Will these symptoms ever go away? (chronic illness and protracted psych drug withdrawal syndrome)

A question asked: (Withdrawing from psychiatric drugs) caused chronic fatigue, muscle pain, burning skin and brain fog. I NEVER had any of these symptoms prior to meds or during meds. I guess the thing I worry about is if your body can truly heal from these symptoms. Can they go away on their own? Can they go away with time?

my answer:

We need to learn to listen to and cooperate with our nervous systems…and heal…in the way that they dictate. This will be different for everyone and therein lies the challenge.

These below articles I link to might help…but to answer your questions, yes, we heal, it takes time and it’s rarely something that happens quickly once we are gravely impacted. I am still healing…I am always getting healthier in ways that actually astonish me…in some ways I’m healthier than I’ve ever been in my life…in others I still have limitations people would consider being “sick”  … calling this situation being “sick” doesn’t really make sense to me anymore because of the ways I’m healthier than ever…I have a sort of mental clarity that is priceless. …even while continuing to have physical issues (mostly in the fall and winter — not as much in spring and summer) Still even these issues continue to diminish, clearly, if also, still, slowly.

Dietary healing has also been critically important for me…again, everyone is individual in their needs so I don’t get too specific really…these are some articles about my trip with it: Healing with Whole Foods  — there are additional links with more info in some of those posts…also look at the top of the site at the drop down menus in the chronic illness section…

we need to learn how to live well…frankly none of us know how to live like the part of nature that we are and it’s why we end up here in the first place…getting healthy means learning how to be a successful human ANIMAL…society doesn’t support that. We need to find it. Anyway…that’s what works for me…again, we are all different and what is resonant and works for you will be somewhat to very different. Trust the pull of your heart…it will take you where you need to be to heal. We do need to learn to cooperate with our individual healing process however…that’s true for everyone.

More on learning to cope and heal:

See also this old post from early on when I was really in the thick of it: Tool box for coping with psychiatric drug withdrawal syndromes (and some chronic pain and/or illness too) 

It really does get better: It Gets Better: the series – this collection highlights just how bad it was and how much healing can happen.

It’s become clear to me that whenever it’s possible that it’s helpful for folks who’ve not begun withdrawal and have the time to consider a carefully thought out plan to attempt to bring greater well-being to your body before starting the withdrawal. That means learning how to profoundly nourish your body/mind and spirit prior to beginning a withdrawal. For suggestions on how to go about doing that check the drop-down menus on this blog for ideas. Anything that helps you learn how to live well can be part of your plan. That plan will look different for everyone as we learn to follow our hearts and find our own unique paths in the world. Things to begin considering are diet, exercise and movement, meditation/contemplation etc. Paying attention to all these things as you do them helps too. The body will start letting us know what it needs as we learn to pay attention.

*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care.  Really all doctors should always be willing to do this as we are all individuals and need to be treated as such. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

For a multitude of ideas about how to create a life filled with safe alternatives to psychiatric drugs visit the drop-down menus at the top of this page. 

Support Beyond Meds. Enter Amazon via a link from this blog and do the shopping you’d be doing anyway. No need to purchase the book the link takes you to or make a donation with PayPal. Thank you!

The aftermath: polypharmacology — protracted psychiatric drug withdrawal syndrome

This was first published on David Healy’s site, RxIsk: Making Medicine’s Safer for All of Us, about 4 years ago. I’ve never published it on this site and thought I’d do so now so that it will be part of the archives here as well. It’s a memoir of sorts up to that point 4 years ago.

The aftermath of polypsychopharmacology: protracted psychiatric drug withdrawal syndrome

I recently contacted the doctor who is responsible for my iatrogenesis — the doctor who grossly over-medicated me and made me ill. I’ve been corresponding with him for several years now, but this was the first telephone conversation I’ve had with him since telling him what his drug cocktail did to me. He rarely says much in response to my emails where I link to the articles I’ve written casting large shadows on the “treatment” he gave me. So I called him and left a voicemail that I might talk to him.

When he returned my call a few days later, we talked for perhaps a half hour. I always liked this man when I was his patient and now that I’ve worked through most of the rage of having been harmed by his treatment, I still like him. His intentions were good. I’m clear on that. I do not think this relieves him of responsibility, but it does relieve me from hating him which simply isn’t good for my soul. Still, I simultaneously appreciate Dr. David Healy’s insight about patients succumbing to Stolkholm Syndrome and have made the same observation about myself. I contain multitudes. There is nothing easy about emotionally processing what happened to me and what continues to happen to so many others.

So my conversation with the man who practiced wild, untested poly-pharma on me was actually quite civil and I felt it was productive too. He listened and shared his view too. He did not always agree, but he was clearly listening.

I want to share a bit of the conversation. He has a hard time believing that what happened to me is routine, that it happens to many patients. He grants me my experience, though, like a good shrink. He believes me when I tell him both that my mind is clear now and that I’ve been gravely harmed by the drugs. I’m not sure he thinks he’s responsible, but he doesn’t challenge my experience. The phrase cognitive dissonance comes to mind. How do they do this? I don’t claim to understand.

So he said something suggesting what happened to me isn’t the norm. That he sees medications working wonders all the time. I challenged him like this, “Dr. M, when you were treating me you thought I was one of your successes, right?” He said, “Yes.” And I responded with, “Well, you were wrong. My life was miserable. I lived in a drugged haze. I slept and worked because that is all I had time to do. I had no passion for what I did and I just lived by going through the motions, flat and empty. My life was hell. I liked you and you needed to believe that I was okay…I tried to please you like a “good patient.” Still if you’d paid attention you know that I was always asking to be put on disability. That’s because it was insane for me to work 8 hours a day when I required 12 hours of sleep because of the heavy sedation. It was also dangerous for me to drive on that pharmaceutical cocktail yet I needed to drive to keep my job. If you had really paid attention you would have known my life was miserable. And I promise you, you have other patients just like me.”

I’m sharing that vignette as an opening because I think most doctors hear stories like mine and think that they are not the ones perpetrating such injury. My doctor is a very well-reputed psychiatrist in the Bay Area, CA. He’s well-known and well-regarded. He is a typical psychiatrist and typical psychiatrists are causing grave harm every day all over this country and throughout a good part of the world. He still seems to believe that I’m an anomaly and that somehow I’m not his problem. Yes, cognitive dissonance.

So I was on a six drug combination including every class of psychiatric drug at high doses that required over six years of withdrawal. I was left severely ill, afflicted by a severe iatrogenic illness: “Withdrawal syndrome” for lack of a better name. The name makes it sound like something that might last days or weeks but it’s crippled my life for years. Those of us who become this sick (I’ve networked with thousands of folks in withdrawal now) are subject to dangerous care and outright denial of our experience by medical doctors and the medical establishment in general.

What possesses a doctor to prescribe such a cocktail? I don’t think I’ll ever know, but I can tell you how it happened.

The drugs never did “work” and in retrospect they made me much worse… in fact they caused the chronic illness I am now living with. It became clear to me when I was unable to continue working about fifteen years into the (heavy) drugging as my mind and body simply stopped cooperating under a fog of neurotoxic chemicals. I knew I had to try to free myself from them.

So, how did it all begin? After an illicit drug-induced mania I triggered in college, psychiatry got a hold of me. I was told that I was bipolar and would be sick for the rest of my life. One doctor, in fact, told me I would die if I did not take medication for the rest of my life. Having suffered repeated traumas in my life the additional trauma I was subjected to in the psychiatric ward took its toll. I gave in to what they told me, they scared me good including threats to send me to a state hospital for permanent residence. It’s clear to me now this was used only to terrorize me into submitting to drug treatment, it was not a threat that would have been carried out, but I did not know that then.

The truth, however, is that I had a history of trauma that needed tending to, not any sort of brain disease as mental illness is popularly understood. The years of heavy drugging, in the end, is the only thing that made me truly sick. That is, psychiatric and physical symptoms caused by the drugs I was being given for “treatment.” My original diagnosis, bipolar disorder, given as a life sentence never really had much credibility. The tragedy is that during all those years of being drugged during the prime of my life I felt purposeless, flat, barely alive and sexless. I went from being a fit and toned athlete to being 100 lbs over-weight and unable to exercise much at all due to the sedation and nausea.  I went through the motions of living while in a fog.

Now, drug-free, I’m quite often too ill to leave my home but my mind is crystal clear. I am motivated and productive, the author and editor of a popular mental health blog that offers alternatives to psychiatry. Having been both a professional in the mental health system and a victim of the same system, I have some interesting and uncomfortable insights into the standard of care. I’m passionate about my work. I have more of a life than I ever had on drugs even while able-bodied and even though now my life is painfully limited in ways it’s hard to convey to those who’ve never experienced such illness and isolation.

In retrospect I see now how one drug led to the next. The “mood-stabilizers” which left me depressed led to the antidepressants which left me with insomnia and agitation which led to the benzos for sleep. They still didn’t get rid of the agitation which led me to the antipsychotics (which made everything worse and in fact my doc kept adding Risperdal milligram by milligram until I was on 11 mg for my akathesia which I now know is CAUSED by the Risperdal—he was treating a symptom with the very drug that was causing the symptom!! My akathisia ceased when I finally got off the Risperdal. We always called it “anxiety”, but it was akathisia.

That big cocktail of drugs left me sedated and lethargic. No surprise. The next step was stimulants. Addiction and dependence to benzos also leads one to needing more and more drug to get the same “therapeutic effect.” And so my dose continued to increase. Unfortunately I’ve learned this happens to way too many people, some of whom never even realize it. Drugs leading to more drugs leading to more drugs. And once in the trap it’s almost impossible to see clearly. To realize what is going on is difficult and perhaps sometimes impossible.

I’ve been free of this massive cocktail of drugs for over two and half years now. The sad part is the greatest amount of suffering I’ve ever endured in my life has been a result of my body adjusting to no longer having neurotoxic drugs in my system. Medically-caused harm and a term that often sounds Orwellian to those of us who experience the protracted version: withdrawal syndrome. It totally fails to capture the grave disability some of us experience.

Still, I have not one moment of regret for having freed myself from these drugs because my mind is clear! I have a clarity of mind that is so beautiful I can cry if I spend time thinking about it. My clarity was stolen from me for almost half my life. I have it back and even impaired as I am, unable to leave the house most of the time, I am grateful.

I once made a list of the myriad insults my body and mind endured. It included over 50, mostly disabling symptoms. What is most astonishing is that I am exponentially better now and don’t experience the bulk of these symptoms anymore, but I’m still very very sick. This, again, is something very few people can conceive of. It’s mind-boggling to me as well and I’ve experienced it.

The fact is our bodies and minds are intrinsically driven to seek wellness and mine is no exception. I am on a path towards wholeness. I don’t imagine it will stop now. There is no going back.

Update: I’ve gotten much better since the writing of this post. My most recent anniversary video explains how I made it through the darkest times:

 

See also:

the “It Gets Better” Series if you’re sick and in the midst of psychiatric drug withdrawal it’s often helpful to know that others have made it through similar difficult times.

And The anniversary posts: the 5 years off psychiatric drugs documented

*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care.  Really all doctors should always be willing to do this as we are all individuals and need to be treated as such. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

For a multitude of ideas about how to create a life filled with safe alternatives to psychiatric drugs visit the drop-down menus at the top of this page. 

Support Beyond Meds. Enter Amazon via a link from this blog and do the shopping you’d be doing anyway. No need to purchase the book the link takes you to or make a donation with PayPal. Thank you!

Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

This is a copy of the original post that’s located in the drop-down menus at the top of this page.

This page is regularly updated. Below the initial commentary is a collection of links with lots of information to better inform the reader on psychiatric drug withdrawal. Educating oneself and preparing for a safer taper goes a long way in mitigating the risk of serious protracted withdrawal issues.

*feel free to share via social media. You are also free to copy and paste and republish as widely as you’d like. 

Not everyone is subject protracted or even significant withdrawal issues. That said everyone needs to be aware of the risk so that every reasonable precaution can be made to avoid potentially serious issues. In the interest of informed consent we need to know what the risks are. Many psychiatrists are not telling people about these risks. What is worse is that psychiatrists don’t even understand the risks or recognize what they’re actually witnessing when they start happening. This level of ignorance is a criminal reality at the moment.

See: the “It Gets Better” Series if you’re sick and in the midst of psychiatric drug withdrawal

In the course of my work with those coming off psych meds I’ve learned that there are few people, even among critics of psychiatry that have a clue at the potential severity of psychiatric drug withdrawal syndromes. That also means there are virtually no professionals that can offer meaningful support when people encounter serious issues. We remain dependent on each other.

Other than those who’ve directly experienced protracted withdrawal or those who have lived with those who have experienced it, it simply remains under appreciated and therefore under treated and under recognized even, as I said, among critics of psychiatry. It’s rather horrifying for those of us who find ourselves struck by such illness. While perhaps a minority, we are not an insignificant minority. I alone have had contact with 1000s of us.

The other thing to consider is that we are perhaps not even a minority because the fact is so many issues with withdrawal are not recognized at all and are instead considered and then treated as the “underlying illness,” many folks simply get sicker and sicker on meds and never even know why they’re ill. Those people never come to understand that all the multiple trials of drugs and the numerous times of coming off and on them has actually been the cause of their illness.

I’m putting together a collection of withdrawal links for the navigation menu since the drop-down menu has become rather long. I will post it as a new post and then it will be accessible permanently from the top of the blog.

Generally, prolonged withdrawal syndrome is not recognized by medicine. You will find very few doctors to diagnose it and still fewer to treat it. This is a collection of links that might help you educate yourself so that you can find more appropriate care when the time comes as well as hopefully avoiding falling ill at all. I found that being well-educated and finding doctors who respected how much effort I put into educating myself helped me. It must be said, though, that it is also a curse because for every doctor who appreciates a knowledgable patient there are likely 15 or 20 or maybe even more who feel threatened by that same patient. Still, it is a plus to know what we are doing.

I will update this page as appropriate and as I remember about older posts from the archives.

For general information on withdrawing from psychiatric drugs see here: Withdrawal 101

 For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal 

See also: Peer support? This is the real thing. Free of institutionalization. (psych drug withdrawal)

This post and it’s content really only scratches the surface of the issues we face. Still it’s a good place to start.

More:

See: the “It Gets Better” Series if you’re sick and in the midst of psychiatric drug withdrawal

Share all of this information with the doctors in your life:  A plea to prescribing physicians and psychiatrists: please help us heal

MORE  RESOURCES: a list curated by Laura Delano:  Psychiatric Drug Withdrawal Resources

See here for the Freedom Center and Icarus manual:  Harm Reduction Guide To Coming Off Psychiatric Drugs & Withdrawal (newly revised edition)

For general information on withdrawing from psychiatric drugs see here: Withdrawal 101

 For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal

I also have a page that is a collection of my own withdrawal documented.  It has a lot of posts that talk about what I learned on the withdrawal boards while I try to recover from my own protracted withdrawal and so a lot of it has value to others in withdrawal: Monica/Gianna: withdrawal documented

Recently the concise story of my withdrawal and subsequent disabling iatrogenic illness was published on David Healy’s site, RxIsk: Monica’s story: the aftermath of polypsychopharmacology 

More recently I detailed my history on Mad in America’s website: Everything Matters: a Memoir From Before, During and After Psychiatric Drugs

And for ways to support your recovery you can visit the Healing Arts and the Nutrition sections at the top of the page. There are drop down menus available with lots of options.

If you’ve found yourself very ill from this process I also have a section at the top of the page to support those with Chronic Illness. Check that drop-down menu too or click here.

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*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. 

For a multitude of ideas about how to create safe alternatives to psychiatric drugs visit the drop-down menus at the top of this page. 

Support Beyond Meds. Enter Amazon via a link from this blog and do the shopping you’d be doing anyway. No need to purchase the book the link takes you to or make a donation with PayPal. Thank you!

Healing is a shocking process: protracted psych drug withdrawal syndrome (iatrogenic brain injury)

Update: September 2016 — I felt like revisiting this post from a while back. As I re-enter my body the shock continues. The good part is I am finally able to feel and deeply process that shock. It’s taken over 6 years of being drug free to get to this point, but I am here. Entering the body in a big way. Being reborn, quite literally. (re-entering the body is part of healing from the extreme trauma that is the nervous system/brain injury from psychiatric drug iatrogenesis) I am grateful for everything now as I become more and more aware of what is happening. I’ve healed a great deal more since the writing of this post. I share it for those who are in various stages of this healing process. 

(basically the fight or flight response that has been in high gear for over a decade is remitting. I’m left with this body, shocked) it’s somehow as beautiful as it is difficult)

Healing from this particular form of iatrogenic injury is a shocking process. It is shocking by nature of the fact that one of the hallmarks of this brain injury is a deep and profound neurological terror. This terror, held in the autonomic nervous system, manifests in a myriad number of forms from individual to individual. Even within the individual it most often shows up in numerous ways — possibly and often impacting every system of the body. (see: Protracted psych drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia: it’s autonomic nervous system dysfunction)

And so this fear creates defenses in all of the systems of the body too. On a psychological level we are defended in ways typical of complex post traumatic stress, for example. For many the drugs simply further ingrain the neuropathways that were created from previous traumas in our lives. The drugs, indeed, make our initial issues worse in this way. See: Psychiatric Drugs as Agents of Trauma and (more posts on trauma here)

We are also impacted by hypersensitivities to foods, drugs and chemicals. Our bodies are “defending” us from foods that should in fact be good for us. This results in our not being able to take in the very nutrients we need for good health. These end up acting like true allergies in many people, manifesting hives and even anaphylactic shock sometimes. They are not imaginary. They are real biological realities.  (more on food and sensitivities here)

The immune system is impacted and so auto-immunity appears in many of us. This is the immune system attacking our own body. Again, the defenses out of control. We are in a constant state of DEFENSE.

This is only a small partial list. The list could go on and on as many of us know.

So, when we actually start to heal from this nightmare we have found ourselves in it is shocking. Our system screams NO to that which can heal us because that is the very nature of the injury. We must slowly allow our defenses to come down. We must watch this process and as we see what is happening a slow process of  thawing out and then relaxation starts to occur. As we pay attention and allow what is happening to us to happen to us (because it is happening, so we might as well learn from it) we start to develop insights that help us take actions that do indeed help us heal. The healing process is truly a mystery and looks different for every one. No healing journey is repeated twice. Some will see themselves in this description and others will not because this description cannot embrace the perceptions of every healing journey. (see: What does it mean to heal?)

To be clear, all of this is deep within our bodies. We are deeply impacted biologically and physiologically and yet it is our capacity to observe that, in the end, helps us to heal most profoundly and so, this is truly an opportunity to learn about the intimate co-involvement of the body/mind/spirit.

For me healing involves all aspects of holistic wellbeing. Everything matters and so I live as though it does.  My life has transformed and continues to transform in beautiful ways as a result.

More on psych drugs and iatrogenic brain injury here

This post has now been published at Mad in America too. It’s possible to leave comments there.

More info:

*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

Support Beyond Meds. Enter Amazon via a link from this blog and do the shopping you’d be doing anyway. No need to purchase the book the link takes you to. THANK YOU or make a donation with PayPal

Befriending fear

I’m reposting this video and teaching with Jack Kornfield and Catherine Ingram.

This video is in keeping with my practice of being with all that arises within. Fear here can be translated to “anxiety,” which is the clinical term for fear which everyone at one time or another experiences with or without a diagnosis of some sort of anxiety “disorder.” Psychiatry pathologizes much of the normal human experience and fear and/or anxiety often referred to in Buddhism as such. Normal. There are techniques to learn how to be with these normal feelings, whether they’re very intense or not.

Catherine refers quite explicitly about those of us with traumatic histories that might include abuse etc. This way of being with ourselves can help heal most anyone.

And boy does protracted psych drug withdrawal open the floodgates of fear and terror and trauma, like nothing else. It’s not like anything natural that occurs before drug damage as those of us gravely impacted discover. But even with this sort of iatrogenic damage I’ve found that the best solution is to treat it like all the rest. I’ve decided that in the end, it’s the same thing as though on steroids.  For more info see: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

We must start with wee baby steps when the iatrogenic drug damage is at its worse. Be kind and gentle with yourselves. This is how I got started:  Life as a meditation: my contemplative adventure

The video footage is awful — the soundtrack isn’t in synch with the speakers. I suggest listening without watching. That allowed me to be with the message more effectively.

___

For a great article on embracing all that arises within your psyche revisit Jayme’s healing practice that she entitled, “How I deal with mental breakdowns”,  one of my all time favorite posts on this blog.

More exploration of fear and anxiety on Beyond Meds: Fear and anxiety: coping, reframing, transforming… 

Other posts that feature Jack Kornfield’s work on Beyond Meds:

Books by Jack Kornfield:

For a multitude of ideas about how to create a life filled with safe alternatives to psychiatric drugs visit the drop-down menus at the top of this page. 

Support Beyond Meds. Enter Amazon via a link from this blog and do the shopping you’d be doing anyway. No need to purchase the book the link takes you to or make a donation with PayPal. Thank you!

 

Link found between brain, immune system: significant for those with protracted psych drug withdrawal issues

This link is important to know about for many chronic conditions.

I have lived experience of this reality. I know it.

Immune system and nervous system are totally linked…I can feel it.

Folks in the chronic illness circles are all saying the same thing as well…we feel it…and those of us with protracted psychiatric drug withdrawal issues are also impacted…This is not news to us. Still, it’s important information for the scientific and medical communities.

From University of Virginia Medical School. A press release:

In a stunning discovery that overturns decades of textbook teaching, researchers at the School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. That such vessels could have escaped detection when the lymphatic system has been so thoroughly mapped throughout the body is surprising on its own, but the true significance of the discovery lies in the effects it could have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.  (read more)

Those of us with protracted withdrawal issues quite often have the sorts of neurological issues that this research is talking about.

The two pieces below also speak to some of these issues though I don’t make all the connections explicitly. I share this sort of information for those who can do make the connections for themselves and then do further research.

More on Psychiatric Drug Withdrawal and Chronic Illness on Beyond Meds.

Hope for those still in the darkness of protracted psych drug withdrawal or other chronic illness

dark nightthis is a repost from a year ago with some edits

A long time friend/reader who is still in the worst ugly phase of protracted withdrawal sent me a note the other day. In it he was talking about how he could not come to terms with everything he’d lost. He cannot stop grieving. He feels cheated. He had been an athlete and competent parent and a successful professional in his field. He was prescribed a benzodiazepine for a first time incident with acute anxiety (had no history of prior psychiatric issues or treatment). He took said benzo for only 2 months and he was one of the not unheard of number of folks who react as if they’ve been on meds for decades, like me, when he discontinued it. He’s been ill for 5 years now and is unable to work, parent in a meaningful way or exercise. I understand his sense of loss. It is nothing short of completely devastating. I still struggle with not being able to do many things people generally take for granted as well. I still am learning what I shared with him.

I thought I would share part of my response here for others who still find themselves in this dark quagmire.

Ah…it’s the grieving and the inability to accept what has happened that is most likely hurting you most at this point. But, that does eventually give…hang with it…feel it. It’s okay to have all that ugly shit and just stew in it as long as you need to because eventually we do have to come to terms with the fact that this is it…this is our life. And while we can’t control much of what is happening to us we can in time come to have a different attitude about it. That, though, happens in its own time and it’s no good to blame yourself or try to make it happen any faster. Knowing it will give though…can help it ease…just think about the fact that it can and will give. I’m sure you’ve had moments of that already…tiny glimmers maybe…but remember those…they will help transform the experience.

I still go into high resistance places and I hurt more when I’m there. I’ve been sick close to a decade…and I’m not as bad as I was…but I’m sure as hell am still gravely disabled. I do trust that LIFE works in me…and if I let it life will continue to reveal it’s wonder…and that is my source of comfort…

I have a friend who studies the neurology of awakening to the nature of reality and consciousness. He often has said to me that the brain remembers the good stuff. This is another way of thinking of neuroplasticity. If we get to a place where we accept and are okay with things just as they are, our brain likes that…it remembers and does all it can to get back there. In this way we can trust that if we do things to help us accept and find goodness in life, even now, in the darkness, our brain will, in effect continue to conspire to get to those glimmers of hope and joy we sometimes see and feel.

I have learned that even in the midst of great suffering I can find joy. In the darkest corners now I see how life is good. I am profoundly grateful for my neuroplastic brain which will help me continue on this path.

More related from Beyond Meds:

For my recovery story so far see: Everything Matters: a Memoir From Before, During and After Psychiatric Drugs  and Believe and Know . . . (as it pertains to psych drug withdrawal syndrome or serious illness) and There is Big Medicine in Everyone

This is how I became ill by psychiatric treatment:  The aftermath of polypsychopharmacology: my story on Dr. David Healy’s site –this is the most complete short synopsis of having been grossly over-drugged and my path to drug freedom.

See also: Limbic Kindling — hardwiring the brain for hypersensitivity

For those of you who are facing protracted withdrawal issues or other chronic illness:  Information and inspiration for the chronically ill

For a post on our amazing plastic brains that can heal and be made well again, see: Neuroplasticity: enormous implications for anyone who has been labeled with a psychiatric illness

And for information on safer withdrawal methods and care once in withdrawal see: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

Please do not attempt to discontinue psych drugs without first very carefully educating yourself on the risks involved so that you might minimize the chances of developing grave iatrogenic illness if you decide to withdraw: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

this is a repost from a year ago with some edits

We not only get ill, we also get well

We not only get ill, we also get well. — Deena Metzger, from her interview on Sounds True

deenaI’ve been inspired by Deena Metzger for many years now. I have often returned to some of her words that I’ve shared on this blog as I’ve gone through my process of listening to my illness so that I might grow and heal with it, rather than fight it. In the interview with Tami Simon from Sounds True she goes deep into what this means for her and it’s deeply resonant with my own experience.

The words I’ve shared so many times on this blog and with others I am networked with are these:

A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way, and aligns us with a life path that is, ultimately, of benefit to ourselves and those around us. – Deena Metzger

Among other things Deena speaks to the issue of iatrogenic illness. Medically induced injury, in other words. The issue that I and so many who read this blog face in a giant way through protracted withdrawal syndrome, a sometimes gravely disabling illness caused by the use and withdrawal of psychiatric drugs. 

Tami Simon, says of Deena at Sounds True:

Deena Metzger—author, poet, teacher, and the creator of the classic Sounds True audio title This Body, My Life—has an in-depth conversation with Tami Simon. Tami and Deena discuss her work with the ReVisioning Medicine organization and the necessity of listening to the story that chronic illness is trying to tell you about your body. They also talk about creating a “literature of restoration,” intended to promote values other than those pushed by materialistic society and to focus on what is truly life-giving. Finally, Deena expounds on the idea of the coming “Fifth World” and the steps necessary to create it. (62 minutes)

Listen here to the interview:

Something Deena also points out is the similarity with so many chronic illnesses today. An observation I too have made:  Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common. 

Recently I shared a thought as a status update on Facebook which is in keeping with these teachings from Deena:

Major shift…I no longer attach to the chaos in my body…I truly have a sense of it all moving through…this is big…

In learning to not attach to the symptoms and to instead cooperate with them, really, the pain and the chaos that the iatrogenic injury has incurred talks to me as I deeply listen and as I do that the story of my body/mind and spirit unfolds in a way that is bringing healing to me more and more everyday. In a world where, as I so often say, everything matters, spirit too comes through to us in our illness if we can learn to listen. It can be a valuable teacher. See also: A Memoir From Before, During and After Psychiatric Drugs  and Internal Guidance.

See also a post from a couple of days ago: Musings on healing and well-being

Please do not attempt to discontinue psychiatric drugs without first very carefully educating yourself on the risks involved so that you might minimize the chances of developing grave iatrogenic illness if you decide to withdraw: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

Silencing psychiatric survivors: let us count the ways

Someone in a linked in group responded to this post on the nature of protracted withdrawal syndrome with what I call an “aggressive positivity” comment. They suggested those harmed by drugs are doing no one a favor by telling the truth. They are in fact being “negative” and should instead concentrate on healing.

I responded with these comments which have been slightly edited:

If people don’t understand the grave risks involved they don’t come off psych drugs carefully. we can pretend people don’t get sick, but the fact is the disability can be so serious to not talk about it is plain irresponsible. My work covers neuroplasticity and our body’s wondrous capacity to heal as well, but first we need to try to avoid making people so gravely ill!!

A couple of weeks of illness is nothing…I know folks who end up bedridden for months and in some cases years. This is not something to give short shrift.

Once it’s understood what the risks are safer protocols will be shared…right now most doctors are criminally harming folks and they don’t even know it.

And perhaps you might want to think what it’s like to be told that people who’ve been gravely harmed shouldn’t talk about it…that is exactly the sort of thing that keeps these egregious injuries in the dark and doctors continuing to harm…not to mention retraumatizing the injured party.

A psychiatrist chose to leave comment at this point. He too seemed to want to silence me. He instead said that he’d never had any trouble weaning anyone off psych meds and that we must see different people. He later, also, denied that neuroleptics have killed far more people than Vioxx (which has been removed from the market) ever did and when I offered him documentation proving it he had nothing to say. The abject refusal to acknowledge the well-documented harm these drugs cause is simply mind-boggling and frankly, criminal.  I responded to him with these comments:

Most MDs don’t know what they’re seeing when they encounter severe withdrawal issues…most of those harmed in the withdrawal process have to leave the system and get care outside of it because the denial is so widespread and dangerous…most psychiatrists think withdrawal issues are the resurfacing of the “underlying” illness…that means that psychiatrists try to further medicate and thus further harm folks…anyway, these are the people I see…those harmed by psychiatry and those whom psychiatry denies having harmed.

And there are some psychiatrists who realize this is going on…they’re just not in the majority and it’s hard to find those folks when 1000s are coming off meds…so patients just help each other out instead. (some researchers have figured out that there is a treasure trove of data in these peer support groups: Alarming report on persistent side effects of antidepressant drugs published online)

Also, I’ve worked side by side psychiatrists in the system and I’ve worked outside the system as I do now…people are not aware of much other than that which is in front of their faces…unless they’re willing to learn about what happens to all the people who leave their standard of care, never to return. The people I work with are invisible to those in the system.  I might add it can go both ways…from either side people find what is right for them on the other side…we need to remain open and trust individuals to find the care they need and not deny anyone their experience.

So, yeah. The fact is those who are still in the system can conveniently believe that those of us harmed don’t exist because those of us who figure it out LEAVE the system. We STOP getting care in the system. We cease to be part of the picture, the data, the statistics and this fact allows those in the system to conveniently deny we exist. Those remaining in the system, even if also victims, are often (no, not always) not aware of how much they’ve been harmed and so continue to support the status quo.

So from Beyond Med’s psych drug withdrawal page, as a reminder:

In the course of my work with those coming off psych meds I’ve learned that there are few people, even among critics of psychiatry that have a clue at the potential severity of psychiatric drug withdrawal syndromes. That also means there are virtually no professionals that can offer meaningful support when people encounter serious issues. We remain dependent on each other.

Other than those who’ve directly experienced protracted withdrawal or those who have lived with those who have experienced it, it simply remains under appreciated and therefore under treated and under recognized even, as I said, among critics of psychiatry. It’s rather horrifying for those of us who find ourselves struck by such illness. While perhaps a minority, we are not an insignificant minority. I alone have had contact with 1000s of us.

The other thing to consider is that we are perhaps not even a minority because the fact is so many issues with withdrawal are not recognized at all and are instead considered and then treated as the “underlying illness,” many folks simply get sicker and sicker on meds and never even know why they’re ill. Those people never come to understand that all the multiple trials of drugs and the numerous times of coming off and on them has actually been the cause of their illness.

I’m putting together a collection of withdrawal links for the navigation menu since the drop-down menu has become rather long. I will post it as a new post and then it will be accessible permanently from the top of the blog. (read more)

Please do not attempt to discontinue psych drugs without first very carefully educating yourself on the risks involved so that you might minimize the chances of developing grave iatrogenic illness if you decide to withdraw. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

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