January 2020 on
-Healing from a Protracted Withdrawal from Benzodiazepines-
This is written by a sufferer of Benzodiazepine drugs prescribed for sleep over 40 years. Her numerous undiagnosed or wrongly labelled illnesses over all that time and her eventual realisation that she was suffering severe, ongoing tolerance symptoms from her decades of a prescribed medication. She subsequently cold turkeyed and entered a very protracted withdrawal. In spite of this long and difficult journey as well as her age, she has slowly, mostly recovered from the damage she suffered.
Of course that sufferer is me and it’s my story and my slow, barely perceptible recovery as symptoms waxed and waned over several years. I’ve been asked to write this by others in a long recovery from Benzos. Mostly they are concerned about the phrase ‘everybody heals’ in spite of there being little discernible evidence for this amongst the protracted community. I clung on to the phrase in early withdrawal but gradually, as the years went by and I saw so many suffering, even bedridden, there was little hope for my continued belief in this. Far better to research my own ways to cope and get through the bad times rather than wait for some miraculous happening, somewhere in the future, especially at my age which meant maybe I wouldn’t live to see it anyway!
No I am not fully recovered from the experience but I do consider myself very well for my age of 75. I still have some bad nights and I am very susceptible to stress at nearly eight years since my last benzo tablet. However, this is nothing compared to the past years. I know others at my stage and beyond still with symptoms and still finding it hard to believe that they can get better. This is entirely understandable as with no medical support and no understanding out there in the world we only have each other to rely on and keep us going. Doctors want to label this such as anxiety, depression, undiagnosed symptoms, Chronic Fatigue, Fibromyalgia, mental breakdown, you name it and they’ve got a label and, of course a drug for it! Even other members of the benzo communities want to say there must be something else wrong with us and this can’t be withdrawal. They are wrong, for most of us this is definitely still recovery from the damage the drug can cause to body and brain.
I also write this for the education of those who are carers, whether they be friends, families or medical professionals, of anybody in benzo withdrawal especially a protracted withdrawal and perhaps many years after the last dose of their drug. It exists, the symptoms can be just as bad as in early withdrawal and occasionally even worse. Your loved one or your patient may be unable to get out of bed for any length of time due to debilitating pain throughout the body; they may be unable to put together a coherent sentence due to cognitive issues; they may suffer many nights of insomnia due to akathisia (inability to keep still), sweats, cramps and so forth; they may be sensitive to many foods and have to watch their diet and most are unable to tolerate any further drugs or supplements due to severe reactions. The list is endless but it all indicates a disturbance in the brain that has been caused by these drugs and can take many, many years to heal.
I have been there, been disbelieved and tested for numerous other illnesses and spent night after night screaming in terror from pain and from the horror of the nightmares that dominated any sleep I did get. I learnt to trust no doctor and steered well clear to prevent further misdiagnosis and disbelief that this could go on for so long. I just held on to the best of my ability and got through the days in a haze of fog and pain. The lack of knowledge in the real world was frightening and quite scandalous as I saw more and more of the protracted sufferers almost forced to add further drugs. Luckily most are able to avoid that route and realise what is happening to them and that this is continuing to be a healing process.
I am attempting to convey that healing happens but sometimes it can be excruciatingly slow for a few of us. We live each day in hope as symptoms continue in whatever form they have taken for us. I’ve never given up on my healing and I now go for long periods with no symptoms at all. When they do return, mostly because I am under a lot of family stress, they are nowhere near the hell of the first year or two. It does get better so please, all of you suffering a protracted withdrawal keep going through and never lose hope. When you arrive at that final destination and can celebrate please let us have your success story as well. Protracted people more than ever need to be provided with that continued hope for healing.
I am better after my setback but more of that another day...it was another learning curve.
There are many coping skills, therapies and the such like that can be used to help your own recovery but there are also some
things that need to be addressed before looking at how to help yourself through the worst times. I’m calling this 'Tough Love' because you may not want to follow this advice preferring to dwell on the fear and misery.
...First and foremost avoid any horror stories like the plague. Your sensitive nervous system at this time is going to absorb them into your very being and influence your stress levels so fearing the worst for yourself.
...Take a break from the benzo groups, they offer good support but can also lead you in the wrong direction and create confusion. I’ve seen this happen so many times and it never ceases to sadden me. Find only one source of advice that you trust plus a few trustworthy friends.
...Believe in yourself and your own gut feelings and don’t blindly stumble down alleys that can lead to worsening symptoms. I’m referring to the doctors that may try to foist further drugs on top of you and the numerous supplements, nootropics, herbs, amino acids, minerals and so forth that are touted as miracle cures, there are none. Be your own advocate.
...Don’t seek out every little symptom in your body and write about it as this not only ingrains the misery on to you own mind but also on to the minds of those that read about it. Symptoms will pass but they will definitely linger longer if you focus on them.
...Never say you are dying because you are not. In fact quite the opposite because symptoms mean your body is coming back to life, perhaps after years of being dampened down by a sedative drug. Let it do this and celebrate your return to life instead!
...Stop that looping brain as the thoughts go round and round creating an inescapable hell of negativity that seeps into your very being. Break the cycle, use the time to learn a new skill, read, listen to music or walk in nature. Find a coping skill that suits you and this may be learning a new spiritual understanding of life. Use your time wisely.
...Finally please take the time to share gratitude with others. Instead of dwelling on how bad everything is that is happening to you think about what you can be grateful for in your life. People would far rather hear about this because love comes above everything else in the end.
Never forget you are recovering and focus on how you are recovering rather than how awful everything is at this moment in time.
My LOVE and understanding as always
I wrote this in 2019 but I want to add it again today because I am experiencing that dreaded setback! I considered myself well and recovered then suddenly I am facing a long and dramatic return into sleepless nights and the nightmares I have spoken about before on my journey. I am now 7 years 7 months off. Symptoms are never more than a stone’s throw away for a long time for a few of us. However, I am getting through and I recognise this period as a time when more readjustment is needed in my brain to bring it back to full health.
‘I’ve been so reluctant to post this and share it with you because I’m always aware that a setback can happen out of the blue just as they’ve happened for others a long time off like me. However, I think the time has come to bring some hope into everybody’s lives especially those who may be on a long and protracted benzodiazepine recovery journey. I’m going to risk it and declare myself well, free of benzos, no symptoms and back to a normal, drug free life with no signs of illness or benzo damage of any sort. I’m 61/2 years off, turned my last corner at six years off with just one wave for a few hours a month ago and nothing since. I have more energy than I could ever believe would come back and sleep like the proverbial log.
After 40 years of various benzos, often prescribed in high doses and together plus other psychiatric drugs in the early years (due to some crazy diagnoses that were far from the truth of the situation) and a tumultuous recovery, much of which I still can’t put into words, I am a reborn! I was damaged by an uneducated medical profession that is not given any guidance on the awful and devastating problems their flippant prescribing, after a few minutes consultation, can do to the patients for whom they’re supposed to ‘do no harm’. I still say it’s a scandal of immense proportions when lives are taken away by those dangerous few minutes with a trusted advisor in charge of our health. It saddens me that we have to learn through our own research and through suffering countless symptoms that we had no idea were caused by this drug that should be prescribed, at the very most, for just two to four weeks not forty years! I will never trust a doctor again.
How has my recovery unfolded and what did I do to reach this stage are perhaps far greater questions to be answered now than moaning about why it happened. It happened and I accept that but will always fight to get recognition out there and to do my best to help others through the nightmare they suffer due to no fault of their own. I’m not going to list the points that helped my recovery but behind it all is the observation that acceptance and surrender without trying to fight symptoms is really the only way to win the battle.’
It will all pass again and is just another u turn on that rocky road to full recovery. I continue to accept and surrender. I will update when the road ahead is clear again!
Anxiety must be one of the biggest problems those recovering from benzos have to face. There are numerous coping tips to divert away from the feeing of anxiety but sometimes these are just not enough. The anxiety returns in full force and the desire to pop a benzo may dominate your thinking. Of course you won’t do this because you will have learnt that way only increases the anxiety eventually.
The easiest and most successful strategy to prevent anxiety overcoming you is to understand what it is, why it’s happening and why you should just sit with it and face it rather than trying to control it.
Anxiety is just a feeling like any other feeling you may have such as happiness and sadness, it doesn’t need drugging. Your own thoughts can give rise to anxiety and cause you to latch on to a behaviour pattern that repeats itself again and again in a roller coaster ride. When you think about it the whole of life is a roller coaster of ups and downs and riding these successfully is how we live our lives. You need to do the same with your anxiety and not try and jump off the ride!
So don’t attempt to escape from anxiety just sit with it and watch it from within. It can’t hurt you and the less you try to run from it the faster you will help it to pass. Wait and watch and let it go. Feel the rapid beat of your heart, the electrical vibrations and buzzing in your body, the sweating, the shaking, the scary thoughts, the nausea and the fear. If you wake at night to feel it at its greatest intensity, perhaps after a nightmare, try and go with it, don’t jump up with fear, lay on your back and breath slowly, watching from within and letting it pass. It is a common and normal part of recovery and needs to play itself out to help you return to peace.
Knowing that an attack of anxiety will eventually pass on its own and doesn’t stay with you forever is calming in itself. Letting it move through you without trying to control it or battle with it is your most powerful weapon towards the eventual lessening of this symptom.
A lot of people have asked me what I did to help myself through the long years of my recovery. I do try and inspire members here with inspirational daily posts but sadly these aren’t going to cure you although they will help guide you in the right direction.
Healing is a process that involves the physical body, the thinking mind and and any spiritual understanding or beliefs that you have.
I spent a lot of time writing as this was my distraction and what I enjoyed. I still do this as it’s a real outlet for me. Through my writing I’ve made lots of new friends which is only good. Everything I list here I still do because, although I consider myself recovered from benzo damage, I do have some work to do on sleep and anxiety which are my remaining issues.
So the number one help towards my healing has definitely been writing. I write a daily journal to keep track of progress and I write here and am trying to put a book together. Everyone needs some sort of distraction and this can be found in doing what they enjoy.
I helped my physical recovery through a nutritious diet and did have a nutritionist in the early years but found it better to make my own way through, choosing the food I ate and what suited me. Eventually I settled on what is mostly known as the Mediterranean diet with lots of fruit and veg, good quality, mostly animal protein and low in carbs. I still have this diet now and doubt I will change as it seems fine for me.
I tried just about every supplement supposed to help and in the early days my doctor prescribed one or two drugs like Lyrica and Buspar but these were all an absolute nightmare so I learnt the hard way that my brain was only going to recover if I left it free to do so. I spent a lot of money only for these to be thrown out almost as fast as they arrived! My doctor also learnt not to prescribe just to support and reassure with any tests he felt necessary.
In the early days I inhabited the benzo groups especially Benzo Buddies where I made some friends, In those days I scared myself going on the groups, crying our about symptoms and reading the horror stories that others put up. I learnt that this was only adding to my hell so I removed myself from most groups and talked to just a few friends and used the time instead to increase my knowledge of how benzos had damaged my physical brain and body. This lessened my fear of the numerous symptoms.
I talked to the helplines here in the UK and they were great for reassurance at that time. Sadly the support doesn’t seem so positive now and they are not providing the reassurance for protracted people as they did then. I also had the help of Baylissa Frederick and a wonderful lady in Cornwall, where I lived then, who was recovered herself after three years of hell and had set up a local support line.
I learnt, read and Googled many different ideas to help myself overcome the intense periods of anxiety that withdrawing from benzos triggers. I added numerous techniques to my arsenal and used them as necessary. This has resulted in a large library of books that I continue to read today in order to support myself and others. I took out what suited and helped me best and still do this.
On the more spiritual side I again read inspirational
stories and learnt about the Three Principles understanding of life and had a therapist to help me further with this. I do have faith but it goes beyond that of just religion and it’s something that has really kept me going through the worst of times.
It has sort of become part of me and helps me in all life situations. You may come to your own spiritual understanding as you deal with the worst times. I’ll add here that I also recited affirmations to help myself through difficult days and nights.
Everyday that I was able and not bedridden I exercised by walking at least a mile with my dog. It wasn’t always easy but just getting away from the confines of the house and walking by the beach, over the fields, through the woods or just around the houses was immensely helpful and gradually these walks increased in distance. I needed to find the right balance for my exercise and not exacerbate symptoms by overdoing this.
If I had a bad day and couldn’t get out of bed I let it be. Sometimes after several nights of no sleep I was too worn out to even get dressed. I just used the down day to read, write or listen to my music while my body did its own thing to bring me through the wave. Trying to fight these or ‘push through’ never helped me at all.
There’s more but this is already long so I am going to stop there. I want to just let everyone know today that it does get better. It may not be as fast as you would like but finding your own way through as I did really will go a long way towards helping you. You can’t compare to others, symptoms are only part of your healing process and the biggest part of that process is, as I said yesterday, to believe in yourself and your own healing.