My blog continues from December 2016 to December 2017.
Acceptance, probably the hardest word that we hear in withdrawal. How on Earth are we supposed to sit back and accept all the suffering. Of course we can’t, it’s natural to search for ways to overcome an intolerable situation. However, My recovery has not come through some miraculous herb or some intricate method of training the mind but through my own acceptance of what is and what I can’t change. Once this is understood and believed in we are set free to live each day to the best of our ability and to be grateful for what we do have. It’s then that healing is allowed to happen.
I get saddened when I see people suffer from trying so many different products or trusting unknowledgeable therapists who
can heighten fears that something else is wrong. Of cause a therapist who has suffered Benzo withdrawal and who is able to support recovery is totally different and can be trusted. On the whole though please trust and accept yourself. Don’t turn to others
apart from friendship in withdrawal, just do your best to live without fear of the multitude of symptoms and without fighting them. They exist, they are real but they are temporary and will probably go faster if you leave them be the best you can. Always remember
to completely love and accept yourself whatever happens in withdrawal.
My Love to all Beating Benzo Warriors. 💙
I am putting this here on my Blog before posting elsewhere in case there’s anything anybody here would like to know and which I can add before ‘going public’ so to speak.
I’m tentatively writing my success story because the good days are piling in and the bad days are dissolving into a distant memory. I can’t put into words how good it feels. No more anxiety, no more pain, no more itching, no more palpitations, basically no more hell. I wake in the morning feeling rested and normal ready to enjoy my day. It’s true we do recover.
A brief resume of my history. Forty-five years ago I started to suffer major menopausal symptoms due to a life saving hysterectomy after childbirth followed by an oopherectomy due to a large ovarian cyst. I was in my mid twenties and received Hormone Replacement Therapy but it only made matters worse. Eventually the lack of sleep had to be rectified so I was give Nitrazepam to at least allow me to have a few hours. I believe right from that first dose of this benzo my problems were amplified but I only put it down to the sudden, early menopause as did doctors. Over the next few years I was diagnosed with many mental illnesses as well as Systemic Lupus Erythematosus (an autoimmune disease) and hospitalised for a short time with severe tachycardia. I traipsed from one specialist to another without success. They tried to feed me with just about every antidepressant then available (1970s) but my body rejected them all as they caused worsening problems. To cut a long story short eventually I settled on taking Temazepam every night for sleep in doses up to 30 mg. This was just the start of my journey.
For the following decades I lived my life with numerous inexplicable symptoms that were all diagnosed as menopausal due to the hormone imbalance. I soldiered on determined to make the best of my career and enjoyment for teaching. My husband literally raised our sons with an absent wife because I used to get so very tired. We even managed to run our own small but successful independent school here in the U.K. It all helped me to distract from my increasingly bad nights and multitude of inexplicable minor symptoms. I also had periods when my anxiety would be off the scale and I had no idea why. Eventually it all blew up in my face, we had retired, my mother died, my husband had heart problems and I hit tolerance with a vengeance. Too much stress exaggerated my suffering and I was still being told this was due to my life saving experience and sudden menopause forty years previously! Of course I believed this as I trusted the medical profession in those days. I sought therapy after yet another diagnosis and this time of Chronic Fatigue Syndrome. However, talking to my therapist and then researching the now widely available information on the internet the light began to dawn, it was the benzo for sleep (Temazepam then Nitrazepam) and the occasional benzo (Valium) now taken for muscle pain causing my nightmare situation. I stopped them abruptly and held tight. I had little knowledge of tapering at the time and my doctors told me withdrawal should be over within three weeks. It wasn’t so I restarted for another year before finally doing a second cold turkey on November 22nd 2012. All hell broke loose seven weeks later. The full story can be read on my website beatingbenzos.com as it is much more detailed but that’s just a taste of how I came to be in the withdrawal situation.
My recovery has taken a long time and I don’t want anyone reading this to believe it will be the same for them. Protracted withdrawal does happen for a very few, we don’t know exactly why but my long term use of benzos and my age now must play a significant part for me. Your recovery will be very different and could be a fraction of the five years I’ve taken.
I passed through all the various stages of a brain readjusting to a normal state of homeostasis. The acute phase hit at seven weeks off and I was bedridden, unable to hardly reach the bathroom or eat anything as my GI system erupted with sickness and pain. I don’t want to recall those days but they were unmitigated hell and I could never have survived without a patient, understanding husband willing to learn all he could about what was happening to me. Some of the worst times were at night when I would lie awake with sweat pouring off me and my heart pounding at an uncontrollable rate. The fear I experienced was indescribable. An emergency doctor visited one night and immediately prescribed 10mg of Valium, I stupidly took half this because I hardly knew what I was doing but suffered worse than ever with a paradoxical reaction to the drug. I was three months off then. I had learnt an important lesson, never to touch a benzo again.
My whole nightmare withdrawal journey can be followed on my Blog but it was one of windows and waves right up to full recovery. Many times I celebrated a window thinking this was it and I was recovered, wrong! The first year off, about four months after withdrawal, the acute phase finished and I thought briefly perhaps that was to be the end of my suffering. Major disappointment, it was only really just starting. I continued to go down into intense periods of just about every symptom recorded for others in recovery. I can’t list them all but they were both mental and physical. The pain and stiffness throughout my body were excruciating and the anxiety was like a herd of elephants rampaging through my stomach trampling on the butterflies sometimes used to describe anxious feelings. This was anxiety that led me to pace the night all through, upstairs, downstairs unable to keep still, just keep moving only stopping to relieve myself numerous times as my system went into overdrive. True hell would have been easier than this, I longed for the peace of death. This would then stop abruptly and I might have a few easier days before it all started up again. Year after year I had little respite and couldn’t travel far from home. Friends disappeared and even stopped communicating except for a trusted few who did their best to understand and give support. This journey really is an eye opener. You learn a lot about yourself and about others. In many ways, looking back, I can now have gratitude for what it has taught me.
Things didn’t really change until I was around four years off. If I’d known it was going to take this long for me I may not have survived those earlier months but I am grateful to the helplines here in the U.K. as well as to my dear friend Baylissa. Without their knowledge I wonder if I would be writing this today. This last year has seen the lessening of symptoms with waves becoming less intense and windows lasting longer but I’ve had some life stresses that I have reacted to and which I know set me back for awhile. Life happens and we have to go with it while the brain learns not to overreact and accept any difficulties that are thrown at us with a calm and sensible response instead of extreme anxiety. It’s all taken time and I hope now to never return to the nightmare existence which has been mine for the last five years.
A few of the lessons I have learnt as I’ve battled the beast and fought my way forwards. There are no supplements, drugs or herbs that can hasten recovery. I have a large boxful of everything I’ve read about and was supposed to help but all they did for me was set me back into a bad wave for several days. I would advise steering clear of all this until well healed. There is no quirky diet that is suitable for everyone but a healthy, sensible diet free of processed foods, sugar, alcohol and caffeine does help everyone. I’ve tried diets ranging from paleo to low carb and just caused worsening stress on my body. Antidepressants have side effects and if on one after withdrawing from benzos it’s better to taper this when reasonably recovered to allow the brain to heal fully. If you’re in a protracted withdrawal the likelihood that the antidepressant is having a negative effect is reasonable to assume however never stop this suddenly but speak to your doctor and devise another sensible taper plan when ready.
With regards the best practices for recovery I believe keeping positive comes at the top of the list along with trying not to focus on your symptoms or believe they’re due to something else as this is unlikely. Get medical help for reassurance if necessary. Don’t spend hours on the Internet, reading the groups and feeding your brain with doom and gloom which is guaranteed to pull you down. Go out into the fresh air and sunshine as much as possible, ground yourself in the beauty of nature. Learn a relaxation technique that suits you such as meditation or mindfulness. Pace yourself at all times especially when you start feeling well as you’re still very fragile. There’s lots more but take a look at the coping tips on my website if you need more.
This is my story and my recovery and I can assure everyone it’s well worth it to be free of these dangerous drugs. Helping others and writing here and on my Facebook group Beating Benzos has helped me get through all this and to learn as much as I can in the process. I want to continue with this so please ask any questions by email to email@example.com and I will answer. My Love to everyone wherever you are, however much you are suffering now, look to the better times ahead and move forwards one day at a time, it will happen for you.
It’s a sad fact of withdrawal that many people become ‘disturbed’ during the process and create a reality of their own. They believe only what they want to believe and attack others if they are told the opposite or given the true facts. I’ve learnt a lot over the last six years spanning my tolerance to the drugs and then recovery from my ‘cold turkey’. I wanted to use this knowledge to help others travelling the same path and who were as bewildered as I was.
It’s been a long journey for me and I’ve read many books, talked to many ‘experts’, been interviewed for Benzo articles, spoken on radio, talked to the U.K. helplines, spoken to numerous doctors and amassed as much knowledge as I can about benzos, their effects and how the brain recovers. Sadly there are still those that choose to make the journey hard for themselves by attacking other people and literally trying to push them overboard and make themselves the centre of attention by creating a toxic environment. They flatly refuse to accept that those like myself who have suffered, recovered and researched in depth can actually have more knowledge than they have. It’s these arrogant, misinformed and quite honestly dangerous people that make my blood boil! I am referring to those members intent on upsetting the Facebook groups, not only mine but others that have been set up to support people by highly knowledgeable administrators who want to make their own suffering and recovery count for something.
I’m sad to have to say this but this is really a warning to everyone in withdrawal that people are not always what they seem to be on the internet and some may have a hidden agenda. I want to help, I long for the day when all this is understood and there is professional help and acceptance but I am not sure I’ll see this in my lifetime. I try my best, learn constantly all I can and really want to find out as much as possible to support others and make my own suffering worthwhile. Perhaps I’m a little naive where human nature is concerned as I really want to trust everybody. Sadly, this has been another learning milestone for me as not everybody feels as I do or has a strong empathy towards others.
Thanks for reading and please be wary. I’m here to help and want to do this without drama or argument because there are no absolute answers in benzo withdrawal and once this is accepted then people can plan their recovery to suit themselves without an arrogant, they know best approach which is likely to only cause them harm in the long run.
I can be contacted through the Facebook group Beating Benzos so please join us if you’re not already a member. The group is for positive support as well as answering your questions.
My Love on this sunny November morning.
I’m now approaching five years off benzos on November 22nd. It’s been a long hard road and the last few months have seen life stresses that have been hard to live through. On several occasions symptoms once again could be described as acute but somehow I’ve survived by just taking one day at a time and reminding myself that waves pass bringing me to a new level of healing. For the last two weeks things have much improved again with shorter waves and windows that have remained open for longer
I was well along the road to full recovery when my life changed and as you know I moved to the other side of England with numerous blips along the way as there always seem to be in buying and selling houses in this country. Then my son had a major operation which caused some complications and I couldn’t manage the stress associated with this so have been unable to visit him yet. This continues to give me extreme anxiety and he is rarely out of my thoughts. These events spiralled me backwards as my sensitive CNS continued to react in the usual pattern of windows and waves. Luckily things are looking up once again as my system has calmed and I’ve settled into my new home.
The whole benzodiazepine saga has made me angry. Not only over the friends I‘ve lost over the last five years because I’ve had to opt out of life (amazing how we find out who are true friends are in this so perhaps for the best) but also over the scandalous lack of understanding by a society that goes on seeking a pill for every little ailment. People just don’t appreciate that such a miracle cure doesn’t exist only a dampening down of the symptoms the body could often well repair successfully on its own. The huge sales of over the counter drugs and queues in doctors’ surgeries provide the evidence. It’s only the greed of the pharmaceutical companies that is fed by this ignorance in the long run. Western medicine has a frailty that’s not recognised although I acknowledge it can often be life saving when used correctly.
Like everybody else in a Protracted Withdrawal we search for answers as to why us and why so much suffering for so long? I’ve talked to the helplines and it does happen but they say better not to analyse just accept and make our way through somehow. I suppose even this flippant attitude of ‘cast aside worry and accept what’s happening’ angers me. How can we let it all pass and just lose our lives in waiting year after year for the non arrival of full health. It‘s all made me even more determined to help the U.K. campaign to the best of my ability when fully well. I did get this website mentioned in a very good Daily Mail article on the dangers of benzodiazepines which was published recently. They are good support but my own story is so complex over such a long period of time that I can only advise and put them in touch with other sufferers. I long to see this syndrome recognised and for doctors to be educated on the dangers of the drugs they so flippantly prescribe. It’s not only benzodiazepines that take lives away but also antidepressants, antipsychotics and opiate pain medications. It remains an all time scandal that there is no support for those trying to get off these drugs and so very little knowledge amongst a medical profession that takes our lives away with a prescription written after a few minutes consultation and without a mention of the dangers of the drugs being prescribed.
I feel angry tonight after my forty years on a medicine that should be taken for no longer than two to four weeks as written in the British Medical Journal. Brain damage was inevitable for me yet not once was it recognised or acknowledged nor has it been over the five years of my life threatening withdrawal. I was lucky I survived but sadly there’s a growing number of people who don’t make it. I now understand that patient consent is required for anything prescribed but what good is this if doctors don’t have any clue about their medications in order to inform their patients. Many GPs have a lot to answer for with their failure to keep updated by reading the guidelines for their profession. A conundrum that needs redressing.
So I’m angry and hurting and very, very tired of the whole situation. I’ve had a rant and want to finish by reassuring those that are just starting their withdrawal that it’s only a very small percentage of people who enter a protracted withdrawal after 18 months off. Always see your doctor if you’re worried about anything but always question any drugs you may be prescribed. If you are already protracted then rest assured that it will get better eventually. Also please show your doctors the Ashton Manual and attempt to spread the word about this worldwide disaster.
If you wish to add your own observations and ask any questions please join the active Facebook group ‘Beating Benzos’ attached to this website.
I've written this on the Facebook group this morning and sharing it to my Blog......
Just to wish you all good Luck and keep going on your journey. I've not been around too much recently as my son has had some major brain surgery so I've been too worried about him.
When we're going through withdrawal with all its complexities it's also impossible to shut ourselves away from other life traumas. The very act of being alive brings with it inevitable dramas that have to be survived. In withdrawal actually getting through these natural life events is much harder because we may have been used to popping a pill to help us. Now we only have our own resources to turn to for this. One of the important parts of withdrawal is to arm ourselves with coping tools we can turn to in the event of a crisis in our outward lives. This may be a crisis of losing a loved one, of dealing with major surgeries in ourselves or others and so forth. Keeping away from that pill bottle or even a desire to up the dose of a taper becomes much harder. This is where it's essential, during this time of recovery, to help ourselves keep those natural anxiety emotions at a normal level, something that's hard to do with the damaged GABA receptors that may still be healing. Learn all you can to remain as calm as possible in a crisis and I recommend techniques such as EFT tapping, mindfulness, deep breathing and meditation, anything that suits you and you can cope with. Withdrawal doesn't have to be a non productive time of just waiting for symptoms to pass, use it to help yourselves learn as much as possible about the brain, it's functions and how to remain calm in a crisis.
For the last few days I've been tapping away saying affirmations and just getting through this difficult period for my family. Learning to cope with real life is a major part of recovery for everyone on this benzo journey.