My Benzo Journey Over Forty Years
In the Beginning
What is this? What’s happening to me? Questions that I asked myself many a time throughout the last forty years of my life. This is my story and how I eventually came to answer those questions and the devastating consequences of finding those answers.
The year is 1972 I had just given birth to a beautiful baby boy. My first reaction on seeing him was, “Gosh he’s huge!” He was in fact 9lbs 8oz and 23in long, a bonny boy with hearty lungs. I thought my work was done but it was only just beginning. I lay back exhausted, relieved it was over and ready to sleep. Instead of sleep a searing pain wrenched me forwards as I vomited violently. I had received an epidural before the birth so how could I be feeling pain? I tried to relax and the young doctor reassured me that everything was ok and he was just going to stitch me up. My pain was supposed to be all in the mind and a reaction to childbirth. This was my second child so I wasn’t new to this and had no doubt something was up.
It certainly was. The ‘something’ turned out to be a major tear in my uterus. The following 12 hours were some of the worst in my life as doctors fought to save me. The detail is not important although the outcome plays a significant part in the years to follow. After a night of trying to prevent the haemorrhaging I was taken to the operating theatre and given an emergency, life saving hysterectomy. I was twenty-six years old.
My immediate reaction, on being given the news as I came round, was obviously sadness that I would have no more babies but also positive in that I had always been interested in adopting children anyway. I had two healthy boys and was far luckier than some. I left hospital and returned home to recover quickly and care for my family. I put the trauma and my near death experience behind me and went on with living.
So life continued as it does with a young family, a husband and a home to look after. My days were filled with nappies, happy children and the usual parental obligations. Although I was a teacher I had no desire to return to my profession until the boys were older. During this time we decided to move to a larger home with a bigger garden for the family. We wanted more space and perhaps a country setting. This materialized in the form of a sizeable, extended bungalow in a nearby village. The garden backed on to fields and the friendly cows welcomed us as we moved in on a glorious spring day.
It would seem all was perfect in my life at that moment. The next few months were happy ones as I enjoyed my new baby and met the new neighbours. My eldest son made friends, started at a playgroup and my husband was immersed happily in his Science teaching. I had little inkling of what was to come. My serene and comfortable life lulled me into a false sense of security and belief that all was right with the world.
The first signs of discomfort were mild. Just little instances that I brushed aside as non-consequential. I seemed to be hotter than usual, lacking in energy and finding even simple chores quite demanding. At first this was only intermittent and I put it down to looking after my two lively boys. My life was busy. I helped at my son’s playgroup, played tennis, visited friends with young children and spent time with my parents who had also come to live locally.
As time went by and my youngest son was approaching three these initial signs became more intense and I knew something was not quite right. One day we went to watch a puppet show in our local town. I was laughing at the antics of some very weird but beautifully crafted mannequins when I was suddenly enveloped in an overwhelming sense of fear. My heart started beating rapidly, the sweat was pouring off me and I had to get out of the theatre. I managed to make an exit but felt very faint. Ok, so that was just a fainting fit and nothing to worry about. It must have been a bit hot in there and I let the incident pass.
I now found that my sleep was becoming interrupted and I no longer enjoyed the deep and peaceful slumber I’d been used to. I would wake in the night drenched in sweat and suffering weird aches and pains. At this stage I visited my doctor. He had no advice to give apart from suggesting it was anxiety caused by a busy life. He suggested sleeping tablets. This was the mid 1970s, a time when benzodiazepine drugs had entered the scene and Valium was considered to be the answer to all life problems. It was dubbed ‘Mothers little helper’ and was doled out with any diagnosis of anxiety or insomnia. I wasn’t at all happy and declined the offer. I had less stress in my life at that moment than I had had when managing a full time teaching career. Anxiety wasn’t an acceptable answer for me. I now started researching.
The World Wide Web hadn’t yet burst upon the scene so I didn’t have access to the myriad of sites and the information that’s easily available at the click of a button or swipe of a screen today. I had my suspicions but it was awhile before I became convinced, through my reading, that I had entered a very early menopause due to my hysterectomy. I was a bit shocked but it took a major incident to finally persuade me that I had to do something positive to get the correct treatment.
It was just before Christmas in 1975 when I was attending my brother in law’s wedding about a hundred miles away. It was a crisp winter’s day. My parents were there as well as my husband and sons. It was during the service that I was again faced with the overwhelming sense of fear and my heart rate revved up to an unbearable speed. I went outside and tried to relax. As it all calmed down it was decided that my parents should take me straight home while my husband and sons remained at the celebrations.
I can remember little of the journey but I do remember on arriving home my pulse once again increased to intolerable speeds and I found breathing difficult. My mother rang for an ambulance and I was taken into the local hospital as an emergency. I was rushed into emergency care, wired up on heart monitors and reassured that I was going to be ok but they wanted to keep me in for tests. Doctors wanted to rule out any causes for the sudden attack. I was in hospital for about a week and had a several blood tests. It was finally decided that I had something called systemic lupus erythematosus or SLE for short. I didn’t test positive for all the factors for this disease but one test did reveal that something was wrong with my immune system. In this disorder the body’s immune system mistakenly attacks healthy tissue. It can affect the skin, joints, kidneys, brain, and other organs. I had arthritis as well so it seemed a strong likelihood that this was the correct diagnosis to the medics dealing with me. I was sent home with a high dose of a corticosteroid drug which was supposed to dampen down but not cure the symptoms. I still wasn’t convinced but did as I was told. Doing as I was told proved to be my downfall both now and in later years.
That first night home from hospital I entered a living hell. I experienced real panic and my whole body shook as I struggled to keep consciousness. My heart rate again escalated, I was vomiting and pure, unadulterated fear overtook me. I honestly thought I was dying. My husband called in a neighbour to sit with me while he telephoned the doctor. She held my hand and did her best to comfort me although I was scarcely hearing her. When the doctor arrived he did a thorough examination and reassured everyone that this was a very bad reaction to the corticosteroid and I must stop taking it immediately. Instead he prescribed Valium and gave me an injection of the drug. The Valium calmed me and I slept. So started my long journey into benzodiazepines. A journey that was to last the next forty years and culminate in an aggressive and unrelenting withdrawal process which was to prove even worse than this early experience of brain malfunctioning.
Over the next few months I continued the Valium but also still suffered strange bodily sensations, palpitations and temperature fluctuations that led me to see my gynaecologist with the menopause question that still hung over me. An examination proved that my one remaining ovary was the size of a large plum and needed to be removed as soon as possible. Obviously its removal would mean the menopause would no longer be in doubt and the simple replacement afterwards of oestrogen, through Hormone Replacement Therapy, would leave me serene and in control of my life again. I was easily fooled!
I had the operation, although extremely nervous by this time. I managed to recover sufficiently to care for the family again. Sadly, not one symptom was cured and many intensified. Somehow I learned to live with them and tried to gain stability on the various hormone treatments that were tried. They were of little use and eventually the constant pain and insomnia led to the prescribing of sleeping tablets to enable me to function with some degree of productivity. These tablets were Temazepam, a benzodiazepine that can cause the very symptoms I was suffering from in my early, enforced menopause. It was a difficult time and I did see an eminent gynaecologist in the field of replacement therapy only to be disappointed as his regime of hormones failed to correct my problems. Better to accept and hope the menopause would pass with time.
In the course of our lives we learn from our experiences and use the outcomes of such experiences to inform similar events as time progresses. I had these experiences but with the prescribing of the benzodiazepine for so long I believe that the learning my brain should have encompassed was dulled. I was left with perhaps only a fraction of my functioning self. I could just about care for my family and my bodily needs but often I was overwhelmed by pain, anxiety, sweats, insomnia, brain fog, exhaustion and eventually several external indicators that were hard to accept at my youthful age. My hair thinned and my skin became papery and dry. I know my boys suffered from having only half a mum while they grew up but luckily they had a great Dad who was always there for them and had sufficient energy to act on behalf of both parents as needed.
Whether the ensuing years were influenced by the early, traumatic menopause or whether the benzodiazepine sleeping drug was to aggravate the situation I shall never know. I do know the eventual tolerance withdrawal I suffered led me to realize just how ill I had been for the previous forty years and how I had to somehow find and prove myself before it was too late.
The intervening forty years, up to jumping from benzodiazepine drugs, obviously form a major part of my life story and this is not the purpose of this Blog. However, during those years the sleeping pills and their effects on my Central Nervous System may have influenced much of what I did. Strange, very weird symptoms would come and go. At the time I trusted the diagnoses of doctors and believed I was just suffering a bad menopause due to my comparative youth and the suddenness with which I had been precipitated into this middle age phenomenon. My body had a lot of adjusting to do to regain equilibrium and I was told the sleeping tablets would help to give me a good night’s rest in order to cope with any other symptoms. I never questioned the repeat prescriptions or the dosage and there was no internet for me to research any possible side effects. I put my faith in the medical profession which I had been brought up to believe could be trusted to support our health and cure any problems. I wish now I had been a little less naïve.
I can only look back today, somewhat in anger, at events that followed. However, I blame no one because doctors just didn’t appreciate the dangerous side effects of benzodiazepine drugs. They were and still are very much influenced by profit- making drug companies. If anybody is to blame it’s me for my lackadaisical attitude of acceptance and belief that this was all menopausal. Doctors don’t want to see patients suffering but the only tools they have for easing that suffering are reassurance and drugs. What does seem to be at fault is the relentless prescribing without any sort of review system taking place. I was to change my doctor several times over the years and at no time did I experience any advice or questioning of my repeat prescription until after I had been dependent on them for far too long. The dosage was then reduced and for about ten years I took only a minimal amount of Temazepam intermittently. Perhaps this was when things started going wrong as the drug levels waxed and waned in a chaotic fashion depending on how much I had taken the previous night. I believe this ‘use occasionally as needed’ caused me a far worse eventual withdrawal than if I had been on a steady dose that could have been tapered slowly. We live and learn!
December 11th 2010 is the day my Mother died and the day we should have been travelling to Australia. Our Australian trip had been planned for several months as my Mother of 94 was being well cared for in her Nursing Home. This trip was never to take place and I could never have remotely imagined what was to happen over the following three years. We received a call after checking in at Heath Row to say she was dying and could we return. We turned around, checked out, hired a car and dashed home, a journey of 270 miles. A very stressful journey but I made it to be beside her over her last few hours. She was barely conscious but I feel she knew I was with her.
The emotional consequence of losing my Mother was the first of several experiences that pulled the rug from under my feet. During the following months my husband suffered heart problems in the form of Atrial Fibrillation which necessitated several 999 calls and dashes to hospital before he had a Cardio aversion operation. This lasted awhile until the fibrillation returned and he had further major episodes that culminated in another cardio operation in Plymouth. Recovering from this we experienced a burglary while away and much of my Mother’s jewellery and other family ‘keepsakes’ were taken alongside my two computers, cameras and various personal items. I started having strange, very frightening symptoms that were put down to the ‘stress’ of these episodes. At this time I was taking ten Nitrazepam tablets a month of 5mg each. I rarely took a whole tablet preferring to try and sleep with as low a dose as possible. My doctor also offered other drugs such as Zopiclone and antidepressants. I was lucky in that I didn’t resort to Valium at this time although I did have some tablets left after being previously prescribed these in a low dose for muscle problems.
Before I entered the full onslaught of benzodiazepine tolerance and final withdrawal there were a number of other problems over my many years of use which I had always put down to the early hormone disruption of the menopause as mentioned previously. To name just a few……..I had occasional extreme panic and intense anxiety for no reason at all; muscle pains and twitching in my legs especially after exercise or at night; hot sweats every night and insomnia in spite of the tablets; overreaction to life events; palpitations; nervousness out of all proportion to what I was doing such as when cooking; stiffness in my arms and legs; tiredness; lack of motivation; very poor memory; lack of concentration and so forth. All these were to become far worse with tolerance and withdrawal.
The First Four Months
I want to try and put the acute stage of withdrawal into words but this is no easy task. This stage is going to be a little different for everyone who has to endure its relentless, unforgiving passage.
Panic attack doesn’t go half way towards describing this. A panic attack ends within minutes maybe hours but the acute stage of benzo withdrawal may last weeks or even months with little respite.
I stopped the Nitrazepam sleeping tablets on November 22nd 2012. I write in my journal, “Must let panic pass, adrenaline will wear off, don’t worry if not sleeping, just go with it all for the moment as I will get better”. Wise advice but as the weeks passed so it became harder and harder to just let go and watch it all rage around from the safety of my bed.
There was only the Benzobuddies withdrawal site to help see me through all this and to understand what was happening. I believe this process is the GABA receptors in the brain trying to come back on line so to speak. The brain is left in an acute deprivation from a drug that has caused these receptors to be down regulated. I don’t understand the full medical explanation but suffice to say that my brain was suffering a severe physiological reaction and was trying to repair from years and years of this down regulation. There is no research only many, many sufferers putting their own experiences into words. The bible is the Ashton manual written by Professor Heather Ashton and the only accepted work on Benzodiazepine withdrawal. Although Professor Ashton is now elderly she did email me with encouragement and some wise words on sleep when I had suffered sleep deprivation for a week. No sleep at all just relentless pacing of the house as I was unable to even lie still in bed.
An adrenaline attack would often hit during the night for me. This is when our cortisol levels are at their highest and having to deal with the surge of cortisol plus an already weakened body from withdrawal gave me intense symptoms. I liken it to being dangled over a precipice from which any minute I could be hurtled into oblivion. I actually felt I wanted to be hurtled into that oblivion and die quickly. Dying would have been the easy way out. My heartbeat increased to uncomfortable rates. I shook and sweat poured off me. My whole body stiffened, as my muscles were painful as if stretched taught by the adrenaline. I was vomiting, had unrelenting diarrhea and water drained off my body. My whole system was over revving as if the accelerator was being pressed and jammed down. I was scared, dizzy and my blood pressure climbed at these times. I spent my nights walking around my house, in and out of rooms chanting positive affirmations such as ‘This too will pass’. There was little respite for five weeks and during this time I was ringing around for any support I could find to just keep me alive…. The Samaritans but they had no knowledge of withdrawal; emergency doctors but one even said, ‘Benzo Withdrawal was all a myth’, how I wish he could have suffered and experienced the reality of his so called myth; The Bristol Tranquilliser project, who were immense help and enabled me to keep sane; Rosemary, a dear lady who runs a group for sufferers in Cornwall and has always been there for me; Mind who again had little knowledge of withdrawal at this time and so on. Literally anywhere I felt could give me an explanation and help get me through this dreadful phase. There were periods during the day when I may have had a brief respite as my exhausted body gave up and I rested on my bed distracted by an inane television programme but these were few and far between.
Just writing about this phase has started me shaking and sweating as the memory is recalled. The best help I received was again from the website Benzobuddies where I would write post after post shouting out my fears. There are 11,000 sufferers on this site and many in the acute stage as I was. My journal records some of the worst moments, “Restless and agitated, very cold but sweating, must float through and keep calm, whole body vibrating and legs twitching with violent contractions, sick, stomach pain and movement, trying to breath through, heart palpitating, mustn’t fight it…….”.
It was if my body was no longer a peaceful, calm haven of which my brain had control. It was now inhabited by some kind of force with a will of its own. This force had taken over every part of me and determined whether my muscles would function or not, whether my heart beat evenly or erratically, whether my thoughts were positive or negative, whether my stomach could digest food, whether I should sleep or stay awake all night, whether I was boiling hot or freezing cold, whether I laughed or cried. It took over my very being and I had no say in the matter. I just had to go with the flow and let it all happen without putting any obstacles in its way. Eventually it let me go for a brief respite into normality only to take over again when I was least expecting it. At this time I was aware, and still am, that the slightest trigger could allow it access so I could tolerate no drugs, supplements, sugar, caffeine, processed foods, exercise or just plain stress. I had to tread very carefully.
At about three to four months off the worst of these symptoms let go and I entered a phase of windows and waves.
Months Five to Twelve
For the next seven months I had periods of comparative wellness followed by further intense symptoms for weeks at a time. From the sixth month I did feel a lot more positive that healing was on its way and there was light at the end of the tunnel. Even in ‘normal periods’ I mostly suffered low back pain, stiffness in all my muscles, dizziness, unsteadiness on my feet, intrusive thoughts, insomnia, temperature variations, stomach upsets, extreme tiredness and foggy headiness, background anxiety, weakness, lack of motivation, poor memory etc. I also had a lot of eye, ear and throat problems of varying intensity BUT I was able to live a little. I managed to go out and even spent a few days away in our camper van. After the preceding months this was a miracle!
Until month nine or August 2013 I jogged along accepting all that was thrown at me until I was hit with another major wave that was to last over two months and send me spiralling downwards again.
Journal entry for August 1st 2013....
Oh dear, awake all night. Hot, sweating, many toilet trips, headache, palpitations, revving anxiety, muscle pain and stiffness, nausea. I'm losing hope again. Awful in the morning with sickness and unable to keep still, pacing the house again. I feel depair and frustration as I've been so much better over the last few months. No energy to even get dressed.
This wave was to last until November before I entered another period of relative calm...
Months Twelve to Eighteen
The nightmare continues. At month 12, November 2013, I thought I was well on the mend telling everyone I was better and seemed fully recovered....huh! In fact I was about to enter a period of tumultous waves and aggressive symptoms. The forwards and backwards nature of recovery intensified. A month 15 I entered one of my worst waves which was to last about 6 weeks. February 25th...
Back in a bad time. Kept waking every two hours with sweats and pain flowing through my arms and legs. Evetually woke to revving and drowsiness and continued, intense pain. Sat all day, absolutely fed up as so weak now and anxious. I look like a ghost with red rimmed eyes and dark circles in a white face!
This was to continue until April 14th with a brief respite of a few days during March. At month 18 I started turning a corner and hoped symptoms would now be a little less intense. Sadly, this wasn't to be as my brain anod body hadn't fully adjusted yet.
Months Eighteen to Twenty four
There have been very few changes over these months and I continue with waves and windows of varying duration. I’m now officially in Protracted Withdrawal at more than eighteen months out and still suffering bad symptoms. I suppose it’s to be expected with the several decades I was exposed to benzodiazepines. Also, there have been stops and starts during my years on the drugs when I tried to go it alone only ending up back in the doctor’s surgery being prescribed perhaps another variation of these poisons. I am severely kindled and this has led me to suffer a longer than average passage to recovery.
I’ve broken this period down on a month by month basis as I know some people like to know what I’ve experienced at a certain month and compare this to their own suffering.
Month 18…A ‘mild’ month with good days and bad days which culminated in a long window during June 2014.
Month 19…The window continued and I believed everything to be improving with only the occasional poor day.
Month 20…Rapid deterioration and I entered a bad wave. This could have been precipitated by the impending visit of all my three sons and families although they were not all staying with me having rented a couple of cottages nearby. It was more the emotional reaction of having them altogether at one time and needing to be well to enjoy the occasion. I could stand no stress good or bad.
Month 21…I spent much of this month in my room both during the visit of my sons and grandchildren and after they left. I was often awake all night, ringing the Samaritans again and generally trying to hold on while the wave passed. There were many physical symptoms plus mind-bending anxiety that gripped me both day and night. Little sleep this month.
Month 22…I was bit calmer and managed to get away in our camper van until the end of the month when a Tsunami made its appearance and lasted several weeks. I couldn’t really identify a trigger for this.
Month 23….The previous wave eased off and this was a month of comparative calm.
During these six months I never slept all night and generally woke several times for toilet trips, rapid heart rate, nightmares, restlessness and sweats. I constantly prayed for it all to come to an end. I was often scared that my body couldn’t take any more and I would just drop dead from a heart attack. During the days I was mostly a able to cope a little better with the symptoms. I also had a lot of pain either flowing throughout my body or in my lower back.
My story continues in my Blog posts as, at this date of August 2015, I'm still suffering.