Today I have heard back from the Health Board regarding my out-of-region referral request to Prof David Healy, Bangor, Wales. The HB continues to insist that I first be referred to the Substance Misuse Service locally. Apparently psychiatrists in SMS have “the clinical expert knowledge in the management of benzodiazepine withdrawal and consequences.” Wouldn’t it therefore have been prudent to refer me there three years ago when I told my GP I was suffering from benzodiazepine withdrawal? Apparently not. Of course my GP did not believe me at the time. Strangely enough, the GP who advised me to come off Nitrazepam after 40 years has just written to me stating that his experience with benzodiazepine withdrawal is from a substance misuse perspective and that this is not relevant to my case. I am a bit confused as you might imagine. I am inclined to go along to the SMS just to see what happens. And if my GP’s experience is not relevant why did he have the audacity to suggest I stop taking Nitrazepam with the result that I am left in a state of permanent disability? I wonder if anyone can explain it all to me.
I didn’t really expect this day to come, the day when a doctor consulted via the standard GP / consultant route would actually say “The shock of coming off Nitrazepam” was the most likely cause of my neurological functional symptoms and resulting disabilities. Yesterday, I consulted with an NHS neurologist and the consultation was the sort of conversation I would expect with any competent doctor. He was kind, he listened, he was honest and he told me what I have known since early 2014. I forgot to ask if he would put his opinion in writing to my GP. I certainly hope he will. A medical student was present during the consultation, I hope she learned something useful. Over the past 3.25 years, I have consulted with 5 GPs, an NHS psychiatrist, a private neurologist, a neurophysiologist and finally, an NHS neurologist. One GP was genuinely puzzled and that is okay, two made no comment but I took their silence to mean they agreed with my assessment of my symptoms, two GPs were defensive and, I believe, dishonest, either in their words or by their silence. The psychiatrist was either ignorant or dishonest or both and has since retired. The private neurologist was defensive, uncommunicative and I believe, dishonest.
Yesterday was not a victory, simply an acknowledgement of the harm done to me as a result of medical advice. This acknowledgement is crucially important for patients thus harmed. To fail to make this acknowledgement inflicts further psychological and emotional harm to pile on top of the physical damage already caused. Today, I feel very low. I still have to live with the knowledge that my life has been ruined by a prescription drug. I wonder how many other lives have been devastated in this way by NHS doctors. I imagine the numbers would be staggering. If the norm is to conceal the truth, we will never know and we can pretend that there is no need for change.
I was fortunate enough to have informal confirmation of the harm done to me by a leading UK specialist in benzodiazepine withdrawal, a GP outside the UK, consulted privately and a former colleague and friend, a practising GP. Many patients do not have the strength or the will to fight for several years or the necessary knowledge or skills to seek out relevant medical specialists, nor do they have friends in the medical profession. They should not need any of these things, they should be told the truth by the doctors responsible for their care. I have published a number of letters in the BMJ and the BJGP and have received support from some doctors, I have had unfailing support from the online patient support community, without these things I would undoubtedly have lost the will to live. “First do no harm” has a very hollow ring to me now and for many other patients in the prescribed harmed community. The power of the pharmaceutical industry is such now that no patient is safe when consulting a doctor. Perhaps it was always so, I was just too naive to realise it.
I would never have imagined it was possible. A medical profession so closely in bed with a pharmaceutical industry that has no morals whatsoever and is solely driven by greed. Millions of patients prescribed drugs of questionable value and the immense harm caused kept hidden. And now I am a victim of that along with so many other patients. Our doctors are so ignorant of what they are doing or are they in fact doing it in the full knowledge that they are endangering people’s lives? Either way, it is abhorrent. And when the patient’s health is destroyed they deny all knowledge of what has happened. They imply the patient is imagining his or her symptoms or is mentally ill. Or the symptoms have no biological basis. Abusers generally do deny their abuse, this is no different.
I submitted a formal complaint to my GP practice regarding the events of the past four years. I have received an 8 page response, much of which is entirely reasonable but some of it is deeply worrying. I changed GP practice in 2012. My new GP of course did not know me or my medical history. At the first consultation he suggested I stop taking Nitrazepam (5 mg) which I had consumed for 40 years for myoclonic epilepsy. I was panic-stricken. He did not answer my questions about alternative medication for epilepsy and the possible impact on my mental health from withdrawal. I decided to taper off the drug myself over three months. I now know that I tapered too quickly and if I had taken a lot longer I might have avoided 3.5 years of torture and resulting disabilities. My GP has written in his response to my complaint that he planned to taper me off over a few weeks after substituting diazepam. First, diazepam will not control myoclonic epilepsy and second, a few weeks would have been highly dangerous after consuming the drug for 40 years. If we had followed that route I imagine he would at best have left me in a highly damaged state or worse. So after 4 years, he still seems to be completely ignorant of the dangers of benzodiazepine withdrawal. Indeed, he has not even attempted to cover up his ignorance. Presumably he remains ignorant of his own ignorance and has been too arrogant to educate himself as to the reasons for my current state of ill-health.
Morning wasn’t so good but I managed to go to physiotherapy in the afternoon. I mentioned going to a swimming pool so physiotherapist said I could have six sessions of hydrotherapy to see how I get on with that. Chatting to the taxi driver on the way home, it transpired that she had reported her daughter’s psychiatrist to the General Medical Council and the psychiatrist was struck off. I imagine there might have been more to it than just that but there wasn’t time to go into any detail. Home help coming tomorrow and a former GP colleague. He phoned last night and we talked for two hours. It was lovely to have a good chat.
I can tell you what matters to me. Honesty and integrity. Particularly in my dealings with the medical profession. Sadly I have been unable to find this over the past four years. I have been left disabled after being advised by my GP to withdraw from a benzodiazepine, consumed for 40 years. I have spent 3.5 years in bed and endured torture I did not imagine was possible. My GP claims he does not have the expertise to diagnose my many terrible symptoms. Indeed he does not even discuss my symptoms with me. He words referral letters in such a way that every consultant tells me my neurological symptoms have nothing to do with benzodiazepine withdrawal. My GP also seems keen that I should see a psychiatrist, I am not sure why. Earlier this week I did find a doctor who shared my values. But not in the UK. Of course he diagnosed my symptoms with no problem whatsoever, they are so unambiguously classic to benzodiazepine withdrawal. He also showed concern, compassion and empathy. I have not been shown that for a very long time and had forgotten what it felt like. I wish my experience was an isolated one but sadly there are many of us. We congregate online to share our dismay and despair. My NHS doctors have no interest in what matters to me, only in what matters to them.
This is the account of someone severely affected by benzodiazepine withdrawal.
Your face colour may go red or your face colour may go green or mix or every day change. Tomato makes your full body sick and next day egg makes your full body sick or some people can eat anything or some people can only tolerate five foods. Some people can take supplements or for some people supplements are pure poison or everything goes opposite after months or years. Some people have mild or severe pain in only some parts of bodies or some people have full body pain head to toe even in mouth. You hate someone so much and want to kill, five minutes later you send lots of ❤️ to the same person. You feel suicidal and feel nothing good. Next day you are super manic and feel like you are a superman. Everything causes you panic, even the phone ringing. Your panic is max and you want to jump out of the window because your phone is ringing. Today, you seriously can’t move and tomorrow you seriously can’t stop moving all day (Akathisia) and you scream please stop me I want to take a rest but your brain never let you. Weeks later you even can’t walk to the toilet then go manic, akathisia again later. Racing thoughts and paranoia never stop even a second for years and sometimes you think of the same thing again and again over for years without a break. Full body is twitching and you even can’t breathe normally. You can’t stop eating all day even it makes you sick or sometimes you can’t eat anything at all. Everyday is in confusion and you fight the voice in your head telling you you’d better kill yourself and you feel so much guilt for everybody. It’s all your fault. It’s not true you know that but you still hear the voice telling you so. Want to shout down your brain. Want to punch your brain. Distraction! Distraction! You can’t watch TV so you start pacing all night at home. You walk the room to another room in dark for hours. Help me help me help me you scream every second but nobody is there and you turn to online support people. They are all suffering in their levels. Some people understand you and some people hurt you. There is no social life for years and depersonalisation scars you. You even don’t understand your own arms. You can’t recognise your own face in the mirror. You look outside and nothing looks real. Nothing 3D but everything is 2D like a painting. Buildings, sky, sun, moon, people, tree, reef, mountain they all look fake and you can’t feel that you live in your body. All sounds are so painful and it hurts your ears, head or full body. Lights hurt your eyes sometimes. Electric shock torture through your full body is endless. You are so afraid to be alone and at the same time you can’t be with anyone. Being with people make you feel
crazy. Everyday you fight to not kill yourself and not hurt yourself. This is non stop hell 24/7 and there is no treatment for this hell. Only keep breathing and stay alive and doing unbelievable hardest work and it’s beyond human can take and worst is nobody understand this. This is all a true story.