Author: karen

Many people experiencing this devastating illness know without a doubt from their own experience, especially if they have the wherewithal to do their own research, that these drugs have made them very ill. But convincing their doctors, family and caregivers of the real cause can be very difficult.

It’s important to understand why this drug-induced illness is not yet widely recognized, and why severe neurological symptoms lasting months and years are generally not yet being attributed to drug effects.

Research does reveal the scope of damaging effects of these drugs, but most doctors, even psychiatrists who prescribe them every day, are still unaware of all the implications and related phenomena including tolerance withdrawal and inter-dose withdrawal.

Most believe that benzo withdrawal lasts a period of several weeks at most, with a short taper, like opiate withdrawal. This is NOT the case. Symptoms from benzos and withdrawal often last much longer, and short tapers can have devastating effects.

Psychiatrist Josef Witt-Doerring states that the term BIND (benzodiazepine-induced neurological dysfunction) although accurate, is not used on the drug labels, so few physicians are aware of it.  What people are experiencing is a protracted withdrawal lasting many months or several years. But because the term “protracted withdrawal” can be confusing, here is how he describes it: 

“It’s a severe neurological reaction to a medication. It’s only recently been recognized. They’ve only recently been putting it on the drug labels. Here are (a few of many of) the symptoms: severe neuropathies, sensory abnormalities, balance problems, ear ringing, anxiety and depression. People don’t really know what the clinical time course is. Only recently recognized, it’s in the labeling for all the benzodiazepines now since 2020. “

Research on benzodiazepine withdrawal was pioneered by Dr. Heather Ashton, and her manual is still the essential reference for protocols for safe discontinuation of these drugs. It was first published in 1999:

BENZODIAZEPINES: HOW THEY WORK

AND HOW TO WITHDRAW (aka The Ashton Manual)

PROTOCOL FOR THE TREATMENT OF BENZODIAZEPINE WITHDRAWAL

Medical research information from a benzodiazepine withdrawal clinic

Professor C Heather Ashton DM, FRCP

Revised August 2002

—-

See the Resources page here for links to more research.

Detailed Explanation of GABA, Glutamate and Brain Structures.

This is important to understand exactly what is happening to the brain and CNS and hence every aspect of a person’s body and mind, with benzo use, withdrawal and protracted symptoms.

Posted by Rosalind Jones on Beating Benzos group. This was written several years ago by a member of Benzo Buddies and very informative on the brain and its structures.

First off – let’s start with GABA and Glutamate. Most of you may know how this works by this point. But for those that don’t, we have a huge nervous system of millions of nerves (neurons).  They don’t “touch” each other. They are separated by a tiny space in between. However, they communicate via chemicals. The 2 MAIN chemicals in the entire nervous system are the BIG GUNS.  They are GABA and Glutamate. They are BOTH at work at ALL times in the CNS.  It isn’t like one is working and then the other is working. They are BOTH ALWAYS working in tandem to control every aspect of movement, sensation  – everything. They take the incoming information and appropriately pass it along – they “trim up” the information appropriately so that we can process it.  They are like the steel structure of a building.  The entire building needs a steel structure to stand.  

GABA is inhibitory.  If a nerve releases GABA – it is to Inhibit function – this could be to “slow it down” or it could be to “limit the sensory input” so that we can process it.  In the same way, GABA might be released to help “steady” your hand while doing something like painting a very detailed painting.  GABA “shores up” movements to make them more fluid.   That’s just in a nutshell. Of COURSE it does a lot more than this, but the idea is that GABA is present in the ENTIRE CNS and ALWAYS working to balance every sensation, movement, etc.

Likewise, Glutamate is the balance to GABA. It is the “excitatory” transmitter. It fires to speed things up – to initiate action – to make things “go”.  There’s a lot more to it, but Glutamate is kinda the opposite of GABA.   

BOTH are required to work at all times.  Neurons are ALL ALWAYS firing off GABA and Glutamate on a endless cycle all throughout the nervous system. It’s quite amazing really.

What does a benzo do?  If a person is anxious – they may be so stressed that they cannot overcome a very traumatic event or anxious situation.  If a doctor prescribes a benzo – the benzo comes in and sorta “holds the door open” for ALL the GABA in the system to FLOOD into the nerves – even when that is not what the nerves would actually want to occur. The immediate effect is that EVERYTHING ni the body SLOWS DOWN and is inhibited. This might be helpful during surgery, for anesthesia, for a seizure disorder.  Yes – the benzo – by definition – will act on GABA and “slow everything down”.  And yes – the net effect of this is that a person may feel drowsy, calm, less anxious… everything is being inhibited.    And in general, taking a benzo for “one day”  is okay. When the benzo is gone, the body just reverts back to regular operation. 

HOWEVER, if a person takes a benzo day after day,  while indeed the person feels less anxious, the body begins to realize that it cannot DO the things it needs to do in this very slowed-down neuron state. It cannot make hormones. It cannot create enzymes. It cannot digest correctly. It cannot keep a heart going efficiently. It cannot get enough oxygen- and on and on. The body NEEDS to run at “normal” speed – not this “inhibited speed” all slowed down.  

But what can the body do? It cannot “remove the benzo” from the system. The only choice the body has to maintain a regular speed is to do two things ..  It can TURN OFF it’s own GABA receptors – thereby rendering those benzos unable to affect the GABA in the system. And it can grow MORE excitatory Glutamate receptors to counteract the slow-down.  And that’s kinda exactly what happens….

Only – this isn’t true balance either.  The body does the best it can – but over time, things begin to suffer.  The body cannot make enough serotonin in this state. Or dopamine. Some things get made in excess – and other things do not get made enough!  During this time, a person may not be aware this is all going on. He may not be able to perceive any difference. But ONE day – the person may wake up sad – or not sleeping well – or unable to remember things fully – or his vision doesn’t look right….and it becomes apparent the person has “hit tolerance”.  The body is taking the same amount of drug -but try as it might, it just cannot overcome what has occurred. It can take weeks, months or years to hit tolerance. Some people do and some don’t before trying to get off benzos.  (I did. – it took me 9 months to hit tolerance.  But it was fast.  Once I hit it, I could not sleep more than 6 hours on all that klonopin AND Ambien! I couldn’t remember things last week. I was crying all the time… something was wrong.)

The process to reverse this takes a while.  GABA receptors have to UPregulate and effectively “reopen” or “grow back”.  Glutamate receptors must DOWNregulate, or effectively “turn off” or “prune back”.  And IN this mix, all the smaller monoamines (neurotransmitters like serotonin, dopamine, norepinephrine) must somehow find a way to synthesize in the mix.  Through weeks and months the body is rebuilding millions of neurons, and changing pathways, rebuilding GABA, downregulating Glutamate, rebuilding serotonin, rebuilding dopamine, rebuilding norepinephrine.  And ALL the enzymes and hormones that need to be made are attempting to be made while this is going on.  Basically- you have a building where the MAJOR steel structures are trying to be rebuilt at different times – ALL while people are coming and going in the building and attempting to work.

It would be like if the World Trade Center Towers hadn’t completely fallen – but had crumbled inside in different places.. Imagine if you were trying to rebuild the tower – WHILE people were coming and going and trying to work in the building!  You’d have to set up a temporary elevator – but when you needed to fix part of that area, you’d have to tear down that elevator and set up a temporary elevator somewhere else. And so on. You’d have to build, work around, then tear down, then build again, then work around, then build… ALL while people are coming and going, ALL while the furniture is being replaced, ALL while the walls are getting repainted… ALL while life is going on INSIDE the building. No doubt it would be chaotic. That is EXACTLY what is happening with windows and waves.  The windows are where the body has “got it right” for a day or so – but then the building shifts and the brain works on something else – and it’s chaos again while another temporary pathway is set up to reroute function until repairs are made.  

And just like the Twin Towers- it’s possible – but the building is a major effort -and it takes a good year or more sometimes.  

(Now look at the new Tower that stands at Ground Zero!  It’s taller, stronger, and a symbol of freedom.  JUST like you will be!  )

So – okay – what is happening in that chaos?  What parts of the brain are responsible for these symptoms?  

Now, I don’t “know” the following based on research, because not enough research has been done yet  – but based on my studies in neuroanatomy and my own withdrawal experiences, here is how I have analyzed what is “happening” during wave symptoms. Remember, I have had to look at radiology reports of brain damage and estimate what a patient might present with – so this is very similar. Instead of a radiology report showing me what has been damaged, I’m using my own brain symptoms to surmise what is going on….

Let me first list brain structures and their functions. This will help you understand where things happen in the brain and when symptoms occur, what may be happening.

BRAIN STRUCTURES 

– amygdala  – This is the FEAR center in the brain. It’s a tiny part in the middle of your brain. Fear is protective and it’s GREAT if you need to assess something that is dangerous and to ACT  – like if a rabid dog were chasing you. – but it’s hard in recovery when it’s all you feel for months! But the FEAR is not truly in your MIND. It’s in your BRAIN.  There is too much glutamate acting here in the amygdala and not enough GABA. So the nerves are firing off in the fear center when nothing scary is really there in your environment.  It is normal for that to happen given the circumstance physiologically. But it feels awful, doesn’t it?  I know.  But it’s just a brain structure. This can account for fear, agoraphobia, fear of water, fear of anything.  It’s not that you’re really “scared” of the moon – it’s that you’re in almost constant fear because this brain structure is healing. The glutamate is pruning back. The GABA receptors are opening back up.  It may or may not continue for awhile. It will abate. Then come back. But eventually, the brain will get it right.  

-Hippocampus – This is the “memory” center of the brain. It ties in old memories to emotions.  The same thing is happening here that is happening in the amygdala with GABA and Glutamate. So – voila. You get intrusive memories from ALL times in your life.  It’s wild and wicked and wooly. But it can’t hurt you. And if you can learn to visualize this as what is happening – then you can learn to be objective and realize it’s normal.  And like the amygdala – it will come and go and frustrate you, but it will go away when the physiology is restored.

Hypothalamus This is the structure that is responsible for regulating body temperature. In early withdrawal, my body temperature would drop to 96 degrees in waves! Then 3 hours later, it would return to normal. I’d literally freeze in terror in bed for hours.  I am sure it is more complicated that JUST the hypothalamus, but I could picture this part of my brain retuning and restructuring, and it was less scary that way. 

The following structures in the brain are part of the “gray matter” or the “cortex “and what we consider to be the “higher brain”- the thinking and processing parts. 

Frontal Lobe This is the part of the brain behind the front of the skull. It is responsible for planning things. For making decisions. For inhibiting emotions appropriately.  It is the part of the brain you need if you want to make a sandwich and need to get out the ingredients and actually make the sandwich. I have seen people with brain injury be able to TELL you how to make a sandwich – but when they are standing there in front of all the ingredients, they cannot actually move to act to make it! They have frontal lobe damage. They can TELL someone how to make it. But they cannot themselves initiate doing it! As you can imagine, with therapy, and time to heal, this goes away. And we are a lot like this – but it goes away for us, too.  I could not organize my children’t toys just 4 months ago.  Not a simple room of toys. I didn’t know where to start and I literally could not mentally do it. I imagine this is partly why.  No frontal lobe GABA.  And too much Glutamate.   But now, check out this post I”m typing.  Obviously that changed. 

This calms down and these things come back. 

Occipital Lobe This is the vision center. t’s at the back of your skull.   In recovery, my nerves have been all whacked here. I see things as too bright – possible due to this lobe – and/or the actual visual nerves in the eyes.  But no doubt people “see things” that aren’t there.  Vision is distorted. Things go blurry.  Colors are totally off.Brightness is off.  There are a hundred symptoms possible in vision alone!  But again – it’s a matter of time.

Vestibular System This is the system of semi-circular canals in the inner ear that are responsible for making you feel balanced in space.  When this is “off” or damaged temporarily, you feel dizzy. Oh man, was I dizzy. Early off – I felt like I lived in a funhouse.  Over time, a combination of this vestibular system and my damaged visual system made things look like they were “leaning”. To this day, one eye sees things “correctly” and the other eye sees things as SLIGHTLY leaning. And it’s not that the eye itself is seeing them that way.  The healing vestibular system is working WITH the eye to “tell” the brain that that object looks like it is “moving left-wards” or “leaning”. But it isn’t.  In waves, this can happen bad – and then be GONE – poof – in a window. This is just the vestibular system healing. It’s gotten WAY better. 

Temporal Lobe  These lobes are on the side of your brain on each side near your ear. It makes up the whole left and ride side of your brain.  This is where auditory information is processed, including hearing itself, but also the “Meaning” of what we are hearing, as well as part of speech and language, emotion, and buncha other stuff.  In early recovery, someone was talking to me and I couldn’t tell you what they said past the first sentence.  My auditory processing was ALL messed up.  I couldn’t picture what a person was saying to me in real time – and by the time I caught up to them, I was lost and they were talking about something else! Also – When I was laying there in bed, I could “hear” things that weren’t there in the noise of my box fan. I’d hear the fan blowing -but I also “heard” like sickening circus music. I believe this is because there is noise coming into my ear – but my brain cannot adequately “prune” what it is hearing at different frequencies because there is not enough GABA to inhibit it to create something meaningful.  There was all this “noise” and my brain was just firing off glutamate.  So instead of actually “processing” the noise – it was firing off ideas about what it was hearing – and they were ALL wrong.  I would be hearing what sounded like circus music – and at the same time, my poor brain was looking through my hippocampus to find all the memories I ever had of being at the circus – and then I’m reliving those memories- and at the same time, my amygdala is getting fired upon – so I’m in fear. So I’m a quivering mess of a person laying in the bed hearing and seeing things and remembering times in my childhood and scared to pieces.  Seriously? Yes – I felt crazy. But not in my MIND.  It was my BRAIN.  It’s the BRAIN.  And it’s normal. The structures in the brain are “obligated” to work this way.

That brings me to my next point… WHY do all of us in benzo recovery have generally the same symptoms? Well – it may make you feel calmer to realize that our brain structures are NOT broken. They are doing EXACTLY what they are supposed to do under the circumstances.  And all of our perceptions of what we are seeing, feeling, hearing- are normal because the parts of our brains that are firing off are doing so because a) They still DO work. b) They work just as they were intended to. c) They are actually healing as all this firing is going on.  

Why the depression and anxiety? It’s so complicated, but this WHOLE system is interdependent. At that SAME time as ALL this stuff is going on, the entire body is trying to heal in every place GABA and Glutamate naturally act (uh – and that would be – EVERYWHERE).

The intestines, stomach, eye balls, skin, toenails – seriously – where do we NOT have nerves?  

Anything we didn’t have as a pre-existing condition is fair game for being affected by the recovery that takes place.  

This includes the body’s own ability to make serotonin that is required to feel “balanced” and “happy”. And you guessed it. This is not being made very efficiently in a building that is under major construction. So – you may get a day or so of feeling good – and then – boom – that’s gone until you can make enough serotonin.

Oh – and by the way – serotonin HELPS TELL THE NERVES WHEN TO RELEASE GABA AND GLUTAMATE! Ha! 

So on top of needing GABA to make serotonin, you need serotonin to regulate the release of GABA into the system!  

How much more interconnected can you get?  God – it’s a wonder it knows how to heal at all!  But it does!  Amazing to me, really.

This is just some limited information to give an idea of what is going on in neurophysiology.  Obviously this is very cursory and not super detailed. But there is a bigger point here than “what parts of the brain are affected”.  

The point REALLY is – IF  YOU KNOW that symptoms are tied to parts of a NORMAL brain under reconstruction, then you can begin to rest a little more easy in your mind that under the circumstances, the symptoms themselves are a GOOD sign.  

Without intrusive memories – as awful as they are – especially when mixed with fear – but without them, your memory itself would not heal.  It IS healing – and when you are having intrusives, try to think of it that way.  Tap your finger to your temple and say to yourself, “I know what this is. This is my hippocampus healing! Ha!” Because it IS.  And if it were NOT healing, you would not be having those symptoms.  ANY part of the brain or body that needs to heal is going to “experience” something in the form of symptoms – and you are going to notice that. But it is part of  process that is inevitably returning to the balance that it could not achieve while we were still putting those pills in our mouths.  (And if you’re tapering, this is still happening – just likely with less trauma than with what happened to me when I cold-turkeyed.)

So – when you have symptoms – know that symptoms themselves are a way for you to know that healing is taking place.

And finally – realize that the DRUG is GONE.  This is withdrawal – yes – okay -we call it withdrawal –  but it’s really “recovery”.

The benzos are gone. The “evil drug” is no longer there.  The symptoms that are left are not the “enemy”. That’s our brains doing the EXACT right thing. What’s happening to our brain at this point is not the “benzo beast”  It’s OUR BRAIN recovering.

Not to degrade anyone who calls it the benzo beast  – I get that. But just so you know – you’re not really fighting a beast.

You don’t even need to fight it.  Just wait it out. All that reconstruction is happening on your building. 

And soon – the frame will be back standing, stronger than before. The furniture will be inside. The elevators will go all the way up to the top again.   And the people can come and go and work like a well-oiled machine.  

Don’t feel you need to fight the reconstruction. It’s just healing. And all that is happening to us is a sign of that.

Hope this helps somebody a little – or maybe a family member.  

And if you ARE a family member, please realize that those of us in recovery are no more in control of how we feel or what we experience than people who have undergone brain trauma in a car accident. Please be patient with us, because our brains are healing and we are in the process of reconstruction – and our function is temporarily enabled, then disabled, then enabled, then disabled again.  And that is totally normal and expected.  We can no more help that than a person can “want” to wake up out of a coma. It happens when the brain is able – and not out of sheer will.  But it does happen. So please stand by us and say loving things and reassure us every day. Notice our improvements and tell us what they are.  Encourage us when we feel good.  And when we don’t, just hold us and hug us and tell us it will be okay.  Anything you would say or do for a family member that had had a car accident and a brain injury – please do that for us.  And be patient… we are getting there.

A major part of the symptom picture of benzo withdrawal or BIND is the drug-induced hell called Akathisia.

From the Akathisia Alliance for Education and Research, Dec 10, 2021:

“Kathleen Fliller is the sixth friend we’ve lost to akathisia since August. [She sent a] voice message to a friend shortly before taking her life. It’s difficult to hear, but we want everyone to know the whole story, that these people are not dying solely because of akathisia. They are also being abandoned by family and friends because they cannot get the correct diagnosis from their doctor, so no one believes them.”

Akathisia can include agitation, tremors, a sense of inner agitation and overstimulation with or without overt movement, outbursts of anger or panic attacks, insomnia, a skin crawling feeling with itching all over, and many various neurological problems. It’s often described as a feeling of “jumping out of my skin.”

It’s not just the discomfort of agitation, but can be truly agonizing especially because it can be so unremitting day and night.

Akathisia can be caused by benzos, antidepressants, antipsychotics, and many other drugs not used as psych drugs such as anti-nausea drugs, certain antihistamines, and fluoride-based antibiotics. People can experience Akathisia while taking the drug, when withdrawing from the drug, and often for long periods of time afterward.

A often overlooked fact is that withdrawal often occurs between doses too, as well as when a person has reached tolerance at a certain dose. That means that many of these symptoms can occur any any point.

Most doctors and medical personnel are unaware of Akathisia, its severity or its prevalence.

I’ve had Akathisia for most of my adult life, running the gamut from an uneasy inner shaky feeling to the sleep deprivation torture of extreme insomnia even while beyond exhausted, to inner nerve pain with convulsions that was the most profound suffering I ever experienced.

I told my doctors that I felt like I was in a medieval torture chamber. They didn’t know what to make of that. The palliative care nurse practitioner only knew to give me more benzos to try to provide some relief. The rationale was that different benzos can have different effects, and “it can’t hurt to try.”

At that point I was still uneducated about benzos and Akathisia, and I was looking for a better drug to rescue me from the torture. Well, the Ativan she prescribed plunged me into the most profound agony for several months. I switched back to Valium and a year later after tapering I’m drug free and beginning to heal.

Here’s an excellent 3-page guide to Akathisia suitable for printing and sharing.

Click to access Guide-to-Akathisia-for-Family-and-Friends.pdf

The following quote from a support group member may help people understand the behaviors of someone with Akathisia, why they are consumed with the distress they are experiencing and why they often can’t listen to what you may think is helpful input. It’s not avoidance of issues. Their central nervous system is simply too overloaded and exhausted due to the chemical poisoning.

“It’s like someone sets you on fire…now try to have a conversation with someone while you are consumed by the flames. Try watching a movie like that. Check your mail while you are burning. Try taking a nap while the fire burns relentlessly. You can’t. It’s impossible. The simplest tasks become completely overwhelming because your one and only focus is the fact that you have been set on fire. And, what’s worse…no one can see the flames consuming you.”

“Aka-What? The Need for Education
With rates that high, one would think that most medical and mental health professionals would recognize the condition. Sadly, that’s not the case. While many psychiatrists are trained to recognize the disorder, many medical and mental health professionals are unaware of it or have only read about it in a textbook. Even the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association, merely touches on the condition.

As a result, akathisia often goes undiagnosed or misdiagnosed as a psychiatric problem. Patients who do not present with the classic motor symptoms and experience only the subjective feelings of terror or agitation are often misdiagnosed as having anxiety. Sufferers themselves are sometimes unable to differentiate between anxiety and the agitation associated with akathisia. A misdiagnosis can lead to prescribing more medications that can further exacerbate the problem.”

-NCCHC website

From the Akathisia Alliance:

Misdiagnosis and Suicidality
Akathisia is not subtle. Its symptoms are so severe, in fact, that there are many reports of people with no history of mental illness or depression who took their lives within days of its onset. The importance of an accurate and swift diagnosis cannot be stressed enough. As the suicidality is primarily due to its subjective symptoms, it is crucial to consider a self-diagnosis – even when a patient exhibits no objective signs. Failure to do so and an alternate misdiagnosis are currently resulting in unnecessary involuntary hospitalizations, forced drugging with medications that worsen the akathisia, loss of family support, abandonment, homelessness, and a much greater risk of suicide (see page 3).

Common Misdiagnoses: Worsening of a mental illness, new mental illness, generalized anxiety disorder, panic disorder, personality disorder, bipolar disorder, attention-deficit/hyperactivity disorder, restless legs syndrome, health anxiety.

Guide for clinicians:

Click to access Guide-to-Akathisia-for-Clinicians-.pdf

Insights into the now 50 year mystery of severe eating difficulty continue to unfold. 

As benzos potentially damage any and every aspect of the CNS, the vagus nerve which links the CNS and the body, and controlling stomach motility, can often be damaged. People may have varying degees of gastroparesis, and bezoars can form as a result.

A bezoar is a mass of undigested food, held together by plant fibers (or in the case of animals, by hairs from animals eaten), that can create a blockage that slows the normal emptying of the stomach. They’re like the pellets passed by owls. And in many cultures, bezoars from animals were prized as magical charms. All so interesting, but what to do..

Definitive testing for this is not doable for me, but medical opinion says they’re a “distinct possibility,” given my symptoms. Why this wasn’t adequately investigated many years ago, is one of those good but unanswerable questions.

So the best home remedy seems to be Coke and cellulase enzyme. Instead of ingesting toxic chemicals in commercial Coke, I’m using orange juice and seltzer. The idea is acidity, carbonic acid and phosphoric acids dissolve the bezoar. pH of 2.6. And cellulase enzyme breaks down the fiber.

There are many other remedies for gut motility. (The usual pharma ones all have nasty side effect profiles, and I’ve had bad experiences with them).

I’m using;

Hingashtak (Ayurvedic herb combo of asafoetida, cumin, black pepper, etc)

Herbal bitters 

Probiotics

You’d think high fiber would be good for gastroparesis, but not if there is a bezoar, where fiber would just add to the blockage. Fiber normally works by a sweeping action, which is actually not the ideal way to move food along through the GI tract. Having a healthy microbiome is the way. The microbes in proper balance take care of it. High fiber foods are actually very hard on anyone’s gut (beyond the scope of this post!)

So this is just one area that the whole benzo saga has me focusing on right now. A big one. A connection between benzos and the gut, which has taken a lot of investigation to tease out. Each of these lightbulb moments reveals more of the picture and brings more hope.

The typical healing time for benzo-induced damages is 3-18 months, after discontinuing the drug. As of this post, January 2023, I’m only 2+ months in, and still on the rollercoaster of waves and windows, mostly waves.

To understand the process, there is an important distinction to make between withdrawal symptoms and what is now known as BIND. 

Withdrawal defines the period of time the drug is eliminated from the body,  up to 28 days for benzos. That’s acute withdrawal. Symptoms during this time are often severe but usually short lived – 

Hallucinations, tremors, seizures, other severe neurological symptoms

Withdrawal is more about the elimination of the drug from the body. Youre still experiencing drug effects. 

BIND (Benzodiazepine-induced neurological dysfunction) refers to the symptoms that can last months or years after the drug is discontinued. These can include:

Anxiety, fear, cognitive dysfunction, akathisia, G-I disorders, tinnitus, muscle pain, tics and tremors, neuropathies, etc. 

BIND is about the neurotoxicity changes in the body, on the CNS and peripheral nervous systems. effects can last much longer than withdrawal. BIND can occur during drug use, but most frequently after the last dose and can last months or years.

“Benzodiazepine-Induced Neurological Dysfunction (BIND) is a constellation of functionally limiting neurologic symptoms (both physical and psychological) that are the consequence of neuroadaptation and/or neurotoxicity to benzodiazepine exposure. These symptoms may begin while taking or tapering benzodiazepines, and can persist for weeks, months, or even years after discontinuation.” More on BIND:

https://tinyurl.com/2ea6dfhv

Doctors have been taught that the complications of benzodiazepine use are only acute, self-limiting withdrawal symptoms. So the symptoms they know to look for are the typical withdrawal symptoms of hallucinations, tremors, and seizures, and they only last for a few weeks. Doctors have never been taught to look for the other symptoms of BIND, or that those symptoms can last months or even years. 

Many organizations are currently actively publishing research to increase awareness of the reality of BIND.

Protracted withdrawal refers to symptoms that linger after 18 months off the drug. The protracted group remains relatively small, thankfully.

After weaning, I’ve been off the drug since Nov 1, 2022, which is 25 days as of this writing. Now I’m going through the so-called “acute phase,” after the drug is completely discontinued, as so many systems of the body are trying to readjust and heal.

Benzos downregulate the GABA system, which impacts the brain and central nervous system, GI tract and muscles. So while taking them, as well as during withdrawal and the acute phase after discontinuation, the effects of benzos continue to alter the brain and the functioning of nerves that feed vital organs, the muscles, digestion, etc. 

This acute phase often lasts anywhere from 3-18 months. People often have symptoms of dysfunction of just about ANY bodily function, and often many at once.

I’m being hit right now with incessant nausea, bouts of violent itching all over, feet on fire. The nerve pain from every small movement, the bouts of sobbing. And this is par for the course, as I’ve talked to many others going through this.

Apparently, there has been very little medical research done on benzos since Dr. Ashton’s work first published in 1999. Big Pharma isn’t interested in them anymore, as they’re not blockbuster drugs as they were decades ago.

So it’s heartening to see independent research being done in the various online support groups, and people sharing insights from their personal experience with these drugs. Connecting with those resources has been lifesaving for me.

“After a long and difficult ten years I believe it’s now time to try and explain my journey to all those who disbelieve that a low dose of a prescription drug given to me fifty years ago for sleep could possibly cause so much suffering for so long.”
-Beating Benzos http://beatingbenzos.com

It can be very challenging to find good information about these drugs, especially when doctors are advising people that small doses taken as needed won’t cause problems. 

Benzo-aware practitioners are few and far between, and often charge high fees for telemedicine consults that are not covered by insurance.

It IS possible to manage even a difficult benzo withdrawal without direct professional help. What I used:

1. The ASHTON MANUAL. By Dr Heather Ashton.
2. Personal tapering protocol provided by the owner of Beating Benzos group (see below).
3. A doctor who is willing to prescribe the amount of the drug needed for tapering.
4. A lot of research and help from online support group

Here are some resources I found helpful, including discussions of how to explain to others what’s going on.

YouTube audio to help family and friends understand what is happening to the person in benzo withdrawal.

Part 1:

Part 2:

Akathisia in benzo withdrawal:

Information clearinghouse for info about benzos and withdrawal:

http://beatingbenzos.com

The website owners also have a private Facebook group for benzo withdrawal. Besides discussion, this group includes a wealth of information about every aspect of the process.

The administrators will provide private, individualized tapering schedules, free of charge.

Search for Beating Benzos group on Facebook.

Other excellent sites:

http://benzoinfo.com

http://benzobuddies.org

Books:

Your Drug May Be Your Problem, by Dr. Peter Breggin
The Waiting Room, by Jennifer Swantkowski

Many more on Amazon

This post is just an outline of the tapering process and a little about my personal experience with it, since I’ve been asked about how it’s done.

Benzodiazepine withdrawal for many people is agony, plain and simple, mentally and physically. The list of possible adverse effects from withdrawal of the drug and the way these symptoms mimic other serious illnesses is staggering. The various types of adverse effects are difficult to sort out – there is tolerance withdrawal, inter-dose withdrawal, and symptoms that are part of the body’s attempt to readjust and heal. 

Having been chronically ill and debilitated most of my adult life (50 years), with severe symptoms that have been poorly understood medically and largely misdiagnosed.. Recently I’ve come to the shocking realization that probably most if not all of my symptoms can be traced to benzodiazepine withdrawal. 

Once I had the proper information, I knew I had to commit to a new tapering process that I had never known how to do before. Even as knowledgeable as I’ve been about drugs, there was so much I didn’t know about how to get off these drugs safely, and it took quite more research to put the program together.

Some people have a relatively easier time of withdrawal, but for many it can be brutal for an extended period of time – weeks or many months. Symptoms can remain for years. But generally, with proper tapering done systematically according to guidelines, people can heal.

Tapering properly with the least discomfort possible is always a challenging navigation. The person’s own individual responses are the most important considerations. But there are good guidelines that provide essential support. For me, the process is a bit more complicated because of the way that I took the drug before. First, a bit of background.

The gold standard for methods for withdrawing from benzos safely is the Ashton Manual. Dr. Heather Ashton was a British psychopharmacologist and physician, known for her clinical and research work on benzodiazepene dependence.

The manual is available as a free PDF online or Kindle book. (I’ll provide details in a future post on Resources). Unfortunately, most doctors prescribing benzos are unaware of this information and have no idea of the importance of tapering off these drugs in a very systematic way. The drugs are given with no proper plan for safe tapering beyond just taking smaller doses or going cold turkey. 

Quitting cold turkey can exacerbate symptoms and can actually be very dangerous. 

The kindling effect has been described in the literature as the way the nervous system remembers a previous cessation of the drug, even years later, which often results in an even more severe withdrawal experience the next time withdrawal is attempted. In other words, if you took benzos years ago but didn’t taper properly, you might still be having adverse effects from that (misdiagnosed as a different ailment), and if you take benzos again you will likely experience a more severe withdrawal.

SAFE USE?

As of 2020, there is a new FDA black box warning for these drugs. They should never be used for more than 2-4 weeks at most, and then should be tapered. But there are no guidelines given by the pharma companies for safe tapering.

In my opinion, the drugs are never safe, and it’s easy to become complacent that you’re taking them only “once in a while” which “shouldn’t be a problem.” It’s a very slippery slope that even the most savvy user is subject to.

So I studied the Ashton manual and have consulted with many professionals and patients who have experience with proper benzo withdrawal. That’s where my tapering journey begins.

Previously I was taking Valium sporadically for decades, sometimes Oxazepam (Serax) which is a shorter acting benzo, and in fall of 2021, a month of Ativan, another relatively short acting benzo. But only very low doses and only at night for sleep, never every night. 

FALLACY #1:

Intuitively we’d think that taking these drugs only when needed and as infrequently as possible, is the best way to minimize adverse effects. Wrong! I discovered recently, only from deep digging into the literature, that taking these drugs erratically means you are going into withdrawal on a regular basis and potentially (usually) suffering adverse effects from that.

Most people don’t realize that if they’re taking a benzo only sporadically, they’re probably in benzo withdrawal much of the time. They also don’t realize that such withdrawal can mimic the symptoms of a multitude of chronic illnesses. 

So this means that taking a benzo sporadically can likely account for many of the chronic symptoms that people experience.

FALLACY #2:

It’s generally believed, even among doctors, that shorter acting benzos are safer because they are eliminated from your body faster. That seems intuitively correct, but it’s false. The shorter acting benzos, such as Xanax or Ativan will leave your body faster than a longer acting benzo like Valium. But the drug acting for a shorter time means you may go into withdrawal sooner. In other words, if you don’t take it every day, or at a frequent dose needed to maintain an even blood level, you may experience withdrawal symptoms much sooner than you would with a longer acting benzo.

So it’s strongly recommended that before trying to taper off, you should switch to a longer acting benzo if you weren’t taking that to begin with.

The Ashton Manual describes this process in detail and provides proper protocols for tapering safely from each particular benzo drug. 

The general guideline is a 5-10% decrease in dose every 2 weeks, which has to be adjusted along the way according to individual responses. This tapering schedule assumes that the person has been taking the drug every day, so they have a consistent blood level, and can begin tapering from there. 

Most doctors prescribing these drugs are not “benzo-aware” and aren’t familiar with the Ashton Manual or how to advise patients to use these drugs and wean off them with a systematic tapering protocol.

MY EXPERIENCE 

In other reports I’ve detailed my history of using benzos as prescribed, sporadically over the decades. I never tapered in the past, just stopped taking them many times, and when I was taking them, I used very small doses sometimes once a week. Doctors always assured me that this was safe! It wasn’t.

In fall of 2021 I was given Ativan which I took every few nights for a month. I had the most painful and torturous symptoms of my life as a result, although I didn’t know it was from the drug at the time. But suspecting that the drug was causing some of the trouble, I went back to Valium, again sporadically. 

I have been very ill ever since, and could possibly still be in withdrawal from the Ativan even a year later, not to mention all the Valium.

I have only taken these drugs for respite – when in agony, when the desperate need for sleep seemed to outweigh any possible adverse effects, when NOT taking a dose seemed cruel and inhumanly punishing. When all the other possible sleep aids never helped, and there weren’t any safer options.

The last month of the Valium taken this way, I had it at night for 14 nights out of the month. So I was in withdrawal all the time, I now know. I had to get on a regular taper schedule, but I didn’t want to dose every single night which for me would mean taking even MORE than before (updosing.)

I contacted a benzo withdrawal expert in England who provides individualized tapering plans as a service free of charge. My schedule is a 5% decrease every 2 weeks or according to how I’m responding to it.

I started by dosing every 2 nights, as an average of how often I was taking it before, so I wouldn’t be taking it even more often. Because of Valium’s long half life, that could possibly be often enough. But I wasn’t doing well with every other night, going through horrific “inter-dose withdrawal” symptoms. So we decided that I should try splitting the dose so I’m taking half dose one night and half the next, to keep the dosing and my blood level of the drug even.

Adjusting to that dosing has been a rollercoaster, but I’m hoping things settle out soon. I need to play by ear how long to stay at each taper dose before decreasing again. 

Because I started at a relatively low dose, my tapering plan won’t take as long as some. Generally it’s best to go as slowly and gradually as possible. You feel like you want to be rid of the drug as soon as possible. But to taper faster than your body can adjust and heal would be sabotaging the healing process and prolonging the agony of withdrawal symptoms.

More reports to come.