by prescription drugs, are left to suffer in this way and why they have to struggle to get a diagnosis and why they have to seek publicity so that the medical profession and the Government might actually take responsibility for the immense harm that has been caused. NHS doctors are deliberately colluding to cover up the damage done to patients.
I hope that another TV documentary can be made on this subject. Sadly it is not a historical issue, I only wish it was.
My experiences are documented here:
Apart from Barry Haslam, Professor Heather Ashton, Shane Kenny and Dr Vernon Coleman there are no spokes people representing the huge Benz community easily found online at the press of a button. Until you are recovered the path back to health is strewn with heartache and raw pain and grief. People’s lives, relationships, careers are being ruined. Far from being ‘ Mothers little helper,’ Valium, Ativan etc have been deliberately prescribed to Teachers, Nurses, Airline Pilots, MPs, Actors, Actresses, Musicians, Driving Instructors, Bankers, Careworkers etc etc. No-one is going to state publicly that they are dependent on such drugs. Does anyone fill in a job application saying yes I take Valium? You will notice they only suggest NOT driving or operating Machinery IF affected. Yet for alcohol and illegal drugs there is a completely different agenda……I am a Mother, Worker, Daughter, Wife, a Tax payer for 40 years as are many others who ingest this poison. Until I finally went online in 2015 I had no idea that there could be hope. The online community, a couple of Charities like Oldham and Bristol…….Spokes people like Barry Haslam and Shane Kenny are the ONLY people keeping this Medical disaster current. Someone who is a person of Courage, Integrity and High Moral Fortitude needs to bring this Scandal to the public domain. I hope YOU and others in the media are these people.
Jo Elson, bedridden and desperately ill
As a U.K. Citizen I was first prescribed diazepam in February 2005 after what I thought was a severe nervous breakdown. What I now know it was a severe reaction to the SSRI anti-depressant Citalopram which was prescribed for anxiety at 20 mg. I was told the drug may make me worse before better as I endured horrific symptoms in the first few weeks of taking. What resulted was acute anxiety & panic attacks that I can only compare to a cold turkey state like I’ve experienced coming off diazepam .. the doctors immediately prescribed Stelazine which put me in an almost weird seizure for 7 hours & then I was switched to diazepam … it worked instantly & my symptoms lessened but I still was on the horrific Citalopram which they realised after 3 months was not agreeing with me. By this time I was dependant on diazepam and when I tried to stop after being put on an antipsychotic for 2 months, it wasn’t long before severe withdrawal symptoms came through.
I had to go back on the Diazepam & stayed on for many years, mental health specialists failed terribly with withdrawal attempts & it wasn’t until September 2012 I finally hit tolerance withdrawal & was prescribed Mirtazpine 30mg & upped the diazepam doseage until I reached stability. I wasn’t depressed, my nervous system was just going mental after a stressful year of moving home & an incompetent CBT therapist was trying to reduce my dose over the previous 6 months. I stabilised well but needed more Mirtazpine by Xmas as I’d stopped sleeping. Stabilised well & got myself back down to 8mg of diazepam where I stayed then with no medical support for two years, ordering diazepam on repeat prescriptions as an when I needed it, some days I took more depending on what was going on. By May 2013 I hit tolerance of my 8mg again & went off my feet.
From then on I was never able to go into shops & spent less & less time going out as my body just couldn’t cope with people & exertion. I got very breathless walking anywhere & standing for long periods of time was impossible… I developed health anxiety & avoided the doctors. I still managed to function but never went anywhere that involved too much walking or standing. I just got very anxious & panicky. There were ocassions I upped my dose so I could go to places, but part of me knew this wasn’t good. I was barely on above 8mg for majority of the 10 years before my 1st GP taper began in July 2015. My first taper controlled by my GP was rushed by Xmas 2016 I was down to 2mg of diazepam not feeling great but still quite functional.. I had a tough time at Christmas & my cuts all caught up with my fragile nervous system … I tried to reason with my GP who stopped all diazepam in January 2016 when I had to updose to 4mg to get stability again. He just refused anymore prescriptions & said my taper was a 6 month non negotiable plan. I was Cold Turkey from 4mg diazepam & left for 13 days in a hell I can’t even remember it was that bad. Somehow I was able to walk into a drug substance misuse clinic because I’d bought some off the streets and threatened to take them, I was too scared to and luckily they reinstated me at 10mg diazepam … my current GP I struck off and found out he’d put I was allergic to Benzodiazepines on my file with hope no other doctor would prescribe me. It’s still on there and I’ve left it so I can show how corrupt he was.
I took 10 weeks to stabilise & then the substance team encouraged me to find another GP local to me to save the long travelling to the clinic. I managed to find another & now I was terrified of doctors because of my previous experiences. He said he would prescribe me but he wanted 10% non negotiable cuts each month. I had to agree. I was doing well yet again & got down to 5mg by Xmas 2016, I felt pressured by the doc to reach my targets.
By January 2016 my body went into a meltdown yet again, instead of updosing I tried to ride it through but things got so bad I had to go up & up until 15mg. This time there was a very brief respite in symptoms. It soon became apparent no matter how much I updosed I wasn’t going to stabilise & get functional … it never really happened. So I started to cut again very slowly. For the last 10 months I’ve been bedridden with high blood pressure & elevated heart rate & have to take meds for this.
The meds don’t really help & I can no longer function at all. I can’t drive, cook, stand, walk & on a good day I can just about get up & go down to my couch & back up to bed. I’ve 24/7 pressure in my chest & my breathing is bad. My heart rate is all over the place & although slowed by propranolol I can still feel the meds struggling to control it. I can’t do anything with my 8 year old. I’ve not attended anything at school this year & I’ve had to employ a child minder to see to her school needs. I can’t clean so I pay a cleaner & my partner goes out to work & leaves me bedridden on my own with plates of food by my bed to last for the day.
I am scared to use the bathroom as it sets of panic & I can’t breathe & I daren’t move around my house unaided … I live in a constant state of fear & I have other Heath issues now including my thyroid & bladder spasms, fluid retention, acute sensitivity to everything, foods, people, sounds. I can’t shower or take care of myself. I’ve got infections & sores from not showering & I’m physically in a bad way. Sometimes eating causes panic attacks & if I can’t breathe properly I can’t physically move from the bed. I get adrenaline surges all the time & I can’t process or remember anything.
I can write a large post, but it will knock me out later or catch up with me tomorrow because of sensory overload. Everything affects my nervous system & my whole quality of life is very poor. I have depression, mood swings & so many other symptoms …. right now I’m just a bedridden mess & I need you to come out and interview and watch me live day to day in this state so they can uncover what medical professionals are causing because of their ignorance. This is a medical crisis & it needs exposing … my doctor doesn’t check on me & I’m left to withdraw under a mental health nurse who says I shouldn’t really be under her because this is a physical dependence, nobody wants to know & I took this medication as prescribed.
Why are we left to suffer yet heroin addicts & alcoholics get all the support they need. It’s truly horrific & terrifying what I’m experiencing & I want the whole word to know what these drugs do. I’m physically damaged & mentally impaired. I was once a qualified primary school teacher … now I am suffering intolerable symptoms through Benzodiazepine Withdrawal Syndrome… I’m down to 9mg from 15mg on my 3rd taper & I’m very unwell.
It’s going to be a very long road off & another long road to recovery, then I have more evil medications to come off. I don’t know how much longer I can endure this level of suffering. It has to be put out there what these drugs are doing & how our doctors & other medical experts are just ignorant to the dangers of these drugs & in total denial that a withdrawal Syndrome exists. My doctor says I have anxiety? Really? Well it’s pretty bad anxiety to have someone bedridden for 10 months. I don’t know how I’m going to survive this! I can only pray that I do. Right now I just feel like I am dying every day.
David Jones on behalf of his wife who has lost one 40 years to benzodiazepines
My wife was prescribed benzodiazepines for many, many years and despite the realisation that they down regulated the GABA receptors in the body and patients developed dependency, she was never warned of the consequences of taking them. In 2012, as a result of reading an article in the Times, she stopped taking the drugs and could have suffered seizures. As it was she went into acute withdrawal over several months and even now, five years later, she suffers from protracted benzodiazepine syndrome.
During this time she educated our GP in the effects of withdrawal and he was supportive but had little knowledge of how to deal with an array of symptoms. We resorted to self help and read many books and papers on the effects of benzodiazepines and the withdrawal process. The work of Professor Heather Ashton was invaluable to our understanding.
My wife set up a blog site at beatingbenzos.com and this has had over 170,000 visits. We also set up a closed Facebook forum so that fellow recoverers could share the ups and downs of their terrible journey to recovery and renewal. There is scant NHS expertise and only a few volunteer support groups.
I urge you to revisit this topic as doctors are still prescribing benzodiazepines for longer than the NICE recommendation. These drugs do not cure any malady, simply masking it while they alter the brain chemistry.
Sonia McPhee, tapering with no medical support, never warned about the dangers
I’m a UK citizen, currently living in Scotland. I hope you will be the voice for the many who are dependent on and withdrawing from benzodiazepines. I was never warned about the devastating side effects and withdrawal symptoms that occur whilst on and coming off this class of drug. Not once was I informed that this medication could lead to physical dependence. I’ve not been adequately supported by the NHS. In fact I’ve been invalidated on a number of occasions and even sent to addiction services where they have no idea how to help someone safely withdraw.
I’m currently tapering with no guidance from my doctor. I’ve been tapering for almost 14 months. I and many others rely on peer to peer support groups on Facebook as currently the NHS is of no help. Benzodiazepine withdrawal symptoms are constant. There is no way I can function or even participate in my life at the moment. I have no idea when this will get better for me. Every day is a living nightmare and I endure multiple symptoms that leave me overwhelmed and severely isolated. People suffer for years on a daily basis for taking a prescribed medication as directed by their doctors. Something has to change and soon. Recovery is a lengthy process and people deserve adequate help and support.
Martin Harris, “the suffering is beyond inhumane”
I’m a UK citizen who’s been caught out by the heinous (and well documented) benzodiazepine scandal. I trusted my doctor, the pharmaceutical industry and the NHS, only to have that trust betrayed in the most grotesque manner.
Due to the horrendous nature of this class of drugs, I have incurred neurological damage to my brain and central nervous system as a direct consequence of the drug’s neurotoxic properties, and the mechanism of the drug’s action upon one of the brain’s most fundamental neurotransmitters.
I took this drug as prescribed by a qualified doctor, originally for mild and infrequent bouts of anxiety.
That advice has ultimately left me with severe physical and psychological disabilities, and thrown me into a seven year battle for my survival when trying to eradicate this drug from my body.
The suffering inflicted by this illness is beyond inhumane, and involves unrelenting, debilitating and perverse symptomatology, literally turning one’s body and mind into a torture chamber for months or years upon end.
The insidious suffering involved is often so acute that suicide becomes appealing.
The ‘victims’ of these drugs are often left to fend for themselves due to the gross ignorance (or denial) of this injury by the very medical communities who hand them out.
Invalidation, misinformation, misunderstanding, misdiagnosis, outright denial and polydrugging are prolific for those undergoing this illness, as are a lack of adequate resources to help and support those through the recovery process.
Please help us to share our stories, to bring this crime into the public arena, and to stop this from continuing.
Kim Smith, now dependent on elderly mother, no informed consent
I was finishing my last semester in graduate school when I was injured by a benzodiazepine. The prescribing doctor failed to provide me informed consent, alerting me to the fact that this would be an addictive medication as well as one difficult to come off from; there was no disclosure.
He simply told me “People have been taking Klonopin for years with no problems”. He also spoke more to himself as he wrote a second prescription, “I can get you off of this”. Had I known what was in store for me, I would never have consented to take such a horrible medication that has cost me my life.
I’ve lost so much. I am a single parent who now is completely dependent upon my elderly mother for everything. I am in debt to the university I was attending. I cannot work nor provide for my son. I’ve become a shell of my former self.
Please bring awareness to the dangers of these medications. It’s ruining as well as taking the lives of innocent people who did nothing more than implore for help from their doctors for things such as anxiety, insomnia, pain and panic attacks. I had no mental illness previous to this; prescribed for one panic attack during a time of deep stress. The myriad of symptoms I’ve suffered is too lengthy and traumatic to list here. I have lived in a traumatised state now for 18 months; 10 on the medication and 8 off. I have lost everything and pray each day to cling on to my life so that I might see the other side of this.
Maddie Hare, suffering protracted withdrawal, 3 years, 3 months
I both urge and encourage you to cover the topic of Benzodiazepine withdrawal as a person now suffering badly still with protracted withdrawal from these prescribed medicines for three years and three months now. My personal story is too long and frankly too much for me to explain in detail currently, due to the brain injury brought about by being given these medicines from doctors. Knowledge about the harm this classification of prescribed medicines can potentially cause patients has been known for over fifty years now, so why are we still here having to read within the forums about the horrendous suffering caused, not only to the victims, but to their families, livelihoods and in some extremely tragic incidences, loss of life itself. Please, please help raise public awareness about this seemingly ever growing global epidemic, because until someone does, sadly the already huge number of people suffering will only continue to rise. Also, these same people need both validation and support from both the prescribers and the government. Thank you for reading.
Chris England, living with 86 year old dad, but not much use to him
I was put on clonazepam for anxiety, depression and to help with insomnia, for which I was already taking zoplicone, which was allegedly approved for long term use as it was non addictive. I trusted my doctor and did not question her. Twice my dose of clonazepam was upped, due to break- through symptoms..After 8 years, I was taken off them with what I now know was a rapid taper..everything I have learned has been from FB support groups which have been invaluable. I have been dizzy, shaking, twitchy, felt my head wasn’t joined on, sweaty, any kind of activity gives me a racing heart and makes me breathless..I was a person who walked 4 miles every day without blinking and could dance for hours.
I am living with my 86 year old dad, who could use my help, but I am not much use. My mum died 2 months ago and I felt I was just an added burden. And my problems aren’t even close to what some others are barely making it through.
Please raise awareness for the public and more specifically, the medical profession, so these nasty and pernicious drugs can be exposed for the poison they are and maybe Big Pharma can be forced to be held accountable, for they are the true villains here, though I do feel that any doctor with a conscience would not prescribe these horrible pills unless they had done their own research on them first. Patients should be able to trust their doctors and I know the majority of us feel betrayed on some level.
Pamela Wilson, 37 years lost to benzodiazepines, continuing to deteriorate
I ask you to cover and update the benzodiazepine problem. Please help the patients who are just left to suffer. While each story is unique, so many suffer such similar experiences, both on and off the medications. While nothing is being done, the harmful effects continue.
The point of my story below, for those who don’t already know it, is that even with expert contact and information, official recognition from the BMA and their many weighty supporters, plus the ongoing truthful facts and the reality of so very many patients with harmful experiences – our doctors still ignore us.
I am quite certain, that had my doctor’s paid attention to my (and my family’s) concerns particularly in 2001 after watching the Panorama programme, The Tranquiliser Trap, I would not have suffered such horrendous damaging consequences to my brain and body. Instead I too was deliberately misled and told I was different to those people, that I had a chemical imbalance and would need the medications for the rest of my life. Yet that was not the case.
Records show my GP was told to withdraw & stop the meds as I was suffering severe side-effects. When initially prescribed 2/3 weeks valium as a muscle relaxant for a specific neck injury, I was happy & outgoing & had recently married. I was active both socially & in my church & was making significant progress in a good and promising career. Soon after the course of medication stopped, new alarming symptoms began. I’ve since learned they were on a list of recognised side-effects. To alleviate those side-effects more and more medications were prescribed, each causing more side-effects and complicating my poor brain. This process of prescribing continued for around 27 years until my muscles had become so increasingly rigid I was bedbound.
Having had years of imbalance, insomnia, wretching & fear – ALL FOR NO APPARENT REASON – my GP insisted I stop the medication, this time cold turkey & “never go back on it again”. The muscular side effects, anxiety etc all quickly eased, but new severe electric zaps in my brain worsened. With no knowledge or support here in Northern Ireland, online research led me to the charities BAT, CITA and Prof Ashton. Prof Ashton kindly contacted my GP & sent information on Protracted Withdrawal to my GP and for my neurologist and voiced concern of cold turkey seizures. Her information was ignored and I suffered a massive life-changing seizure event. My brain & spinal cord suffered disastrous harm. I was completely paralysed with a locked-in-type syndrome, etc. In the 8 years since, I’ve been admitted to neurology 8 times with related spinal cord episodes of increasing paralysis etc.
To date all expertise has been refused, benzodiazepine damage has not even been looked into, the cold turkey seizure event has not been recognised, nor its’ distinct cycle of hellish suffering causing progressing neurological damage since.
My doctors say they don’t know of benzodiazepines and damage they can cause. So damaging psychological labels are used. 8 times sent home in a wheelchair unable to walk, etc, yet Ive had no doctor’s help or support at all. My GP continues to refuse a callout to see how I am effected or what help might possibly be offered, he refuses to prescribe pain relief etc too, saying because “you are an addict”.
Wth ongoing attitudes like that – nothing can change.
You COULD make a world of difference to what has become an unseen medical disaster worldwide. Apologies for writing so much.
Thank you for your time.
Victoria K Laughlin, unable to recount experience in detail, too traumatising
Please cover the Benzodiazepine medical disaster. Posting my personal story in detail causes me emotional and physical symptoms and set backs. For this reason, I will keep my plea in a general context.
I am traumatised that this could happened to me at this degree of losing my family, children, career, saving, spiritual support, and all alone having to figure this withdrawal syndrome out on my in a cognitively, sometimes altered mental state of psychosis, depersonalisation and derealisation and suffering from Akathisia.
Doctors said I was faking and really I was abusing the medication that’s the only way what this withdrawal syndrome to this degree could happen. This statement by medical professionals who I trusted to take care of me and to help me improve for depression, anxiety and chronic pain. Being a good patient always following Doctors’ orders and taking my medications “as prescribed “.
Was/is beyond traumatic and devastating on so many levels it’s hard to put into words without being re-traumatised. Simply, understand and having more documentation that this withdrawal syndrome and very real anatomical changes that these medications cause is validation for us who have been harmed. It will also help millions world wide to be supported in 10% or less safety protocols. That alone will trigger support systems personal and medically to be put into place to help someone suffering and recover instead of being devastated and further injured by the support system that could have been available because the “trusted authorities ” said a person is faking and or abusing their medications.
It also opens the door for support of other medications that also have a Withdrawal syndrome that’s not supported like SSRIs, SNRIs, Gabapentinoids. The implication of you covering this story and the positive impact it can have for so many people for years to come is amazing; if not changing a very foundation model of the way patients who are suffering from dependence and not abusing prescribed medications.
Andy D’Alessio, misdiagnosis, hospitalisation, almost beyond despair
My name Is Andy D’Alessio and I am 45 years of age.I find myself writing to you at a point, where I find myself to be, almost beyond despair. I am writing to you in the hope that you will listen to my story about the appalling mistreatment I have suffered due to factions of the UK health authority from May 2012 to the present and the challenges I am facing with regards to my health and well being and the pursuit of justice continues. It concerns the matter of Acute and Protracted benzodiazepine withdrawal syndrome, the existence of which, the various authorities have known about for the best part of 50 years.
My long-term prescription to benzodiazepines – Diazepam and Zopiclone.
My multiple – misdiagnosis and two-year admission to hospital to be treated for the wrong condition. I was seriously ill but told I was imagining it and treated for depression. I was bleeding rectally for most of this time which was ignored. This was just one of an avalanche of symptoms. My condition was exacerbated by forcing me into an acute withdrawal. This could easily have had fatal consequences. The sheer hell that I was subjected to whilst hospitalised and continues in varying degrees. The lies, sheer arrogance of senior doctors and management, the aggression and the stonewalling I suffered once my true condition became apparent. The ongoing health issues I am experiencing daily that I have been left to deal with alone.
It is a frightening and truly absurd state of affairs – and an absolutely criminal one. Unfortunately, I am not alone in my suffering. It is both a national and international outrage and many people are suffering most terribly. A huge part of the problem is that the powers that be are very effective at silencing people. It is very easy for them to sweep it all under the carpet. There appears to be no culpability for wrong doing.
There is something very sinister afoot with respect to these ‘medicines’.
I find it extremely difficult writing to people; I find it very traumatic and I suffer with poor cognitive function. I have summarised here as my full account is extensive and very complicated and is of course still ongoing. It is very difficult for me to relate the gravity of my experience, to others, by this medium. It is a horror story of comedic proportions. I hope to grab your attention to my plight and that of many others.
Jocelyn Hendren Pedersen
You have the chance to influence change not only in the UK, but potentially in the US and Canada as well. I recently attended the first ever international benzodiazepine symposium in the US this month. Now is the time. Doctors are fed up with their misinformed and irresponsible peers in the medical field.
There are no legitimate reasons to risk injuring millions every year by prescribing medications that are not effective long term treatments for either anxiety or insomnia. The research is clear on this. What is not clear is why so many doctors ignore it or are unaware it exists. What’s not clear is why a patient cannot go into a doctor’s office and get a diagnosis and appropriate treatment for this iatrogenic illness. What is not clear is why there is no public outcry for this to change.
Here is a link to my first YouTube video that I made while still in the midst of a gruelling taper. It’s sobering to watch after three years of healing, although I still am somewhat disabled. There is also a link to my channel below where you can watch my other videos, many of which are educational and emotional pleas for help from doctors and loves ones on behalf of those who are still suffering.
Joannah Griffith, I now fight simply to survive, have lost so much of what made up my life
Please help the thousands of people like myself who are suffering from having been prescribed benzodiazepines negligently.
It was before I was born that they already knew that this class of medications could cause significant harm to people. Yet at 30 years old now, I am in my 14th year of taking them. I have lost much of what made up my life – my job, my postgraduate studies, socialising, exercising. Now I simply fight to survive, going through withdrawal with vastly inadequate support from the NHS.
I run a support group on Facebook helping people to access information about benzodiazepines and providing support to withdraw from them. Many of our members are in the U.K. Over and over again I hear that doctors have prescribed for years, they will not help people to withdraw, they tell patients they need to take them for the rest of their lives or they cold turkey patients, leaving them suffering from seizures, psychosis, movement disorders like akathisia and dystonia.
Even when patients slowly withdraw from benzodiazepines, they can and often do suffer extensively. There is nowhere for them to turn in their day-to-day lives. Doctors dismiss their suffering, sometimes refusing to see them completely. Some are misdiagnosed, some are sent on to other services like Neurology and Psychiatry, where no one can help, nobody understands it is the drug, what withdrawal involves. Yet they have been sat on the knowledge for years, they must know. There needs to be specialist services to help these people recover and return to their lives.
Please help us to have a voice.
Steph Williams, my GP insisted there was no risk
I am 26, living in North East England and was first prescribed diazepam in August 2016. I was given tablets initially PRN during a nervous breakdown for severe terror and agoraphobia and in September 2016 was told by my GP and Crisis Team to take them every day until I started to feel better. They were also given to me to mask the horrific side effects of a fast switch over from Escitalopram 20mg to Sertraline 100mg.
I found myself becoming tolerant after just a few weeks and was told to take higher doses. I was terrified of becoming dependent on the drug but my GP insisted there was no risk as I didn’t have an addictive personality.
After around 6-7 weeks of use I approached my GP letting him know I wanted to stop the drug and he advised me to go from 7.5mg to nothing in 2 weeks. It was when I reached 2mg I knew I was physically dependent. I spent every day and night on the phone to the Crisis Team or NHS 111. It just goes to show the dose and length of time used are irrelevant, if you are dependent then you are dependent.
Unlike most sufferers of Benzo Withdrawal Syndrome, I believe my circumstances required treatment with benzos. There was nothing else that could help and they saved my life in the short term. Even now during withdrawal this is still my firm belief.
My issue came when i wanted to stop them and my GP was clueless. He insisted I was on a small dose for a short period of time and my symptoms were rebound anxiety.
I joined the Facebook group Benzodiazepine Recovery where I began to learn about these drugs and the withdrawal syndrome. My only support has been from the sufferers in this group. I read the Ashton manual and contacted BAT aid for initial guidance with my taper.
I stabilised on 4mg and began my taper from there in November 2016. I fought to obtain liquid diazepam from my GP to allow me to taper at a rate I could tolerate. Every doctor in my surgery is oblivious to BWS and would have happily cold turkeyed me off the drug, I had to drag my exhausted body down to my doctor surgery every day until they believed I was suffering.
I am treated like an addict, only prescribed just enough liquid to last me 2 weeks, even though my dose has never increased and I have only reduced it.
I suffer so many debilitating symptoms, my central nervous system has never been so sensitive. I suffer dissociative symptoms, all over nerve and muscle pain which keeps me bed bound at times, hypersensitivity, suicidal thoughts amongst so many others.
Stabilising from a reduction for me takes at least 28 days and it’s impossible to say how long it will take for me to heal completely once I am off the drug. Not enough research was done into the drug before it was put on the market.
I am unable to work due to these symptoms as well as my pre existing conditions. People don’t understand that one day I can do a task and another day I am in agony.
The biggest devastation in this experience has been the lack of knowledge and support from the NHS. Who do we trust if not our doctors?
We are completely alone in this hell and people are taking their own lives because of it.
Help us stop this scandal that has gone on for far too long.
Sandra Teale, a lifetime on benzos, refused help, now housebound
I was diagnosed with ‘Anxiety’ in 1977 after finding difficulties eating school meals. I was sent for tests for epilepsy but the tests came back as neutral. The doctor handed my mother a prescription for me to give me daily. The prescription was Valium, a benzodiazepine.
I was on 25 mg a day at 15 and stayed on that dose for 3 years. At every complaint of agitation, my dose was increased until in 1982 I was prescribed another benzodiazepine Ativan. I was prescribed 6 mgms to be taken when required. I had no idea what these drugs were, only that I had to keep taking them to ‘help’ with my anxiety and now panic attacks.
In 1992 I saw a new doctor who mentioned the benzodiazepines could be ‘problematic’ later in life. He mentioned he wanted to see me every month. He didn’t tell me they were addictive although he asked me why I was taking them. In 1993 the internet started to be available and in the mid 90’s I saw a card for a group called CITA (Council for Involuntary addiction to Tranquillisers). I couldn’t ring them fast enough.
I had been having head pain, severe panic and agoraphobia, that the GP had dismissed as anxiety. CITA explained it was the tablets. After the initial meet up with CITA, the group ran out of funds but at least I knew it wasn’t ‘me’.
The doctors at present understand nothing about benzodiazepines. I have sent the Ashton Manual to 3 doctors and recently an Addiction centre, unfortunately not read by the staff. I have been tapering alone from Valium and continue to do so with the support of online communities but nothing else. I have been desperate so many times, at 55 enough is enough.I have been refused help and am housebound with head pain and severe panic. I live for the day this drug is acknowledged as causing so much pain and living to see this become a reality.
Anonymous, cold turkeyed off valium and clonazepam, living in poverty
I am 46 and was first prescribed benzodiazepines over eight years ago. I was prescribed high doses of valium and clonazepam together and then I was cold turkeyed off them after a lengthy period on them.
I was left in a state of indescribable terror until eventually I was prescribed another benzodiazepine, Xanax.
I became functional again for some time but then started suffering from new health problems particularly problems with my muscles which caused severe chronic pain.
Through my own research I learned that it was likely that I was suffering with tolerance withdrawal.
I have been tapering for over a year with valium as a substitute and still have a long way to go. I have a lot of physical pain, I get almost no sleep and I have almost constant depression, anxiety etc.
I am living in poverty due to being unable to work. I had a good job when I was first prescribed benzodiazepines.
I have discovered that there are many others in my situation.
It’s time to make another TV programme about this epidemic.
Eden St Jean Fellner, tribute to my wonderful husband who took his own life
This is a plea to you and a tribute to my wonderful husband of 24 years and the loving father of my 3 children. Joseph took his own life on July 12th. Years ago doctors prescribed him Benzodiazepines (aka Ativan, Xanax, Valium, Clonopin, Restoril and so many other innocent-sounding names) to cope with his fear of flying. What we didn’t know was the devastating effect it would have on Joseph, along with the horrible addictive qualities of these drugs. The man we remember was fun, smart, kind, and loving, but the Benzos changed who he was. They ultimately made him insecure, antisocial, hopeless, extremely anxious (for which the docs then just prescribed more meds) and finally suicidal. These drugs have literally killed thousands all over the world. I want the whole world to realize the dangers of these medications, and how quickly their short-term benefits can become toxic and deadly. Please cover the Benzodiazepine Medical Disaster.
Public policy needs to be changed. Although most physicians (in Canada anyways) will rarely prescribe these meds, there are still many suffering from being prescribed benzos 10, 20 or 30 years ago. They need support systems. They need recognition for what this truly is – a crippling disorder caused by the pharmaceutical industry. If they get proper recognition, maybe these people would not feel the guilt, shame and despair as they try to carry on their lives despite the withdrawal symptoms. They need someone to say, “It’s OK – we’ll take care of you while you get better. This is not your fault.”