The Nonlinear Nature of Recovery from Benzodiazepines
In the process of BWS, whether you’re tapering, post acute, protracted, or on your way to making a full recovery, it’s safe to say that there are (relatively) good days and bad days. In my experience of recovery, I’ve had symptoms go to be replaced by new ones. I’ve had the pendulum swing from physical exhaustion and crushing fatigue to revved up tweaked out adrenaline mode and I’ve had waves creep up on me after I thought the waters were still. And, I’m not the only one. This is a common complaint of just about everyone who is an active member of benzodiazepine support groups, forums, and on Facebook that I have seen. The reasons are unclear, but the road to recovery can be a very bendy, twisty, windy one.
1. Not in a straight line.
Though, there are those people who feel better as they progress; and then there are some unfortunate souls who just feel crappier. Either way, the goal is the same: to recover. Know you are blessed with any day of relief, even if relative – but don’t even get me started on the really bad days. Those “waves” of symptoms that just seem to hit out of nowhere, or are sometimes provoked by stress, hormonal fluctuations, maybe eating something that disagreed with me or was stimulating, etc.
Stimulation is Stimulation -
Sometimes, there is no explicable reason for this. (Yet? Research? Where art thou?!) Other times, it can be brought on by any sort of stimulation. There are two types of stress that can be put on the body; Distress, which is bad stress. Stress of losing a loved one, losing a job, being stressed at a job, problems in a relationship, maybe your body is adjusting to a new diet, maybe you overdid it on the treadmill, or your hormones are changing, menopause, pregnancy, the list goes on and on. With a hypersensitive CNS, this bodily stress can be harder to cope with; the nervous system is adjusting to cope with just the state of living in the moment – pushing that limit can be like irritating healing wound. It’s even harder to try and control this kind of stress. But even too much “good stress” or “Eustress”– getting a new job, getting married, having a baby, and other happy things, can be stimulating to the recovering down-regulated CNS too. I’ve had symptom surges just from laughing too hard! In both Eustress and Distress, stress is stress, and the CNS can remain susceptible to shocks of either kind of stresses for a while.
When I’m waving out like a tsunami, I often feel really discouraged, no matter the reason. Sometimes there is NO reason. At all. Feelings of hopelessness creep in. It’s easy to let your mind run away with your thoughts– the plethora of symptoms associated with the benzo withdrawal syndrome can mimic many other health problems. Hypochondriasis – thinking you have every disease in the book and Dr. Google is certain the prognosis is poor — is actually a common symptom of benzo withdrawal. But try not to let this happen or obsess needlessly. It’s a pretty maniacal syndrome, and obsessing about a symptom in the absence of another health condition as the cause is counter-productive.
On “better days,” we tend to not fixate on all of the suffering we’ve endured; we usually do not think about the plethora of symptoms we’ve gotten hit with all at once. We are collectively a resilient group of people who have gained varying degrees of wisdom and strength from going through benzodiazepine withdrawal. On those good days, perhaps it is an innate protective coping mechanism to not dwell on the negative or bad waves. The brain might just be programmed to forget pain. However, it’s important to not over-do it or push ourselves; rather, not take these days for granted and just take it easy. To appreciate a bird singing or the sun shining– if we can tolerate it, we appreciate it. And, this is part of the philosophy that I try to live by.
Unfortunately, life does not slow down just because you’re going through benzodiazepine withdrawal or tapering your benzo. And this is often how we learn to cope without benzos
Functional brain changes after benzodiazepines adjust and recover in what seems to be a different way than say, scraping your finger where you clean out the wound, bandage it and wait for it to heal “in a straight line”–getting better and better everyday.
Some injuries, such as a traumatic injury to a limb, or the extraction of a tooth, etc. may hurt a lot at first. The swelling may come to a climax a few days after the initial injury and then heal in a linear fashion thereafter.
But this is often not the course of recovery from benzodiazepine withdrawal; from my experience and research, it’s often not the course of recovery from withdrawal of many other types of medication withdrawal syndromes, either. These drugs and substances change the brain’s functional mechanisms and recovery from them waxes and wanes as the overall healing process takes place. It’s important, at this time, to always remember that benzo withdrawal recovery is not always linear, and that sometimes it feels like we take two steps back whenever we take a stride forward.
This phenomenon of the benzodiazepine withdrawal syndrome is well documented:
The Ashton Manual describes the nature of this “nonlinear” recovery process; offers encouraging words of clinical experiences with a good prognosis
“During benzodiazepine withdrawal, symptoms characteristically wax and wane, varying in severity and type from day to day, week to week, and even during the course of a day. Some symptoms come and go; others may take their place. There is no need to be discouraged by these wave-like recurrences; the waves become less severe and less frequent as time passes. Typically “Windows” of normality, when you feel positively well for a few hours or days, appear after some weeks; gradually the “Windows” become more frequent and last longer, while any intervening discomfort ebbs away.
It is impossible to give an exact time for the duration of withdrawal symptoms. It depends on where you start from, how much support you need and receive, how you manage your taper and many other factors. With slow tapering, some long-term users have virtually lost all their symptoms by the time they take their last tablet, and in the majority symptoms disappear within a few months. Vulnerability to extra stress may last somewhat longer and a severe stress may – temporarily – bring back some symptoms. Whatever your symptoms, it is best not to dwell on them. Symptoms are just symptoms after all and most of them in withdrawal are not signs of illness but signals of recovery. Furthermore, as your mind clears, you can work out more and more effective ways to deal with them so that they become less significant.
One reassuring finding from many clinical studies is that eventual success in withdrawal is not affected by duration of use, dosage or type of benzodiazepine, rate of withdrawal, severity of symptoms, psychiatric diagnosis, or previous attempts at withdrawal. Thus from almost any starting point, the motivated long-term user can proceed in good heart.”
– Chapter III of Benzodiazepines: How they Work and How to Withdraw by Professor C. Heather Ashton, DM, FRCP (U.K.)
Never forget that there is support.
Today we will not turn our heads and look away.
Of the sizable minority of people who have a very difficult time either tolerating or discontinuing benzodiazepines, there is a significant minority of people whose benzodiazepine withdrawal syndrome is reported to last a considerable amount of time long after complete cessation of the drug. As in years– yes, years.
It is believed and widely accepted that the reason for this may be that the medication (benzodiazepines) has down regulated, or otherwise changed the GABA-a receptor sites and that these particular receptor sites can take a considerable amount of time to begin to function properly on their own again.
Some of the Google searches that direct people to this blog are sometimes searches that go a little like this: ”benzo withdrawal + can it last years?”and “why am I still sick years after benzo withdrawal?”
It’s a very scary notion, and many people do not want to fall into that category, so these people that are protracted; those unfortunate souls who suffer for quite a long time, often retreat and do not reach out much, but it does not mean that those people do not exist! It means that these people often suffer silently for the sake of others. Does it mean that their symptoms stick around in their acute form for years? Usually, no. Not from what I’ve seen. Improvements are reported by protracteds that I’ve spoken to on a long term basis, usually in a non-linear fashion with two steps forward and one step back, perhaps due to a raw central nervous system struggling to cope with stress, which is unavoidable in life. Understandably, no one undergoing benzodiazepine withdrawal wants to be protracted for weeks, months, and especially not years. So those people who are sick for years often do not reach out, or speak up. Sometimes, protracted people have reported that they have just run out of things to say; the long term convalescent period that sometimes follows the benzodiazepine withdrawal syndrome has the potential to precipitate complacency.
This phenomenon has been reported with other psychoactive medications
Particularly SSRIs such as Paxil, Effexor, Zoloft, Celexa, Prozac, and more, and also antipsychotics such as Seroquel, Zyprexa, Geodon, Risperdal and especially the older A/Ps suchas Haldol and Thorazine. Abilify seems to be a drug that is highly associated with long term adverse effects from what I’ve seen and heard.
To drive home my point of this particular post: In the five or so years I’ve been stuck in the benzo abyss, I’ve come across a very small minority of people who were still having benzo withdrawal symptoms at two or more years off of the drug. When I asked some of these folks why they are not more active within the support communities, their answers are actually quite selfless and almost stoic in a way:
People who claim to be in protracted (prolonged) benzodiazepine withdrawal long after cessation of the drug, and in the absence of other health conditions to explain their symptoms, often tell me that they suffer silently for long periods of time because….
- They do not want to scare others who are still tapering.
- They feel that their efforts to talk about their symptoms has become redundant.
- They’ve been called names and been accused of being “toxic” to others.
- They feel that there is nothing left to say.
- They have feelings of alienation.
- They cannot relate to people who are doing much better.
- Protracted withdrawal support groups actually cause some of the protracteds a great deal of anxiety; they themselves do not want to believe that they may possibly still have years of symptoms ahead of them
- Sometimes, they’re just too sick and weary to reach out anymore.
…and more, those are just some things I’ll recall and compile off the top of my head. Like I mentioned in the list, there are support groups for people in protracted withdrawal, but they are not very active, and a good portion of the existing activity is trying this or that to help speed recovery along. I hope, if they find something that works, that I can be one of the first to know, so I can write about it here!
It’s a tragedy that these people can’t reach out, but I can’t say I blame them. For example: Person A may be still be feeling very sick with benzo withdrawal symptoms and his doctors can’t find anything else wrong with him after 5 years, but Person B is only on year 2 and still having benzo withdrawal symptoms, and does not want to face the possibility that he or she may end up like Person A.
The BWS Blog will have a Page in the Resource Menu designated to Personal Stories and other resources for and of Protracted Withdrawal Syndrome cases in the future. It will be a compilation of stories of people, with their permission, who claim to be living the nightmare of the PWS associated with benzos and/or antidepressants. It will contain research, information and media material for the purposes of resourceful information designated to this special faction of people. The purpose is to get the word out and also for these people to be able to know that at the very least, while uncommon, they are not alone.
Danny R. has volunteered to share his story of his experience in Protracted Withdrawal of benzodiazepines. I do not know of Danny’s medical history, but the symptoms he experienced upon benzodiazepine withdrawal are taking much longer than the average person to recover from, years after discontinuing his benzodiazepines.
This is the Plight of The Protracted.
“I set up and belong to a few other support groups for those affected by being prescribed benzodiazepines and the enormous difficulties many face upon cessation of these drugs. Many of the people in these groups have had extremely debilitating , distressing and emotionally + physically painful symptoms. Often these symptoms, can last for a very long time indeed, for 3, 4, 5 years or rarely even longer. Today I have seen several people post in these groups about loss. Loss of long term partners and even loss of children. The strain placed upon loved ones is absolutely enormous. Although they don’t endure the condition in the same way, they still have to face the emotional roller coaster of having a partner, sibling, parent in total torment where the affected person is unavailable to offer a normal loving relationship. Just to get thru to the end of a day is a minor triumph for most with protracted withdrawal syndrome, leaving little room or energy for being there for others. Due to the very complex healing process, where many can show slight improvements for a day or a week or so, only to get slammed back into an even worse state can be very hard for others to come to terms with.
Being unable to take care of your family on a financial level, or be able to go places together, to enjoy each other, to do anything that will leave happy, contented memories of your shared life, to have to place any plans or important events on hold for an indeterminate period until the time you are well enough, is like a psychological endurance course. An exquisite kind of torture.
And to know that in most cases of PWS, it could have been avoided or at the very least, greatly diminished, by doctors following guidelines set for the prescribing and the reduction/cessation of these drugs is like a daily slap in the face with a sledgehammer. Especially when many doctors, at grass roots level, have the effrontery to deny the possibility of the condition against current accepted medical fact. Against thousands and thousands of published articles in reputable journals. Then for most of these doctors to then cause further damage to the delicate neurotransmitter brain systems by prescribing different psychtropic medications, due to the erroneous assumption that the syndrome is a return to an underlying psychiatric condition, is further malpractice. A doctor has to give an oath that ‘First do no harm’…unfortunately, the vast majority of GP’s know next to nothing about these extremely potent, life changing, chemical destroyers of life and do untold harm. Harm almost beyond belief.
I guess there is a place for psychotropic medications in certain circumstances but from my perspective of having lost 4 years to the aftermath of a valium prescription, I struggle to see where that place is.”
The overall condition of health in the two people on longterm Xanax therapy featured in this video is very obviously poor. What do they both have in common? Long-term use of benzodiazepines.
In the introduction to this video news report, the media catches the public eye by mentioning that Heath Ledger, Michael Jackson and Whitney Houston had Xanax (alprazolam) in their toxicology reports post-mortem. But in my opinion, that’s not quite as catching as the apparent state of mental and physical health (or lack thereof) of the individuals featured in the video who are still on Xanax. Those who are “addicted” (perhaps physically dependent) upon the most popular benzodiazepine in Australia and the U.S.
Dr. Ahmed is quite concerned about his patients who’ve found themselves stuck on this medication and is struggling to help them off, because past attempts of trying to come off has caused them to “go completely mad,” in the words of Danielle. In Aussie slang, that means they lose their mind.
“Danielle Hannan was a striking Sydney socialite; a fashion model who spoke three different languages,” explains the narrator of the brief documentary. “…About ten years ago, a doctor prescribed her Xanax for her anxiety.” The camera then pans from Danielle’s lovely photos from a fulfilling life past, to how she looks today.
The narrator continues, “Look what it’s done to her.”
I’m no doctor, but I know as well as any informed patient that Xanax has an ultra short half-life, and it’s very potent. Think about it: Only one thousandth of a gram of this chemical can drastically alter your brain’s ability to stay conscious. It hits you hard, and it leaves you harder. When I found myself dependent on Xanax, I did not crave the “high” it gave me; I craved relief from the torturous rebound anxiety symptoms that it caused when my body became tolerant to it. I craved it because after a few hours (I have a fast metabolism) I was experiencing withdrawal symptoms, including loss of balance and vertigo, between my doses. So I understand why Danielle needs a cane just to walk into her doctor’s office. There’s some of the hallmark differences between a psychological addiction to, and a physical dependence on, a drug that perhaps the patient in question is not tolerating very well anymore. I don’t think Danielle wants to live this way. It’s just that Xanax is so very hard to taper off—even if going slowly—due to its high potency and short halflife.
Someone dependent on this drug can experience withdrawal effects between dosages once tolerance is reached. This is known as “interdose withdrawal,” an unofficial but common term for this phenomenon. When the narrator of the news story inquires about Danielle’s Xanax problem, Danielle explains: “Well, I get up in the morning (…) and if I haven’t taken even half, I’d be hallucinating.” So she goes all night without a dose, and by the time she wakes up, she’s in withdrawal again.
It’s a step in the right direction when a Psychiatrist can recognize this; however, I wonder if Dr. Ahmed is aware that Danielle’s interdose withdrawal problem could be remedied by crossing her over to a benzodiazepine with a longer half life of elimination. From a point of such stability, he may even discover that he could taper her off without her “going completely mad,” provided he tapers her slow enough for her desensitized GABA receptors to adjust and work on their own again without the drug.
Later in the news story, a patient whom is not under the care of Dr. Ahmed, Daniel P. is interviewed. He reportedly has a history of abusing his Xanax, so his prescriptions are now strictly controlled, and he is only allowed to have one Xanax per 24 hours. When those 24 hours draw closer, Daniel begins to experience interdose withdrawal symptoms.
This is Daniel P. prior to how longterm Xanax use affected his mental and/or physical health, married and employed.
This is Daniel P. today,
alone, divorced, and anxiously awaiting his next dose of Xanax and experiencing a rebound panic attack, most likely due to interdose withdrawal. Remember, Xanax has a very short half-life, so it leaves your system as fast as it hits. And its duration of action is even shorter. It is this reason, along with Xanax’s high potency making the pills very difficult to make small cuts to, why Xanax is known to be more difficult to withdraw from than other benzos. However, benzo withdrawal is benzo withdrawal to those minority of people who develop a severe dependency on the drug, or perhaps a severe psychological addiction to it, no matter what benzo has gripped you. Daniel P. believes it’s a mental thing, as he so states during his interview; however, is he craving the drug to get high or is he craving it to bring relief from his withdrawal symptoms between doses?
At 07:17 minutes of the video, Daniel P. appears to have what looks like, is an absence seizure; this is after he mentions that he has once “fitted” as a consequence of Xanax withdrawal. In Aussie slang, “fitting” is another word for “seizing.” Now I don’t know if this “blank out” was an actual seizure or not. But it sure looks like one. Daniel comes out and says that he not only hallucinated from Xanax withdrawal, he has also experienced a seizure. And I’m not sure if he’s even aware of it or not, but at 7:17 in the video, it appears to me that he is experiencing some kind of altered state of consciousness which he may not even be aware of. You can tell when he “blanks” out, starts talking about a “visitor?” and his eyes do a typical seizure roll. Absence seizures can be very brief like that, and the person suffering them often does not realize when they happen, and they do not remember the odd behaviors when they do occur.
I wonder if Dr. Ahmed recognizes this in Daniel P. during his interview; and how often he sees this in his patients who are long term users of benzodiazepines who have become tolerant to them to the point of having withdrawal symptoms, despite not even reducing their doses of benzodiazepine. I wonder how often it happens and goes unnoticed or perhaps is brushed off.
The news story also discusses how pharmacists now carry guns to protect themselves from drug seekers. Unfortunately, some drug seekers are desperate for the drug due to the benzo withdrawal syndrome. Not everyone is a psychological addict to these drugs. Additionally, the news story discusses something particularly associated with Xanax overdosage (or overdosage of any benzo, really): blackouts. It’s too easy to do. You get stressed out over something, take a “little extra,” and you wake up the next day in a jail cell like Nicole in the video, charged with manslaughter for accidentally killing someone while you’re driving under the influence of too many benzodiazepines. I’m guessing she was not one of the quite unfortunate minority who found their bodies terribly dependent and/or addicted to the drugs, as a cold turkey off of benzos could be fatal—-in jail, particularly scary.
To conclude – the most important topic that gripped me in this news story was not how addictive Xanax (and other benzos) are; it was not the sensationalized deaths of celebrities or how people can develop a psychological addiction. It was the obvious, debilitating decline in both mental (anxiety, hallucinations, dementia) and physical (balance problems, seizures) health in people who find themselves hooked on these types of drugs.
And because benzos with ultra short half-lives leave the system so harshly, why not cross these patients over to a benzo with a longer halflife to ease the withdrawal symptom acuteness and increase the chances of successful discontinuation? Why do so many doctors taper their patients too quickly, not understanding that benzo receptors can take months or even years to re-adjust to baseline pre-drug levels (heal)? That when a patient is having a particularly bad rough patch, to allow them to hold or take a break?
And the protracted withdrawal syndrome – why get hung up on the nomenclature? Or worse, deny its existence? Perhaps, some doctors are unaware of its existence. The YouTube video has some controversial comments of long term benzo users who haven’t seemed to have a problem with the drug—yet. There are just some people, approximately 33% of people (see below emboldened paragraph) who use benzos for longer than eight weeks, who become sick while on the drug and have a very difficult time coming off of it.
Truth: many people do not develop such a severe dependency on these drugs, but it is not a risk that one should take lightly when deciding to take this drug for longer than a few weeks.
According to one of the Psychiatrists interviewed in the video, up to 1/3 of those involved in the Clinical Trials of Xanax were unable to discontinue it after only eight weeks of daily use. That would be an estimated 33% of people.
Perhaps those of us affected by these drugs in this way are a minority, but it doesn’t mean we do not exist.
This is the real problem, in my opinion; a problem much bigger than the addictive properties of the drugs.
I hope Dr. Ahmed has acknowledged this as well.
The million dollar question: Can benzodiazepine withdrawal symptoms be permanent?
****This post is very lengthy and will probably be updated and revised periodically from time to time, as this is truly an important question, and any new research on the topic of this question must be up to date. Additionally, a staggering many of people find this post while researching lingering symptoms of withdrawal syndromes from psychiatric medications and drugs, and are directed here by search engines. This post was last revised November 5th, 2012.
This is a very broad question, with no straight answer—-yet.
The reason why the answer to this question could be worth millions of dollars is because everyone wants to know, but no one knows.
One would think the value of the answer to this question would be a great incentive for some research, but what physician wants to trace the crux of the problem back to their own prescribing practices? Perhaps we need unbiased scientific research done in the form of a longitudinal study on people continue to have clinically significant withdrawal symptoms several months after their last benzodiazepine (or anti-depressant, as many Google searches the direct people here are searches related to prolonged withdrawal symptoms after discontuniong antidepressants and other types of medications taken longterm). First, the protracted withdrawal syndrome awareness needs to be acknowledged; and prior to that, some medical professionals are actually unaware of the benzodiazepine withdrawal syndrome itself.
Would a Study Be Helpful or Just Waste more Time and Money for Conflicting and Inconclusive Results at the expense of people’s entire natural lives?
So, I suppose that’s where one could certainly start; however, there would be some ramifications of such a study, including but not limited to the following:
- A longitudinal study would have to have willing participants: who would want to participate in a study to see if a commonly prescribed medication will permanently damage their brain for the rest of their natural lives? I could imagine the PR for recruiting particpants on that one: ”Hey! We need to find out if this commonly prescribed drug will give you permanent brain damage.”
Animal Studies: Studies like this on innocent animals who are nothing like us mentally would definitely NOT apply here, because simply, animals are not humans. Though similar, other animals have species-specific and unique anatomical and physiological defense mechanisms for stress. Plus, it would be cruel and downright abusive to the animals.
- Science itself is imperfect and results of studies with so many variables are often inconclusive, because the so-called modern human race is just not yet evolved enough to consider many variables involved; nor are many of the relevant variables to be considered even understood. For example, women often mention that their menstrual cycles affect their withdrawal symptoms. How can we determine what role this plays in drug-induced physiological occurrences in the body when we don’t even fully understand reproductive hormones? If the answers were always the same, then there would be no such need for science, as we’d already have all the answers by now, now wouldn’t we?
- Special interest groups: these are not just for political parties. Who would fund the studies, what bias might they have and what would they get out of it?
- Inconsistency: Pull up a fine-tuned study on a single topic that’s been studied more than once and I guarantee you will find conflicting conclusions. And don’t forget! Everyone responds differently to medication.
- Any conclusions or discoveries on the subject certainly won’t help anyone wondering about permanent damage from benzo withdrawal now.
The Solution Might Be to Recruit Human Participants who are already Dependent
Sign me up!
But then, again – Who would pay for it? What would the bias be? How accurate would the results be? And what about those things that benzos affect in our bodies that we still do not yet understand?
Therein lies a problem with such an expensive potential study.
So other than that, what do we have to work with? Well, take a look around. What we have are at the very least, 30% of the English-speaking population regularly using benzodiazepines suffering from their adverse effects, tolerance, rebound problems, and the effects that long term use of benzos have on the brain and central nervous system—and are aware of it. There are probably a lot of people out there who are completely unaware that their benzodiazepine might be contributing to their mental or physical health problems. As far as high specificity studies, the closest we can get to this is something along the lines of what Professor C. Heather Ashton did — she ran a benzodiazepine withdrawal clinic and observed, studied and documented the experience for over a decade. However, this has never been replicated, and her protocol doesn’t suit everyone– in her book, she mentions that one of her patients could not tolerate a crossover to Diazepam and tapered this individual off of Lorazepam using 0.125mg decrements.
Two interchangeable words with a similar meaning, but a very different stigma attached to them:
“Changes” and “Damage“
The first thing you need to be informed of, before doing any type of research on whether or not a chemical, drug, compound, whatever, can damage any part of the human body, is what kind of changes the chemical creates within the body, and whether the changes are good, bad, benign, temporary, permanent or semi-permanent.
What we do know about benzodiazepines is that they change (alter) the GABA-a receptor site. Taken in isolated, infrequent dosages, the receptor site often returns to its normal function after the drug halves itself out of the body via its half-life of elimination. Taken regularly, however, and the receptor site may not return to its normal function right away. This is how dependence occurs, and the rest of the downward spiral of becoming hooked on benzodiazepines ensues, and in many people, a staggeringly gradual taper and recovery takes place when the patient and doctor decide to discontinue the drug.
I often get asked the question – why not just cold turkey and sweat it out and then return to real life a few weeks later, all clean and sober? Well, because it’s not only dangerous, but removing the drug after having become dependent upon it doesn’t fix the problem that the drug caused: an abnormally functioning, down-regulated, altered GABA-a receptor site in the brain, which can take a considerable amount of time to return to its normal level of functioning.
In fact, in a sizable minority of people affected by the benzo withdrawal syndrome phenomenon, it’s taken a shockingly devastating lengthy period of time for the function of their GABA-a receptor sites to return to their normal function; otherwis commonly referred to as the “Protracted Withdrawal Syndrome (PWS)”. Notice I used the terms “shockingly” and “devastating” when I mentioned this; why? Well, if you broke your leg and had to spend your entire summer in crutches, would this not be shocking and devastating to you, as a month or so of being sick seems like a very long time? Well, many people’s GABA receptors take far longer than a month or so to recover back to its normal functionality. I’d say that’s pretty devastating, but that’s just me… and when people first research this and discover that it is a possibility, they’re usually pretty shocked, too.
In terms of pharmacokinetics, the alterations in the receptor site was dubbed as “down regulation.” These terms – “down regulation,” “alteration,” “agonist,” are seemingly benign words. But when the down regulation has a long term negative impact on the receptor site in question, in my opinion, it could just be described as “damage.” Now, don’t let this scare you; the word damage has a negative stigma associated with it, because when you think of damage, you think of physical trauma, the total loss of a car or structure after an accident or natural disaster. However, changes that occur within the GABA system as a result of down regulation, as you can plainly see and hear from personal accounts of people who’ve been there and done that, the damage is not physical, but functional; the function of the receptor site is not working normally as it used to and often requires time to return to normal. Ashton attempts to address this as briefly as possible in her 2011 supplement to her manual on the protocol for benzodiazepine withdrawal, but since so many people are years away from their last dose and still have some things lingering or experience a decreased tolerance to stress since having a benzo dependency, Ashton herself is not quite sure whether some things could be permanent. That said, in all my research, observation and experience of nearly six years in the “benzo withdrawal support group” communities, I have never heard of anyone experiencing benzo withdrawal symptoms in any severe or life-limiting form or fashion beyond 4 or 5 years. Most often, I hear people complaining about this or that little thing in the background, and at worst, I’ve heard of people getting thrown back into a bad state of what feels like benzo withdrawal after suffering from some kind of extremely stressful life event or having some severe adverse reaction to a drug. Because people can be sick for years, however, I wouldn’t hesitate to wonder if the “changes” or “damage,” whatever you want to ‘call’ it, to the GABA system might be semi-permanent, or perhaps have some permanent, lingering, minor and benign ramifications. So I can see where Ashton is raising her eyebrow and, well, seems quite disappointed in the lack of research into this issue. Her’s and other experts who’ve studied the benzodiazepine withdrawal syndrome phenomenon’s life work has been shrugged off to a lot of ignorance. The chronic down regulation of a neurotransmitter receptor site to the point of the site becoming desensitized and/or shutting down or otherwise not working properly, is, in my opinion controversially referenced. Personally, I’d call it how I see it: “damage.” Permanent damage? I don’t know, as chemical induced “changes” to the brain cannot be seen with imaging equipment or otherwise be measured like you would a brain injury sustained by physical trauma. So we can start out by separating chemically induced “changes” from physically induced “changes” and not fear the word “damage,” as the word damage may sound scary, but it is subjective– when you willfully puncture your skin while getting a tattoo you are essentially damaging your skin. But it will heal.
Do you go around saying that you’ve damaged your skin when you get a tattoo?
Or do you go around saying you’ve changed your skin?
If you say either, are you aware that the puncture wound will heal?
I have much more to say on this topic, but for the purposes of this post, and to keep things as brief as possible, we’re not going to focus on the nomenclature of words.
The changes or damages to the GABA system (or the fluffier, less scary euphemisms like “down regulation”) is a post for a whole other day.
Few professionals even attempt to explain the PWS when they recognize it.
But as far as debating whether some symptoms can be permanent, there are some theories, notably by those medical professionals who have dedicated their life’s work to the syndrome. And then you have your people with their opinions, like myself. Professor c. Heather Ashton, for example, who periodically makes updates and supplements to her Manual mentions that she has patients complaining of lingering, but often vague symptoms.
Because the protocol for benzodiazepine withdrawal differs among medical professionals and facility to facility, for those people who have severe dependencies on the drug, and require a much slower taper than what some doctors may recommend, these exceptional 10% – 30% of benzo users rely on the Ashton Manual and some may even need to go slower than that. e.g., perhaps according to Dr. Reg Peart’s schedule, or perhaps even slower than that. As many well have discovered, one person may tolerate a taper faster than another. And the estimated 10% – 30% of benzo users who are having a hard time tolerating a drug that they may or may not be coming off of, does not include those patients who have no idea that the benzo might be making them feel sick or having an adverse effect on their mental/physical health, and often, their physicians may fail to recognize it as well.
In the April 7, 2011 supplement to the Ashton Manual, Ashton attempts to address the issue with her own theories.
First, she differentiates structural (how the brain is physically structured) abnormalities in chronic benzodiazepine users versus functional (how the brain functions) abnormalities. They are unable to examine neurotransmitters on a molecular level, and, to date, there is no known test to measure the functionality of a specific neurotransmitter receptor site, or brain chemicals such as GABA. And that wouldn’t much matter anyway, because it is not a deficiency in GABA that occurs when undergoing benzodiazepine withdrawal; it is the desensitization of the receiving area (receptor site) to which GABA binds in order to work when the body needs it. And the body only needs GABA in response to stimuli, which is all around us; light, sound, motion – even when we are sleeping—and stress. Both good stress (eustress) and bad stress (distress). More on how the GABA-A receptor site works will be available and posted in a link within this post in the near future.
With that in mind, we note the pharmacological properties of benzodiazepines:
- Muscle Relaxant
Some benzodiazepines may also have serotonergic properties indirectly. Despite our lack of ability to examine the receptor sites and neurotransmitters themselves, we know that down regulation occurs due to the above mentioned pharmacological profile of the drugs. The GABA receptor sites in the brain are so vastly numerous, and placed intricately through-out the body; not just limited to the brain— GABA receptor sites can also be located in other parts of the body, such as the gut. Modern brain function examination techniques such as PET (positron emission tomography) and SPECT (single photon emission tomography) measure neurotransmitter and receptor activity, while other tests that measure electrical activity may be less conclusive. PET and SPECT studies would prove to be very enlightening in the study of benzodiazepine withdrawal. However, no studies have been utilized using the SPECT nor PET examination techniques. This is something Ashton seemed perplexed about in her 2011 supplement. (And me, too! It would be rather interesting to determine just how extensive neurotransmitters have been ‘deactivated’).
Nevertheless, the idea of “permanent” brain damage would indicate the actual death of the receptor site, which contradicts the following statement from Ashton’s supplement: “Subsequent CAT scan studies in 1987, 1993, and 2000 failed to find any consistent abnormalities in long-term benzodiazepine users, and concluded that benzodiazepines do not cause structural brain damage, e.g death of neurones, brain shrinkage or atrophy etc.”
My Own Observations as a Patient and Participant in Support Groups
So as of the date of this journal entry, and with the information available to me, I have to point out that the theories I have developed are based upon anecdotal research and observation over a five year period of people who have been benzo free for anywhere between three and twelve years. My theories are also based upon my own personal experience. I was once on a low dose of a thienobenzodiazepine neuroleptic drug in 2003 for two months, prescribed because I had broken up with my boyfriend and was naturally depressed and anxious about it. Talk about fixing a minor problem using a major treatment with potentially severe risks associated with it. But what did I know? I was 16 in the year 2003. Anyway, when the drug gave me what I now know is extrapyramidal side effects of neuroleptics, I stopped it abruptly per the advice of my prescribing Psychiatrist. Despite stopping the drug, the Benign Fasciculations Syndrome (tiny twitchy muscle fibers) which I had developed while on it has never gone away. It was really annoying and scary at first, but it’s improved and gotten to be tolerable; like background noise. Yes, I still have it today. At first, it was more severe, for about a year – I had it checked out by a Neurologist in 2004 who performed an EEG and EMG which determined that the fasciculations (little localized twingey twitchy feelings of muscle fibers) were benign and of the Peripheral Nervous System in origin.
That said, this condition may not have had anything at all to do with the fact that the neuroleptic drug contained a benzodiazepine in its molecular structure, but it could have been a result of the sometimes permanent extrapyramidal effects of neuroleptic drugs themselves. And I’d say I got pretty lucky to have not developed a more severe permanent extrapyramidal side effect of a neuroleptic, like Parkinson’s Disease.
The people I have spoken to regarding symptoms that stuck around for them indefinitely after several years abstinence of benzodiazepines alone, were observed in a random setting in community settings, AA and NA meeting support groups, online communities, support forums, Facebook groups, Yahoo! groups… and even message board forums unrelated to benzodiazepine withdrawal which incidentally contained members who had developed symptoms that “never went away” after stopping their benzodiazepine (and often other psychiatric drugs, particularly SSRIs) three or more years ago.
Most People Report a full Recovery, but they often don’t come back to say so; people who do continue to have lingering symptoms are often not bothered by them
Based upon this anecdotal evidence and personal experience, it is my opinion that permanent damage can occur from benzodiazepine chronic use and withdrawal, but it is unlikely to interfere with daily living, and sometimes involves symptoms that usually originate in the PNS (Peripheral Nervous System). Additionally, the symptoms, while never seemingly going away altogether, become less and less bothersome as time passes.
The most frequent lingering protracted withdrawal symptoms I’ve noted consist of nervous system “hiccups,” such as:
- Neuropathic pain
- Fasciculations (localized twitching of muscle fibers)
- Blephorospasm (localized twitching of the eyelid; similar in pathology to benign fasciculations)
- Phantom pains in limbs or in tooth sockets where teeth are no longer present
- Visual disturbances such as occasional floaters or flashes of light.
- A return of symptoms in a severe form for a temporary time after reaching a “full recovery” after sustaining extreme stress or experiencing an adverse reaction to another drug or substance
- ….among other, often occasional subtle complaints.
The Peripheral Nervous System
To learn more about the what these PNS nerve images contained within the above diagram do, i.e., to find out what parts of the body these nerves affect, please follow this link to the parent page featuring this diagram.
Consistent with the most common longterm protracted withdrawal complaints, symptoms such as fasciculations and phantom pains, for example, can originate from the ulnar nerve and cranial nerves, but no one can say “Hey! Yeah, that’s where my symptom is originating from!” Because we simply do not know.
Of these symptoms listed, people seem to be most commonly affected by fasciculations and low level Tinnitus, and of all these, most say that the Tinnitus is the most bothersome. Tinnitus can co-exist with a phenomenon known as hyperacusis. Unfortunately, in my experience, hyperacusis is one of those symptoms that can be quite debilitating and last a long time, however, unlike tinnitus, I have never personally seen Hyperacusis become a “permanent” complaint among those benzo free for any longer than three years. It might stick around a while longer than most symptoms, but in my experience, not one of those permanent things…and the people who do experience it for a long time are often those people who have come off the benzodiazepine too abruptly. Does that mean that there’s someone out there who developed hyperacusis after stopping benzos and it never went away? It’s possible, but I’d hope there isn’t, because that’s a crippling symptom – trust me, it was my worst. More often than ANY other issues that seem to just linger on and on, ear problems and Gastrointestinal problems seem to be the most popular ones. Because benzodiazepines are ototoxic drugs, it may be wise to be evaluated by a healthcare provider who specializes in the Ear, Nose, Throat and Neurological system. This would be known as a Neurolotologist or Otologist. There are rehabilitative therapies that may help to improve your condition, such as Tinnitus Retraining Therapies, or TNT. If you live in the U.S., you may perform a search for one near you here. Another helpful and informative resource for tinnitus and hyperacusis is The Hyperacusis Network, a website founded and written by an inner ear specialist which also features a message board forum for people to chat about hyperacusis. And don’t just stop there – if you have continual problems after stopping your benzos, you may want to have it looked into by a healthcare provider or specialist if for nothing other than your peace of mind.
Cognitive Impairments over time?
Some people are complaining of very long term cognitive impairments, and people who may have never had a psychiatric or anxiety disorder prior to a benzo dependency are reporting to have developed one either while on or in the process of coming off/recovering from benzodiazepine withdrawal. Most report that it all eases with time but is always there in some subtle way or another, can be exacerbated by stress, the menstrual cycle or other factors, but it’s there where it was not before none the less. Perhaps the benzo withdrawal syndrome itself has traumatized the patient, perhaps the changes that occurred in the brain have caused these people to become more sensitive or prone to developing a psychiatric disorder; one can only speculate.
The long term cognitive impairments often seen develop during benzodiazepine treatment seems to be of great concern to geriatric healthcare providers. The University of California San Fransisco suggests long term usage of benzodiazepines can precipitate or worsen Dementia signs, or early stages of Alzheimer’s disease, by way of suppressing the brain on a daily basis by consuming, daily, a drug that does such. However, some argue that Alzheimer’s Disease/Dementia is more of a genetic predisposition: so if you already have a propensity toward it in your DNA, perhaps long term benzo use can accelerate its development. I personally have a mother who has been showing some signs of Dementia, and she’s only in her fifties, and what do you know? She’s been on Xanax for 11 years. Her mother, my grandma, in her 80s, also has advanced Alzheimer’s Disease, which may explain my mother’s hereditary signs that I have been noticing…. but wait, what do you know? My grandma has been on Valium most of her adult life, and is now taking Ativan daily along with her Aricept, a drug used to treat Dementia.
People With Lingering Symptoms and no Other Health Condition Sometimes Report Exacerbation by Stress
All of these things seem to be subtle, in my opinion, with the exception of times of extreme stress or some severe adverse reaction to a drug or substance after you’ve made a recovery from benzo withdrawal, and even those “relapses,” people often seem to recover from in a fair amount of time. There is no evidence that a severe withdrawal syndrome can be a permanent thing, but then again, no intense research with a high specificity for benzodiazepines (or antidepressants, etc) has really been done. We only go by what we witness, and this is often the case with healthcare providers as well – they only go by their clinical experience.
Because Professor Chrystal Heather Ashton ran a clinic with a high specificity for benzodiazepine withdrawal, she seems to have the most relevant data on the issue of any kind of long term issues that may arise from chronic benzo use.
But in my limited experience as a sufferer myself, I most often observe little annoying things – CNS hiccups – and brain farts – perhaps growing forgetful as you approach old age might be accelerated by benzo use and/or withdrawal.
So if you’re wondering if that severe symptom you’re experiencing is here to stay, get it checked out for all but your own peace of mind, but if it’s protracted withdrawal, then it is highly unlikely here to stay. Take heart, after surviving benzo withdrawal – any symptom that may (or may not) linger indefinitely should not be bothersome, often seems to improve with time, and will otherwise not harm you. Basically, it won’t affect your life in any significant way. At least, that’s the way I see it. Oh, and it’s apparently EXTREMELY RARE. I seriously had to do a lot of digging to find people who are benzo free for more than ten years that still have a lingering pesky little symptom hanging around that they did not have prior to withdrawal of their benzodiazepine.
A lengthy and severe withdrawal syndrome from any substance can be traumatizing emotionally, but that doesn’t mean you can’t bounce back. The human brain is quite a resilient organ, even if it doesn’t feel like it on some days.
Never be afraid to reach out for support and become an advocate for yourself and others
Being mentally traumatized by a messy or otherwise difficult experience with benzodiazepines, however, can and often does have its consequences. You may want to consider psychotherapies (with a therapist who has benzodiazepine and PWS awareness – sometimes you may have to inform them and bring appropriate informational material with you to educate them) if you feel you have been traumatized into a wreck over this mess.
Some great material compiled and made available by the author of the book, “Benzo-Wise: A Recovery Companion”, may help you help your healthcare professional have benzodiazepine awareness, and the information can be viewed, downloaded (as a *.PDF) and printed off as a single paged, easy-to-read pamphlet to bring to your physician and/or therapist here:
http://recovery-road.org/downloads-for-professionals/ — contained within the page is many links for your therapists and/or physicians. The Recovery Road website itself, is a great coping tool in its entirety; with advice, support and coping tools made available not only to sufferers but also to healthcare providers, and even support for family members, friends, and those people caring for someone who is benzo sick. Some of the words are spelled differently because this website and the people in the organization itself is based in the U.K.
Amnestic effects of benzos may be desirable for those wanting to forget their experience on the drugs
There are some theories among people who’d suffered severe benzo withdrawal for a long time with a belief that our bodies have natural ways of protecting ourselves from being traumatized by illness. Benzo withdrawal illness may be no exception; and many people who were once very, very sick who are now recoevered may never forget the severity of the pain they went through, but they may stow it away in a part of their memory that does not affect their day to day life in the present.
Generally, when you feel better, you tend to not dwell on the past trauma of benzodiazepines, though as stated previously, benzo withdrawal can certainly result in a Post Traumatic problem.
Perhaps the benzodiazepine amnestic effects themselves may work in your favor when it comes to the PWS. Benzodiazepines are often used as a mild anesthetic in surgery settings for this pharmacological property, but when people use benzodiazepines every day for months or years, they sometimes report that any grief or loss they may have suffered in the past was suppressed by the benzodiazepine and perhaps came rushing back in the form of “flashbacks” after discontinuing the drug. On the other hand, some people are saddened and speak of important parts of their lives, like weddings, birth of children, and other happy times, to be a complete blur that they have trouble recalling because they were on benzos when those happy times occurred.
I can speak from experience on this one as well as the next person – while I remember falling in love with my now fiance, and meeting him years before benzodiazepines became a regular part of my life, I do not remember the first time we ever exchanged our “I love yous,” because that’s around the time I was prescribed benzodiazepines for daily use after having adverse effects from birth control, which hung around for a few of my menstrual cycles. I’m personally confident that if I would have allowed my hormones to cycle out and find their balance again, I could have dodged the benzo bullet – but doctors were quick to sedate me on a daily basis, and while they helped for the first few weeks, the anxiety I experienced prior to becoming dependent on the benzos was nothing compared to the anxiety I developed after being on them daily.
Medications that “Change” bodily or CNS function after chronic use may all have the potential for a withdrawal syndrome
Certainly, it is possible that any withdrawal syndrome from any medication experience may have traumatized you or deeply effected your life in some way that requires help. There is no shame in that; this is serious stuff. However — Most, if not all people who have gone on to make a full recovery often forget about just how difficult the experience was.
I feel that it is important to note that many people suffering withdrawal syndromes from other types of psychiatric medication’s search engines are often directing them to this post. I am aware that this post is regarding benzodiazepines, but I would assume the same can be said for any type of withdrawal syndrome involving a drug that chronically alters any part of your brain’s functions.
And as much as I regret to say this, I have witnessed some people who have had an extremely protracted withdrawal from certain antidepressants; usually Paxil, Effexor, and other potent SSRIs. These people, experiencing a prolonged / protracted withdrawal syndrome of antidepressants (most often SSRIs) sometimes take a considerably longer time to report that they are feeling better than people who experienced the protracted benzodiazepine withdrawal syndrome. That’s the bad news. The good news is that these cases seem to be much more rare and I don’t hear about them nearly as often as I hear about protracted benzo withdrawal syndromes; and also, I have never heard of anyone NOT making an “acceptably” full recovery from any psychotropic medication except those poor souls who may have developed permanent extrapyramidal side effects, such as Parkinson’s or Tardive dyskinesia, etc. from neuroleptic drugs (antipsychotics). And, those extrapyramidal effects, while sometimes permanent, are often manageable as well.
This is why I feel that contacting a therapist to help you consciously work your way through the post trauma can be helpful; and because the post trauma may be specific to psychiatric medication, then it would make sense that psychiatric medication may not be helpful in treating this kind of post emotional trauma, but it’s ultimately up to you and your doctor to make that call.
This topic is not one that neither myself nor others prefer to discuss, because it’s not something we want to happen to us, or our loved ones. But I have unfortunately been hearing of folks who were two, three or more years off the drugs and still experiencing withdrawal symptoms. A small handful of these people are still experiencing protracted symptoms in some severe form. Some of them have considered reinstating psychiatric medication just to make those symptoms go away; being in complete disbelief that they could still be in recovery. That choice is ultimately yours; but please, before resorting to throwing away all of that effort to recover the “changes” in your CNS, remember that the protracted withdrawal syndrome can and sometimes does last years. That’s plural, years. Yes, I said years. Two? Three? Four? I’ve even heard of five in some tragic cases; but of those cases, I’ve not heard of anyone staying in a severe state of protracted withdrawal for much longer than that, and the healing of the damaged nervous system on a molecular level, where other factors can create variables (such as hormones that act on GABA receptor sites in women; e.g., progesterone) is so slow that many improvements may not be immediately recognized by the sufferer. Furthermore, it’s worth mentioning that the central nervous system is a complex system made up of very fine and tiny nerve fibers which are fragile yet resilient and recovery may occur in fits and starts; sometimes resulting in a non-linear timespan of having good days and bad days. This recovery pattern sometimes mimics Multiple Sclerosis, and some people I’ve spoken to even go on to become diagnosed with MS only for the MS symptoms to spontaneously disappear after they have made a recovery from benzodiazepine withdrawal.
Try to look back in your early days off; has anything gone or improved? Has it changed? for the worse, better? And if for the worse, could that mean you’re about to turn a good corner? There’s your signs, and sometimes you need to remind and/or inform your doctor and healthcare pros about the possibility of this phenomenon, and together, you all can decide what’s best for your future and your life after benzodiazepines.
And don’t forget to educate your mental health professionals about the PWS. Unfortunately, many of them are unaware of its existence.
In future posts, you may find polls designed for those who may feel like they have suffered permanent damage from benzodiazepine use and/or withdrawal. Please feel free to participate.