Blindsided by Benzos: Had I Known

There exists a class of medications, prescribed to millions of Americans, that is slowly eroding our mental and physical health. Too many physicians are not disclosing the long-term consequences—or the harrowing truth that discontinuing these medications can plunge patients into relentless mental and physical torment, a nightmare that may persist for years. Recovery time is uncertain. At times, you question if you can survive. I know this because it happened to me.

Benzodiazepine-Induced Neurological Dysfunction (BIND) is a condition which happens to unsuspecting people who take benzodiazepines, especially those taking them long-term. Over 92 million prescriptions for benzodiazepines are dispensed in the United States annually, yet doctors are not informing patients of the serious consequences of long-term use or the devastating life-altering process of withdrawal and recovery.

A list of common benzodiazepines (benzos) in the US: Ativan (lorazepam), Klonopin (clonazepam), Xanax (alprazolam), and Valium (diazepam).

What Is BIND?

BIND refers to a range of symptoms that can develop while actively using a benzo or while tapering off of it and/or persist long after someone stops taking benzodiazepines.

• Cognitive Impairments: Memory, focus, and information processing difficulties.
• Psychological Symptoms: Anxiety, mood swings, depression, and in severe cases, hallucinations.
• Physical Symptoms: Dizziness, headaches, muscle weakness, and gastrointestinal issues.
• Sleep Disturbances: Insomnia or excessive sleepiness.
• Sensory Changes: Heightened sensitivity to light and noise.
• Motor Problems: Tremors and coordination difficulties.

Had I Known

I have been ruminating over these shocking facts over two years now, a dirty secret kept from patients. All I know is that I must speak out—to warn others and raise awareness. What I’m about to share may sound unbelievable, but tragically, it will strike a chilling chord with countless others who unknowingly became physiologically dependent on benzodiazepines. When they stopped taking these pills, they found themselves blindsided—plunged into the horrors of a chemical brain injury that impacts the mind and body.

Backtrack

Over twenty years ago, I was prescribed 0.5 mg of Ativan (generic version: lorazepam) by a psychiatrist for sleep problems. My prescription instructions stated 1-2 pills every night. Over the years, my usage fluctuated—sometimes taking one pill nightly, sometimes breaking it in half, other times only once every two to four nights, and rarely I took a pill during the day except in situations of intense stress (for example, one of my children having surgery). At first, the medication was peace in a bottle, a cure for my insomnia. During my checkups, I repeatedly asked the prescribing psychiatrist if this medication was safe for long-term use. Each time, I was flatly told that it was “safe and effective for long-term consistent use.”

When strange physical ailments began appearing, I again asked my psychiatrist if this benzodiazepine medication could be the cause. My concerns were dismissed with a scoff—“Not caused by this medication.” I trusted my psychiatrist completely. So instead, I chased answers with my primary care doctor.

For years, I endured a relentless decline: crushing fatigue, dizziness that felt like I was swaying on a boat, joint pain which felt like arthritis, night sweats, headaches, bizarre muscle injuries, worsening sleep, gastrointestinal issues, neck and back pain, swallowing problems, and a mind that felt slower–like gears grinding to a halt. My quality of life was unraveling.

Blood tests, an upper endoscopy, brain MRIs, and CT scans–all failed to reveal the source of my mysterious symptoms. I had no idea that benzodiazepines were quietly ravaging my brain and body.

I consider myself intelligent—with a successful career in technology, a BS in bioscience, and a mostly healthy lifestyle. I walked 2-3 miles regularly, only drank alcohol on occasions, and hadn’t touched recreational drugs since my 20s. Yet somehow, I failed to see the connection between my ongoing deteriorating health issues and those small, seemingly harmless pills.

It wasn’t until I was plunged into the unrelenting nightmare of acute withdrawal that I began to uncover the truth. As I read the online stories of others who had suffered through the same ordeal, the pieces finally clicked into place.

I was aghast. I was floored. I was ashamed. I was furious—and heartbroken. I had been blindsided.

Blindsided

Tragically, most people—like me—don’t recognize what’s happening until they reach one of these two stages: benzo tolerance withdrawal or acute withdrawal. By then, we are desperate, scouring the internet to uncover what no prescribing doctor has told us. We search for answers to questions that consume us:

Why is my body failing me? Am I dying of some terrible disease? Am I losing my mind?

And then, we punch in the name of the benzodiazepine medication we have been taking and we find it—a staggering wealth of information dating back over 40 years. Published warnings, case studies, white papers, medical journals, and thousands of stories from sufferers on forums like BenzoBuddies. There are multiple online forums where people are actively telling their eerily similar stories—and millions who are reading their stories and clinging to them for hope of surviving.

That’s when the true horror sets in—this nightmare is far from over. Life is about to get far worse before it gets better. This syndrome can last years. The mind and body need to endure horrific symptoms in order to heal.

When I finally grasped the devastating truth—that full cessation of these medications, which must only be done through an extremely slow taper, would unleash unimaginable suffering—I was in shock. This can’t be happening. This can’t be happening to me. I don’t deserve this. I followed my doctor’s instructions. I asked the right questions. He never informed me. I didn’t abuse my prescription. I’m not a drug addict.

I came to the chilling realization that going through hell is the only way out.

Benzodiazepines are among the most difficult substances to withdraw from—worse than heroin, alcohol, or nicotine. We tend to associate severe withdrawal symptoms with illicit drugs, alcohol, or painkillers, but no, this benzo syndrome happens to ordinary people with health insurance who trusted their doctor and followed orders. They end up worse off than street drug addicts.

I believe that the current published statistics stating that only a minority of people ceasing benzos suffer from withdrawals are not accurate. The data needs to be mined. Every ER visit with no obvious cause to the ailment, the question should be asked—do you or have you consistently taken benzos? Every suicide needs an investigation of finding out if benzo dependence has occurred in the last years of life. Every primary care physician who can’t find a root cause to ongoing issues—ASK if another doctor has prescribed benzos to the patient. Pharmacies need to report accurate numbers on the percentage of customers who consistently take benzos.

There is no definitive medical test to see if the body is reacting to benzos, questions and investigations are needed. Work needs to be done. I believe we will find that the vast majority of people who consume benzos are suffering some forms of withdrawal. I believe this benzo usage and withdrawal is a silent pandemic. Worldwide.

It is well-documented that benzodiazepines quickly lose their effectiveness, and they actually cause the very symptoms they were prescribed to treat—insomnia, anxiety, and a myriad of other paradoxical reactions. Yet another surprise to me was to find out that benzos are a powerful muscle relaxant—so when the body hits any of the three withdrawal stages, the muscles spasm, contract, and become intensity rigid—injuries occur easily. After only a few weeks on benzos, your life begins to disintegrate, though the damage goes unnoticed, like a frog slowly boiled alive in water.

The Stages of Benzodiazepine Withdrawal

Tolerance Withdrawal occurs while a person is still taking the benzodiazepine. When the brain adapts to the presence of benzodiazepines, it causes GABA receptors—which regulate the nervous system, muscle tone, and more—to become downregulated. Benzodiazepines chemically disrupt the brain’s hormonal balance, altering its natural synchronicity. As the central nervous system becomes compromised and increasingly dependent on the drug to function properly, in between doses, the brain runs out of this medication and needs more to function properly. Bizarre and seemingly random symptoms emerge, slowly chipping away at your quality of life.

Acute Withdrawal begins after complete cessation of benzodiazepines—typically within days or weeks—when the brain and body descend into a state of chaotic dysfunction. GABA receptors, now severely impaired, are unable to regulate the nervous system, while glutamate—the brain’s excitatory neurotransmitter—surges wildly with nowhere to bind. This chemical storm shatters the body’s equilibrium, leaving the entire nervous system in a state of raw, hyperactive distress. The effects are all-encompassing, from your toes to your scalp. People often describe this phase as nothing short of pure torture.

Protracted Withdrawal follows the acute phase, lasting weeks, months, or even years. Though the most intense symptoms may have subsided, what remains is a state of profound disability where basic functioning becomes a struggle. Acute symptoms flicker unpredictably, shifting between brief moments of relief (known as “windows”) and overwhelming waves of suffering. During this time, the nervous system remains dangerously fragile—easily triggered into devastating setbacks.

This is the grim reality faced by those who unknowingly become benzodiazepine dependent.

I was in acute withdrawal before I fully realized what was happening. I thought I was losing my mind, suffering from a mental breakdown, or perhaps facing a deadly disease—maybe even all three. In December of 2022, I swiftly descended into pure hell that defies words, but I’ll try.

It felt as though someone slipped LSD into my drink, trapping me in a dark, terrifying carnival funhouse—flashing lights, distorted mirrors, and my body tethered to electrical outlets, sending pulses of excruciating muscle and nerve pain while an endless, seasick sensation made me nauseous. Every light, every sound, became like lightning bolts searing through my nervous system. I couldn’t look at a TV screen without gagging from sensory overload. The sound of a fork falling to the floor made my body jolt.

My energy was completely drained, so weak I could barely hold my phone up in bed. Relentless, torturous insomnia—was paired with an all-consuming, chemical fear. Many nights, I curled up in the fetal position, drenched in sweat. On other nights, I felt as if I were swimming in place, helpless, unable to stop the constant, desperate motion. Anxiety—irrational, intrusive, and repetitive—consumed every thought.

I was 49 years old, yet had never experienced a panic attack in my life. Now, I was trapped in terrifying panic attacks that could last for hours, sometimes seven or more. I felt as if I might collapse at any moment, a deep, internal trembling shaking my chest from the inside out. My head felt ready to explode, the pressure unbearable. I dry-heaved multiple times a day.

My fingers and random face muscles twitched uncontrollably, and the shrill tones of tinnitus screamed in my ears. Every time I tried to fall asleep or wake up, sharp electric shocks jolted through my body—like being tasered. I remember lying in bed at night, terrified of my own shadow. The mere raising of my hand cast a dark shape on the wall, and fear surged through me. My body lost all ability to regulate temperature. I took scalding baths, scalding showers, yet still, I couldn’t shake the bone-chilling cold. My blood sugar plummeted, triggering overwhelming anxiety and frantic needs to eat. My sodium levels, too, were dangerously low giving me feelings of imminent passing out or on the verge of a seizure.

I couldn’t walk in a straight line. I stumbled, as if I were drunk. I kept misjudging where to place things and they would fall to the floor. I couldn’t think properly nor could I retain any information. I tried to cook and would just stare and couldn’t make sense of the order of ingredients to prepare. I forgot words and struggled to understand simple conversations. My muscles were so rigid that I can only describe it as rigor mortis setting in while you are still alive. The deep physical pain—it was everywhere in my body, relentless, and constantly shifting, as though my body were responding to needles being plunged into a Voodoo doll. One moment, my elbow felt like it was broken, the next my knee, then my hip. I had terrible throbbing chest pain even when lying down.

Basically, my body became its own torture chamber. My mind oscillated from thinking I might actually die from this torture to not wanting to live through this torture. I was so desperate and scared out of my mind that I came up with the ideas of how to end the suffering and die peacefully, but picturing my kids would instantly prevent me from taking action.

I tried everything to alleviate my pain and suffering. One time, I went to see a massage therapist who took one look at me (trembling limbs, pasty white face with black eye bags, and a look of complete fear) and told me we needed to pray to Jesus. Literally. I’m very spiritual but not really religious and I instantly answered yes. To be sure, I would have gotten baptized while having a blood transfusion if it would heal me.

My cognitive decline was horrifying. I couldn’t make sense of anything and never knew what day it was. Initially, I thought that everyone else had turned into idiots because they couldn’t understand me, before I realized that I was not playing with a full deck. I was making up words, forgetting words, not pronouncing words correctly—unable to explain what I really meant. I was so entirely scared that I was permanently brain damaged.

I barely hung on to survive. I kept wondering (and still do) how doctors could prescribe this medication despite all the research proving these horrible consequences.

Why Wasn’t I Informed by My Doctor?

Armed with my extensive research and undeniable evidence, I reached out to my prescribing psychiatrist. I wanted answers. Above all, I wanted hope. I wanted definitive timelines as to when I could expect this torture to end. Instead, I was dismissed—again. He claimed he had “never heard of a patient experiencing such withdrawal,” and coldly added, “I wish you had contacted me sooner. There are other medications that can ease these symptoms.” Hell no. Why would I subject myself to yet another potentially harmful medication to mask the nightmare I was already living? Why would he suggest more drugs when, as he put it, “no one experiences withdrawal for so long”?

When I didn’t bite on his other medication offerings, he tried to squirm his way out of my questioning and deflect. “Did you not read the warnings attached to the prescription packaging from the pharmacy?” Apparently in 2020 (18 years too late for me), there was black box warning which came out and stapled to the bag of the prescription. Does anyone stop to read these papers with a medication they have been consistently taking? Don’t we rely on the prescribing doctor to inform us of risks, side effects, etc.?

I returned his question with a question “Did you make me aware of this attached warning? Why did you not give me the Cliff’s Notes during one of our check-in appointments? Why did you consistently prescribe a medication to me for the last 20 years that was only approved by the FDA for 2-4 weeks? Why didn’t you inform me of these documented consequences?” He then deflected by asking me “Do you trust me as your doctor?”

I was getting absolutely no answers and being made to feel worse, abandoned. I recorded this Zoom meeting. He then sent me a professional letter in the mail, back-dated 5 months prior, which corresponded with the date that I had told him that I would like to begin to cease taking these medications. I still have this letter. He states that he conferred with “other” doctors to gather some information—he states he is aware of my “hesitancy to use any form of medication to treat my symptoms.”

When I had mentioned that I would like to get off these medications, I had to bring up to him the Ashton manual for deprescribing—basically he sent me a PDF of this manual and left me to my own devices to taper. None of the examples in this manual matched my current dosage so I was forced to wing this taper, which was done too fast, I found out later (again through my research on the internet, not by the prescribing doctor).

He knew. I knew. He knew I knew. The truth had become undeniable: I had been fed lies for over 20 years. I was never told to taper off or stop these medications—only endlessly prescribed more, each time with no regard for the consequences. He knew he had me captive—a lifetime subscription to benzos and his practice.

My story is far from an isolated case. Millions are consistently taking benzodiazepines, medications that were never approved by the FDA for long-term use, yet benzos continue to be prescribed for long term use. We are not patients—we are victims and consumers, trapped in a system that profits from our suffering.

Protracted Withdrawal

What follows acute withdrawal is protracted withdrawal which can take years to recover. These are lingering debilitating symptoms which make one afraid of living life. One moment, you are humming along for a few days thinking that you are getting your life back on track (window), the next moment you feel the world go off-kilter and you can’t function due to pain, sickness, tremors, chemical fear, bedridden fatigue/weakness and/or dizziness (wave).

I’m still in the protracted withdrawal stage. There are some days I can’t even walk correctly. I can’t work, I have tried, I barely have enough energy to take care of myself. Daily, I ask the Universe for a full recovery. How does someone come to terms with the fact that they unknowingly and by a doctor’s prescription inadvertently ruined their own health? I’m still grappling to get my head around this reality and wonder how much of my life has been or will be irreparably destroyed? At this point, I still have no idea. That’s terrifying. My life is indefinitely on hold for all intents and purposes.

What Needs to Change in the Medical Community?

Doctors hand out these drugs as if they are a cure-all—ER doctors, primary care physicians, psychiatrists, and more. Yet, too many fail to disclose the horrifying long-term consequences of benzodiazepine use. Every patient, before writing a single prescription, needs to be informed. All prescribers must be held accountable. Patients need to make informed decisions and doctors MUST adhere to the medical guidelines. Doctors should be required to verbally convey this information periodically, each time they refill a prescription.

There must be enforcement of the FDA guidelines, restricting benzodiazepines to no more than 2-4 weeks of consistent use OR sporadically only used in rescue situations. And we, the victims of this over-prescription, must report these reckless doctors to state medical boards. Only then will this madness stop. Medical misconduct needs to be reported in every state.

I reported my prescribing psychiatrist to the New Hampshire medical board and there is currently an ongoing investigation. I can only hope they find him guilty of medical misconduct and his reign of over-prescribing benzos to our local community stops. Think globally, act locally. Please take action if you have been affected by this benzo condition—I implore you!

People are being exterminated by their own hands, driven to suicide just to escape this unimaginable suffering. These are otherwise stable, productive professionals—the kind of people you would never expect to fall victim to such a fate. These horrific situations are 100% preventable, simply by providing patients with the necessary knowledge upfront. No sane person would willingly take a prescription that could steal their life, leaving them to suffer through months—or even years—of torturous withdrawal and disabling symptoms.

Doctors are failing us. First, do no harm. With all the 40+ years of research readily available, medical school, interactions with their own patients plus their colleagues’ patients, mandated periodicals, doctors are aware of this benzo condition—yet they claim “I’m just as surprised as you are.” How can they live with themselves, knowing that their actions may have irreparably damaged another person’s life, even their very basic health? How can they live with the weight of destroying someone else’s life or future?

I knew I could not remain silent. I had to share my own story and warn others before it was too late for more unknowing and/or unsuspecting patients. The suffering caused by benzodiazepine withdrawal goes beyond just the tragic loss of life—it steals every piece of your existence. Daily activities like cooking, showering, cleaning, laundry, working, parenting, and even going to school become impossible. This is a destruction of life that no one should ever have to face.

Consistent benzodiazepine use causes a chemical brain injury. Tell your family. Tell your friends. Tell your neighbors. Tell your coworkers. Tell everyone. Tell anyone who will listen. Because most doctors are certainly not telling us.

Lastly, I wasn’t sure I was going to include this personal detail in this article but I think my situation illustrates just how much we don’t want to believe this syndrome exists, including me. Six years prior to the start of my horrendous experience, my estranged identical twin went through acute benzo withdrawal. I never saw her, but through family members I heard “she looked like shit and was in bed all the time.”

She did text/email a couple of times and told me that benzos were poison. I admit, I thought she had possibly abused her prescription (she went to a different doctor, was put on a different benzo, for a different reason than my own issues) or she was taking an extremely high dose or something else was at play and so I dismissed her. Never did I believe her. I could have conducted research right away. I should have listened and offered her support. I would be healed by now if I had started tapering six years prior. Without her rescue/support, I’m not sure I would have made it through this nightmare.

I understand that people can’t grasp or believe this trauma unless you have gone through it or witnessed it first-hand. The more that people speak out about their experiences, the more other people will listen and hopefully come to believe what’s in store for them if they consistently take benzos— and ultimately prevent countless people from going through their own horrendous experience. We should be learning of this condition from doctors, but until then, there is a need to share personal experiences to raise awareness.

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References of published medical research articles are included below.

Some resources are locked down behind a paywall; isn’t that convenient for public knowledge? Luckily, some are not locked. A wealth of information everybody should have access to.

1.  https://journals.sagepub.com/doi/10.1177/20451253221082386
2. https://journals.sagepub.com/doi/10.1177/1049732315576496
3. https://journals.sagepub.com/doi/10.1177/1049732317728053
4. https://journals.sagepub.com/doi/10.1177/2045125317753340
5. https://journals.lww.com/practicalpsychiatry/fulltext/2015/07000/benzodiazepines_for_ptsd__a_systematic_review_and.6.aspx
6. https://bjgp.org/content/58/550/365.2
7. https://www.tandfonline.com/doi/abs/10.3109/00952998209002608
8. https://osf.io/cewgb/
9. https://www.nature.com/articles/1300531
10. https://onlinelibrary.wiley.com/doi/10.1002/capr.12453
11. https://www.sciencedirect.com/science/article/abs/pii/S0163725803000299
12. https://journals.lww.com/ccejournal/fulltext/2020/04000/opioid_and_benzodiazepine_withdrawal_syndromes_in.5.aspx
13. https://www.sciencedirect.com/science/article/abs/pii/S0003450909001382
14. https://journals.lww.com/psychopharmacology/citation/2000/04000/neuroleptic_malignant_syndrome_after_antipsychotic.33.aspx
15. https://www.mdpi.com/2035-8377/13/4/59
16. https://onlinelibrary.wiley.com/doi/10.1111/j.1600-0447.1990.tb01375.x
17. http://www.doi.org/10.1177/20451253221145561
18. https://jaapl.org/content/44/3/328.long
19. https://pmc.ncbi.nlm.nih.gov/articles/PMC7213946/
20. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9047812/
21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8200310/
22. https://pubmed.ncbi.nlm.nih.gov/25800715/
23. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10309976/
24. https://pubmed.ncbi.nlm.nih.gov/28891380/
25. https://pubmed.ncbi.nlm.nih.gov/15762814/
26. https://pubmed.ncbi.nlm.nih.gov/2899898/
27. https://pubmed.ncbi.nlm.nih.gov/?linkname=pubmed_pubmed&from_uid=2899898