January 2023

Waves and Windows is a journal of my experiences with what is now known as BIND: Benzodiazepine-Induced Neurological Dysfunction.

Precisely, this is iatrogenic injury – injury caused by medical doctors or treatment. In this case, I’ve been sustaining this injury and its catastrophic effects repeatedly all my adult life – over 50 years.

BIND is a constellation of neurological symptoms that are the consequence of neuroadaptation and neurotoxicity to benzodiazepine drugs taken as prescribed. These symptoms may begin while taking or tapering benzodiazepines, and can persist for weeks, months, or even many years after discontinuation. The central nervous system damage can involve a multitude of functions of the body.

As of January 2023 I’ve been off Valium for 2+months. After many years of sporadic use at low doses for sleep, in 2021 my health took a steep downturn again especially with not being able to eat, a recurring pattern I have struggled with most of my adult life. This time, the knee-jerk suspicion of anorexia by those who only saw a simplistic appearance of the condition, was correctly ruled out by all the medical professionals I worked with. After psych evaluations up to my eyeballs and being rejected by eating disorders clinics over the years, not meeting the criteria for AN except for the weight loss, the more accurate label of “failure to thrive” went on the record, but still useless, with no treatment.

By September 2022 I had discovered the benzo connection, which is the subject of this site. By October of that year, I found support for tapering off the drug slowly and safely – not the way it’s usually done quickly due to doctors being uninformed of the research. I’ll be talking about my ensuing journey of recovery here. Not the whole story, which is very long and complex, but some highlights of the struggle with benzos and important discoveries. This post is just an overview.

The idea for the website began as I had statements to be made, to articulate for myself and for friends, helpers and healers who wanted to understand what I had recently discovered. It’s about my decades-long protracted illness that none of the many dozens of medical professionals I consulted over the years have ever been able to properly understand. Despite certain identifiable issues, things just didn’t add up to the extreme debility and distress I was chronically experiencing.

I developed severe gastroparesis, couldn’t eat enough to sustain myself, was on intravenous tube feeding at home for 10 years, had profound chronic fatigue so that I was mostly home bound for 3 decades, and often suffered with nightmarish nervous system overstimulation and inability to sleep or even rest, that often felt like some medieval torture. During the fall and winter of 2021-22, I experienced what felt like acute torture to varying degrees for weeks and months on end.

Friends, caretakers, visitors who could be with me as I was, came to sit with me through the agony. Most of the time I was alone, trying to allow the experience to wash over me, trying, and letting go of trying. Doctors prescribed benzos to give me some respite, not knowing that the drugs themselves that gave me some sleep in the short run were actually causing this agony. I suspected as such, but didn’t know for sure to what extent, and had no other option, no support for understanding what was really going on and getting off the drugs in the proper way, safely.

I always had my intuitive understanding of what my body was experiencing, but that understanding was still very patchy and unsatisfying. Some essential understanding was always missing, and the explanations that had been used to fill in the empty spaces had caused me great suffering in many ways.

I had always suspected that my use of prescribed benzodiazepines, usually even much much less than prescribed, sporadically over the decades since 1972, played a part in my lifelong chronic illness. But I had little understanding of exactly how that was happening, or the degree of connection between the drug effects and my many mysterious, serious, and intense symptoms.

I had no idea that the “meds” that were given to me in 1972, originally as “muscle relaxers” for my neck/shoulder pain from practicing the piano (as a piano performance major in college), could have begun the downward spiral of my health that continued for 50 years. Afterward, a year-long trial of all the other psych drugs on the market, trying to fix the symptoms that the benzos had caused, was the last straw of the devastation. I was still only 22.

For decades afterward, I had no idea that that early experience could have damaged my central nervous system in such a way that I had more and more intense withdrawal symptoms every time that I took benzos again in later years.

A consultation in summer of 2022 with a functional medicine neurologist who I had been working with brought this all to light. My incessant and excruciating physical jitters felt internally and insomnia was the subject of the consult, and I listed all the things I thought played a part, the benzos being one of them. This very astute doctor, instead of minimizing the drug effects as all the others always did, highlighted it.

It was a lightbulb moment for me. This bugaboo had been there for a very long time, but I never really researched it thoroughly. So now I did. And wow, the dots that never quite connected before all began to connect up and reveal the picture that I had been missing all these years.

I learned about BIND and PROTRACTED WITHDRAWAL from benzos, which has been described as worse than heroin withdrawal and can last many months.

I learned that the intense inner jitters, restlessness and compulsion to move that can be akin to sleep deprivation torture is a drug effect known as AKATHISIA.

l learned that the convulsive muscle contractions that came on in surges of deep, agonizing nerve pain sometimes every few minutes for 8-10 hours, was drug-induced DYSTONIA.

I learned that the involuntary twitching and jerking movements were drug-induced TARDIVE DYSKINESIA.

Benzos are psych drugs, even though they were prescribed to me initially for muscle pain and then most of my life for sleep. I learned that psych drugs can cause these horrific symptoms which could finally be understood. I learned that all the natural remedies which I preferred to use weren’t helping because the drugs had hijacked my nervous system, even when I hadn’t taken them for years at a time.

I had plenty of coping skills by now, but during the darkest times all I could do was to be present in the eternity of the moment, with nothing able to provide a moment of relief or sense of comfort. Sometimes I was able to draw on the multitude of mind/body/spirit practices I used and taught for years. To do what needed to be done, while plunged into the inner work as if confined to a meditation cave for months, there laying bare the excruciating fear of this unremitting suffering.

The only response seemed to be to come to allow for everything in my experience, even what I absolutely could not abide. That’s the magic of walking through walls, when you step into intimacy with that ultimate wall of “unbearable.” The wall that was never imperative to face before, and now there’s nowhere left to turn, no simple distractions to delay that meeting with all that you resisted before.

This is a small glimpse of what I experienced, some symptoms for more than a year, some have abated to some degree, and many are ongoing.

My feet felt like they were on fire. My legs went numb every time I stood up. My teeth are all crumbling and I couldn’t get to a dentist. My heart is often banging in my chest up to my throat and skipping beats. I’m up many nights itching all over for hours.

I could barely get any food down. It was too painful to be touched or even to bathe. I could get up to walk 6 steps to the bathroom, and that was it. I was short of breath to stand up.

The surges of inner nerve pain dystonia were indescribably brutal, beyond any agony I had ever endured before. (That went on for several months after my palliative care doctor urged me to take Ativan).

I couldn’t sleep or rest, feeling like I kept drinking strong coffee day and night. I can only lie in one position propped up on my back. My butt was in constant pain, and I couldn’t get off it. I’m desperate for rest and usually can get no rest nor distraction.

For months my nervous system was so sensitive that I couldn’t read, write, converse with people or even listen to music. Alone most of the time in the small room with a small window, despair was a daily visitor. I tried every conceivable remedy and I couldn’t tolerate anything and had bizarre adverse reactions.

All this made no sense at all until I studied iatrogenic injury in depth especially in relation to the benzo drugs. For almost a year, I only had vague ideas of what was happening to me, had little support, and no clear direction for healing.

Desperately seeking support of all kinds, facing roadblock after roadblock, there began to appear openings showing me a new navigation channel each time one that I was pushing for was thwarted. An unstoppable inspiration seemed to be seeping in in the midst of such darkness. The love and steadfast support of special friends was with me. Life was doing it all.

As I gained a little strength, I began climbing down a whole new rabbit hole of research, which led me to the confirmation and support I needed. I consulted with various benzo-aware practitioners and found important information that most doctors are unaware of. I consulted a retired doctor in England who provides individualized drug tapering plans according to well documented protocols, free of charge. I talked to so many people in online support groups who have been through benzo withdrawal hell.

Withdrawal and BIND (see post on terminology) is often a severely distressing experience that people have to muddle through in order to recover, but made much worse for lack of solid information about how to do it to minimize suffering. The picture kept becoming clearer.

50 years of living a life of constant physical distress, ramped up to unimaginable proportions n the past year, not knowing why, being railroaded into serious misdiagnoses and mistreatments which caused immense suffering, led to believe there’s no physical cause to be found because standard tests can’t find it.. Well, more sensitive functional medicine testing DID find a boatload of ripple effect problems but still the origin of the problem was never identified.

Eating disorder, mental illness – these were the default assumptions following me around all my life, which I always knew were patently, painfully false. I felt invisible to be so misunderstood by the medical establishment that I needed to work with. A small number of wise practitioners and friends knew this didn’t add up and hung in with me in all that we didn’t know, rather than holding false beliefs to force fit my condition into something known.

I traced the pattern of my mysterious symptoms and flareups throughout my entire life. The real pattern began to light up. EVERY major health issue since I began taking benzos in the 1970s could be traced to central nervous system damage due to benzos.

The worst time was the last few months of 2021 and 2022. I began my Valium taper in October of 2022, and since then, some symptoms have eased a bit for the first time. Some remarkable improvements have been made, although I’m still in physical distress chronically. It may be a long haul for healing, but being free of the drug poisons is a great sense of freedom.

Writing began to come back to me. A remedy I needed on a daily basis was in my artistic and poetic life, beyond the demands of illness and healing that had become so confining and tedious. But I soon realized there’s no dragon to be slayed first before claiming that life, nothing to be cleaned up out of the way first. This crucible right here is what is available to me. I had no choice but to become honest to the bone and consumed in that fire.

Much has eased since the lowest point a year ago, and much is still in process. I won’t be detailing everything I have pursued in the name of healing, or all the experiences along the way, the brutal ones and the blossoming emerging in the midst of it all. I hope to share some echoes. Not for anything to be pinned down and labeled, but imagined, I would hope, in an open ended way that honors the dignity of a life that is always a delicate, elusive thing.

I’m still in the thick of the healing process with BIND (see the terminology post), after a proper tapering protocol. It needed to be a very gradual taper even at low doses, which I’ll talk about in future posts. These drugs damage the central nervous system and stress every system of the body, so even after careful tapering off, it takes time for the nervous system to équilibrate.

Specifically, the GABA-glutamate system needs time to rebalance, and in the process there can be many distressing fluctuations. People often experience symptoms for many months or even years after getting off the drugs, but most see great improvements along the way. My sharing here can hopefully be a healing voice for myself and others to find their own.

Be aware that most doctors including psychiatrists who prescribe these drugs are unaware of the devastating effects that often go way beyond what’s considered acute withdrawal. Protracted and brutal withdrawal symptoms are common.

If you bring this issue up with most doctors, you will not receive an informed view. This is why it’s difficult to discuss in an abbreviated way, causing serious misconceptions.

There are experts in the field, and solid research. Please read through the rest of this site for more info. There is much support is available online, but it takes some work to do this investigation.

These writings are dedicated to all those who suffer from the devastating effects of psych drugs, and those who offer their compassionate presence and generosity in all forms. To all friends in this and other realms who remind me of the constancy of love even through times when I only feel lost and alone.

May we all know deep healing.

To Lisa, whose loving loyalty is exquisite and always takes my breath away.

To Enrique, who constantly shows me the dignity of things as they are. 

To Sonam, forever friend of my soul whose presence on this earth I sorely miss. 

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