Recovery Blog 5 - May 2015 Onwards
Although not entirely symptom free I'm now signing off from my Blog pages and will continue the end of my story under Final Recovery 😀. Yes, I believe it's happening at last and my days are returning to normal although my nights can still be a little 'bumpy' with the adrenaline rushes. There is still a lot to be said, a lot to be reflected on but at three years off the healing is happening for me.
Your own hell will end if you take note of the principals for recovery which have have benefitted many. These are not prescriptive but just what's mostly helped me get through. You will have your own coping techniques as well. Always remember that everyone is different in this and theres no hard and fast rules. Your own body and brain want to recover so take notice of the effects of anything you do or try.
* No other drugs if at all possible. Remember that medical tests are likely to be 'skewed' by the withdrawal process.
* No supplements unless you have found you don't have major reactions like me. Nutrients are best gained through good diet and not unbalancing the system with quantities of mega vitamins and minerals. Nothing has been shown to definitely alleviate withdrawal symptoms.
* Try and meditate for half an hour daily using one of the many available meditations or just by being peaceful and quiet and doing your favourite deep breathing exercise.
* Distract from symptoms the best way for you such as reading, watching funny films or television, listening to music, doing some adult colouring, craft work and so on.
* If you're not bedridden do some light exercise every day e.g. walking outside in the fresh air. Go out whenever you're well enough even if only as a passenger in a car as you must not withdraw from the world and become agoraphobic. Keeping in touch with the world and other people is essential for your brain to recover.
* Don't let your withdrawal symptoms define you as they are not the real you. To do this keep off the internet and visit the withdrawal community only occasionally to ask a question or gain support. There are many negative stories that can pull you down and they are not your story. Also remember phones, iPads, computers all emit an electro magnetic field that can ramp up symptoms and cause feelings of electricity to run through you as well as tingling in the hands and fingers.
* On days you feel well pace yourself and don't overdo things. It's difficult not to overdo it when you're free of the symptoms but just be gentle with yourself and enjoy it.
* Don't despair even if your healing is taking a lot longer than you ever imagined. It is happening all the time and bad waves can be times of greatest readjustment. I had my worst waves during the last four months so it can get worse before it gets better.
I will add more thoughts on the new page but for now I'm signing off from Blog 5 because I'm so much better and know my story is reaching its conclusion. Good luck to everyone reading my website, you will heal also. 💕
Dear friends, I am writing this today partly because it has become impossible for me to clear my email inbox. I apologise to anyone who has not had a reply from me. There are just too many messages and not enough time. Please don't take it personally. The urgency is that there is a theme to these messages: so many seem close to giving up… seem hysterical about not healing… a frenetic, frantic preoccupation with online horror and "what-if?" stories, a dangerous comparison of notes, and self-defeating “ain't it awful?” victim, pity parties.
All of this is normal because of the collective suffering and lack of support but please, please… be careful. Don’t get sucked into the world of victimhood because with it can come feelings of helplessness and overwhelm, and this can lead to a desperate hopelessness: a profound sense of being unable to cope. When you convince yourself that there is no way out, this is what can happen. I am receiving more crisis/suicidal emails that I ever have before and I am concerned. Please… don’t give up. You WILL get through this.
For almost 10 years I have been communicating regularly with people in withdrawal. For many of those years I emailed and spoke to them from early morning (UK time) until close to midnight. I was fascinated and had an unquenchable thirst for knowledge and understanding, with a sense of loyalty that made me want to help any and every one affected by withdrawal. As I write now, nothing has changed in this regard.
Over the years, as far as I’m aware, my reputation has been mostly good. I also know I’m referred to as being flaky and unrealistically optimistic. I’ve even been called “full of s*it” :) and have been quoted as saying things that are not even remotely true. People think that my answer to withdrawal is to say affirmations and sit in the lotus position, floating around the living room, meditating. Some say I didn’t have a bad withdrawal and that I’m lucky I was able to survive by repeating platitudes. The truth is that I suffered terribly from 2000 when tolerance to the drug became so bad, my long and involved relationship with the University Hospital of Wales’ Casualty (ER) Dept. began, until 2008 when I recovered. Not to mention the cold-turkeys, seizures, etc. My medical records file at the hospital is the size of four Encyclopaedia Britannica books, bound together with rubber bands.
So this is how the “flakiness” began… Early on, I decided to never give advice that could potentially harm anyone. This stemmed from the many calls I would receive with complaints about well-intentioned people who offered advice that seemed to have caused more harm than good. This was truly a lesson in the uniqueness of the withdrawal experience.
Now, ten years later, I have yet to hear of one thing that helps everyone (or most people) in withdrawal or of a tapering method that does not have conflicting reports. It doesn’t matter what it is, there are people who will feel they were helped and others who will feel they were harmed. (This comparison does not apply to cold-turkey/detox and rapid tapers which are harmful any way you take them.)
The reality is that over the years I have heard every theory about why what happens in withdrawal happens and what helps. I have received reports and researched information (to gain insight) on MTHFR genetic impairments, MJ, functional medicine, flumazenil, what’s GABAergic, kindling, baselines, what supplement works and what doesn’t, CBD oil benefits, query Lyme disease, query lupus, query fibromyalgia, query candidiasis, query chronic fatigue syndrome, you name it… I have seen the different “answers” to withdrawal come and go. I find it all remarkable and extremely fascinating.
I must mention as well that with all of this desperation for appropriate support lies an undertone of sadness. People in withdrawal are devastated and are frantically searching for help and answers, mainly because they are put on these drugs by medics, most of whom are at a loss as to how to take them off safely and responsibly and how to provide adequate support.
This is a global issue. I feel privileged to have supported people from all over the world and I mean just about everywhere – from Argentina up to Venezuela, USA and Canada, UK and the European mainland, Asia, Australia, Africa, New Zealand… people from all walks of life, including more doctors than you would think. I have observed how they cope – what works and what does not - how families and friends offer support and how some withhold it. I have seen people struggle through the protracted years and I have seen people heal very quickly, many within a few months. I have seen the losses, isolation and other repercussions of withdrawal. It is a cruel thing to witness but the fact that we do heal is life affirming and makes it worth the while.
My “flakiness” is really my lack of strong opinions about withdrawal other than that acceptance, perseverance and patience are key when it comes to coping well. It is very important for you to think independently and to find your own truth – find what works for you. Before you align yourself with the many theories and opinions, step back and ask yourself if they really make any sense? You will find that most don’t and much is speculation or coincidental.
What I can confidently say is that over the years, the people who manage their withdrawal best are the ones who protect themselves online and who equip themselves with coping tools and self-nurturing strategies. Those who cope badly or not at all are the ones who spend a lot of time being “realistic” (i.e. catastrophizing and fortune-telling), analysing withdrawal, constantly comparing notes and getting sucked into other people’s drama, getting stuck in “victimhood” and the worst of all, not accepting the process. It is amazing to observe just how much of a difference one’s approach and perspective can make.
So, no, I will never tell you to take a supplement, drink coffee or alcohol, smoke MJ or take CBD oil, or anything that I have seen people try and then become traumatized or suicidal because of an unexpected reaction. I will never argue about what tapering schedule is best and I will never tell people who feel that their regimen is working to stop doing what they’re doing. If you tell me you are taking supplements and you feel they are helping, I am honestly genuinely pleased for you. However, if you are revved up and in withdrawal hell, because I have had so many reports of people who have reacted adversely, I will suggest that you consider omitting them for a while to see if that makes a difference.
Sometimes people have deficiencies that need to be resolved (e.g. in iron which will cause anaemia). In those cases, if the deficiency is severe, you must weigh the consequences of ignoring the problem with tolerating any flare-ups. Introducing the supplement so very gently… that the nervous system almost cannot detect it… has worked for some people. It really is trial and error and finding out what your sensitivities are. Don’t compromise your health because of fear of flare-ups. They won’t last and you’ll be okay.
I have always been a supplement junkie but just couldn’t touch them in withdrawal. Now, post-recovery, my health is maintained with supplements and having a good functional medicine doctor. I do believe food is medicine. For the dystonia (for which I was prescribed the benzo), I am doing the adult ketogenic diet which is known to help epilepsy and other movement disorders. Fingers crossed. I also plan on seeing the neurologist, Dr David Perlmutter as he is relatively close to me in Florida.
Well, I just wanted to share this with you. The Internet can be a positive resource with lots of good information but it also has a lot of misinformation that can be harmful. It can also allow people into your personal space that under other circumstances, you would be cautious around. Please be careful. Everything is energy.
Try not to get too caught up in other people’s drama and in the many theories that have no basis, and be careful of the complementary therapists who are now making a fortune, thanks to withdrawal and the vulnerability/desperation of those in the throes of it. Your body is your expert. Listen to it. For those of you in protracted withdrawal who have been riding the waves for years and years, check your thyroid, check for deficiencies, experiment with ways of eating (e.g. GAPS, paleo, low histamine, etc). And know that you, too, will get better. Your nervous system just needs more time to repair the temporary damage caused by the drug/s. No matter how long you have been waiting, trust that you ARE healing. <3 It doesn't matter if you cold-turkeyed, detoxed, tapered, etc. - you've come this far and you'll make it the rest of the way.
Take a holistic approach to your health - attend to all areas: mind, body and spirit. And see your doctor to rule out other medical conditions. I have seen where in some cases there are concurrent medical issues that need to be addressed and once they are, the person is fine. The receptors have long been up-regulated but other things are happening. Due to the fixation on withdrawal, they are overlooked. No one size fits all. Use your intuition and common sense. Let your own story unfold. Trust what your body is telling you.
The thing about withdrawal is that even the people who think they won’t get better end up healing anyway. It’s just that how you spend your days will determine the kind of experience you have. You may already have to deal with being misunderstood, judged, unsupported and isolated, why beat yourself up with the “what if?” thoughts. It’s normal to have those thoughts… to be scared in withdrawal. It’s normal to freak out, to have melt-downs, etc. How do you cope? You normalize what’s happening. You don’t beat yourself up for being human. And you also, when you can, gently reframe (if your cognition allows you to) and regain perspective. “I am in withdrawal. Tens of thousands of people before have gone through this and they got better. I will, too.”
This is important: If you do become overwhelmed and find yourself contemplating suicide, please reach out to someone (family member, trusted friend, your doctor, helpline) and get the help you need. There is too much to look forward to and you really don't want to miss the gratitude, the wonderful feelings of appreciation for even the simplest things - that "preciousness" of life, and the confidence and near-invincibility that come when withdrawal is all over.
My dear friends, yes… this experience can be cruel and it can go on for much longer than you think you can cope with, but please don’t let this discourage you. You CAN and WILL cope. On the days when you feel that you can’t possibly go on, just breathe… and keep going. That’s all you have to do. You let go… surrender… and wait. You won’t die. You’ll be okay. You think of previous days when you felt the same way and you remind yourself that you made it then. You’ll make it today… and the day after… and the day after that. But for now, today is all that matters.
With thoughts of wellness and gentle hugs,
Quite the opposite of my last rather negative post this is to tell everyone that sudden, dramatic change is possible and could happen for you at any time. One minute we can be sucked into the a labyrinth of despair where escape seems totally impossible while the next we’re thrown out on to peaceful shores where everything is normal and the previous days of burning in hell are gone. This process can only be believed by those of us who experience it for months, even years on end. I feel it’s all completely physical and the only mental input arises from our own personalities and how we deal with the terrible onslaught of symptoms. Hold tight because at any minute everything can adjust and send you into a place of tranquility you may well have thought had gone forever. This is benzo withdrawal and for me it’s got worse before the end with days of intense anxiety and tachycardia. I now believe recovery is on the horizon and my brain is in its final stages of readjustment.
Benzo withdrawal is brain damage. Years of using this drug as prescribed by our doctors can only lead to a state of impairment in the Central Nervous System equivalent to that of having a stroke. The only difference is where the brain damage caused by a stroke goes recognized and receives constant care and therapy and reassurance in order to heal that of benzo withdrawal is not recognized and goes unsupported and even denied. It’s a terrible phenomenon and must be addressed before more innocent victims are sent into its clutches as they accept a benzo for sleep, for anxiety or just to overcome a life event. They believe these drugs, if prescribed by trusted doctors must do them good and overcome their problems. The truth is that in many cases the reverse happens and they are now subjected to years of ill health and anxiety beyond all comparison and may even be given further drugs until they end up in a psychiatric nightmare that’s not of their making. The evidence is out there for all to see but consistently denied by those refusing to accept the blame. This is just my usual rant as I think about the wrong that has been done to us!
Families and friends may offer support but they can only really do this within the realms of their own knowledge. How can we expect them to understand the intensity of symptoms that to them may resemble a panic attack yet, in reality, a panic attack bears little relationship to the tight chains that bind us when a severe wave hits and makes us beg for death. We can’t breath, can only see through blurred eyes, the heart pounds as it races and batters against our ribs and in our ears, joints and muscles stiffen, dizziness makes standing impossible and all we can do is curl into a tight ball and accept it all until it passes. We may be able to pace the house reciting affirmations if we can walk to relieve the adrenaline rush but this still lasts hours or days depending on the intensity of the wave. Sleeping and eating are often impossible during these times. If we’re lucky we may get a slight respite for awhile before it all hits again. It’s this inconsistent nature of a wave that makes benzo withdrawal for me a physical phenomenon. All I can do is wait for everything to go as it does eventually. There are coping techniques which I will discuss another time but for now my Tsunami has gone, suddenly and completely just as it arrived.
This is healing and hopefully the final stages of repair to my brain. Things may get worse before they get better. Call it the ‘last hurrah’ a final attempt to get everything right so we can resume our lives with a phenomenal strength that all this inevitably will leave us with. Not everyone’s withdrawal is the same. Some of us suffer intense vibrations, pain, sickness, feelings of toxicitiy whatever, its all withdrawal and it all goes when the time is right for us. We just have to keep positive and keep facing the demon until we win through because it will happen.
I’m much better for the moment and it seems the bad waves that have been toing and froing over the last few months have brought me to a new state of homeostasis. It’s taken time and its taken much screaming and shouting and protesting to anyone who will listen but underneath it all a new calm has developed and I know this is my recovery.
I apologise to those who may have written to me over this period as I haven’t always been able to answer. I do switch off from it all and the problems of others when in an acute wave myself. I can get very involved and ramp up my own symptoms just by listening to those of my withdrawal friends so my apologies for this. Also I rarely speak by telephone unless to someone who has fully recovered and is supporting me. I don’t have the emotional stamina to do this. At the moment it’s all gone and I’m writing to you as a normal, fully functioning person, wonderful, long may it last.
I'm now writing here less but updating when a topic occurs to me which may help others or when my own withdrawal changes in any way.
It's been a chaotic month of pretty nasty symptoms so I'm adding a warning to please not to read this if you're vulnerable and suffering yourself, however, I think it better to know that it can happen as part of the healing process. That feeling of being almost there, almost recovered then suddenly to find yourself facing another set of horrors that reach a magnitude that may not have been experienced since the acute stage. It's hard to remember all those little tricks to help you through when you thought the nightmare had ended long ago. The truth is the brain is still in a very fragile state and may react to a drug introduced or a new supplement tried or just plain stress from life's events. It still needs time to repair all that Benzo damage.
I've written about not being scared to try a tiny dose of a prescribed drug if your doctor feels it necessary to ease any symptoms. For me it was the rapid heart rate and escalating Blood Pressure. The word stroke was mentioned which sent me into a tail spin. Of course I overreacted because that's what we do in withdrawal even if nearly three years out like me! I agreed to trying a tiny dose of a Beta Blocker to help lower my BP and slow the heart rate. The first ten days were fine....I'd found a miracle cure, I was well, out and about and enjoying life again. Then the rot set in. I became dizzy, lots of hot flushes, my body flowed with pain, my BP was low and I was trapped in severe lethargy. My doctor couldn't believe that such a small dose had this reaction but it did. He described the initial few days of the drug as the honeymoon period, possibly a placebo effect but once into my compromised system the new medicine caused havoc to take over. I spent several days too tired to function and just remained in bed. He stopped the Atenolol I was taking and I was changed back to Propranolol which I've taken before.
On stopping the initial Beta Blocker I had a severe reaction as my body and brain once again readjusted. I had bad headaches and was awake night after night pacing the house or laying in bed shaking. I was nauseous with stomach movement and horrible anxiety. The tachycardia returned and once again I just wanted to die. Dying has never been an option for me so I spent the time lying on my back reciting positive affirmations, listening to calming music and waiting for it all to pass again. Eventually it did but I am now on a ridiculously low dose of the Propranolol to help prevent a surge in my BP and any tachycardia attacks. I don't feel well yet and am crawling through my days but better than when on the Atenolol. I will persevere and wait for things to settle and above all remain positive.
All this requires tremendous courage to keep moving forwards. To go back downhill after believing recovery is imminent is the hardest blow to bear. All those symptoms that we believed have long since gone re-emerge and take over again. The only way is through. Don't let them regain their hold and lead to a negative downward spiral. We are only well when the the body and brain can function normally. For me this is going to take more time.
This relapse at a late stage out, especially when protracted as I am, seems common. More time is needed as well as gentle pacing to ensure this doesn't happen. If it does, from whatever cause, then hold on and remember all that this ferocious process has taught us on how to remain calm in the face of the storm. It will pass again and perhaps lead to final, full recovery.
As anyone who has any experience of benzodiazepine drugs and their withdrawal knows the list of symptoms that can occur even while on the drugs is vast. It would be impossible to catalogue every signal symptom that has been experienced and impossible to compare our symptoms with those of anyone else. Not only this but we describe these bodily sensations in our own terms so that vibrations for some may be buzzing for others and foggy head for some may be derealisation for others and so on. The intensity will also vary from person to person according to their own threshold for pain and ability to withstand their personal box of tricks.
It is just that a box of tricks, a Pandora’s Box that once opened never stops giving until withdrawal finishes and the lid is slammed shut and hopefully locked forever. Nobody can predict what a certain person may experience or how much suffering he or she will be able to endure. It really is an unforgiving process but always remember that at the bottom of it all is a brain that has been temporarily damaged by a prescription drug. That brain has an infinite capacity to heal itself. It just takes time.
The drugs affect every part of our bodies from the tips of the toes to the top of our heads and inside and out. The Central Nervous System plays a part in everything that happens within and without. We just have to hold tight and go with the flow as symptoms wax and wane from one minute to the next. It’s a relentless drama played out on a shaky stage. I’m not making a list of symptoms as there are plenty on benzo sites that do that for me. My main observations are that symptoms can vary throughout the withdrawal process. Just when something appears to be gone it remerges several weeks or months later or new symptoms surface and further cause us to believe that there definitely is something else wrong. I always say if anyone is worried about anything then see a doc and get any necessary tests to put your mind at rest. Not being scared of the many different symptoms stops any worry about them that could further compromise withdrawal.
It really is a matter of keeping strong and as positive as we can be. I’ve written before about not trying to compare to others and searching the internet for answers that don’t exist or trying a supplement that has worked for someone else. It really is a minefield and treading our way carefully through all the traps it sets out is the only answer. Listen to friends especially those that have made it through, know we're individuals with a withdrawal unlike anyone else’s and keep going at a comfortable pace as the body dictates. Of course we're going to get it wrong sometimes and things may take a nosedive but rest assured withdrawal finishes for everyone and all these confusing symptoms will gradually diminish. Look on them as a necessary process of healing and making us well rather than things to be fought off and focussed on as they take our life away. Too much focussing on symptoms can well intensify them.
I still have a few symptoms. A bit of a foggy head now and then, some stiffness and pain in my legs, lethargy and of course the background anxiety. I am however a lot better and beginning to get out and about and take up the remnants of my life. It’s a slow process but it’s very obvious. I’m hoping there won’t be any more major waves and I can now look forward to the new me that I need to get to know!
A comprehensive list of symptoms has been added on my page 'Possible Symptoms'.